migraine

Those Evil Grains: Gluten Free Versus Grain Free

10129 views

Are You Sure You Are Not Gluten Sensitive?

Gluten free  is everywhere. I can barely go any place or talk to anyone who is not eating gluten free at least to some degree. Gluten free is really not a very good exchange for harmful gluten because the substances used in baking gluten free foods are very high in insulin spiking simple carbohydrates (carbs). So which evil do you choose if you are not sure about your need to avoid gluten?

I never had any issues with gluten—or at least that is what I thought. All of my tests came back negative, showing no sensitivity at all.

Out of my insatiable curiosity, I went on a grain free diet. I noted that although I was not sensitive to gluten as per the tests, I needed to take Benadryl after eating Farro (can be written with one or two r’s), a wheat product. I also needed Benadryl after couscous, another wheat product, even though I did just fine (I thought) after eating bread or pasta. So I thought why not try; let’s have a test!

It takes minimum 2 months to usually 6 months (1) for your body to show any response to becoming grain free if you are sensitive. Okay, so what’s 2 – 6 months in the life of a person? I cut out all grains. I don’t mean that I went gluten free but I mean that I stopped all grains. Gluten free is a very misused term. For example, having just come back from New Zealand and Australia, I asked everywhere if they had gluten free food. They always served my dish with corn flour instead of wheat. There are two problems with this approach:

  1. Glycemic index (GI) is always higher for gluten free foods than foods with regular grains if other grains are substituted for gluten-filled grains
  2. Gluten free does not mean grain free by any means. Gluten free grain may not have gluten but they have other proteins that do equal harm in terms of interfering with protein synthesis and absorption of nutrients.

Understanding Grains When You Go Gluten Free

Did you know that corn flour is also grain? If you eat corn fresh, it is a vegetable. However, when it dries, the chemical processes during drying change its property and corn becomes loaded with harmful proteins. Gluten proteins are gliadin, glutenin, glutamites, prolines.  Though corn has no gluten per se, corn has lipid transfer protein, which causes problems. Rice (also a grain) has proteins that are not gluten but can cause gastric distress from their high sulfur content as a result of amino acids, cysteine and methionine. Both rice and corn are grass, and thus grain. Rice has the least amount of harmful effects so eating rice can be nutritious, provided one selects low arsenic content rice with strong colors for higher nutritional benefits and provided that one is not sensitive to sulfur.

Where Gluten Hides

One must also be careful about eating common foods we do not associate with gluten or grain, such as soups, ketchup, soy sauce, salad dressings, prepared meats like hot dogs and sausages, tempura (oh that was painful!), ice creams, many alcohol types since they are made of grain, like beer and vodka, even wine, and many food colorings and additives. There is a list here if you would like to learn more.

To be complete, let us list all grains one needs to consider when going grain free since while corn, rice, oats, and some others are technically gluten free, they are loaded with other elements that block nutrient absorption in the gut and the intestines. I would have liked to write “to sensitive people” but since I showed no sensitivity in any test and yet I clearly was sensitive to grains, I believe that sensitivity goes for all people to some degree. Likely no person on the planet is immune from some damage caused by the seeds of grasses, only most don’t test like I did so they will never know.

The Worst Offenders

The worst of all grains are those that are the seeds of grasses. The immediate ones that everyone knows are wheat, rye, and barley. These are all full of gluten. However, since grains are all seeds of grasses, we need to go further and list them all: wheat, rye, barley, corn, oats, rice, flax seed, finger millet, fonio, foxtail millet, Japanese millet, Job’s tears, kodo millet, millet, pearl millet, proso millet, sorghum, spelt, teff, triticale.

Pseudo cereal grains are really neither grasses nor grains but their names are often misleading. Buckwheat is a pseudo cereal that is not really a wheat in any shape or form and has nothing to do with being a grass—it has no gluten and is not even a true grain. Pseudo grains are: amaranth, buckwheat, chia, and quinoa. These are not grains, have nothing to do with gluten and are totally safe to eat for Celiacs and other gluten sensitive people and also those who do not wish to eat grains. They are not grains with harmful proteins—though they are very high carbs foods with high GI.

There is also another family of foods that is often confused with grains but is, in fact, fine to eat and has no gluten. It is not true grain. This is the family of Pulses (legumes). This family contains chickpeas, common beans, common peas, fava beans, lentils, lima beans, lupins, mung beans, peanuts (yep, peanuts are not nuts!!), pigeon peas, runner beans (green beans in the US), and soybeans.

Seeds may be confused with grain but while they are not grains, they are not very good for you either. They are often used to produce oil so the technical name is “oil grains”. These are: black mustard, India mustard, rapeseed, sunflower seeds, safflower, hemp seed, poppy seed. Oils made from these seeds are unhealthy because 1) they are processed at high temperatures, where these polyunsaturated fatty acid rich fats oxidize and turn rancid, harming you and 2) they are very high in omega 6 fatty acids, which are inflammatory when we consume a lot of them.

Grain Sensitivity

Why is it important for you to test if you are grain sensitive by eliminating grains and see what happens? As noted above, my blood tests showed that I was not sensitive but when eating some wheat products I needed antihistamine. I was clearly sensitive even though no test picked that up.

Grains are harder to give up than sugar. Grains release morphine in the brain and contain a tremendous amount of carbs (1, 2). Since I started by giving up all sugar (sugar substitutes too), I can tell you that giving up sugar is nothing compared to giving up grain. The smell of sugar after being sugar free for 6 months or longer makes me nauseated. The smell of bread never seems to cause the same effect and, in fact, seems to make me crave it more. Bread is the worst case of addiction I have experienced so far.

Thus, one reason you may consider cutting grains out of your life is because of its incredible addiction causing element. However, that on its own is not meaningful if you are not bothered by grains. Here is a short list of the things that transpired during my first 2 months of being grain free and also 6 months sugar free:

  • I went completely allergy free both environmental and food (I lived on Zyrtec and had not needed one since I quit grains but still needed it after quitting sugar).
  • I had non-alcoholic fatty liver (caused by fructose from sugar since I don’t ever drink alcohol) that completely reversed to healthy liver after stopping grains.
  • I was told 5 years ago that I will need a cataract surgery but on my last visit I learned my cataract reversed.
  • I lost a few inches around the belly.
  • I have asthma that used to send me to ER regularly but no more—it is improving and is barely there.
  • My migraines that were already under control using the Stanton Migraine Protocol® became non-existent.

Some other positive things happened without my noticing without help. For example, I used to have arthritic finger joints that were swollen and red. I completely forgot about them until a couple of weeks ago someone in my migraine group complained about that very thing. Then, I looked at my hands and said “wait.. I used to have that”… it is all gone! So arthritic joints are no longer red or swollen. Wow. The changes were so incredible that it is worthy to note the many diseases that are associated with grains. I am copying all these from the Wheat Belly book—referenced below. If you have any of these conditions, please consider a grain quitting test period of 2-6 months and see if you are also sensitive to grains:

Addison’s disease, Alopecia areata, Ankylosing spondylitis, Antiphospholipid antibody syndrome, Autoimmune hemolyctic anemia, autoimmune hepatitis, Autoimmune inner ear disease, Autoimmune lymphoproliferative syndrome, Autoimmune or Idiopathic thrombocytopenic purpura, Behcet’s disease, Bullous pemphioid, Cardiomyopathy, celiac disease, Chronic fatigue syndrome, Chronic inflammatory demyelinating polyneuropathy, Cold agglutinin disease, CREST syndrome, Crohn’s disease, Dermatomyositis, Discoid lupus, Essential mixed Cryoglobulinemia, Food protein-induced enterocolitis syndrome, Grave’s disease, Gullain-Barré syndrome, Hashimoto’s thyroiditis, Idiopathic pulmonary fibrosis, IgA nephropathy, Insulin dependent diabetes (type I), Juvenile arthritis, Ménière’s disease, Mixed connective tissue disease, Multiple Sclerosis, Myasthenia gravis, Myocarditis, Pemphigus vulgaris, Pernicious anemia, Polychondritis, Polyarteritis nodosa, Polyglandular syndromes, Polymyalgia rheumatica, Polymyositis dermatomyisitis, Primary agammaglobulinemia, Primary biliary cirrhosis, Psoriasis, Raynaud’s syndrome, Rheumatoid arthritis, Sarcoidosis, Scleroderma, Sjörgen’s syndrome, Systemic lupus erythematosus, Takayasu’s arteritis, Temporal arteritis, Ulcerative colitis, Uveitis, Vasculitis, Vitiligo, and Wegener’s granulomatosis (1).

