From Mother to Daughter: The Legacy of Undiagnosed Vitamin Deficiencies

Published on July 10, 2023

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This is a story of a mother with undiagnosed vitamin B deficiencies who gave birth to a daughter who was also born with undiagnosed vitamin B deficiencies. In the eyes of conventional doctors and labs, there was not much wrong with us, but we knew that life was harder than it should be. We lived managing debilitating dizziness, daily migraines, fibromyalgia pain, chronic fatigue, allergies, hormonal changes, anxiety, and depression. Until we discovered that we were both hypermobile with histamine issues, hypoglycemic, and had many vitamin B deficiencies. The biggest challenge was for my daughter to start taking thiamine (vitamin B1). Her heart rate was all over the place and she had such a bad paradoxical reaction to thiamine that we believe she had been living with undiagnosed beriberi along with POTS.

Mom’s Health Marked by Asthma, Anxiety, Migraines, and a Difficult Pregnancy

All I remember as a child is being afraid to talk in school even if I knew the answer to a question. I had allergies and could not exercise due to asthma. During college, I had to read over and over the same thing because I could not concentrate. I worked extremely hard because the fear of failure was too much to bear. I started to have hormonal imbalances and missing periods. I successfully finished college and moved away to another state. That is when migraines started. Later, I became pregnant with my first child and started having blood clots. Anxiety and depression would come and go with hormonal changes.

When I was pregnant with my second child, my daughter, I was sick every morning with nausea. After 6 months of pregnancy, I had gained only 6 pounds. Ultrasounds showed that the baby was growing normally, but I was losing weight. At that point, I also could see blood clots on my leg. I was placed on bed rest. By the 8^th month, my water broke and my daughter was born. She was jaundiced and placed under UV light for a week. I also stayed in the hospital for a week dehydrated, with blood clots, and with the “baby blues”. We left the hospital after a week, and she had a “normal” development. However, you could see that she was a baby that would not go with anyone, not even the people close to us, indicating some anxiety.

Daughter’s Early Health Issues: Selective Mutism, Asthma, Concentration Issues

When my daughter turned four years old, we moved out of state and that is when she stopped talking outside the house. I later found out that it is called selective mutism, a form of severe social anxiety. She started seeing a school counselor to try to help with her anxiety and self-esteem issues. I brought a girl scout group to my house so that she could start having friends and talk to others in her area of comfort. She also developed asthma and needed nebulizer/albuterol treatments frequently and daily QVAR for prevention. She was given Singulair, but it made her very depressed. Her grades in all classes were all over, from A to D. She would spend the whole time after school trying to complete homework, but she couldn’t. Her teacher told me that she really did not have that much homework. I would ask her to watch the dog eating and to take her outside as soon as the dog finished but she would be wandering around the kitchen and could not pay attention to the dog. Her neurologist gave her Strattera and that helped a little. Her EGG also showed some abnormal activity. The doctor recommended anti-seizure medicine and said that she was probably having mal-petit seizures. I refused medication based on how she reacted to Singulair and because the doctors were using words like “probably” and “just in case”. I kept an eye on her and noticed when she ate ice cream and got asthma. I had her stop sugars and dairy. Soon after that, a teacher called me, excited to tell me that my daughter was talking at school. She also was able to stop all asthma medication except for 2 weeks every year when seasonal allergies would hit. At this point, it had been already four years since she stopped talking outside our house. She started excelling in all classes and we were able to stop Strattera. However, the continuous anxiety remained.

The Teenage Years: Continuous Migraine, More Medications, and No Answers

At 16 years old, she got a cold that turned into asthma with a continuous headache that just would not go away. She started waking up every day with a migraine, depressed with no energy. We had to wait three months to see a pediatric neurologist. Meanwhile, I would take her to my chiropractor early in the morning, give her an Excedrin, and she would go to school whenever she felt better. She began drinking at least 2 cups of coffee every day to help with the pain. Sometimes she would go to school at 11am, sometimes at 1pm. Even if there was just one class left, she would go to school. At this point, she felt that she wouldn’t have a future.

When we finally went to the neurologist, he recommended amitriptyline. I had been on amitriptyline and woke up one day not knowing which year or season was, but I was told that the issue was the high dose given to me (125mg), after decades of it increasing it every year. I agreed as long as it was a low dose. Amitriptyline lessened the continuous headache, but it was not really gone, and she still needed some Excedrin. She started daily aspirin as well. She was just getting by day to day trying to manage her pain and mood and trying to have a normal teenage life.

Increasing Weakness When Outdoors: Untangling Root Causes

She became very weak whenever we would go to the beach or to a park. We would have to drag her indoors and give her water. On some occasions, she would say that she could not see. Somehow, she successfully managed to graduate from high school. We started seeing functional doctors. We found that she had some variants related to mitochondria dysfunction, but we really didn’t know how to address this. We also found out that she had Hashimoto’s and antibodies against intrinsic factors, which was indicative of pernicious anemia. We knew right there, that she had issues that conventional doctors had missed.

We also did a Dutch test and found that all of her hormones were high. The functional doctors suggested sublingual B12, folinic acid, and a B complex. She said the vitamins made her feel awake for the first time. However, chronic fatigue was still a major struggle for her. Eventually, she had to stop folinic acid because it made her depressed and unmotivated. Meanwhile, she managed her anxiety with herbs, but it was a real struggle. She also continued to have asthma requiring albuterol every fall season. She chose a very challenging career in cell biology with biochemistry. She went through college with many cups of coffee just to control migraines, have energy, and be alert.

Discovering Her POTS Symptoms

The summer of 2019, before her senior year of college, the nurse checked her vitals as part of her new summer internship. The nurse thought the pulse monitor was broken because her heart rate was 120 sitting down. After a few minutes, it went down to 99, so the nurse dismissed it. When she told me that, I started paying attention to her heart rate. We went to her physician and neurologist and in both instances, her heart rate was 100, just sitting down waiting for the doctor. I asked if it was normal, and they said that it was in the upper range but not a concern. I was still concerned and made an appointment with a cardiologist but also bought her an iwatch. She noticed right away how her standing heart rate would be over 100, and by only taking a few steps, her heart rate would go even higher and she would become fatigued and even dizzy. From the heart rate monitor on her iwatch, we could see how quickly her heart rate would climb upon standing and then slow a bit when sitting.

That is when I remember that I have read about POTS and hypermobile people. I remember that when she was a child, the neurologist had said that she was hypermobile, but never said that it could be a problem for her. It just seemed like a fun thing to have. I started asking in health groups and someone mentioned that her medications could also cause high heart rate. I searched and amitriptyline did have that side effect. That is when my daughter showed me that her resting heart rate was in the 90s and it would fluctuate from 29 to 205 without exercising. When we went to the cardiologist and explained all of this, he said that he did not even know how to diagnose POTS because it is rare. He did testing and said that the heart was fine but there was some inefficiency due to some valve leaking but that it usually does not cause symptoms. I asked about amitriptyline and he confirmed that it could raise heart rate. At that point, she stopped amitriptyline and her maximum heart rate was 180 instead of 205.

She went back to her last year of college when Covid hit. She came back home and we could see the lack of energy and how much doing any little thing or stress would crash her for days. Since I needed glutathione for chemical sensitivities, I decided to see if it would help her. Glutathione with co-factors helped her recover, instead of crashing for days, she would recover the next day. That is when she told me that every time she walked to school, she felt that she would pass out. When she gets up in the morning, she ends up lying on the floor because of dizziness. Despite her dizziness, daily muscle pain, daily migraines, and chronic fatigue, she had big dreams. She just kept pushing through day by day, with coffee, herbs, and whatever it took, but she knew that something had to change. She successfully graduated in May, Magna Cum Laude, and she had a couple of months to deal with her health before she would leave to start her graduate studies and research job. That is when I found people that knew about Dr. Marrs’ work and thiamine, and her life finally changed.

Introducing Thiamine and Other Micronutrients: Navigating the Paradox

A functional doctor recommended magnesium and niacin for her migraines and they significantly helped. This gave the functional doctor the idea to try tocotrienols. High doses of tocotrienols worked better for reducing her migraine pain than amitriptyline and aspirin combined. Then she started taking high doses of B6. This helped her muscle pain and improved her mobility. Despite being hypermobile, easy stretches gave her intense muscle cramps prior to starting B6. Guided by very knowledgeable researchers belonging to Dr. Marrs’ Facebook group, Understanding Mitochondrial Nutrients, we started Allithiamine. The first thing she said was “wait, the sun does not hurt?”. I asked her what she meant. She explained that all her life, being in the sun gave her pain in her eyes and forehead and that she couldn’t understand why people wanted to be outside. No wonder she never wanted to go outside. She also said her migraines were gone. We have waited 4 years to hear that!

After just a couple of days, she started having a lot of nausea and lower-intensity migraines returned. The researchers knew right away that she needed more potassium. She started to eat apricots, coconut water, or orange juice every time she had nausea and it helped. However, it was happening every hour so we decided to try a different Thiamine. We tried half Lipothiamine and Benfotiamine but she didn’t feel as much benefit and still gave her issues. We went back to 1/10 of Allithiamine. Chatting with the researchers, one asked if she also experienced blinding episodes. Yes! Finally, someone that knew about that! They recommended B2 and we started it. That’s when we discovered that her pain in the sun and dizziness were caused by a B2 deficiency. She continued waking up with crashes needing potassium every hour. She did not sleep that week. The researchers suggested taking cofactors including the rest of the B vitamins, phosphate salts, phospholipids, and beef organs. Beef organs and phospholipids helped with energy and bloating, phosphate salts helped with nausea and irritability.

Then researchers suggested that she needed to stabilize sugars and have more meat. That is when we realized that she had some type of hypoglycemia. We had noticed that she would get very tired and got shaky hands if she didn’t eat. Functional doctors had mentioned that she may have reactive hypoglycemia since she had a fasting glucose of 70. She started having more meat to stabilize her sugars and removed all packaged foods, sugars, grains, and starches. She started having just fresh meat, veggies, rice, beans, nuts, and berries. She felt that she was so much better with beef that she started using it for potassium between meals and bedtime.

She was able to increase allithiamine little by little. She would mix a little bit with orange juice since it tasted so awful. Little by little, she started having fewer crashes and feeling better. It took a month for her to be able to tolerate one capsule of Allithiamine. She was sleeping more but not the whole night. That is when our functional doctor suggested supporting adrenals. That really helped but then she began having stomach pain and nausea after eating beef and developed frequent diarrhea. Chicken always increased her hunger and reduced her energy compared to beef and but now she was afraid of having beef. She stopped all sources of beef and phospholipids.

We consulted a very good functional doctor. She did Nutraeval and confirmed that all her B vitamins were low or deficient and recommended TUDCA and Calcium D Glucarate along with trying lamb and bison first. Both helped in reducing bloating/nausea and she was able to start eating lamb and bison along with reintroducing a minimal amount of carbs. Soon after, she was eating beef again with no pain. After starting TUDCA, her bilirubin levels were normal for the first time in her life. We continued to work with the functional doctor to fix other deficiencies.

Recovery from Multiple Nutrient Deficiencies and the Prospect of a Normal Life

After Allithiamine and vitamin B2, we worked with our functional doctor to balance the remaining B vitamins. She is now able to go out in the sun without bothering her eyes and without passing out. She gained weight after starting the B vitamins and began looking healthier, compared to how skinny and underdeveloped she looked before. She also learned how to manage electrolytes. She sometimes needs more sodium, but other times needs more potassium. She feels sick when electrolytes get out of balance. Although she still had some continuous pressure in her head, she no longer needs any amitriptyline, aspirin, or Excedrin for pain. One thing that remained problematic was folate deficiency. She still became depressed with folinic acid, so she tried methylfolate instead. She felt so unmotivated that preferred not to have it, but she realized that it was key to something that she struggled with all her life: anxiety. She figured that she could have methylfolate every other day, so that she could have less anxiety.

Now, for the first time, she began to have a normal life. She can now exercise daily without dizziness and her heart rate skyrocketing. Her heart rate in general is more normal, doesn’t go down to 29 or up to 205. She had not had any asthma requiring albuterol. She started driving without having to deal with anxiety and panic attacks. She was able to walk to her office without fainting. She now can now live alone dealing with the stress of having a full-time job, graduate classes, cooking her food, and exercise every day! She is not cured completely but for a person that once thought she couldn’t have a future, she is doing pretty darned good!

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This article was published originally on July 22, 2021.

Atomic Imprint: A Legacy of Chronic Illness

by Genie

Published on May 18, 2023

8093 views

In a sense, my complicated health history began a decade before I was born. In 1951, on a chilly pre-dawn morning in Nevada, my father-to-be crouched in a trench with his Army comrades and shielded his eyes with his hands. Moments later, an atomic blast was detonated with a light so brilliant that he could see the bones in his hands through his eyelids, like an x-ray. The soldiers were marched to ground zero within an hour, exposing them to massive amounts of radiation. My father suffered many physical issues and died of chronic lymphocytic leukemia at 61 – a far younger age than usual with this disease.

Many of the soldiers exposed to atomic tests and military radiation cleanup efforts paid dearly with their health, and the legacy was passed on to their offspring in the form of miscarriages, stillbirths, deformities, retardation, childhood cancers, and chronic health issues. I never wanted children, in part because I was concerned that my own genes were affected by my father’s radiation exposure.

Early Markers of Ill Health

Physically, I didn’t feel right as a child. I had mononucleosis as a baby and needed a prednisone shot to get well. I was sick often and lacked stamina. I had mono again in high school and relapsed in college.

I fared well as a young adult, but then hit a wall in my mid-30s when I suddenly became chronically ill with digestive issues, insomnia, brain fog, and fatigue. A hair test revealed off-the-charts mercury poisoning, so I had ten fillings replaced and detoxed. All my hormone levels crashed, so I went on bioidentical hormone replacement therapy for a time. I recovered quickly but adrenal and thyroid hormone support were still necessary. I even fared poorly with the ACTH cortisol stimulation test to assess for adrenal insufficiency (“adrenal disease” beyond so-called “adrenal fatigue”).

In 2001, a DEXA scan revealed I had osteopenia at just 40 years old and I tested positive for elevated gliadin antibodies, a marker for celiac disease, the likely cause of the bone thinning. I went gluten-free and began lifting weights – thankfully, my bone density resolved. I shifted away from a vegetarian diet and gained muscle mass and energy.

Over the next several years, I had bouts of “gut infections,” resolving them with herbal antimicrobials. About a decade ago, the dysbiosis flares became more frequent and difficult to resolve. I tested positive again for mercury. This time I did the Cutler frequent-dose-chelation protocol and reduced my mercury burden to within normal levels according to hair tests.

A Labyrinth of Health Issues

My health issues were becoming more numerous, complex, and difficult to manage as I grew older. Besides the persistent sleep and digestion issues, I often had fatigue, pain, bladder pain, urinary frequency, restless legs, migraines, Raynaud’s, chilblains, and more. Managing all these symptoms was a real juggling act and rare was the day that I felt right.

As I searched for answers, I turned to genetic testing, starting with Amy Yasko’s DNA Nutrigenomic panel in 2012 and then 23andMe in 2013 to learn which “SNPs” (single nucleotide polymorphisms) I have. A Yasko-oriented practitioner helped me navigate the complexities of the nutrigenomics approach – that is, using nutrition with genetic issues.

I learned that genes drive enzymes that do all the myriad tasks to run our bodies (which don’t just function automatically), and that certain vitamins and minerals are required to assist the enzymes, as specific “cofactors.” Genetic SNPs require even more nutritional support than is normal to help enzymes function better. So my focus shifted toward using basic vitamins and minerals to support my genetic impairments. I now understood that I needed extra B12, folate, glutathione, and more. I began following Ben Lynch’s work in elucidating the MTHFR genetic issue, as I had MTHFR A1298C.

Also in 2013, given my struggle with diarrhea, I was diagnosed with microscopic colitis via a biopsy with colonoscopy. In 2014, I learned about small intestinal bacterial overgrowth (SIBO), which gave me a more specific understanding of my “gut infections,” and tested positive for methane SIBO. I worked with a SIBO-oriented practitioner on specific herbal treatments with some short-lived success.

At the end of 2014, I learned that I have Ehlers Danlos Syndrome (EDS, Hypermobile Type), confirmed by a specialist. I came to understand that my “bendiness” likely had implications in terms of chronic illness, and I saw my bunion and carpal tunnel surgeries in a new context, as part of this syndrome.

Even with these breakthroughs in understanding, I still relentlessly searched deeper for root causes.

Genetic Kinetics

In 2018, Ben Lynch published Dirty Genes, focusing on a number of common yet impactful SNPs.

I learned that I had NEARLY ALL of these SNPs – NEARLY ALL as “doubles” and even a “deletion.” (Deletions are worse than doubles; doubles are worse than singles.) Researching further, I had doubles in many related genes with added interactive impacts. Typically people might have just a few of these SNPs.

Understanding my “dirty gene” SNPs revealed that I could be deficient in methylation, detoxification, choline synthesis, nitric oxide synthesis, neurotransmitter processing, and histamine processing. Each of these SNPs could potentially impact sleep, digestion, and much more in numerous ways. Now I potentially had a myriad of root causes.

Lynch warns people to clean up their health act before supplementing the cofactors, whereas I’d cleaned mine up years prior. Sadly, I found only limited improvements in adding his nutritional protocol. Suffice it to say I felt rather overwhelmed and disheartened.

But at the same time, I gained vital and necessary insights. I now understood why I had mercury poisoning twice: detox impairments. I understood why I had Raynaud’s, chilblains, and poor circulation: nitric oxide impairments. My migraines could be histamine overload. I needed high levels of choline for the PEMT gene to prevent fatty liver disease and SAMe for the COMT gene. Much was yet still unexplained. So I relentlessly soldiered on, following every lead, clue, and a new piece of information.

Later in 2018, a friend who also has EDS encouraged me to learn about Mast Cell Activation Syndrome (MCAS), as many with EDS also have this condition. A few weeks later, I had a three-day flare of many issues, which prompted me to delve into the MCAS world, which was just as complex as the genetic approach. In working with an MCAS specialist, I honed in on three supplements, quercetin, palmitoylethanolamide, and luteolin, to help stabilize mast cells, which improved my bladder pain, bone pain, migraines, fatigue, and generalized pain. This was the culmination of months of research and work. All of this points to further genetic involvement, even though I lack specifics.

Downward Spiral

Twenty-nineteen brought further insights. I integrated circadian rhythm entrainment work. I tried a low-sulfur diet, suspecting hydrogen sulfide SIBO, which made me feel worse; and I began taking dietary oxalates somewhat more seriously after testing positive on a Great Plains OAT test. I did glyphosate and toxicity testing, which provided a picture of my toxic load. Testing also indicated high oxidative stress and mitochondrial issues (very interrelated). Hair Tissue Mineral Analysis (HTMA) testing, with the assistance of a specialist, helped me understand my mineral status and to begin rebalancing and repleting.

In 2020, I took a hiatus from all this effort, during which time I turned my attention towards personal matters, but 2021 has been a doozy in redoubling my health efforts. My digestion had worsened, so I focused on this area. I learned about sucrase-isomaltase deficiency, a lack of certain enzymes to digest sucrose and starch. I hadn’t tolerated sugar and starch for years, and I found I had a SNP for this condition. In January, a zero-carb trial diet helped me feel much better, so I continued. I tested positive for hydrogen sulfide SIBO, and I wrestled with this “whole-other-SIBO-beast” – in February trying again the low-sulfur diet and again feeling worse. Combining the zero-starch and low-sulfur diets left few options. Despite all my best efforts, I experienced a downward spiral with a loss of appetite, nausea, and vomiting every few days.

Discovering Thiamine

Around this time, I read an article about low thiamine (Vitamin B1) lowering intracellular potassium – I had been trying unsuccessfully to raise my potassium level in my HTMA work. I began following author Elliot Overton’s articles and videos on thiamine deficiency and oxalates. I was finally persuaded to take oxalates seriously. I then read the definitive book “Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition” by Drs. Derrick Lonsdale and Chandler Marrs. I learned how B1 was key in many processes involving energy, digestion, and much more. I found that I had multiple SNPs in the B1-dependent transketolase gene, which is pivotal in several pathways. I gained some understanding of how all this related to some of my other genetic impairments, and why I might need high dose thiamine to overcome some issues.

All this was quite a revelation for me. It fit perfectly with my emphasis on vitamins and minerals to assist genes…but why hadn’t I learned of B1’s significance sooner?

In early March, I began my thiamine odyssey with 100 mg of thiamine HCL, upping the dose every couple of days. At 300mg HCL, I added 50 mg of TTFD, a more potent and bioavailable form of B1, then continued to up the TTFD dose every few days.

Similar to my experience with other vitamins, I was able to proceed rather quickly in dose increases. Many other people are not so fortunate and must go much more slowly. I already had in place most of thiamine’s cofactors (such as glutathione, other B vitamins, and methylation support) – so perhaps this helped me proceed more readily. Without these cofactors, peoples’ thiamine efforts often fail.

Magnesium is one of the most important thiamine cofactors, and for me, the most challenging. My gut cannot handle it, so I must apply it transdermally two or more times a day. At times, I had what I interpreted as low magnesium symptoms: racing and skipping heart, but these resolved as I continued.

Additionally, one must be prepared for “paradoxical reactions.” Worse-before-better symptoms hit me the day after thiamine dose increases: gut pain, sour stomach, headache, fatigue, and soreness.

My symptoms improved as I increased the dosing. When I added 180 mg of benfotiamine early on, my bit of peripheral neuropathy immediately cleared. This form of B1 helps nerve issues. As I increased my thiamine dosing, the nausea abated, my appetite came roaring back, and gastritis disappeared. Diarrhea, fatigue, and restless legs improved. I was able to jog again. My digestion improved without trying to address the SIBO and inflammation directly; the strict keto and low oxalate diets may have also helped.

In June, I attained a whopping TTFD dose of 1500 mg but did not experience further resolution beyond 1200mg, so I dropped back down. At 1200mg for a month, a Genova NutrEval test revealed that I was not keeping pace with TTFD’s needed cofactors, especially glutathione and its substrates. Not too surprising, given my malabsorption issues and my already high need for these nutrients. I dropped the TTFD to 300 mg, but quickly experienced fatigue. I’m now at 750 mg, which is still a large dose, and clearly, there is more to my situation than thiamine can address. I still have diarrhea and insomnia, and continue working to address these.

The Next Chapter

With TTFD, its cofactors, and my new gains in place, I’ve turned my attention towards a duo of genetic deletions that I have in GPX1 (glutathione peroxidase 1, one of Lynch’s dirty genes) and CAT (catalase). Both of these enzymes break down hydrogen peroxide (H2O2), a byproduct of numerous bodily processes. This unfortunate double-whammy causes me a build-up of damaging H2O2 and lipid peroxides – in other words, oxidative stress, a major factor in mitochondrial impairment, many diseases, and aging. This might be one of my biggest and yet-unaddressed issues, and I am digging deep into the published medical literature. This new chapter is currently unfolding.

I believe these two deletions are related to my father’s radiation exposure, for reasons beyond the scope of this article. But what about all the other SNPs? Many questions remain unanswered.

All my gains have been so hard-won, involving much research, effort, and supplementation. Yet what other options do I have, besides playing whack-a-mole and spiraling downward? Looking back, my improvements have been substantial, given the multitude of issues I’ve had to deal with. Perhaps now at 60, my life can start to open again to more than just self-care.

I hate to think of where I would be now, had I never come across the thiamine deficiency issue. I believe a number of factors had driven my thiamine status dangerously low earlier this year, such as malabsorption, oxidative stress, and hydrogen sulfide SIBO. I’m forever grateful to Lonsdale, Marrs, and Overton for their invaluable thiamine work that helped guide me back from the brink, and to the numerous doctors and practitioners who have helped me get this far. Perhaps my story can help others struggling with chronic health issues.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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This article was published originally on September 23, 2021.