In addition, I want to also tell you what happens when you do the grain test, show improvements and wish to stay grain free but for whatever reason, outside of your control, you cannot. I traveled out of the country and could not find any food without grain! The symptoms of eating a half a regular wheat (white or whole) bun requires a bathroom nearby. Although IBS is not on the list above for some reason, since that was the first symptom I got after eating grains, I wish to add irritable bowel syndrome on the list.

I also would like to add anxiety and depression to the list above. Not eating grain removes a huge amount of carbs from your daily diet.  A large part of carbs convert to blood sugar (glucose) in your body (even complex carbs do) and sugar is well understood to cause anxiety and likely also depression. Sugar (and therefore carbs) also hurts teens and is likely at least one factor in the type of depression that may cause additional mental diseases (3). Because grains are so high in carbs, their connection to obesity is clear.

I think my message is strong. Do your body a huge favor and stop sugar and stop grains. I tested sugar against grains in my travels (this is not a clinical trial obviously, which would be great to have). While sugar (I ate a gelato and a flan-type very sweet dessert) did absolutely no harm or stomach/intestinal distress, eating half a burger bun that had the delicious cheese burned on it caused me several days of gastrointestinal misery. Hence the two evils, in order of damage to your body: (1) grains and (2) sugar.

I hope you find this information helpful though, without a doubt, overwhelming.

Sources

  1. Davis W (2014) Wheat Belly Total Health (Rodale, New York, NY).
  2. Perlmutter D & Loberg K (2014) Grain Brain: The Surprising Truth About Wheat, Carbs, and Sugar – Your Brain’s Silent Killers (Hodder & Stoughton).
  3. Rao TSS, Asha MR, Ramesh BN, & Rao KSJ (2008) Understanding nutrition, depression and mental illnesses. Indian Journal of Psychiatry 50(2):77-82.

We Need Your Help

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.

Yes, I would like to support Hormones Matter.

Photo by Marek Studzinski on Unsplash.

This article was published originally on March 9, 2016.

Migraine Energy Metabolism: Connecting Some Dots

8791 views

I have been reading some of the fascinating posts by Angela Stanton PhD concerning her research in migraine headaches. I regard the substance of her discussions as somewhat like dots on a chart that need to be connected. I learned a great deal about the chemistry involved in migraine. One of her comments that involves ion homeostasis in brain metabolism is fascinating. She noted that “serotonin is created by a normally functioning brain. Why it decreases or increases in the brains of migraineurs has always puzzled me. Should we not try to find out why?” That simple three letter word is the heart and soul of research and I believe that I may be able to add some information that might provide an answer.

Ehlers Danlos and Migraine

In one of Angela’s posts she discusses a subject which has been of interest to me for many years, the overlap of symptoms in disease. She noted that 60% of migraineurs have one type of Ehlers Danlos syndrome (EDS) and 43% of EDS have minor changes in DNA (SNPs) found in migraineurs. She concludes that they must be related. Over 70% of migraineurs have Raynaud’s disease and there is an overlap with EDS and Raynaud’s. Therefore, she concludes that these three diseases are variants. In  fact, there is an association between EDS, Postural Othostatic Tachycardia Syndrome (POTS) and a group of conditions known as mast cell disorders. EDS-HT, (one of the manifestations of this disease), is considered to be a multisystemic disorder, involving cardiovascular, autonomic nervous system, gastrointestinal, hematologic, ocular, gynecologic, neurologic and psychiatric manifestations, including joint hypermobility. Many non-musculoskeletal complaints in EDS-HT appear to be related to dysautonomia, consisting of cardiovascular and sudomotor dysfunction. Many of the clinical features of patients with mitral valve prolapse can logically be attributed to abnormal autonomic function. Myxomatous degeneration of valve leaflets with varying degree of severity is reported in the common condition of mitral valve prolapse.

A woman, with what was described as a “new” type of EDS, died after rupture of a thoracic aortic aneurysm. Autopsy revealed myxomatous degeneration and elongation of the mitral and tricuspid valves. Patients with POTS, a relatively common  autonomic disorder, may have EDS, mitral valve prolapse, or chronic fatigue syndrome and are sensitive to various forms of stress, as depicted in the clinical treatment of a dental patient affected by the syndrome. Dysautonomia has been described in the pathogenesis of migraine, featured by nausea, vomiting, diarrhea, polyuria, eyelid edema, conjunctival injection, lacrimation, nasal congestion and ptosis. In general, there is an imbalance between sympathetic and parasympathetic tone.

Energy Metabolism and Migraine

Technological studies have confirmed the presence of deficient energy production together with an increment of energy consumption in migraine patients. An energy demand over a certain threshold creates metabolic and biochemical preconditions for the onset of the migraine attack. Common migraine triggers are capable of generating oxidative stress  and its association with thiamine homeostasis suggests that thiamine may act as a site-directed antioxidant. It strongly suggests that migraine is a reflection of an inefficient use of brain oxygen.  An intermediate consumption of oxygen between deficiency and excess appears to be a necessity at all times. In fact,” moderation in all things” is an important proverb

Backing up energy deficiency, two cases of chronic migraine responded clinically to intravenous administration of thiamine. However, the authors are in error when they state in the abstract that “nausea, vomiting and anorexia of migraine may lead to mild to moderate thiamine deficiency”. An otherwise healthy 30-year-old male acquired gastrointestinal beriberi after one session of heavy drinking. Nausea, vomiting and anorexia relentlessly progressed. He had undergone 11 emergency room visits, 3 hospital admissions and laparoscopy within 2 months but the gastrointestinal symptoms  continued to progress, unrecognized for what these symptoms represented. When he eventually developed external ophthalmoplegia (eye divergence), he received an intravenous injection of thiamine which reversed both the neurologic and gastrointestinal symptoms within hours.

In other words it is important to be aware that nausea, vomiting and anorexia are primary symptoms of beriberi due to pseudohypoxia in the brainstem where the vomiting center is located. Chronic migraine has a well documented association with insulin resistance and metabolic syndrome. The hypothalamus may play a role. One of Angela’s comments concerns ion homeostasis in migraines. Thiamine triphosphate (TTP) can be found in most tissues at very low levels. However, organs and muscles that generate electrical impulses are particularly rich in this compound. Furthermore, TTP increases chloride (ion) uptake in membrane vesicles prepared from rat brain, suggesting that it could play an important role in the regulation of chloride permeability. Although this research was published in 1991, the exact role of TTP is still unknown. It has been hypothesized that thiamine and magnesium deficiency are keys to disease.

Angela wondered why serotonin might be increased or decreased in migraineurs. I strongly suspect that it is due to brain thiamine deficiency as the ultimate underlying cause of the migraine. In a review of thiamine metabolism, it was pointed out that metabolites could be high or low according to the degree of the deficiency. Victims of beriberi were found to have either a low or a high potassium according to the stage of the disease. If they were found to have a low acid content in the stomach, treatment with thiamine resulted in a high acid content before it became normal. If the stomach acid was high it would become low before it became normal. Since low and/or high potassium levels may be found in the blood of critically ill patients, thiamine deficiency should be a serious consideration in the emergency room or ICU Thiamine deficiency may be the answer for the fluctuations of serotonin observed in migraine.

Redefining Disease Models

According to the present medical model, each disease is described as a constellation of symptoms, physical signs and laboratory studies, each with a separate etiology. The overlap discussed by Angela suggests that the various conditions nominated have a common cause and that they are indeed nothing more than variations. If energy metabolism is the culprit, it would make sense of the infinite variations according to the degree and distribution of cellular energy deficiency. EDS-HT, described above is reported as a multi-system disease, exhibiting cardiovascular, autonomic gastrointestinal, hematologic, ocular, gynecological and psychiatric symptoms as well as the joint mobility. It seems to be impossible to explain this multiplicity without invoking energy deficiency as the cause. People with prolapsed mitral valve and a patient with a “new” form of EDS, reportedly have myxomatous degeneration as part of their pathology and it is tempting to suggest that such an important loss of structure might well be because of energy deficit.

The controls of the autonomic nervous system are located in the lower part of the brain that is particularly sensitive to thiamine deficiency and beriberi is a prototype for thiamine deficiency in its early stages. Dysautonomia is frequently reported as part of many different diseases, offering energy deficiency as the etiology in common. Yes, it is true that thiamine is not the only substance that enables the production of ATP. Nevertheless, it seems to dominate the overall picture of energy metabolism. It has long been considered the essential focus in the cause of beriberi, even though all the B complex vitamins are found in the rice polishings. Milling and the consumption of white rice was the prime etiology of the disease when it was common in rice consuming cultures.