Solving the Medically Unsolvable: Thiamine, Oxalates, and Other Complicated Health Issues

by Elaine Sullivan

Published on January 12, 2023

44833 views

solving the medically unsolvable thiamine

Welcome to a very complex tale of connecting dots between life long symptoms and a current state of severe food intolerances and vitamin deficiencies. Outside of the food safety zone, my symptoms become so severe that I cannot function. Within, there are some symptoms but very tight regimes of high maintenance food prep, supplements and lifestyle strategies keep life manageable, gratefully, without medications.

I learned how to keep these symptoms under control through health groups on Facebook, not a place one would expect to find health answers, but when doctors fail, patients like me are left with little recourse. We either remain ill or we figure it out ourselves. It seems there are many of us in the same situation, saddled with complex conditions for which doctors have little input. Modern medicine seems to have little to offer in disordered energy metabolism (affecting every system), ailing mitochondria, and vitamin deficiencies. My doctor trained in GI disorders missed the fact that my gut was causing migraines for the same reason my neurologist did, compartmentalization. Neither considered mitochondrial dysfunction. Neither considered thiamine or other nutrient deficiencies. I had to figure that out myself.

Early Childhood Memories: Longstanding Symptoms

As a little girl there was no need for me to speak because I got everything I needed through my sister. This resulted in a spell at Easter Seals, an institution for those on the autism spectrum. When I hear of delayed speech in children today I think, “Oh, the Feingold website and diet”. Delayed speech, hyperactivity, red ears or flushing—a low salicylate diet can help. I wish my mom had known about the Feingold organization, but they didn’t yet exist.

During gym class, my teacher running cold water over my wrists in the bathroom to try to turn the color of my face back to a lesser shade of crimson. An EKG revealed nothing and I was told to drink more fluids.

There was also walking and talking during sleep and then the dreaded sleep paralysis. I had a fabled allergy to a chocolate Easter basket. Then dyslexia showed up when I first tried to draw my letters.

In school, I struggled to hide my loud stomach gurgles and painful hiccups. Semi regular digestion disasters ruined some special occasions, but all was still under the radar. Painful calf muscle cramps were in the middle of the night, so no one knew and they wouldn’t have been recognized as a mineral deficiency anyway. As an adult my calf muscles were extremely tender to the touch, which, I now know, points to thiamine deficiency.

The most obvious harbinger of future troubles was motion sickness. Struggling to not barf in the back seat of our station wagon. Should I look at my coloring book, at the road, at my legs? Those symptoms haven’t changed in 40 years, I noted on a recent windy drive up to Kings Canyon. That same reaction, tunnel vision, dizziness, and nausea, has been triggered for me on perfectly level ground. It comes from chemicals called amines found in common foods such like bananas.

Persistent and Increasingly Complex Symptoms in Adulthood

Alcohol Intolerance and Arrythmia

I often witnessed my intolerance to alcohol, but didn’t think of it as a symptom. That facial flushing happened multiple times every day and it was impossible to pinpoint all the triggers until I learned about histamines. It didn’t actually hurt, but left me exhausted, because along with it came “The Throb”. This is a feeling of my heartbeat all over the upper half of my body, but different and with a broader reach than my usual variety of heart arrhythmias. I remember a physical therapist refused to work on me until I saw a doctor because my carotid artery was pulsing so visibly that it scared her. The ultrasound came back normal. I still have the throb intermittently everyday and now I understand it, like disordered sleep, to be a symptom of dysautonomia, another sign of thiamine deficiency.

Post Food Coma

I used to fall asleep while driving, always post-snack. I fell asleep while talking to my fiancé’s parents—after a meal of pizza. If I were to eat dairy right now, I would be asleep within 30-40 minutes. Unlike a nap, it feels like I have been drugged. Richard Deth is the doctor whose studies showed why casein and grain-free diets work for the autistic population, and thus, many in the chemically sensitive population as well. It has something to do with peptides crossing the gut barrier (leaky gut) and hitting opioid receptors. I trusted that his research spoke to my symptoms when a Google of opioids showed somnolence and constipation are the first two symptoms. There are other competing theories, though. That thiamine deficiency has created a state of hypersolomnence well described in this article due to pure lack of ATP. It has also been suggested that I’m so low in B2 and B12 that I can’t make melatonin, so one hit of dairy is a shock and the newly created melatonin suddenly makes me sleep. I’m not sure how that could tie into the constipation, though. Yet another connection to my known low folate status is that cow’s milk down regulates folate receptor autoantibodies (FRAs), so going dairy free is very important. It may be that all of these items contribute. Whatever, the cause however, falling into a dead sleep upon eating is not healthy and something I had to figure out.

From High Grain Pescetarian to Low Carbs and High Fat

In an effort to overcome some of my symptoms, in 2010 I went from a high grain, mostly vegetarian diet, to a more primal or Paleo diet. With this diet change, I thought I was finally on the right path to health because so many of my symptoms suddenly disappeared. The one I was happiest to leave behind was a painful condition called Interstitial Cystitis (IC). My skin was perfectly clear for the first time in adulthood. I was less anxious, with no panic attacks or depression like before. I felt full all the time and lost weight easily. I attribute those positive changes to removing grains (for my SLC19A1 glitch), processed foods (my latent salicylate sensitivity) and some improvement in B12 levels (depression) due to the addition of red meat.

Unfortunately, some darker changes were happening that took me years to connect to this diet. Terrible neck and shoulder pain and new insomnia with an “electric vibration” lead me to a diagnosis of spinal stenosis. PMS symptoms and migraines were suddenly more frequent and worse. It took me years to figure this out, but what I finally determined was that I was making and storing a lot of oxalates, the mineralized crystals best known for kidney stones.

This all makes sense to me now in terms of oxalates. Susan Owens, from the Trying Low Oxalates (TLO) group often talks about how IC can be the oxalates “speaking to us” and although painful, it is better that they are moving out rather than moving into cells or into bones for storage. I believe that my body switched from “excrete mode” for oxalates and into “storage mode” due to something about my diet change. It could be that the higher fat content created oxidative stress which started or increased the endogenous production of oxalates that I tested positively for years later. I never would have guessed my bone spur was from nutrition or disordered metabolism. My doctor and I had blamed some unremembered injury from yoga practice. I have a PubMed case study of spinal stenosis with photographs inside the bone spur showing millions of oxalate crystals. When I dump oxalates, and when I am not doing well in general, I have right side nerve pain (the side of the stenosis) that could additionally be demyelination from low B12. I’ve found topical magnesium is magical for this, thanks to the TLO group.

The increase in PMS symptoms was also oxalate related. I had always come down with IC right before my period and it makes sense that the body would take advantage of the cyclic aspect of menstruation to ditch oxalates and many other TLO group members confirmed this experience. I recognized all my PMS symptoms in a TLO file about the variety of ways our bodies “dump” oxalates.

2012 1^st Health Crisis: SIBO, Migraines, and More

After 6 years of eating “Primal”, I moved out of state and had a disabling increase in migraines, insomnia, flushing, dizziness, light sensitivity, fatigue, and heart palpitations. Doctors and normal test results were not helpful. I ended up on low dose Amitriptyline (a strong antihistamine), which put my sleep back in order and allowed me to work again. The worst of the problem was solved until I learned that anticholinergic has the word choline in it, so this drug is terrible for the mitochondria. This 3 year long mistake is so typical of what can happen when laypeople have to take charge of their own health.

Another diet-induced problem: After years of eating like this, I was only able to go to the bathroom once every 5 days, with tears in my eyes. I saw myself in a description of SIBO—Small Intestinal Bowel Overgrowth. A GI doctor agreed and I tested positive. I found thousands of people on SIBO Facebook groups not getting better with antibiotics, so I waived off his recommendations. Reintroduction of potatoes and supplementing with resistant starch corrected the problem—thanks, Internet. If only I had read Paul Jaminet’s warning about low carb diets years earlier. Later, I noted that my GI doctor’s recommendation of Miralax for constipation would have made me so much worse, as it contains polyethylene glycol, a derivative of ethylene glycol, the main ingredient in antifreeze, and a quick way to fill your body with oxalates.

At this time though, I had no idea what histamine, oxalates or salicylates were. I had tried a food journal for migraines, but my neurologist told me to only watch for cheese and wine. Well, there are a whole lot more foods than that in a histamine foods list, not to mention other chemical categories. Foiling my journal attempts was also the bucket theory. Once emptied, by a migraine for example, I was able to consume high histamine foods without any problem. It is the build up over time that leads to the bucket “spill over”. Hence, my pattern of fine health and digestion at wedding rehearsals, but then sick at the actual wedding the next day—my bucket had filled.

I was eating very “clean” and I thought healthfully. I enjoyed avocado, cactus paddles, eggs, onions, bell peppers spinach, sausage etc. for breakfast. Assorted root vegetables roasted in duck fat. 2 iced coffees per day. Snacks of Greek yogurt with fresh berries and local dates. Sweet potato roasted in orange peels, braised meats, dark chocolate and nuts. Ninety percent of my food was homemade. I always had frozen homemade soups and chili on hand plus I dabbled in fancier recipes from magazines. Although I had cut out grains and processed foods, the variety I was eating and my cooking skills were growing every year. In the next three months, my out of control reactions would cause me to take a quick but deep slide down the elimination diet rabbit hole, and land with only 12-15 safe foods.

The 2015 Crash: Salicylate Sensitivity, Tinnitus and Migraine

With the notion that my migraines, flushing and stomach gurgles were tied to the SIBO, and that natural antimicrobials were safer than antibiotics, I embarked on a high dose oil of oregano (a high salicylate) treatment to kill the SIBO with a Registered Dietitian. I can’t blame her, as neither of us knew that my previous occasional ear ringing and swollen eyelids were signs of latent salicylate sensitivity, nor that it was common in those with early speech delay. I had a terrible time on the oil of oregano, but stuck with it through the abnormally long protocol, because I was told to expect symptoms of “die off”. That period was like one long migraine with breaks only for prodromes, in which tiny flashing lights in my peripheral vision combined with distinct feelings of disassociation. I was poisoning myself, taking in chemicals that my body could not detoxify quickly enough. During the last week of treatment, I connected one stomach reaction to a high histamine meal and read everything I could about Histamine Intolerance. Immediately I stopped eating all high histamine foods and began to take supplements known to help—vitamin C and quercetin. I stopped the Amitriptyline once I read that it suppressed DAO production, an enzyme that degrades histamines. I continued to eat dates and raw honey until I tied the honey to another massive migraine (salicylates). A dear stranger on the Histamine Group pointed out to me that tinnitus is usually a salicylate symptom and not a histamine symptom.

I joined the salicylate group and started lowering salicylates in my diet. It seemed impossible to tell what I was reacting to. I stopped all supplements, I quit all caffeine and started eating from the “Fail Safe” diet lists. I changed all personal care products to salicylate-free. This started to calm my system down. The thing they don’t seem to know or mention at the Failsafe is that when you start dropping foods and you don’t know that you have an oxalate issue then you can accidentally trigger an oxalate dump, which can be very dangerous.

Now the high dose vitamin C was kicking in and creating more oxalate problems, as it can convert to oxalates in the body within two weeks. My body was out of control. Ears were ringing off the hook. The “throb” and abnormal heart palpitations were magnified 10 fold. I was in a 2^nd full blown health crisis, unable to work. Sleep, migraines, palpitations, tinnitus became unbearable. The ear pressure felt like my ears were blocked. After a 6 year hiatus, my painful IC was back every evening.

The quercetin, a methyl donor, had been building up as well. The worst night I woke every 40 minutes or so throughout the night from night-terror-dreams with my heart pounding so strongly that it made me feel nauseous. I had one strange day where my throat tightened up, but a cold never developed. I dropped and broke three plates and two drinking glasses in 3 days. I experienced high anxiety and could not drive on a freeway. I had to go through this type of experience two more times before I learned that it was due to methyl donors. The last time it happened, I burst a blood vessel in my eye. A hard-won PSA: you can potentially stop a methylation crisis with Niacin.