We Need Your Help

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.

Yes, I would like to support Hormones Matter. 

Image by Chen from Pixabay.

This article was published originally on June 22, 2020.

Severe Gut Dysmotility, Dysautonomia, and Malnutrition

14307 views

History of Gut Pain and Epigenetic Malnutrition

I am 32 years old and have suffered from ill health all of my life. From as long as I can remember, I’ve experienced gut pain, fatigue, and hyper-sensitivity. If there was something to catch, I would catch it. I react to everything and suffer chronic gut and nerve pain.

As a young child, I had chronic abdominal pain in the lower right quadrant and would often be buckled over in pain. Doctors thought it was appendicitis so removed my appendix but the pain continued. I was chronically tired and sensitive to the cold. I would struggle to get up in the morning to go to school and would stand in the shower dousing myself in hot water for as long as I could to warm up my body. Cold hands and feet has continued into adulthood.

I was born into a family that struggled with spine, neck, head, and gut issues. I was raised on cow’s milk and barley formula as my mother was unable to breastfeed. My mother and aunt had Ehlers Danlos Syndrome. I was diagnosed with it 8 years ago. My mother has Arnold Chiari malformation, my aunt scoliosis. They were post-war children. My grandmother had spinal issues and likely was very deficient in the B Vitamins. My grandfather, aunt and mother all suffered from gut issues, my grandfather eventually dying from bowel cancer. He was sensitive to many foods, particularly FODMAP rich ones.

I had many allergies – dust mite, grass, cow’s milk etc. I suffered an adverse reaction to the MMR vaccine when I was eight – with an intense full body rash. I was bedridden with intense fatigue for two weeks. Around the same time, tests found huge numbers of the parasite dientamoeba fragilis (D fragilis) in my stool. Dientamoeba fragilis together with Blasto hominis, another intestinal parasite, have been found in large numbers in my stool ever since. Despite trying many things, I’ve never been able to get rid of them.

Increasing Food Sensitivities, Weight Loss, Amenorrhea, and Osteoporosis

By the age of ten, I was struggling with depression and increasing sensitivities to many foods – particularly gluten and dairy. The only thing that seemed to help was exercise. I played competitive soccer, did cross-country and athletics and rode my bicycle everywhere. At this time, I started becoming vegetarian, in response to my growing concern about the state of the world, animal cruelty and the environment. This meant consuming a lot of gluten and dairy based foods. As I entered puberty, my body couldn’t keep up with the energy demands of this stage of development and I began losing weight rapidly, despite eating a ton of carbs.

I was working hard at school, and have always pushed myself to succeed, but as my body became more and more unwell, I struggled with focus and concentration. My depression became worse and the world felt very bleak. Everything I ate caused pain, bloating, and fatigue. I was eating lots of pasta and cheese to try to fuel my sports but I continued to lose more and more weight. Throughout my parents had been doing everything to investigate and treat the cause of the illness, but I just kept getting more and more unwell. My weight dropped dangerously low, I developed bradycardia and I struggled to think clearly.

The years passed through adolescence and into early adulthood. Through sheer willpower and making myself eat, despite the intense pain it caused, including severe abdominal cramping, sulfur gas, burning, over-heating, swelling, headaches and more, I could get some extra weight on for a while, but it would quickly fall off again. My growth and development suffered. My bones froze in time – a bone age at 19 showed the bones thought they were 13. I had amenorrhea. I developed osteoporosis. An endoscopy showed an inflamed caecum and inflammatory spots in my sigmoid colon.

Through my teenage years and twenties, I had to follow extremely restrictive diets. I had to quit being vegetarian, as it didn’t leave anything to eat and my body clearly needed nutrients from animal foods to survive. I reacted to FODMAPs, histamines, too much fat, too many carbs – there was so little I could eat without feeling extremely unwell.

I would often experience intense nausea attacks, severe bouts of sudden pelvic pain, stomach bugs, and caught giardia several times. I got shingles at the age of 21, a strange fever induced by tick bites at 22, and viral meningitis at the age of 26.

Gut Dysmotility, Progressive Neuropathy, and Migraine

My gut was becoming lazier and lazier. At the age of 23, I wound up in emergency in extreme abdominal pain after it stopped moving altogether and my intestines became fully impacted. The pain was excruciating. Eight sachets of heavy duty laxatives did nothing to the situation. I was started on prucalopride (an enterokinetic drug) to help get it moving again. I cannot function without this drug now. When I stop taking it, my gut ceases to move altogether.

Through my twenties, I also started suffering from tingling in my arms and legs and increasing peripheral neuropathy. By the age of 27, I would experience episodes where an entire arm or leg was completely numb. Blood work showed my B12 had dropped very low. I went on B12 injections and increased food sources of B12. Things improved for a while but then the neuropathy returned. I subsequently developed Reynaud’s syndrome.

Around the same time, I started developing worsening headaches and a few years later migraines. The migraines were so bad I couldn’t move without intense vertigo and extreme nausea. I had to lie in a pitch dark room and wait it out. Some migraines were preceded by a confusional aura where I couldn’t tell what anyone was saying to me. I could understand the individual words but not when they were strung together in sentences. The vertigo continued for about 6 months.

Exercise became more painful too. Despite being fit, I would suffer from intense DOMS, headaches and nausea after running. Muscles started becoming more and more sore and painful despite taking electrolytes, being careful about my nutrition and warming up and down.

I woke up every morning feeling exhausted and sleep studies revealed I had developed sleep apnea – something I had thought wasn’t so common in women of my age and build.

Stress Fractures, Worsening Neuropathy, and Hypoxia

Earlier this year, I wound up with a bad stress injury in my hip – several stress fractures in my femoral neck despite no blow to the area and no fall – which doctors thought quite unusual for someone of my age who was running low mileage recreationally. The injury brought with it chronic nerve pain along my right side on top of worsening neuropathy.

I would wake up in the middle of the night with numb limbs. Nerves would fire spontaneously in my legs and arms. Nerves in my jaw felt constantly stimulated and my tongue would swirl uncontrollably around in my mouth. My gut stopped moving more and more frequently and I would have to take laxatives regularly to clear it out.

I had severe GI burning and was unable to eat anything other than clear broth and coconut water without pain. An endoscopy found bleeding in my sigmoid colon. My hemoglobin dropped 17 points and I struggled with breathlessness, unable to get up a flight of stairs or even walk a few hundred meters without feeling deeply exhausted.

To date, I have been diagnosed with POTS, Ehlers Danlos Syndrome, dysautonomia, gastroparesis,  severe osteoporosis of the lumbar spine, and peripheral neuropathy. This comes against the backdrop of  the gut problems experienced since childhood. These other health issues were, to no small degree if not caused, then significantly worsened by my gut issues. I have had long periods of time where I couldn’t absorb food or eat very much due to my gut problems, so I have been underweight for most of my life. As a result, I am likely deficient in many nutrients.

Current Diet, Activity, and Recent Testing

Diet

  • Breakfast: steamed greens (e.g. some combo of broccoli, beans, spinach, asparagus, etc.), 1-1.5 scrambled organic egg, 1 cup bone broth with 1 desert spoon collagen peptides + 1 desert spoon seaweed.
  • Lunch: 1 cup bone broth with 1 desert spoon collagen peptides + 1 desert spoon seaweed with 1 egg yolk stirred through OR some homemade chicken liver pate on carrot sticks instead of the egg yolk; 1 raw carrot and/or raw cucumber sticks; sometimes 1 packet of roasted nori.
  • Snacks: 1 glass homemade carrot, celery and ginger juice; some blueberries and/or a kiwi fruit.
  • Dinner: some protein (e.g. half a single piece of salmon, 8 prawns, small amount of red meat), green veggies (e.g. steamed beans, asparagus, spinach, broccoli), a starchy veggie (e.g. pumpkin, sweet potato, beetroot), sometimes some green salad.
  • After dinner: a few blueberries and/or pieces of mandarin, 30-40g vegan carob (cocoa butter, carob powder, no sugar), a cup of herbal tea.

Activity and Exercise

  • Daily: walking – approx. 12-13km over the course of a day including daily activities, as measured on Fitbit.
  • Running: 3x per week – currently at 9km total over the week; very slow 6’20” pace.
  • Yoga: 2x per week 1hr classes – beginner.
  • Physio: 3x 20-25min per week – core exercises for lower back, hips, shoulders etc as set by exercise physiologist.