On April 30th, I saw an ear/hearing/allergy specialist who said my hearing was still good, and to see my neurologist about the tinnitus. I did two things that turned the sinking ship around that day. I ate a meal of all high ox foods, which stopped my giant ox dump. The nightly interstitial cystitis symptoms disappeared. Second, I restarted the Amitriptyline and finally began to stabilize and sleep through the night.

Post Health Crisis

This is what I have learned so far:

If I eat or touch high salicylate plants, my ears get short bursts of ringing plus a different type of tinnitus at night—pulsatile, so that I cannot keep my head on the pillow. I also get swollen eyelids with dark circles underneath. It can quickly turn into styes and blepharitis. Before I learned how to control it with diet, I got peeling lips, watery, itching and red eyes, excessive thirst, and feelings of dissociation before migraines. Also, insomnia and inner ear drainage feelings.
If I eat high histamine foods I get migraines as well as stomach bloating and loud gurgles followed by hiccups, light sensitivity, heart palpitations, stuffy nose during and after eating, and dizziness upon bending over. From some chemical smells I get a spot on the back of my neck that will start itching like crazy. The same spot I scratched as a child. I found my chronic low blood pressure to be associated with migraines as well.
If I eat high oxalate foods I get a return of the interstitial cystitis and dramatic muscle cramps.
If I eat dairy I either fall asleep or suffer severe brain fog within 40 minutes, plus constipation the next day. If I eat it consistently, the interstitial cystitis returns, I think due to fat malabsorption.
If I eat white rice or raw fish, I get sciatica pain at night, due to the drop in thiamine. (Interesting that German doctors systematically prescribe thiamine for sciatica pain)
If I eat fruit or any simple sugars, I get bloating and stomach gurgles. This could be a result from the simple sugars “popping” thiamine out of cells.

“The Killer Strategy” and Another PSA

I returned to my GI doctor for help, thinking that SIBO was the root of all my food intolerances. Begrudgingly, I took his antibiotic, the standard for SIBO treatment. My last appointment with him was the day he recommended a second round of Rifaximin after the first had left my test numbers 4 times worse.

The risk with antibiotics is that each time a round is taken, good bacteria that help produce thiamine and other vitamins, get wiped out with the “bad”. What if in SIBO, the bacteria are moving from the large intestines into the small to help us? Maybe they are sent to help digest our foods because our vitamin levels are not sufficient enough? Susan Owens regularly cautions our group,

“Please remember that these microbes compete for turf and form alliances. Antimicrobials do not understand or honor those distinctions and right now we are at a place of profound ignorance.”

We do know for a fact that certain antibiotics will wipeout a specific bacteria that helps us degrade oxalates. From the TLO group, here is the list of antibiotics to avoid if you want to keep your Oxabolactor Formigese bacteria alive and degrading oxalates for you:

azithromycin, ciprofloxacin, clarithromycin, clindamycin, doxycycline, gentamicin, levofloxacin, metronidazole, tetracycline and nitrofurantoin.

Most of these are quite common. I’ve taken multiple rounds of at least four of them.

A Different Framework for Treating Complex Illness

After the failed Rifaximin treatment, I thought that if I could stop the endogenous production of oxalates, (for which I had tested positively), then I could get salicylates back. Since both ride the transsulfuration pathway, it seemed logical that oxalates, a toxin, could bump salicylates off that pathway and leave my body with a salicylate overload. Oxalates also trigger the inflammasome, which could explain my histamine symptoms. So enthusiastically, I embarked on a B-vitamin supplement protocol prescribed by an experienced practitioner based on my OAT test results. At the end of that long, bumpy and educational journey, I was still only stable enough to work, and having to walk the tightrope of restrictions plus ongoing symptoms that never resolved.

Still Searching…

Dr. Derrick Lonsdale’s work on Thiamine Deficiency (TD) had always been a part of the conversations at TLO because deficiencies in B6 and/or thiamine will cause the body to produce oxalates. That is definitely one piece of my puzzle. My many out of range plasma amino acid markers attest to this, plus OAT test results. Another piece, the genetics angle, made sense to pursue since I had experienced many of my symptoms intermittently since childhood.

I met with genetics counselor John Cantanzaro. He told me to never eat grains because I was homozygous for SLC19A1. The meaning of this genetic glitch is that I am deficient in folate (vitamin B9) and thiamine (B1) due to a transporter defect. I have so very many symptoms attributable to thiamine deficiency that I am not deterred by lack of testing. As close readers of this publication know, there is no accurate way to test for thiamine in the US because the all labs have stopped offering the transketolase test. (As of this writing, it is available in Barcelona, but good luck finding someone to interpret, I am told.)

A potential second genetic puzzle piece has also been found. The brilliant scientist and researcher Susan Owens, owner of the TLO group, has pointed out that four other SNP’s in the SLC family could also create thiamine transport issues plus many other problems pertinent to my situation. SLC’s 22A1, 22A2, and 22A3 move around neurotransmitters like serotonin and dopamine, choline and acetylcholine. Perhaps that is why I have only been asleep between 3 and 6 am a handful of times in the last few years. They also are important in immune function, regulating T cells and B cells. Perhaps that is why I have fluctuating but distinct symptoms of Babesia (faux bruising, sweating, angiomas). These transporters are related to salt intake and regulation, possibly explaining my life long salt cravings, need to pee and drink water with abnormally frequency. What really got my attention was that these transporters also move salicylate and are related to how histamine and stomach acid are handled.

It seems there is currently no test for these transporters. There is also no other competing hypothesis for why anyone would have all three chemical issues—histamine, salicylate and oxalates. There is no currently practicing M.D. who can help with this, but there are plenty of us on the FB groups who have all three. It can be very disturbing for me to witness people constantly entering the groups, with signs that they have no idea what is in store for them. Some fare better than I did, finding stability after only eliminating that one category. For most of us though, it becomes a frenzied learning journey, trying to read fast enough to keep up with our changing symptoms and to not make things worse accidentally by doing the wrong thing. There are some who end up in the hospital with anaphylaxis. Others from dumping oxalates too fast–which is potentially fatal and the hospital staff would never able to recognize what was happening. I am still not sure what type of medical ID tag I need to warn my future caretakers in case of an emergency: “No vitamin C, no salicylic acids, no benzos, no Tylenol, no “biologicals” (vaccines), etc, etc.”.

How To Fix SLC19A1, the Broken Transporter?

Lately, I have started spacing my thiamine supplements further apart, thinking that if the transport is limited then I need to load the bus more frequently with smaller amounts. I also space my B6 apart from thiamine in case one inhibits the other. I recently trialed choline and finally found a crack in the relentless insomnia. Sadly, it led to some over-methylation symptoms. For thiamine support, I eat no simple sugars, including fruit, and no diuretics or processed foods. I even gave up lentil pasta for fear thiamine would get lost in the cooking water. Additionally, bicarbonate, rutin, no D-ribose are avoided. Do I need manganese? I don’t know how to overcome the transport problems and get the vitamins into my cells. I found a mitochondrial doctor, but he charges $800 for a 1 hour visit and does not accept insurance. A local naturopath is willing to give me IV, but that seems like too much at once for the transport theory. He said an injection into muscle would last longer than IV, but are there any examples of success with this theory? I am also currently pursuing the genetics angle with a Whole Exome test whose price has recently come down from outer space.

More Dietary Approaches

In 2016, I decided to try eating the opposite of what I had been eating, so in addition to my food restrictions, I went high carb, low fat vegan. Again, there were good and bad changes. My triglycerides fell from over 300, out of range high to out of range low (indicative of thiamine deficiency). They rebounded to within normal range when I reintroduced lean meat. The keratosis pilaris on my upper thighs disappeared. But I lost too much weight, which also corrected with a reintroduction of lean pork and eggs. I tried to reintroduce low oxalate grains in June and that resulted in a week and a half of drenching sweats every 20-40 minutes both day and night as well as losing my period.

Lately, I’ve been encouraged to take a hard look at B2, B12 and iron. Test markers show them all low in spite of high supplementation and my brief stint at veganism surely did not help. A ferritin of 20, within range on my Quest report, is actually very deficient and 70 is my new target level. To raise B2, I need selenium, iodine, molybdenum and iron. For all of this, I am to dramatically increase fish and liver in my diet, plus add more molybdenum, Brazil nuts (carefully, as high oxalate) and slowly titrate in methyl B12 topical oil, then retest plasma and OAT in two months.

The roots for this plan are found in two excellent websites. This one on B12 and another here on dementia. Here my known deficiencies in iron, B2, thiamine, B12 and folate, my sensitivity to methyl donors, my out of range low 3-mehtylhistadine (muscle wasting) and my high markers for succinic acid and citric acid (wasted energy) are all described as precursors to dementia.

Have you seen the movie “The Dallas Buyers Club”? Matthew McConaughey’s character seems entirely relatable to me in his need to operate so far outside of the traditional medical system to find help. Not one of my traditional doctors, requested the tests above. I had a doctor tell me my sleep issues were from never adjusting to the time difference from Chicago to LA. I had an eye doctor tell me that there were no dietary interventions for chronic blepharitis, although it is a symptom of both salicylate sensitivity and thiamine deficiency. Before I tested positive (3 times) my main doctor told me SIBO only happened to people who had stomach surgery. I’ll stop there.

This tale ends with deepest gratitude to my “team” for sharing the maps above and how my symptoms and markers could connect to it. These people have never met each other, nor me in person. Amazingly, most have been free of charge, but required an enormous amount of time, digging and learning to find.

Susan Owens and the moderators at TLO; Chandler Marrs, who connects so many of us to Dr. Lonsdale’s work through this brilliant publication and her work on FaceBook groups; the many strangers and friends on FB who have responded to my questions and shared their insights at crucial times along the way; Tim Steele; John Cantanzaro; Donna Johnson; Dawn Tasher; local naturopath Dr. Simon Barker, the Salicylate Sensitivity FB group, wonderful websites like the Healing Histamine and the many brilliant patient/researchers at Phoenix Rising. Thank you!

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This article was published originally on October 11, 2017.

5 Surprising Reasons Not to Use Hormonal Birth Control

by Kerry Gretchen

Published on June 29, 2016

10163 views

The following is a list of some the health factors that increase your risk of side effects from taking hormonal birth control. It is by no means a complete list of contraindications but you may find some of these surprising. I know I did.

Five Reasons You May Want to Reconsider Hormonal Birth Control

Reason 1: Smoking and Age

You are probably familiar with these warnings. You may have heard them on television commercials or seen them on magazine advertisements. Or maybe you read my article about risk communication and saw them there. The problem with these warnings is that the wording makes it seem like you are only at risk if you are over 35 and a smoker. But the truth is that these two risk factors stand independent of each other. You are at increased risk if you are over 35 years of age. You are at increased risk if you are a smoker of any age. And if you are a smoker who is over 35, you have an exponentially higher risk for blood clots when using hormonal birth control.

Reason 2: Migraines

According to a 2010 article in the Reviews in Obstetrics and Gynecology, 43% of women in the United States suffer from migraines. That’s a huge number of women. Also, according to the same article, 43% of women using birth control are using hormonal contraception (the pill, rings, shots, implants, etc.). I’m not a statistician but I’m guessing there is some overlap between the women that suffer migraines and the ones using hormonal birth control. This is problematic for two reasons:

A great deal of evidence suggests that migraine, particularly migraine with aura, is associated with an increased risk of ischemic stroke, and that this risk may be further elevated with the use of hormonal birth control. But if you don’t believe me, both the American College of Obstetricians and Gynecologists and the World Health Organization advise that women who suffer migraines with aura should not use hormonal contraception.
Reevaluation or discontinuation of combination hormonal contraception is advised for women who develop escalating severity/frequency of headaches, new-onset migraine with aura, or nonmigrainous headaches persisting beyond 3 months of use.

A 2016 meta-analysis of seven research studies demonstrated “a two- to fourfold increased risk of stroke among women with migraine who use combined oral contraceptives (COCs) compared with nonusers.” But once again, like so many other things about hormonal birth control, the authors of the study report that research is lacking in this area and more studies need to be done.