Recent Testing

These tests were conducted by RN Labs and Great Plains Laboratory before I began thiamine.

Stool – GI-360

  • Klebsiella pneumoniae – very high
  • Proteobacteria – very high
  • Akkermansia muciniphila – very high
  • Escherichia spp. – very high
  • Bacteroides spp. – very high
  • Endolimax nana – very high
  • Eubacterium siraeum – very high
  • Enterobacter cloacae – high
  • Elastase – low
  • Butyrate – low
  • Clostridia – very low
  • Faecalibacterium prausnitzii – very low
  • Veillonella spp. – very low
  • Secretory IgA – very low

Urine – Organic Acid Test

Yeast and fungal markers:

  • 3-Oxoglutaric – 0.69 (<0.33) – Elevated levels of 2-Oxoglutaric suggest dietary vitamin deficiencies or supplementation with 2-ketoglutaric acid. Coenzyme A (derived from pantothenic acid), flavin adenine dinucleotide (FAD) (derived from riboflavin), and thiamine are required for conversion of 2-oxoglutaric acid to succinyl-CoA.
  • Arabinose – 70 (<29) – Urinary levels higher than the reference range may simply reflect a high dietary intake of these fruits. However, arabinitol (which converts to arabinose) is also documented to be produced by the Candida genus of yeast. When elevated in body tissues, it can link with lysine and arginine. In theory, this may block some binding sites for coenzyme pyridoxal phosphate, biotin or lipoic acid at the lysyl residue in apoenzyme proteins. This would impair enzymatic processes, such as transamination of amino acids (in spite of “normal” intake of vitamin B6). A finding of high arabinose, without dietary intake of the above-mentioned fruits, suggests a stool analysis or other tests/examinations for Candida overgrowth.
  • Tricarballylic – 2.3 (<0.44) – Tricarballylic acid is a chemical by-product released from fumonisins during passage through the GI tract. Fumonisins are fungal toxins produced primarily by F. verticillioides. Tricarballylic acid is an inhibitor of the enzyme aconitase and therefore interferes with the Krebs cycle.

Bacterial markers:

Oxalate metabolites:

  • Glyceric – 16 (0.77-7) – High glyceric levels on an organic acids test usually relates to primary hyperoxaluria type 2.
  • Oxalic – 389 (range = 6.8-101) – High oxalic with or without elevated glyceric or glycolic acids may be associated with the genetic hyperoxalurias, autism, women with vulvar pain, fibromyalgia, and may also be due to high vitamin C intake.

Glycolytic Cycle Metabolites:

  • Lactic – 51 (<48) – Elevated by a number of nonspecific influences, such as vigorous exercise, bacterial overgrowth of the GI tract, shock, poor perfusion, B-vitamin defciency, mitochondrial dysfunction or damage, and anemia, among others.

Mitochondrial Markers – Krebs Cycle Metabolites:

  • Succinic – 24 (<9.3) – The most common cause of elevated succinic acid is exposure to toxic chemicals which impairs mitochondria function.
  • Malic – 2.7 (0.06-1.8) – Higher levels of malic acid in urine indicates inefficiencies in energy production. Elevated malic acid values suggest increased need for niacin and CoQ10. When malic acid is simultaneously elevated with citric, fumaric, and alpha-ketoglutaric acids, it strongly suggests cytochrome C oxidase deficiency, indicating dysfunction in the mitochondrial energy pathways.
  • Aconitic – 6.6 (6.8-28) – Elevated in mitochondrial disorders. Aconitase metabolizes citric and aconitic acids, and is dependent on glutathione. Increased levels may indicate additional requirement for reduced glutathione.

Neurotransmitter Metabolites:

  • HVA / VMA Ratio  – 2.3 (0.16-1.8) – An elevated ratio is often the result of decreased conversion of dopamine to norepinephrine by the enzyme, dopamine beta-hydroxylase. This inhibition is commonly caused by Clostridia by-products, including HPHPA, 4-cresol, and 4-hydroxyphenylacetic acid, which are also measured in the OAT.
  • Dihydroxyphenylacetic (DOPAC) – 3.9 (0.08-3.5) – DOPAC levels may be elevated due to inhibition of dopamine beta hydroxylase (DBH) from Clostridia metabolites, the mold metabolite fusaric acid, pharmaceuticals such as disulfiram, food additives like aspartame, or to deficiencies of the DBH enzyme due to copper deficiency, vitamin C deficiency, or malic acid deficiency.
  • Quinolinic – 0.58 (0.85-3.9)

Ketone and Fatty Acid Oxidation:

  • 3-Hydroxybutyric – 5.7 (<3.1) – A moderate urinary increase in 4-hydroxybutyric acid may be due to intake of dietary supplements containing 4-hydroxybutyric acid, also known as gamma-hydroxybutyric acid. Very high levels may indicate the genetic disorder 3-methylglutaconic aciduria involving succinic semialdehyde dehydrogenase deficiency.
  • Acetoacetic – 32 (<10) – High levels of acetoacetate in blood may result from decreased availability of carbohydrates (eg, starvation, alcoholism) and/or abnormal use of carbohydrates storage (eg, uncontrolled diabetes, glycogen storage diseases).
  • Methylsuccinic – 5.7 (0.1-2.2) – Very elevated values may indicate a genetic disorder. Fatty acid oxidation defects are associated with hypoglycemia, and lethargy. Regardless of cause, intake of dietary supplements containing L- carnitine, or acetyl-L-carnitine may improve clinical symptoms.
  • Sebacic – 0.39 (<0.24) – Sebacic acid is a breakdown product of fatty acids. Higher levels can be seen when the breakdown of fats is impaired or blocked. May be associated with Vitamin B2 (aka Riboflavin) deficiency. Riboflavin is needed for fatty acid breakdown.

Nutritional Markers:

  • Vitamin B2 – 0.38 (0.04-0.36)
  • Vitamin C – 598 (10-200)

Discovering Thiamine

During this time, I was fortunate enough to learn about the work of Dr. Lonsdale and Dr. Marrs and have started talking high dose Lipothiamine. After several months, the chronic nerve pain is reducing and my gut has improved somewhat however I still struggle with pain and am very sensitive to a lot of foods.

I also have been learning more about the role of genetics and epigenetics in my condition. I am compound heterozygous for the MTHFR mutations and also have SNPs of the PEMT, NOS3, COMT, MOAB, GST genes alongside a number of other SNPs (including CYP, PONI, GAD, GGH, HTR2A, MMAB, NAT2, SLC, SULT, ALD, CBS, DHFR, MTR, TCN1, CBS, DDC, DRD and more).

I am currently taking 1000mg of Lipothiamine orally per day. If IV was possible, I would do that given my gut problems, but we have not been able to find anyone able to administer that here in Australia. In addition to the Lipothiamine, I take magnesium (800mg), liposomal Vitamin C (6000mg), glutathione (450mg), probiotics, a multivitamin, cod liver oil, B-complex, Alpha Lipoic Acid, zeolite, zinc and methylated b12 (shots occasionally and drops in between).

I follow the Auto-immune Protocol diet (including all fresh, unprocessed food, no sugar, lots of veggies and fruits, organic fish, meat, eggs, etc.), walk daily, practice yoga, meditation, daily stretching and gentle jogging a few times a week.

Improvement with Thiamine and Outstanding Questions

In recent weeks, I’ve been finding the nerve pain has significantly improved on this high dose (1000mg) of Lipothiamine however my gut symptoms are quite bad – with a lot of GI burning. I experienced this when I first started taking the Lipothiamine but it subsequently subsided so I am unsure if this is something I need to just push through or if I am on too high a dose.

I would love to hear others experience and hope that sharing mine is of use to others. I am deeply grateful to Dr. Lonsdale and Dr. Marrs for their groundbreaking work in this area and hope to do whatever I can to spread the word about this vital information so that more people can experience full health and happiness in their lives.

We Need Your Help

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.

Yes, I would like to support Hormones Matter. 

This story was published originally on December 14, 2020.

Lessons Learned About Recovering From Thiamine Deficiency

27614 views

It has been a year since I started taking high dose vitamin B1 (thiamine) for a variety of chronic symptoms including: Lyme disease, CFS/ME, endometriosis, histamine intolerance and other food intolerances, SIBO, chronic complicated migraine with aura, chronic insomnia, chronic severe light and exercise intolerance, to name a few. By traditional medicine, each of these conditions was considered unique and thus treated individually. I have learned that they are not separate conditions, but simply different manifestations of disturbed mitochondrial metabolism. In my case, all of this was related to deficiencies in thiamine and other vitamins and minerals. My recovery has been difficult and I have made many mistakes along the way, but hopefully, I learned from them. I am publishing my story here so that you may also learn from my experience. You can read my original story here.

Lesson 1: Magnesium Formulation Is Important

Magnesium is required to change thiamine from its free form to the active form called thiamine pyrophosphate (TPP). Without sufficient magnesium, supplemental or consumed thiamine remains inactive and basically useless. This means that magnesium deficiency can cause a functional thiamine deficiency. I understood this, but what I did not understand, was that there are many different formulations of magnesium supplement, each with pros and cons relative to the individual’s specific needs. I thought they were all interchangeable.

For me, and for individuals with heart related symptoms, magnesium taurate is preferred. One of my first mistakes I made was to ignore Dr. Lonsdale’s comments in which he talked about the importance of taking magnesium taurate. I understood it as meaning that magnesium was important and did not understand that it was a special form of magnesium with cardio protective effects due to the taurine content.

When I initially took magnesium taurate, I noticed an increase in my wellbeing, especially in the fatigue and headache that I would develop after walking around the house or being intellectually active, but I didn’t know that it was the taurine component that was responsible for that change. For a while, I stopped taking magnesium taurate and returned to using other forms of magnesium (magnesium citrate or malate). They did not help as much as the taurate. During this time, I also realized that I do not tolerate magnesium glycinate or bisglycinate. If I take that form, I have a terrible headache on the right side of my head. The glycine activates glutamate via NMDA receptors in the brain causing some excitatory activity. This may be why I could not tolerate it. Others do not have a problem with magnesium glycinate.

Over the last two weeks, I was that taking magnesium malate and taurine separately.  I wanted to avoid spending a lot of money on magnesium taurate, so I tried to buy a cheap form of magnesium – magnesium malate – and combine it with taurine which is inexpensive when purchased in bulk. This did not provide the same benefits as magnesium taurate. I experienced chest pressure and pain and my resting pulse went back to being higher than 65-70 BPM. Once I began taking magnesium taurate again, my heart rate and chest pain/pressure disappeared.

So the lesson here, is that different formulations of magnesium work for different people. It is important to research which form may work better for you and your set of symptoms and not to assume they are interchangeable.

Lessons 2-3: TTFD Degrades with Heat and Light and Interruptions to Thiamine Repletion Cause Setbacks

One other important thing I realized was that thiamine is destroyed by UV light. This meant that in August, when I put my TTFD powder (a form of synthetic thiamine that crosses cell barriers more easily) in a transparent container on the kitchen table, and left it there all day long while sunlight shone directly on it through the big windows in my kitchen, it was being destroyed every day. I experienced a big crash during that month, especially since I was taking all the other vitamins and minerals that were serving as co-factors. I could not explain it and was thinking that even this therapy was losing its effect, that my recovery was over, and that I could no longer hope for a better quality of life.

However, in September, I received my new order of TTFD powder. The very day I received it, I took my regular dosage from this new batch. The difference was incredible in terms of my symptoms. It was night and day. The effects were truly remarkable and unmistakable. I’m very careful now with my TTFD powder and make sure it stays in an opaque container.

Lesson 4: Treating My Carnitine Deficiency. Once Again Formulation Matters.

Another thing that I had not been able to fix was my carnitine deficiency. This was discovered by the neurologist who suspected that I was dealing with a FAOD (fatty acid oxidation disorder) or a mitochondrial disease back in February. Free carnitine levels in blood are supposed to be between 17 and 49, while mine was 6. I tried taking various forms of carnitine (L-carnitine, acetyl-L-carnitine, l-carnitine tartrate, Optimized Carnitine, propionyl-L-carnitine) but they all had a laxative effect which was aggravating my symptoms. I asked my neurologist if there were injections with carnitine that could replace the pills, but was left to figure it out for myself. And I did.

Through much research, I found a form that worked for me. It is called Propionyl-L-Carnitine. This form of carnitine is a known agent that protects against ischemia  – quote from the linked study:

Free CoA and propionyl-CoA cannot enter or leave mitochondria, but propionyl groups are transferred between separate CoA pools by prior conversion to propionyl-L-carnitine. This reaction requires carnitine and carnitine acetyl transferase, an enzyme abundant in heart tissue. Propionyl-L-carnitine traverses both mitochondrial and cell membranes. Within the cell, this mobility helps to maintain the mitochondrial acyl-CoA/CoA ratio. When this ratio is increased, as in carnitine deficiency states, deleterious consequences ensue, which include deficient metabolism of fatty acids and urea synthesis.

This form of carnitine has made a huge difference in my health, especially with one particular symptom – the wet cough that had accompanied my walking around the house since April 2021.

More Energy and Exercise Tolerance with the Correct Supplements

In October, I began taking magnesium taurate and I also added higher doses of potassium to my regimen, just to see if I tolerated them. I had taken rather lower doses of potassium on and off since starting high dose TTFD. One of the things higher potassium solved, was the aftertaste (or after smell) that I used to get with 300 mg TTFD. I know most people dislike it, since it’s a sulphur smell, although I never disliked it.

After about two weeks on magnesium taurate and higher potassium intake with every dose of TTFD, I began propionyl-L-Carnitine HCL and Optimized Carnitine again. I noticed that they no longer had a laxative effect and I doubled my dose of propionyl-L-carnitine HCL so that I was taking about 600 mg three times a day, combined with one capsule of Optimized Carnitine.

After about a week, I noticed that I had more energy. I no longer needed to eat every three or four hours, I no longer had dyspnea or wet cough during the day when I was walking around the house. All those symptoms speak of cardiomyopathy and were resolving with the supplements. I still need to avoid sleeping on my left side and instead sleep on an incline on my back to be able to sleep through the night, but it my sleep is so much better now. My headache, something that has tortured me since I attempted intermittent fasting in 2018, is now gone. This makes me think that the right-sided headache is one of the symptoms of my heart not being able to do its job properly.

One of the things that helps the most with mitochondrial biogenesis is exercise and it is highly recommended for people with mitochondrial disease. However, in many studies it is noted that if cardiomyopathy is present, then this therapeutic cannot really be used. This is important because many people recovered and improved their exercise intolerance, but still develop symptoms after too much physical effort and wonder what they could further do to improve their symptoms.

After finding the right supplements to correct my deficiencies, I’m able to walk around the house without it aggravating or triggering my symptoms. Prior to this, I was largely bedridden and would have flares every time I attempted to do anything. I have a device that measures how many steps I take and it shows that I walk at least 1000 steps per day when I do nothing and spend 95% of the day in bed.
Now I’m able to go out and walk around my apartment building, which is about 150 meters and do not suffer any consequence. I tried walking more than that and if I do, my main symptoms come back (insomnia, heart symptoms and headache). It is progress, but I still have a long way to go.

I am also capable of learning a little bit of German every day. While my memory is still very poor, at least what I learn “stays” in my brain and the knowledge/understanding of the language accumulates slowly day by day. Intellectual activity no longer triggers the terrible, hours-long headache it once did.

Improved Sleep: Correcting the “Histamine Bucket”, Insomnia, and Heart Symptoms

Since becoming ill, I have had insomnia, likely due to my heart struggling to maintain a constant rate and rhythm. One of the very first things I heard that could explain my constant awakenings especially around 2-3am in the morning is the theory of the “histamine bucket”. This theory argues that around 2-3 am, there is some shift in our body’s physiology and histamine is released. Thus, if you already have a lot of histamines in your body, due to mast cell activation or low DAO, your histamine bucket is full and it will make you wake up. While this is plausible, I do not believe it is sufficient to cause these early morning awakenings. It is not a cause in and of itself, but one of the many things that get dysregulated downstream after nutritional deficiencies are ignored for a period of time.

My chronic early morning insomnia began in 2015, when my thiamine levels dropped and the aggravated mitochondrial disease began to unfold. I remember waking up and I would feel my heart beating more strongly (though not pounding), sometimes I would hear a pulsatile “whoosh” sound in my ear. I would also feel weird sensations in my chest, though not pressure. During those months, I would experience on and off dyspnea while walking to my office. I didn’t think anything of it because I approach my health in the exact opposite manner people with real hypochondria do. I just thought it was a subjective “feeling”, thus not worthy of an inquiry into a possible objective cause for it.