Reason 3: Family Clotting Disorders

Many people have a clotting disorder and simply don’t know it. When I had my stroke while on birth control pills, I had no idea that I had the fairly common clotting disorder Factor V Leiden (FVL affects between 3-8% of people). But what I did know was that my grandmother had had two strokes. And my aunts and uncle had all had blood clots.

Unfortunately, women are not systematically tested for clotting disorders before they begin using hormonal birth control. This is very dangerous and why it’s so important to give your doctor a thorough family history; something I know I wouldn’t have considered that vital when I was 18 years old.

A lot of health professionals don’t take the time to review your family history, making it even more important that you mention your family history of blood clots and your concerns about hormonal contraception. You might even insist on being tested for clotting disorders before increasing your risk of a dangerous and sometimes deadly blood clot.

Reason 4: Depression and Mental Health

I explore this further in this article but the basics are:

Hormonal contraceptives can cause mental health issues
Women who suffer from mental health issues are much more likely to suffer from increased symptoms when on hormonal contraception
Often the longer hormonal contraception is used, the greater the symptoms
Discontinuation of hormonal contraception can usually alleviate mental health symptoms

Reason 5: Diabetes

Dr. Hugh J. Davis, the first doctor to testify at the Nelson Pill Hearings said the following (page 5930):

“A woman, for example, who has a history of diabetes or even a woman with a strong family history of diabetes is not an ideal candidate for using oral contraceptives… [they] produce changes in carbohydrate metabolism which tends to aggravate existing diabetes and can make it difficult to manage.”

Hormonal birth control elevates blood glucose levels, can increase blood pressure, increases triglycerides and cholesterol, and accelerates the hardening of the arteries, among other things. They knew this in 1970. But what about the research now? Well, if you’ve read any of my other articles it probably won’t surprise you that the current research is… wait for it… you guessed it… INCONCLUSIVE! Here’s a look at what I’ve found:

“Cardiovascular disease is a major concern, and for women with diabetes who have macrovascular or microvascular complications, nonhormonal methods are recommended.
There is little evidence of best practice for the follow-up of women with diabetes prescribed hormonal contraception. It is generally agreed that blood pressure, weight, and body mass index measurements should be ascertained, and blood glucose levels and baseline lipid profiles assessed as relevant. Research on hormonal contraception has been carried out in healthy populations; more studies are needed in women with diabetes and women who have increased risks of cardiovascular disease.”

And:

“The four included randomised controlled trials in this systematic review provided insufficient evidence to assess whether progestogen-only and combined contraceptives differ from non-hormonal contraceptives in diabetes control, lipid metabolism and complications. Three of the four studies were of limited methodological quality, sponsored by pharmaceutical companies and described surrogate outcomes. Ideally, an adequately reported, high-quality randomised controlled trial analysing both intermediate outcomes (i.e. glucose and lipid metabolism) and true clinical endpoints (micro- and macrovascular disease) in users of combined, progestogen-only and non-hormonal contraceptives should be conducted.
Not enough evidence is available to prove that hormonal contraceptives do not influence glucose and fat metabolism in women with diabetes mellitus.”

As a side note, a recent study demonstrated a link between hormonal contraceptives and gestational diabetes.

Contraception is a very personal choice. I believe all women should research the risks associated with using hormonal contraception, but especially if you experience any of the health conditions above. Should you weigh the risks and benefits of using hormonal birth control and decide it’s still the right choice for you, please take a moment to review the symptoms of the blood clot and seek help immediately if you notice any of these.

Real Risk Study: Birth Control and Blood Clots

Lucine Health Sciences and Hormones Matter are conducting research to investigate the relationship between hormonal birth control and blood clots. If you or a loved one have suffered from a blood clot while using hormonal birth control, please consider participating. We are also looking for participants who have been using hormonal birth control for at least one year and have NOT had a blood clot, as well as women who have NEVER used hormonal birth control. For more information or to participate, click here.

Hormones Matter Top 100 Articles of 2015

by Chandler Marrs, PhD

Published on January 4, 2016

3210 views

Happy New Year, everyone. We have another remarkable year under our belts. Hormones Matter continues to grow month after month. This year, despite the site being down for a month in September, we had over 815,000 visitors, most staying quite a while to read our articles.

Since inception, we’ve published close to 900 articles, many are read by thousands of readers every month. The hysterectomy and endometriosis articles continue to draw large crowds, demonstrating the great need for information in these areas of women’s health.

Our success is thanks to a fantastic crew of volunteer writers who spend countless hours researching complex medical topics, making connections, identifying unconventional therapeutic opportunities, and bringing to light, what are often, invisible illnesses. Without these incredibly talented and compassionate individuals, Hormones Matter would not exist.

Before we begin the new year in earnest, let us take a moment to thank all of the writers of Hormones Matter.

Thank You Hormones Matter Writers!

Below are the articles and authors who made the top 100 list for 2015. If you haven’t read these articles, it’s time to do so. If you like them, share them and share our site so we can continue to grow. If you were helped by any of our articles, take a moment and send the writer a thank you note.

This year, we thought we’d do something a little different and include the 25 all-time favorite articles on Hormones Matter. Be sure to scroll down to the second table and take a look. The numbers are quite impressive.

Since we are run by volunteers and unfunded, feel free contribute a few dollars to cover the costs of maintaining operations. Crowdfund Hormones Matter. Every dollar helps.

If you’d like to share your health story or join our team of writers: Write for Us.

Hormones Matter Top 100 Articles of 2015

Article Title and Author	Reads
1. Post Hysterectomy Skeletal and Anatomical Changes -WS	50,814
2. Sex in a Bottle: the Latest Drugs for Female Sexual Desire – Chandler Marrs	47,910
3. Sexual Function after Hysterectomy – WS	28,898
4. In the ER Again – Heavy Menstrual Bleeding -Lisbeth Prifogle	25,326
5. Endometrial Ablation – Hysterectomy Alternative or Trap? -WS	25,048
7. Adhesions: Cause, Consequence and Collateral Damage – David Wiseman	22, 868
8. Is Sciatic Endometriosis Possible? – Center for Endometriosis Care	11,701
9. Endometriosis: A Husband’s Perspective – Jeremy Bridge Cook	11,626
10. A Connection between Hypothyroidism and PCOS – Sergei Avdiushko	11,024
11. Often Injured, Rarely Treated: Tailbone Misalignment – Leslie Wakefield	10,580
12. Hysterectomy: Impact on Pelvic Floor and Organ Function – WS	8,494
13. Pill Bleeds are not Periods – Lara Briden	8,440
14. Silent Death – Serotonin Syndrome – Angela Stanton	8,408
15. An Often Overlooked Cause of Fatigue: Low Ferritin – Philippa Bridge-Cook	8,374
16. Wide Awake: A Hysterectomy Story – Robin Karr	7,733
17. How Hair Loss Changed My Life – Suki Eleuterio
18. The High Cost of Endometriosis – Philippa Bridge-Cook	7,170
19. Skin Disorders post Gardasil – Chandler Marrs	6,891
20. Essure Sterilization: The Good, the Bad and the Ugly – Margaret Aranda	6,820
21. Love Hurts – Sex with Endometriosis – Rachel Cohen	6,779
22. Dehydration and Salt Deficiency Migraines – Angela Stanton	6,638
23. Adverse Reactions, Hashimoto’s Thyroiditis, Gait, Balance and Tremors – Chandler Marrs	6,445
24. Stop the Metformin Madness – Chandler Marrs	6,400
25. Lupron, Estradiol and the Mitochondria: A Pathway to Adverse Reactions – Chandler Marrs	6,110
26. Endometriosis after Hysterectomy – Rosemary Finnegan	6,093
27. The Reality of Endometriosis in the ER – Rachel Cohen	5,962
28. Mittelschmerz – what should you know – Sergei Avdiushko	5,780
29. Red Raspberry Leaf Tea to Relieve Menstrual Pain – Lisbeth Prifogle	5,586
30. Mommy Brain: Pregnancy and Postpartum Memory Deficits – Chandler Marrs	5,437
31. Parasites: A Possible Cause of Endometriosis, PCOS, and Other Chronic, Degenerative Illnesses – Dorothy Harpley-Garcia	5,414
32. Endometriosis and Risk of Suicide – Philippa Bridge-Cook	5,413
33. Fluoroquinolone Antibiotics and Thyroid Problems: Is there a Connection? – JMR	5, 228
34. Adenomyosis – Philippa Bridge-Cook	5,022
35. Gardasil: The Controversy Continues – Lisbeth Prifogle	4,809
36. Hyperemesis Gravidarum – Severe Morning Sickness: Are Mitochondria Involved? – Chandler Marrs	4,801
37. Oral Contraceptives, Epigenetics, and Autism – Kim Elizabeth Strifert	4,452
38. High Blood Pressure in Women: Could Progesterone be to Blame? – Chandler Marrs	4,446
39. My Battle with Endometriosis: Hysterectomy at 23 – Samantha Bowick	4,288
40. Thiamine Deficiency Testing: Understanding the Labs – Derrick Lonsdale	4,045
41. My Battle with Endometriosis and Migraines – Angela Kawakami	3,839
42. Tampons with Glyphosate: Underpinnings of Modern Period Problems? – Chandler Marrs	3,835
43. Cipro, Levaquin and Avelox are Chemo Drugs – Lisa Bloomquist	3,792
44. Hysterectomy or Not – Angela’s Endometriosis Update – Angela Kawakami	3,750
45. Warning to Floxies: Beware of New Med for Psoriatic Arthritis – Debra Anderson	3,691
46. DES – The Drug to Prevent Miscarriage Ruins Lives of Millions – DES Daughter	3,655
47. Sphincter of Oddi Dysfunction (SOD) – Brooke Keefer	3,540
48. Progesterone for Peripheral Neuropathy – Chandler Marrs	3,278
49. The Fluoroquinolone Time Bomb – Answers in the Mitochondria – Lisa Bloomquist	3,251
50. Why is PCOS so Common? – Lara Briden	3,211
51. Pregnancy Toes – What Sugar does to Feet – Angela Stanton	2,971
52. Five Half-truths of Hormonal Contraceptives – The Pill, Patch and Ring – Joe Malone	2,834
53. Five Years After Gardasil – Ashley Adair	2,831
54. Bleeding Disorders Overlooked in Women with Heavy Periods – Philippa Bridge Cook	2,826
55. Is Gardasil Mandated in Your State? – Lisbeth Prifogle	2,814
56. Is Prenatal Dexamethasone Safe: The Baby Makers’ Hubris – Chandler Marrs	2,808
57. Porn Brain – A Leading Cause of Erectile Dysfunction – Chandler Marrs	2,792
58. Lupron and Endometriosis – Jordan Davidson	2,752
59. Endometriosis, Adhesions and Physical Therapy – Philippa Bridge-Cook	2,746
60. Glabrata – A Deadly Post Fluoroquinolone Risk You’ve Never Heard About – Debra Anderson	2,703
61. Are You Vitamin B12 Deficient? – Chandler Marrs	2,635
62. Topamax: The Drug with 9 Lives – Angela Stanton	2,635
63. Cyclic Vomiting Syndrome – Philippa Bridge-Cook	2,622
64. The Endo Diet: Part 1 – Kelsey Chin	2,614
65. Endometriosis and Adhesions – Angela Kawakami	2,544
66. Thyroid Disease Plus Migraines – Nancy Bonk	2,530
67. Is it Endometriosis? – Rosalie Miletich	2,414
68. Hysterectomy, Hormones, and Suicide – Robin Karr	2,412
69. Why I am Backing the Sweetening the Pill Documentary – Laura Wershler	2,321
70. I Wanted to Die Last Night: Endometriosis and Suicide – Rachel Cohen	2,271
71. How Can Something As Simple As Thiamine Cause So Many Problems? – Derrick Lonsdale	2,456
72. Thyroid Dysfunction with Medication or Vaccine Induced Demyelinating Diseases – Chandler Marrs	2,034
73. Angela’s Endometriosis Post Operative Update – Angela Kawakami	2,017
74. Fluoroquinolone Antibiotics Damage Mitochondria – FDA Does Little – Lisa Bloomquist	1,993
75. Endometriosis and Pregnancy at a Glance – Center for Endometriosis Care	1,969
76. Don’t Take Cipro, Levaquin or Avelox If…. – Lisa Bloomquist	1,960
77. Gardasil Injured – Dollie Duckworth	1,898
78. Fear of Childbirth Prolongs Labor – Elena Perez	1,888
79. Fluoroquinolone Poisoning: A Tale from the Twilight Zone – Kristen Weber	1,883
80. Personal Story: Thyroid Cancer – Myrna Wooders	1,880
81. Recurrent Miscarriage – Philippa Bridge-Cook	1,873
82. Recovering from the Gardasil Vaccine: A Long and Complicated Process – Charlotte Nielsen	1,842
83. Pelvic Therapy for Endometriosis, Adhesions and Sexual Pain – Belinda Wurn	1,818
84. Hormones, Hysterectomy and the Hippocampus – Chandler Marrs	1,777
85. Why Fatigue Matters in Thyroid Disease – Chandler Marrs	1,718
86. How Do You Deal with the Lasting Effects of Endometriosis? – Samantha Bowick	1,697
87. Depression with Endometriosis – Samantha Bowick	1,678
88. Easing Endometriosis Pain and Inflammation with Nutrition – Erin Luyendyk	1,648
89. Anti-NMDAR Encephalitis and Ovarian Teratomas – Chandler Marrs	1,634
90. Autoinflammatory Syndromes Induced by Adjuvants: A Case for PFAPA – Sarah Flynn	1,595
91. Endometriosis Awareness Month: A Wish Noted – Philippa Bridge-Cook	1,513
92. The Role of Androgens in Postmenopausal Women – Sergei Avdiushko	1,477
93. It Wasn’t by Choice: Dysautonomia – Margaret Aranda	1,454
94. Fluoroquinolone Antibiotics Associated with Nervous System Damage – Lisa Bloomquist	1,453
95. Vitamin D3 and Thyroid Health – Susan Rex Ryan	1,439
96. Dealing with Doctors When You Have Undiagnosed Endometriosis -Angela Kawakami	1,439
97. Endometriosis and Being a Trans Person: Beyond Gendered Reproductive Health – Luke Fox	1,436
98. Cyclic Vomiting Syndrome and Mitochondrial Dysfunction: Research and Treatments – Philippa Bridge-Cook	1,430
99. Living with Ehlers Danlos is Hell – Debra Anderson	1,420
100. What is Fluoroquinolone Toxicity? – Lisa Bloomquist	1,415