The experience I had in the last few weeks with the supplements mentioned above makes me doubt that mast cell activation or histamine “bucket” overflow are the main causes of waking up constantly at 2 or 3 a.m. I believe it’s most likely connected with the impact histamines have on the heart – they are a known factor in developing heart failure and using antihistamines does help in preventing/postponing the onset of heart failure. This also explains why of all medications, antihistamines were the only ones that helped with a lot of my symptoms in 2016/2017.

When I started taking magnesium taurate, potassium in high enough doses and propionyl-L-carnitine, my heart symptoms improved and my sleep improved. Recently, I woke up at 3 a.m. and I immediately took a low dose of magnesium taurate and a little bit of potassium citrate. I fell asleep again in 15 minutes and in the morning I felt ok. In the past, when I would take something like L-theanine. It would force my body to go back to sleep immediately after 2 a.m., but I would feel much worse in the morning, more than if I just had insomnia.

Restoring Normal Heart Rate

One of the most important things has been reducing my resting pulse from 75-80 BPM to my normal, prior to 2016 resting pulse which used to be 60-65 BPM. I remember I used to complain about it and doctors or nurses just brushed me off. They would say that if it is under 90 BPM, then it is not a medical symptom of anything. I knew they were wrong, but how could I argue? Somehow these people in white coats think that heart failure or other cardiac diseases start out of the blue, when in fact these diseases represent years and years of ignored symptoms before the onset of the full-blown disease with typical manifestations is recognized.

Lessons Learned

Everything that helps my heart function better and recover faster improves all of my symptoms, no matter how much they may seem unrelated. This is what I observed about my own body and I encourage everyone to listen to their body and understand that all symptoms are related.

If one version of one supplement does not work, try another form and combine it with different forms and dosages of other supplements. By supplement, I understand all substances that are naturally found in food or produced by the body.

When I saw that simple forms of L-carnitine don’t have an observable effect, I simply started searching for better forms of carnitine and found propionyl-L-carnitine, which is the physiologically active form of carnitine. Why I looked for other forms of carnitine? Because I learned from experience that high dose vitamin B1, as thiamine HCL didn’t help, but that high dose Allithiamine (a formulation with TTFD) helped and still helps my body working again as it should.

I found taurine (again) by searching for supplements that improve heart failure symptoms. When I first heard about it while reading one of Dr. Lonsdale’s comments, I didn’t understand why it was important.

No one should ever quit trying to figure out their own matrix of symptoms. Begin with the vitamins and minerals, while at the same time addressing infections, limiting damaging diets, limiting exposure to toxic substances and so on. I firmly believe that all diseases with chronic fatigue involve some degree of mitochondrial dysfunction – inherited or acquired. The prototype documented, unquestionable illness that causes hundreds of symptoms, i.e. a multi-systemic illness, is inherited mitochondrial disease.

I know personally of two other people who were completely bedridden, suffering from constant light intolerance, having to live in my bed for two years with a sleeping mask all day and all night, unresponsive to any treatment or approach promoted by the online integrative medicine doctors and communities. I did not think I would ever be able to become house bound, not able to tolerate light, to think or cook for myself. The ability to no longer be bedridden and forced to live in total isolation in darkness and to be house bound is nothing short of a miracle. I owe that to thiamine.

Usually people who end up in that state for so long never recover because all known alternative treatments are exhausted and high dose thiamine for chronic illness is virtually unheard of. I will make sure to do everything in my power to change this, no matter the costs, because there’s just too much unnecessary suffering out there.

We Need Your Help

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.

Yes, I would like to support Hormones Matter.

This article was published originally on December 9, 2021. 

Topamax: The Drug with 9 Lives

226680 views

Is Topamax a Wonder Drug?

Over the past week alone, I have talked to several people about their doctor visits. Each one of them had a different illness and each one of them was prescribed the drug Topamax.  I cannot help but wondering, how it is possible that one medication can treat so many disparate illnesses. I suspect it cannot and the overreach is driven more by marketing than medicine. This led me to do some digging into Topamax.

What I found is not good. Topamax is prescribed for a broad scope of illnesses for which there is likely little evidence of its efficacy. Take a look at the list below.

Illnesses or Conditions for which Topamax is Prescribed

  1. Obesity1. Medicine: Topamax
  2. Seizures1. Medicine: Topamax
  3. Migraine1,2. Medicine: Topamax
  4. Impulsivity3. Medicine: Topamax
  5. Diabetes with nerve damage4. Medicine: Topamax
  6. Bipolar disorder5. Medicine: Topamax
  7. Depression6. Medicine: Topamax
  8. Alcohol addiction7: Topamax
  9. Fibromyalgia8. Medicine: Topamax

I would like to add a 10th to that: I have broken a nail…can I get Topamax?

Honestly, off-label prescribing has gone too far! Does Topamax really treat so many disparate conditions that doctors prescribe it for everything, even when it is not FDA approved for these conditions? I must add that Topamax is one of the most dangerous drugs in the prescription market today. Not only is it a diet pill made from sugar derivatives  (actually a sugar substitute) but it uses two dangerous methods (blocking both voltage dependent calcium and voltage gated sodium channels at once) to achieve what several classes of drugs normally do separately; and thus, with one medicine it affects and potentially damages the two circuits that are critical for brain function. Topamax (an anticonvulsant under additional name Topiramate (generic) and in time release Trokendi XR) is important to discuss because it was initially formulated as a diet pill. Yet over 50% of the new members who join my migraine group arrive with Topamax on their prescription list.

I have yet to find a single person on this drug who is not seriously considering dropping it due to its adverse effects, not to mention that it does not appear to work as a pain killer. Unfortunately, Topamax is difficult to quit. The most difficult problem is that doctors are under the false impression that a drug that blocks the voltage dependent calcium and potassium channels can just be easily stopped by a few days of reduction. However, since the voltage dependent calcium channel is a high voltage channel, for some people the discontinuation may end in seizures.

Evidence is also accumulating that Topamax can cause brain damage 4. Personally, I have heard of many cases where it in fact has done just that.

Topamax is a sugar substitute that failed as a diet pill but is somehow permitted by the FDA to be used for epileptic seizures. It also received approval for use against migraines. The reasons for such a turn of events is unclear; how can a drug that fails approval for a diet pill suddenly be a perfect match for seizures and migraines? Don’t we all wish for sugar pill to be a pain killer? Unfortunately, sugar or sugar substitutes do not have such serious adverse effects  as Topamax (they happen to have different ones).

Adverse effects of Topamax

If we look at the list of adverse effects associated with this drug (as provided by Wikipedia – Topamax), it is clear that Topamax is not very safe. Indeed, the list is very long.