Hormones Matter All-Time Top 25 Articles

Article Title and Author	Reads
1. Post Hysterectomy Skeletal and Anatomical Changes -WS	105,336
2. Sex in a Bottle: the Latest Drugs for Female Sexual Desire – Chandler Marrs	99,098
3. Endometrial Ablation – Hysterectomy Alternative or Trap? -WS	70,999
4. Adhesions: Cause, Consequence and Collateral Damage – David Wiseman	40,299
5. In the ER Again – Heavy Menstrual Bleeding -Lisbeth Prifogle	39,821
7. Sexual Function after Hysterectomy – WS	35,188
8. A Connection between Hypothyroidism and PCOS – Sergei Avdiushko	31,193
9. Is Sciatic Endometriosis Possible? – Center for Endometriosis Care	24,691
10. Endometriosis: A Husband’s Perspective – Jeremy Bridge-Cook	23,251
11. Skin Disorders post Gardasil – Chandler Marrs	18,105
12. Gardasil: The Controversy Continues – Lisbeth Prifogle	14,174
13. Wide Awake: A Hysterectomy Story – Robin Karr	14,134
14. Endometriosis and Risk of Suicide – Philippa Bridge-Cook	13,836
15. Love Hurts – Sex with Endometriosis – Rachel Cohen	13,782
16. Endometriosis after Hysterectomy – Rosemary Finnegan	13,294
17. Hysterectomy: Impact on Pelvic Floor and Organ Function – WS	13,056
18. Adverse Reactions, Hashimoto’s Thyroiditis, Gait, Balance and Tremors – Chandler Marrs	12,901
19. How Hair Loss Changed My Life – Suki Eleuterio	12,835
20. Mittelschmerz – what should you know – Sergei Avdiushko	11,919
21. Often Injured, Rarely Treated: Tailbone Misalignment – Leslie Wakefield	11,521
22. An Often Overlooked Cause of Fatigue: Low Ferritin – Philippa Bridge-Cook	10,821
23. Mommy Brain: Pregnancy and Postpartum Memory Deficits – Chandler Marrs	10,591
24. Adenomyosis – Philippa Bridge-Cook	10,249
25. I Wanted to Die Last Night: Endometriosis and Suicide – Rachel Cohen	9,826

Triptans ± SSRIs ± Migraines ± Depression: Flip a Coin!

by Angela A Stanton, PhD

Published on October 12, 2015

5552 views

Migraines and depression are understood to be neurological diseases though many consider them to be mental illnesses [1, 2]. Recent research sheds light on both conditions and shows us how much they have in common. Both migraines and depression can be stopped by voltage applied to the brain. In the case of depression, voltage has only been applied via open-brain surgical procedures as deep brain stimulation of the specific brain region, shown in the scanner as dark region [3-6]. For migraines the stimulation has been tried both outside of the brain [7, 8] and internally via deep brain electrical stimulation [9]. The cause inn both migraine and depression is seen in scanners [1, 10] as cortically depressed areas. These are dormant regions that have no observable electrical activity. When electrical stimulation is applied to a dormant brain region, it regains its function. Crucially for migraines, it has been demonstrated that a dormant area be shocked by a wave of electricity generated by the brain itself, called cortical spreading depression, energizing the dormant area to be able to create action potential again [11-14]. This is quite similar to a cardiac arrest patient receiving an electrical shock to the heart which restarts electrical activity. The difference is that in the case of the heart the electricity is applied externally by others, whereas in the case of the brain the electric shock is applied by the brain itself by using its functioning brain regions to energize nonperforming regions. Because neurons communicate to each other via neurotransmitters and are connected to each other, neurons that do not manufacture neurotransmitters and do not participate in communication exchange cannot hide. The healthy, energized regions send a wave of energy within the brain. However, this wave reaches the meninges where all pain sensory neurons are located [14] and hence migraine pain.

Similarly to how a cardiac arrest does not always get the heart to continue beating again, the electric shock of the spreading cortical depression may not awaken the dormant regions either. Energy for proper functioning of either the heart or the brain – or indeed for any living tissue – cannot be created from nothing. To continue to generate voltage after the initial shock, the proper minerals have to be available. One can only drive a car on fumes for so long. Interestingly we understand this very well when it comes to our cars but we tend to forget it when it comes to our body. Our body uses energy it receives from what we eat and drink. The energy is carried to the cells by electrolytes. Electrolytes are water mixed with vital nutrients. Electrolytes take up 55%-70% of our body per gender and age with salt about 9 grams per liter. Those brain regions that lack important nutrients will not function.

We now understand that brain regions that are starved of energy and that are not able to generate action potential cause abnormal synaptic transmissions [15, 16]. Yet rather than replenishing the brain by restocking it with nutrients, the current favorite treatment method is some form of serotonin medicine, such as triptans for aborting an ongoing migraine, or serotonin reuptake inhibitors (SSRIs or SNRIs) for prevention for both migraines and depression. Many unlucky migraineurs and depression patients also receive a voltage dependent calcium channel blocker, one of which I discussed in my last article. Given that these medications are so often prescribed, one would think that they actually work. But do they?

They actually don’t work for depression over 70% of the time. And for migraines? Well, that is another story as I am about to discuss. It is also important to note that where energy is needed, medicines that block energization via electrolytes actually work against recovery and dull the brain, using symptom management instead.

Why Triptans and SSRIs/SNRIs are Hit or Miss for Migraines

Serotonin for migraines only works sometimes and even then with tremendous side effects, often causing depression (see adverse reaction tables below), violence, and fatalities. Based on my migraine group where thousands of migraineurs have passed through over the years, the statistics show that 80% of those who join the group take some serotonin preventive, usually an SSRI or SNRI but they still need to take abortives, such as triptans, and yet they still have migraines! Not only does this show that serotonin does not work but also that there is a very dangerous practice of “more is better,” which may be followed by fatal consequences, such as serotonin syndrome. The dangerous practice is common because of five critical reasons:

Doctors should know better than to prescribe multiple serotonin medications to the same patient and if they don’t know what their patients take, they owe the courtesy to ask before they prescribe!
Pharmacies have records of all medicines a patient takes. If a doctor makes a mistake, it is the responsibility of the pharmacist to catch the mistake and warn the doctor and the patient. This has never happened in the entire history of my migraine group! I usually analyze their medicines and point out the pharmacological interactions and duplication that they print out and hand to their doctors. Only after the patient’s intervention will doctors initiate removal of dangerous medicines. Last time I checked: The patients are not responsible for the medicines they are being prescribed.
85% of the doctors do not recognize serotonin syndrome. The sad truth is that while 100% of the doctors can prescribe SSRIs and similar medications with a few scribbles, 85% of them do not recognize if it reaches toxic levels in their patients. I estimate that the majority of doctors are not familiar with the mechanisms of the medicines they prescribe; they cannot tell if one is a voltage dependent calcium channel blocker or a voltage dependent sodium channel blocker or both or neither.
This is the saddest of them all: financial incentives actually cause many doctors to be angry with patients who wish to reduce their medicines. Many members in my migraine group faced rude and angry doctors who placed them on such quick reduction from these highly “discontinuations syndrome” (politically correct for addictive) medicines that they were forced back on the medicines and of course that increased again the lunches and dinners or straight cash flow of the prescribing doctors—search out your doctor’s name and see what she/he has been earning on your medicines in 2014!
The side effects of many of these serotonin medicines are worse than the initial problem they are prescribed for; reduction is slow and painful. While the adverse effects hit all at once when starting a medicine, the very same adverse effects return in slow motion as the patients reduce. For example, they may not even realize that they had increased blood pressure, nausea, dizziness, and diarrhea all at once for a few days or weeks while starting the medication since these adverse effects showed up at once. But in reversing and stopping the medicine, each of these effects can last for weeks and is highly pronounced, frightening the patient. Furthermore, adverse effects are updated on the go by the FDA. Most users are not informed about these by their prescribing physicians.

I randomly picked two very common medications I see prescribed all the time. Zoloft, used for depression, is a selective serotonin reuptake inhibitor (SSRI), and Elavil, a tricyclic antidepressant (TCA), prescribed for migraines frequently. The list of side effects for Zoloft (Sertraline) is huge (Wikipedia). I must say that if I were not depressed before taking this medicine, I most certainly would be after reading this list:

Adverse effects: Fatigue, Insomnia, Somnolence (sleepiness), Nausea, Dry mouth, Diarrhea, Headache, Ejaculation disorder, Dizziness, Agitation, Anorexia, Constipation, Dyspepsia (indigestion), Decreased libido, Sweating, Tremor, Vomiting, Impaired concentration, Nervousness, Paroniria (i.e., depraved or morbid dreaming/nightmares), Yawning, Palpitations, Increased sweating, Hot flushes, Weight decrease, Weight increase, Myoclonus, Hypertonia, Bruxism (teeth grinding), Hypoesthesia, Menstrual irregularities, Sexual dysfunction, Rash, Vision abnormal, Asthenia, Chest pain, Paranesthesia, Tinnitus (hearing ringing in the ears), Hypertension (high blood pressure), Hyperkinesia, Bronchospasm, Esophagitis (swollen esophagus), Dysphagia, Hemorrhoids, Periorbital Edema, Purpura, Cold Sweat, Dry skin, Nocturia, Urinary Retention, Polyuria (excessive urination), Vaginal Hemorrhage, Malaise, Chills, Pyrexia (fever), Thirst, Pollakiuria, Micturition disorder, Salivary Hypersecretion, Tongue Disorder, Osteoarthritis, Muscular Weakness, Back Pain, Muscle Twitching, Eructation (belching), Dyspnea (air hunger), Epistaxis (nose bleed), Edema peripheral, Periorbital edema, Syncope, Postural dizziness, Tachycardia (high heart rate), Urticaria (hives), Migraine, Abnormal bleeding (esp. in the GI tract), Muscle cramps, Arthralgia, Depressive symptoms, Euphoria, Hallucination, Alopecia (hair loss), Urinary Retention (being unable to pass urine), Pruritus, Amnesia memory loss., Urinary incontinence, Eye pain, Asymptomatic elevations in serum transaminases, Abnormal semen, Melena (black feces due to a bleed in the stomach), Coffee ground vomiting, Hematochezia, Stomatitis (swollen mouth), Tongue ulceration, Tooth Disorder, Glossitis (soreness/swelling of the tongue), Mouth Ulceration, Laryngospasm, Hyperventilation (breathing more often than required to keep one’s blood sufficiently oxygenated), Hypoventilation (breathing less often than required to keep one’s blood sufficiently oxygenated), Stridor, Dysphonia (voice disorder), Upper Respiratory Tract Infection, Rhinitis (irritation/inflammation inside the nose), Hiccups, Apathy, Thinking Abnormal, Allergic reaction, Allergy, Anaphylactoid reaction, Face edema, Priapism, Atrial arrhythmia, AV block, Coma, Peripheral Ischemia, Injury, Vasodilation Procedure, Lymphadenopathy, Involuntary muscle contractions, Galactorrhea (lactation that is unrelated to pregnancy or breastfeeding), Gynecomastia (swelling of breast tissue in men), Hyperprolactinemia (high blood prolactin levels), Hypothyroidism (underactive thyroid gland), Syndrome of inappropriate secretion of antidiuretic hormone (SIADH), Pancreatitis (swollen pancreas), Altered platelet function, Hematuria (blood in the urine), Leukopenia (low white blood cell count), Thrombocytopenia (low blood platelet count), Increased coagulation times, Abnormal clinical laboratory results, Hyponatremia (low blood sodium), Conversion Disorder, Drug Dependence, Paranoia, Myocardial Infarction (heart attack), Bradycardia, Cardiac Disorder, Suicidal Ideation/behavior, Sleep Walking, Premature Ejaculation, Hyperglycemia (high blood sugar), Hypoglycemia (low blood sugar), Hypercholesterolemia (high blood cholesterol), Vasculitis, Aggressive reaction, Psychosis (hallucinations and delusions), Mania (a dangerously elated mood), Menorrhagia (an abnormally excessive amount of menstrual bleeding), Atrophic Vulvovaginitis, Balanoposthitis, Genital Discharge, Angioedema, Photosensitivity skin reaction, Enuresis, Visual field defect, Abnormal liver function, Dermatitis, Dermatitis Bullous, Rash Follicular, Glaucoma, Lacrimal Disorder, Scotoma, Diplopia, Photophobia, Hyphemia, Mydriasis, Hair Texture Abnormal, Neoplasm, Diverticulitis, Choreoathetosis, Dyskinesia, Hyperesthesia, Sensory Disturbance, Gastroenteritis, Otitis Media, Skin Odour Abnormal, QTc prolongation, Anaphylactoid Reaction, Allergic Reaction, Allergy, Neuroleptic malignant syndrome. A potentially fatal reaction that most often occurs as a result of the use of antipsychotic drugs. It is characterized by fever, muscle rigidity, rhabdomyolysis (muscle breakdown), profuse sweating, tachycardia, tachypnoea (rapid breathing), agitation, Stevens-Johnson syndrome a potentially fatal skin reaction, Toxic epidermal necrolysis another potentially fatal skin reaction, Torsades de pointes a potentially fatal change in the heart’s rhythm., Cerebrovascular spasm, Serotonin syndrome similar to neuroleptic malignant syndrome but develops more rapidly (over a period of hours instead of days/weeks for neuroleptic malignant syndrome), Bone fracture, Movement disorders, Diabetes mellitus, Dyspnea, Jaundice yellowing of the skin, mucous membranes and eyes due to an impaired ability of the liver to clear the haem breakdown by product, bilirubin, Hepatitis, Liver failure. This medicine can cause serotonin syndrome on its own.

For migraine I picked Elavil (Amitriptyline) which is a TCA. While it has fewer side effects (Wikipedia) than Sertraline (SSRI), one of its major side effects is headache. Why would a competent doctor prescribe a known headache causer to a migraineur?

Here are some of the other adverse effects: dizziness, headache, weight gain, delirium, confusion, anxiety, agitation, orthostatic hypotension (low blood pressure), sinus tachycardia, loss of libido, impotence, sleep disturbances such as drowsiness and insomnia. Most importantly, Amitriptyline inhibits sodium channels, L-type calcium channels, and voltage-gated potassium channels, and therefore acts as a sodium, calcium, and potassium channel blocker as well.

Recall my argument of a car only able to go on fumes for so long? This drug, by blocking all possible energizing channels, blocks the inflow of nutrients and the outflow of toxins. This car is not going anywhere!

Yet many migraineurs who join my group have been taking Elavil, which of course doesn’t work, so then they end up having to take several other medicines to replace activities the brain cannot do: they often receive prescriptions for other types of SSRIs, sometimes voltage dependent calcium blockers, barbiturates, NSADs, muscle relaxers, steroids and even triptans to come full circle, and add the very ingredient they blocked from being released the first place!

Does Serotonin Use Make Any Sense At All?

When a brain region is not able to generate action potential, as shown, lack of serotonin is not the cause. It is entirely possible that the particular neurons that cannot generate enough energy happen to be responsible for serotonin production, in which case adding serotonin will indeed take the pain away. However, it will not treat the underlying cause of not having enough energy for generating action potential. The fact that it is energy shortage rather than serotonin shortage that causes depression is clearly demonstrated by the deep brain stimulation experiments on live humans, where the voltage stimulation lifted their depression right there during the experiment without any serotonin. The patients were able to explain what they felt and how their depression lifted during the procedure [4-6, 17]. It all sounds very simple actually since we know what generates action potential in the brain: salt.

So why do migraine and depression sufferers keep on getting serotonin medications knowing that serotonin has absolutely nothing to do with migraines? This is a great question that I would like to ask many physicians! Habits are hard to break but eventually they must!

Concluding Thoughts

There is only a small chance that triptans or SSRIs will work for your migraines or depression but it is 100% certain that adverse effects will prevent your brain from working properly. In the long run, these drugs cause permanent damage. Do yourself a favor and learn what migraines are and how to prevent them. Since migraines and depression have the same cause as seen in the scanners, why not try the same solution? Many who joined my migraine group with depression and migraine are now free of both, as well as all their medicines! Join the movement for healthy life without medicines.

Sources

Gasparini, C.F., H.G. Sutherland, and L.R. Griffiths, Studies on the Pathophysiology and Genetic Basis of Migraine. Current Genomics, 2013. 14(5): p. 300-315.
Young, W.B., et al., The Stigma of Migraine. PLoS ONE, 2013. 8(1): p. e54074.
Holtzheimer, P.E., et al., Subcallosal Cingulate Deep Brain Stimulation for Treatment-Resistant Unipolar and Bipolar Depression. Jama Psychiatry, 2012: p. 150-158.
Lozano, A.M., et al., A multicenter pilot study of subcallosal cingulate area deep brain stimulation for treatment-resistant depression. J Neurosurg, 2012: p. 315-322.
Mayberg, H.S., et al., Deep brain stimulation for treatment-resistant depression, in Neuron. 2005. p. 651-60.
Taghva, A.S., D.A. Malone, and A.R. Rezai, Deep brain stimulation for treatment-resistant depression. World Neurosurg., 2013: p. 826-831.
Aurora, S.K., et al., Transcranial magnetic stimulation confirms hyperexcitability of occipital cortex in migraine, in Neurology. 1998. p. 1111-4.
DaSilva, A.F., et al., tDCS-Induced Analgesia and Electrical Fields in Pain-Related Neural Networks in Chronic Migraine. Headache: The Journal of Head and Face Pain, 2012. 52(8): p. 1283-1295.
Tepper, S.J., et al., Acute Treatment of Intractable Migraine With Sphenopalatine Ganglion Electrical Stimulation. Headache: The Journal of Head and Face Pain, 2009. 49(7): p. 983-989.
Hadjikhani, N., et al., Mechanisms of migraine aura revealed by functional MRI in human visual cortex. Proceedings of the National Academy of Sciences, 2001. 98(8): p. 4687-4692.
Charles, A.C. and S.M. Baca, Cortical spreading depression and migraine. Nat Rev Neurol, 2013: p. 637-44.
James, M.F., et al., Cortical spreading depression and migraine: new insights from imaging? TRENDS In Neuroscience, 2001: p. 226-271.
Lauritzen, et al., Clinical relevance of cortical spreading depression in neurological disorders: migraine, malignant stroke, subarachnoid and intracranial hemorrhage, and traumatic brain injury, in J Cereb Blood Flow Metab. 2011. p. 17-35.
Bolay, H., et al., Intrinsic brain activity triggers trigeminal meningeal afferents in a migraine model. Nat Med, 2002. 8(2): p. 136-142.
Pietrobon, D., Insights into migraine mechanisms and Ca(V)2.1 calcium channel function from mouse models of familial hemiplegic migraine. The Journal of Physiology, 2010. 588(Pt 11): p. 1871-1878.
Vecchia, D., et al., Abnormal cortical synaptic transmission in CaV2.1 knockin mice with the S218L missense mutation which causes a severe familial hemiplegic migraine syndrome in humans. Front. Cell. Neurosci., 2015: p. epub ahead of print.
Lozano, M. and N. Lipsman, Probing and regulating dysfunctional circuits using deep brain stimulation, in Neuron. 2013. p. 406-24.

Coming Out of the Disease Closet – The Challenges of Chronic Illness

by Jordan Davidson

Published on August 4, 2015

4195 views

“When do you come out of the closet?”

“What?!” I replied, half choking on my coffee.

This question came as my friend, a fellow chronic disease sister, and I were getting coffee and discussing the usual thing topics girls in their twenties discuss, work, friends, boys, relationships, boys, world news, boys, you know the usual.

She clarified; “Say you are dating someone, when do you tell them that you are sick… You know, come out of the ‘disease closet’?”

I took a moment to reflect because it was a good question; oddly worded but nonetheless a good, thought-provoking question.

I thought back to the first time I came out of the disease closet. It was after a few weeks of dating this guy I really liked, who was a bit older than me. I was having surgery in a month and I knew I needed to talk about the surgery before it happened (so it wouldn’t seem suspicious if I wasn’t up to going out for two weeks or so). I very hesitantly told him a brief version of my medical history and the impending surgery. He took a few minutes to pause and then finally after what felt like forever he said “So you can’t have kids.” I was 18 at the time and so my response was “I don’t know I haven’t really tried, have you? I mean who really knows if they can have kids unless they’ve tried.” He followed up with the standard ‘you’re a very brave girl’ spiel and that was the end of that. I think we had one or two more dates after that and then two weeks before my surgery he stopped returning my texts and calls. No explanation, nothing, that was that.

I had (or at least I thought I had) learned a lot from that experience; with the main takeaway being ‘my private matters are best kept private.’ I am 21 now and I have been dealing with health issues from the day I was born. I’m not looking for praise or an award, I just want to live a normal life. I graduated high school with honors, I graduated from college in three years and have found a lot of success in the working world. If I never told you I was sick, you would never know that I have stage IV endometriosis with endometrial lesions growing all the way up towards my liver and covering almost the entirety of my reproductive system, causing me crippling pain at least once a month.

When I am in pain you would never know it. Despite being in pain, I will still meet you for coffee. I will still go to class or to work or meet with a client and there will be a smile on my face, because I just want to be normal. I don’t want to have to come out of the closet because someone somewhere decided being ill is shameful. I have nothing to hide. I have stage IV endometriosis, thyroid disease, chronic migraines, weird allergies and narrow angle glaucoma and I’d wear it all on my shirt if I didn’t think that people would judge me as being ‘lesser.’ I wouldn’t be stuck in some ‘disease closet’ if I thought that I could tell people these things without having them give me ‘sad’ eyes or tell me (or not tell me) they don’t want to date me anymore because I have ‘too many problems.’