Dizziness, Weight loss, Paraesthesia (pins and needles), Somnolence, Nausea, Diarrhea, Fatigue, Nasopharyngitis – common cold, Depression, Weight gain, Anaemia, Disturbance in attention, Memory impairment, Amnesia, Cognitive disorder, Mental impairment, Psychomotor skills impaired, Convulsion, Coordination abnormal, Tremor, Lethargy, Hypoaesthesia, Nystagmus, Dysgeusia, Balance disorder, Dysarthria, Intention tremor, Sedation, Vision blurred, Diplopia, Visual disturbance, Vertigo, Tinnitus, Ear pain, Dyspnoea, Epistaxis, Nasal congestion, Rhinorrhoea, Vomiting, Constipation, Abdominal pain, Dyspepsia, Dry mouth, Stomach discomfort, Paraesthesia oral, Gastritis, Abdominal discomfort, Nephrolithiasis, Pollakisuria, Dysuria, Alopecia (hair loss), Rash, Pruritus, Arthralgia, Muscle spasms, Myalgia, Muscle twitching, Muscular weakness, Musculoskeletal chest pain, Anorexia, Decreased appetite, Pyrexia, Asthenia, Irritability, Gait disturbance, Feeling abnormal, Malaise, Hypersensitivity, Bradyphrenia, Insomnia, Expressive language disorder, Anxiety, Confusional state, Disorientation, Aggression, Mood altered, Agitation, Mood swings, Anger, Abnormal behavior, Crystal urine present, Tandem gait test abnormal, White blood cell count decreased, Bradycardia, Sinus bradycardia, Palpitations, Leucopenia, Thrombocytopenia, Lymphadenopathy, Eosinophilia, Depressed level of consciousness, Grand mal convulsion, Visual field defect, Complex partial seizures, Speech disorder, Psychomotor hyperactivity, Syncope, sensory disturbance, Drooling, Hypersomnia, Aphasia, Repetitive speech (stuttering), Hypokinesia, Dyskinesia, Dizziness postural, Poor quality sleep, Burning sensation, Sensory loss, Parosmia, Cerebellar syndrome, Dysaesthesia, Hypogeusia, Stupor, Clumsiness, Aura, Ageusia, Dysgraphia, Dysphasia, Neuropathy peripheral, Presyncope, Dystonia, Formication (the sensation of insects crawling under the skin), Visual acuity reduced, Scotoma, Myopia, Abnormal sensation in eye, Dry eye, Photophobia, Blepharospasm, Lacrimation increased, Photopsia, Mydriasis, Presbyopia, Deafness, Deafness unilateral, Deafness neurosensory, Ear discomfort, Hearing impaired, Dyspnoea exertional, Paranasal sinus hypersecretion, Dysphonia, Pancreatitis, Flatulence, Gastrooesophageal reflux disease, Hypoaesthesia oral gingival bleeding, Abdominal distension, Epigastric discomfort, Abdominal tenderness, Salivary hypersecretion, Oral pain, Breath odour, Glossodynia, Calculus urinary, Urinary incontinence, Haematuria (blood in urine), Incontinence, Micturition urgency, Renal colic, Renal pain, Anhidrosis, Hypoaesthesia facial, Urticaria, Erythema, Pruritus generalized, Rash macular, Skin discolouration, Allergic dermatitis, Swelling face, Joint swelling, Musculoskeletal stiffness, Flank pain, Muscle fatigue, Metabolic acidosis, Hypokalaemia, Increased appetite, Polydipsia, Hypotension, Orthostatic hypotension flushing, Hot flush, Hyperthermia, Thirst, Influenza like illness, Sluggishness, Peripheral coldness, Feeling drunk, Feeling jittery, Learning disability, Erectile dysfunction, Sexual dysfunction, Suicidal ideation, Suicide attempt, Hallucination, Psychotic disorder, Apathy, Lack of spontaneous speech, Sleep disorder, Affect lability, Libido decreased, Restlessness, Crying, Dysphemia, Euphoric mood, Paranoia, Perseveration, Panic attack, Tearfulness, Reading disorder, Initial insomnia, Flat affect, Thinking abnormal, Loss of libido, Listless, Middle insomnia, Distractibility, Early morning awakening, Panic reaction, Elevated mood, Blood bicarbonate decreased, Neutropaenia, Apraxia, Circadian rhythm sleep disorder, Hyperaesthesia, Hyposmia, Anosmia, Essential tremor, Akinesia, Unresponsive to stimuli, Blindness unilateral, Blindness transient, Glaucoma, Accommodation disorder, Altered visual depth perception, Scintillating scotoma, Eyelid edema, Night blindness, Amblyopia, Calculus ureteric, Renal tubular acidosis, Stevens-Johnson syndrome, Erythema multiforme, Skin odour abnormal, Periorbital oedema, Urticaria localized, Limb discomfort, Acidosis hyperchloraemic, Raynaud’s phenomenon, Face edema, Calcinosis, Mania, Anorgasmia, Panic disorder, Disturbance in sexual arousal, Feeling of despair, Orgasm abnormal, Hypomania, Orgasmic sensation decreased.

The FDA Black Box on Topamax

According to the FDA and their listed label update in 2014, Topomax includes a black-box warning that has the following known adverse effects:

  • Acute myopia and secondary angle closure glaucoma: Untreated elevated intraocular pressure can lead to permanent visual loss. The primary treatment to reverse symptoms is discontinuation of TOPAMAX as rapidly as possible (5.1)
  • Visual field defects: These have been reported independent of elevated intraocular pressure. Consider discontinuation of TOPAMAX (5.2)
  • Oligohidrosis and hyperthermia: Monitor decreased sweating and increased body temperature, especially in pediatric patients (5.3)
  • Metabolic acidosis: Baseline and periodic measurement of serum bicarbonate is recommended. Consider dose reduction or discontinuation of TOPAMAX if clinically appropriate (5.4)
  • Suicidal behavior and ideation: Antiepileptic drugs increase the risk of suicidal behavior or ideation (5.5)
  • Cognitive/neuropsychiatric: TOPAMAX may cause cognitive dysfunction. Patients should use caution when operating machinery including automobiles. Depression and mood problems may occur in epilepsy and migraine populations (5.6)
  • Fetal Toxicity: TOPAMAX use during pregnancy can cause cleft lip and/or palate (5.7)
  • Withdrawal of AEDs: Withdrawal of TOPAMAX should be done gradually (5.8)
  • Hyperammonemia and encephalopathy associated with or without concomitant valproic acid use: Patients with inborn errors of metabolism or reduced mitochondrial activity may have an increased risk of hyperammonemia. Measure ammonia if encephalopathic symptoms occur (5.10)
  • Kidney stones: Use with other carbonic anhydrase inhibitors, other drugs causing metabolic acidosis, or in patients on a ketogenic diet should be avoided (5.11)
  • Hypothermia has been reported with and without hyperammonemia during topiramate treatment with concomitant valproic acid use (5.12) (FDA Topamax Label)

According to the label, Topamax is only indicated for seizures as a secondary medication in support of a primary kind and for migraines and nothing else (not even for diet anymore). Yet, I see people being prescribed this drug for all types of off-label use that are unrelated to either seizures or migraines. The large migraine group I run on Facebook grown to over 4000 migraineurs in the past two years.

Because I have found that Topamax is the #1 prescribed medicine to migraineurs when they join the group in despair and hopelessness, I have decided to designate Topamax also as the #1 medicine discussed on the series titled drugs of shame. This is apt because it affects (and often damages) the neurotransmitters (hormones of the brain) and thereby puts the whole hormonal structure of the body in chaos.

The Problem: Brain Slowing

Topamax may cause brain function slowing. Why? Topamax is a voltage dependent calcium channel blocker (also called voltage-gated calcium channel blocker), which is a key channel for neuron communication via neurotransmitter release. Topamax is systemic, meaning it doesn’t just act on a particular type of neurons but all neurons. This means that neurons that are responsible to organize how the heart beats, how the lungs function, how you blink, and how you digest are all affected by Topamax in a negative way: the neurons cannot release neurotransmitters and so the communication between hormones of the brain and the hormones of the body are broken. Many of the side effects of Topamax are so strong that migraineurs who start Topamax stop within weeks (some on day 3) of initiating this medication. The drawing below shows how voltage dependent calcium channels work and what happens when they cannot work because they are blocked.

Voltage Dependent Calcium Channel Blockers

Voltage gated calcium channels plugged and unplugged
Voltage gated calcium channels plugged and unplugged.

Figure 1. How Voltage Dependent Calcium Channels Work

 

In figure 1 you see a simplified neuron on the left and the axons of another neuron on the right. In the synaptic cleft normally neurotransmitters work like a domino effect. One neuron receives a signal from a sensory organ that stimulates the release of neurotransmitters that are specific to the type of stimulus. The neurotransmitters then get to be picked up by the neuron connected to the releasing neuron and pass the signal along. When the signal volume, intensity, frequency reaches a particular threshold, the brain sends a command to the body: wipe nose, for example.

Blocking the voltage dependent calcium channels from firing means that no neurotransmitters can be released and thus no message is passed on to the necessary number of neurons to reach the threshold. Since Topamax is systemic, every function of the body is hampered to some degree.

Neurons have five types of voltage dependent calcium channels based on voltage requirements:

  1. L-type that directs skeletal muscles, cardiac related muscle cells, endocrine cells, adrenal, etc., associated with contraction, hormone release and synaptic integration (neurons working together)
  2. P/Q-type that activate neurons and neurotransmitter and hormone release
  3. N-type works at the nerve terminals similarly to P/Q for neurotransmitter and hormone release
  4. T-type think of it as the pacemaker of the brain for firing with a particular frequency
  5. R-type that works with cerebral cells and some neurons

For each of these, the current required is different so fine-tuning is necessary. The calcium channel must go through all stages of voltage levels to be able to perform all five types of actions, as the body requires all of them. Note that when the voltage gated calcium channels are blocked, none of these 5 types of actions can properly function. The body will utilize its reserves to maintain vital functions. People who take Topamax can still breathe and their hearts beat – but they have serious issues, for example, with body cooling, which is a pretty basic, built-in automatic motor function. People who take Topamax overheat and cannot cool themselves. Most interestingly Topamax prevents the very functions a migraine brain needs for relief the most because it blocks those channels that would instruct the brain to cool the body.