But I can’t say all of these things openly because there is a stigma attached to people with chronic diseases; those who are disabled, those who fight their bodies on a daily basis. I don’t get to talk about these experiences, the countless hospital visits, the fifteen surgeries that have made me a stronger, better person because I am stuck in this ‘disease closet;’ because to be ‘ill’ is to be abnormal and we are taught to be ashamed of abnormality.

Its not easy but we all need to stop hiding. No one is ‘lesser’ for being different and no one should be made to feel that way. By hiding, we convey that we have something worthy of hiding, something that we should be ashamed of. I’m not saying to go to the next person you meet and say “Hi I am so and so and I have such and such” because that’s just a different way of defining yourself by your illness. Instead, you should be able to talk candidly about what ever adversities have been thrown your way without feeling ashamed. Through openness we teach acceptance of ourselves and of others. I apologize if that sounds like it came out of a fortune cookie – but its true! I’ve learned that the problem wasn’t coming out of the ‘disease closet’ to others, the problem was I hadn’t ‘come out’ to myself.

If you would like to share your story regarding your personal experiences dealing a chronic illness or telling others about your health issues, feel free to do so in the comment section below. Or write a blog for Hormones Matter. If more women would come out of the disease closet maybe we can begin the long journey of curing some of these often invisible illnesses. Come out of the disease closet.

This post was published previously in February 2013.

The Anatomy of a Migraine

by Angela A Stanton, PhD

Published on November 17, 2014

9133 views

What is the anatomy of a migraine? Do migraines have an anatomy, a location map, in the same way heart disease does? Sure, migraine happens in the brain and we feel the pain in our head if there is pain – not all migraines come with pain, but does the pain guide us to a causative anatomy of the migraine the same way a heart attack does to the heart? No, it does not; at least not in the same way a blocked artery points to the cause of heart attack. The symptoms of migraines correspond to no specific regions of the brain, except in the case of the aura migraine, which points at the visual cortex. Only about 15% of those with migraines have auras. For 85% of the cases, we do not have the anatomical location of the migraine understood. Most science seems to consider aura and non-aura migraine different in nature and cause. Are they? Maybe not.

Most migraines are not connected to the symptoms we feel (nausea, dizziness, IBS, RLS, anxiety, nausea, vomit, etc.) and because of the variety of symptoms, there is nothing to guide us, such as a scan of the arteries for heart or a stroke. Another contributing factor is that there are no pain sensing nerves in the brain. All pain is felt by the trigeminal neuron receptors that are located on the meninges of the brain. That is, the pain we feel as migraineurs is disconnected from the actual location that causes migraines. To find the anatomy of a migraine, we need to go beyond the symptoms and the pain of the disease, beyond the visible disturbance of the eye in the aura, to the underlying cause for these symptoms.

For much of recent history, migraine research has revolved around two discrete theories of migraines: vascular and non-vascular mental illness. The two schools of thought were merged into what is now called neurovascular disease. But the latest findings suggest that there is more to migraines than neurovascular disease.

Migraine as Vascular Disease

For much of the 20^th century, migraine was considered to be a vascular disease. This meant that migraine pain was caused by cranial blood vessel dilation or constriction. Still today we can see many over-the-counter migraine drugs that constrict blood vessels with caffeine in order to constrict the vascular structure of the brain (and the heart and the rest of our body). Alternatively, many doctors still prescribe beta blockers that reduce blood pressure and loosen arteries for easier blood flow and reduced constriction. If migraine is a disease of vascular nature, what causes the cranial vasodilation changes, particularly if these changes do not affect the heart or other parts of the body? This is the first clue that migraines are something more than just vascular in nature.

Migraine as Non-Vascular Mental Illness

The second prominent theory in migraine research attributes migraine pain to alterations in neurotransmitters, specifically, serotonin. Research is confusing on whether migraineurs have less or more serotonin than non-migraineurs. The possible serotonin connection brought us the many prescription drugs containing, increasing, or decreasing serotonin in the brain (triptans, SSRIs and others). Today, most migraineurs receive at least one serotonin enhancing drug; some I know receive serotonin blocking drug but that represents the minority. I was one of the millions of migraine patients who received serotonin enhancers (triptan) and also one of the millions of migraineurs for whom these medications did not work.

Again, I must ask, if there is a serotonin deficiency or overflow in migraineurs, what causes it? And if it is a deficiency as is proposed to be the case for most migraineurs, isn’t this the same proposed deficiency as in depression? Why then don’t most who are depressed also suffer from migraines or why do those who suffer migraines as a result of lack of serotonin not suffer depression? It is not clear to me that there is any connection between serotonin and migraine since most migraineurs I know are not at all depressed and most depressed do not have migraines. This tells me that something is not right with the concept of identical treatments for such two completely different illnesses.

Serotonin is created by a normally functioning brain. Why it is deficient, or in some cases, elevated in the brain of migraineurs has always puzzled me. It still puzzles me that others didn’t ask why neurons cannot produce the right amount of serotonin on their own or why physicians so easily prescribed drugs to add or enhance what the brain was not making. Should we not find out why the neurons are not producing serotonin in the first place? Wouldn’t this help us better treat and maybe even cure migraines?

Migraine and New Research

The most recent theory about migraines involves the aberrant electrical discharges associated with migraine and a phenomenon called cortical spreading depression:

Cortical spreading depression (CSD) and depolarization waves are associated with dramatic failure of brain ion homeostasis, efflux of excitatory amino acids from nerve cells, increased energy metabolism and changes in cerebral blood flow (CBF). There is strong clinical and experimental evidence to suggest that CSD is involved in the mechanism of migraine, stroke, subarachnoid hemorrhage and traumatic brain injury. (Lauritzen et al., J Cereb Blood Flow Metab)

Researchers have linked CSD to the eminent onset of migraine pain. Such a rapid change in brain ion homeostasis can affect changes in neurotransmitter concentrations, causing cranial vascular dilation and ionic imbalance with depolarized regions. These changes can evoke what migraineurs sense as pain but one has to ask by what mechanisms are these ionic brain changes initiated and by what pathways do they elicit the pain. For the first question, let us return to the concept of neural dehydration and salt deficiencies as possible instigators.

A Unified Theory of Migraine Pain

A new report shows migraines, seizures and strokes are all about ion (sodium, potassium, chloride, magnesium, and oxygen) homeostasis. These particular models looked at how changing potassium ion concentration affects brain activity and how seizures and migraines have similar underlying mechanisms. Potassium’s job is to work both inside and outside of the neurons helping to balance homeostasis by ensuring that potassium ions are in the correct place all the time. Potassium is a diuretic substance and helps in the removal of excess or used water from the cell. If there are too many potassium ions inside or outside of a neuron, with all else remaining constant, the neuron will end up dehydrated because of the osmotic gradient.

The overabundance of potassium and a depletion of both extra-cellular sodium chloride reduces water, and changes the pH balance (acidic level) of the neuron (Costa et al., The Journal of Headache and Pain). Recall from my earlier post: Dehydration and Salt Deficiency Trigger Migraines, that channels on the membrane of the neuron allow for leaks using osmotic gradient to balance the internal and external ionic content. Because ionic homeostasis balance is required for a healthy brain, the ionic balance must be true for all electrolyte elements, including sodium as well. Not enough sodium can cause a potassium overabundance that can trigger migraines because the neuron is not able to generate electricity or retain water.

In Dehydration and Salt Deficiency Trigger Migraines, I talked about the importance of hydration and explained how that works at the cellular level. I introduced the sodium-potassium pumps and their role in keeping the cell hydrated. Through the sodium-potassium pumps sodium ions and potassium ions head in and out of the neuron when proper electric currents are established. For the electric current, the ionic balance of sodium and chloride is essential so that the pumps can open and close. There are also osmotic channels through which leakage of ions may happen depending on higher or lower levels of ions inside versus outside the cell—the osmotic gradient.

The phenomenon of cortical spreading depression is a slow spreading electrical surge corresponding to depolarized regions of migraine initiating locations. It is initiated by ion imbalance where the normal homeostasis has been lost. Here the sodium-potassium pumps do not function properly; the channels leak too much potassium and water, magnesium and oxygen out from the neuron. If these ions cause imbalance, trouble ensues. Even a small, unnecessary increase in potassium outside the cell can lead to seizures and by association to migraines.

It’s All About the Ions

So, beneath the vascular and non-vascular definitions of migraine, the neurotransmitter imbalances and the hyper-excitability of neurons in the certain brain regions associated with migraine, are simple variations in ionic balance, responsible for the onset of migraine and the possibility of vasoconstriction or relaxation changes as a consequence. Too much or too little of one or more ions, evokes changes in brain’s electrical activity that can lead to migraines or seizures. Where in the brain those changes occur determines the type of symptoms a migraineur experiences. For example, with aura migraine the anatomical initiating migraine location is the visual cortex. The migraineur sees the aura with eyes also closed. So what the migraineurs sees is happening inside the brain and not outside. The visual cortex’s function is to translate the light signals it receives into meaningful images of objects. The CSD is an electric storm that the visual cortex interprets as aura. The aura usually starts with a blind spot. It is my belief that the blind spot represents the region of neurons that is the cause of the migraine; the depolarized region that the CSD is trying to activate.

Concluding Remarks

The overall neuron-behavior is very complex but today we can say with a high degree of conviction that:

Migraines are caused by malfunctioning neurons as a result of ion imbalances.
Ion imbalance can be visualized by regions of depolarization.
Depolarized regions demonstrate the anatomy of the disturbance.
Hydration and maintaining proper ionic balance (correcting salt deficiency, magnesium deficiency, potassium excess or deficiency) is important for migraineurs since the slightest ionic imbalance can cause a migraine.

From my perspective, I am glad to see the most recent attempts at understanding physiological problems in the brain behind the migraine. This is a very important shift in migraine research – looking beyond the symptoms for a cause. Nevertheless, I am still looking for answers. How does the ion balance become so disturbed that it initiates a migraine? Why does this happen for some folks and not others? Those are the questions, researchers and clinicians need to address. My theory is that the depolarized regions of the brain result from disturbances in homeostasis and ion balance which are precipitated by dietary deficiencies. We need to determine the proper amounts of each mineral and micronutrient required for the well-functioning brain to reduce migraine.

Sources:

Clinical relevance of cortical spreading depression in neurological disorders: migraine, malignant stroke, subarachnoid and intracranial hemorrhage, and traumatic brain injury. Martin Lauritzen, Jens Peter Dreier, Martin Fabricius, Jed A Hartings, Rudolf Graf, and Anthony John Strong; J Cereb Blood Flow Metab. Jan 2011; 31(1): 17–35. Published online Nov 3, 2010. doi: 10.1038/jcbfm.2010.191 PMCID: PMC3049472
Cortical spreading depression as a target for anti-migraine agents. Cinzia Costa, Alessandro Tozzi, Innocenzo Rainero, Letizia Maria Cupini, Paolo Calabresi, Cenk Ayata and Paola Sarchielli1; Costa et al. The Journal of Headache and Pain 2013, 14:62
Interpreting fMRI data: maps, modules and dimensions. Hans P. Op de Beeck, Johannes Haushofer & Nancy G. Kanwisher Nature Reviews Neuroscience 9, 123-135 (February 2008)
Mechanisms of migraine aura revealed by functional MRI in human visual cortex. Hadjikhani N1, Sanchez Del Rio M, Wu O, Schwartz D, Bakker D, Fischl B, Kwong KK, Cutrer FM, Rosen BR, Tootell RB, Sorensen AG, Moskowitz MA. Proc Natl Acad Sci U S A. 2001 Apr 10;98(8):4687-92. Epub 2001 Apr 3.
Unification of Neuronal Spikes, Seizures, and Spreading Depression. Yina Wei, Ghanim Ullah, and Steven J. Schiff ; The Journal of Neuroscience, 27 August 2014, 34(35): 11733-11743; doi: 10.1523/JNEUROSCI.0516-14.2014

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Concluding Remarks

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