In addition, Topamax blocks both voltage dependent sodium-potassium channels. I have written extensively on voltage dependent sodium-potassium channels in previous articles so here I just present a short summary. Voltage dependent (or gated) sodium-potassium channels have the critical function of sodium and potassium exchange in the cell to ensure that proper voltage is created in the cell membrane. Proper voltage is required so that the channels can open and close their gates, nutrients can enter and waste products can leave. Neurons cannot manufacture neurotransmitters without the availability of various minerals, many of which must be able to enter the neuron via voltage gated sodium-potassium channels. When these channels are not able to generate the proper action potential, nothing moves in or out of the neuron. By blocking voltage dependent channels, the high voltage needed to release the neurotransmitters is dulled as well.

Topamax robs the brain from its most important vital roles: making neurotransmitters that transmit messages and regulate brain and important autonomic body functions such as, cooling the body when it is too hot,  maintaining and appropriate heart beat, or simply making a decision1.  I think, Topamax is one of the more dangerous drugs on the market. From what I can gather from the research and my work with migraineurs, Topamax does not appear to work for pain. It only slows brain function. I would not be surprised to see researchers soon showing a connection between Topamax use and dementia. Until then, proceed with caution.

We Need Your Help

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.

Yes, I would like to support Hormones Matter.

 

Sources

1          Sommer, B. R., Mitchell, E. L. & Wroolie, T. E. Topiramate: Effects on cognition in patients with epilepsy, migraine headache and obesity. Therapeutic Advances in Neurological Disorders 6, 211-227, doi:10.1177/1756285613481257 (2013).

2          Nelles, G. et al. Prevention of episodic migraines with topiramate: results from a non-interventional study in a general practice setting. The Journal of Headache and Pain 11, 33-44, doi:10.1007/s10194-009-0163-x (2010).

3          Navarrete, F., Pérez-Ortiz, J. M. & Manzanares, J. Pregabalin- and topiramate-mediated regulation of cognitive and motor impulsivity in DBA/2 mice. British Journal of Pharmacology 167, 183-195, doi:10.1111/j.1476-5381.2012.01981.x (2012).

4          Garvey, W. T. Phentermine and topiramate extended-release: a new treatment for obesity and its role in a complications-centric approach to obesity medical management. Expert Opinion on Drug Safety 12, 741-756, doi:10.1517/14740338.2013.806481 (2013).

5          Geddes, J. R. & Miklowitz, D. J. Treatment of bipolar disorder. Lancet 381, 10.1016/S0140-6736(1013)60857-60850, doi:10.1016/S0140-6736(13)60857-0 (2013).

6          Campayo, J. G. et al. Effectiveness of topiramate for tobacco dependence in patients with depression; a randomised, controlled trial. BMC Family Practice 9, 28-28, doi:10.1186/1471-2296-9-28 (2008).

7          Johnson, B. A. & Ait-Daoud, N. Topiramate in the New Generations of Drugs: Efficacy in the Treatment of Alcoholic Patients. Current pharmaceutical design 16, 2103-2112 (2010).

8          Pereira, A. G., Michael J.; Gross, Robert A.; Posner, Kelly; Dworkin, Robert H. Suicidality associated with anti-epileptic drugs: implications for the treatment of neuropathic pain and fibromyalgia. Pain 154, 345-349 (2013).

This article was first published on September 10, 2015.

All About Migraines: A Podcast with Angela Stanton

4639 views

Migraine has been the focus of my research for over the past decade. Over the years, I had been interviewed many times, some with more and others with less technological success. By this I mean, that sometimes the webcam malfunctions and other times the internet connection on the interviewer’s end fades in and out like one of these two podcasts here.

This time the interview went flawlessly. Everything worked. The interviewer was Dr. Shawn Baker, a surgeon and an athlete, and Zach Bitter, a teacher and ultramarathoner (yeah… 100 miles… oh my). The questions were interesting and covered a very broad range of topics related to migraine, such as diet, medical care, general health, and exercise.

The main concept of an interview like this is to help migraneurs and the general population learn about migraine. The benefit of having expert interviewers like Shawn and Zach is that different segments of the population may also learn. Many of the questions that Shawn asked were questions a doctor would ask to understand migraine better and the questions Zach asked were more appealing to the general population. He also brought up the question of vegetarians, vegans, and migraineurs, as well.

The interview covers how the migraine-brain develops. For example, cyclical vomiting syndrome and IBS are very typical migraine-brain developmental stages, with cyclical vomiting more frequent in pre-puberty boys and IBS in girls. Few doctors realize that these are migraine prodromes. We also discuss some of the medicines most often prescribed for migraine and some of the adverse events that are not recorded as well associated with their use.

Other topics covered include the role of carbohydrates, the genetic setup of the migraine brain, the role of channelopathy in the development of migraine-brain. While migraine as a form of channelopathy is not new, current research is not focusing much on this aspect. This is the very area where much of the benefit may be gained. I view migraine as a channelopathy and discuss this aspect at length. Channelopathy is not preventable or curable, but once its action on the brain is understood, its interference with normal life is preventable. The migraine prevention and treatment protocol that I developed in 2010-2012 and first published first in 2014, and later the second edition book in 2017, is based on preventing the activation of the channelopathic processes that can cause migraine.

Migraine is preventable without the use of any medicines.

Is Your Diet Giving You Migraines?

In case you prefer to watch it on YouTube, the link is here. Please share with migraineurs you know, so they can see that there is hope.

We Need Your Help

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.

Yes, I would like to support Hormones Matter.

Image by u_if8o5n0ioo from Pixabay.

Migraine, Diet, and Thiamine

10372 views

In US population studies, the prevalence of migraine is approximately 18% in women and 6% in men. About 90% of sufferers have moderate or severe pain and 75% have a reduced ability to function during the headache attacks. One third require bed rest during an attack. A study at the Mayo Clinic showed the incidence in women increased 56% during the 1980s and 34% during the same period in men. Although the term “migraine” is often used to describe any severe headache, a migraine headache is the result of specific physiologic changes that occur within the brain leading to the characteristic pain and associated symptoms. They are usually accompanied by sensitivity to sound, light and odors and there may be nausea or vomiting. Typically, the headache involves only one side of the head but in some cases it may be bilateral. The pain is often described as throbbing, pounding and maybe made worse with physical exertion. Silent migraine is a variant where the patient may experience aura, nausea, vomiting and other nervous symptoms without headache.

Migraine headache is estimated to affect up to 28% of adolescents, most of whom are female. It has been associated with reduced quality of life and academic disruption due to missed school days. In 2014 the US Food and Drug Administration approved an existing medication called topiramate for prophylaxis in adolescents between the ages of 12 and 17 years. There are several possible adverse effects from this drug, some potentially serious. Prophylactic drugs are unpromising and unpredictable. A mild degree of prevention could be obtained from the use of acupuncture.

Migraine Precipitants

Of 171 patients who fully completed a survey, 49.7% reported alcohol as a precipitating factor of headache other than migraine. Only 8.2% reported aspartame and 2.3% reported carbohydrate. Patients with migraine were significantly more likely to report alcohol as a trigger. They also reported aspartame as a precipitant three times more often than those having other types of headache. Non-nutritive sweeteners, including aspartame, saccharin, sucralose, neotame, acesulfame-K and stevia have all been questioned as to their safety. Pregnant and lactating women, children, diabetics, migraine and epilepsy patients, represent the susceptible population. Although sucralose is not considered to be a migraine trigger, a patient was reported with attacks of migraine consistently triggered by this sweetener.

Hypoxia, Pseudo-hypoxia, and Migraine

Migraine with aura is prevalent in high-altitude populations, suggesting that hypoxia has a part to play in etiology. Of 15 patients with migraine headaches, artificially induced hypoxia triggered migraine attacks in eight patients.

Thiamine deficiency produces abnormal gene expression in brain exactly like that induced by true hypoxia. Migraine is a risk factor for thiamine deficiency and Wernicke encephalopathy (WE), the classic thiamine deficiency disease that affects the brain. Two female patients have been reported with chronic migraine. They also had clinical signs and laboratory support for WE. Both patients received intravenous thiamine supplementation, leading to improvement of both WE and the associated headache. The authors suggested that nausea and vomiting, occurring with migraine, may lead to the thiamine deficiency. However, headache, nausea, vomiting and loss of appetite are symptoms that occur in the early stages of WE, thus simulating migrainous features and the association is by no means clear. The authors suggest that thiamine supplementation might be a promising therapy in a subset of patients with chronic migraine.

Also, the range of pathologies associated with magnesium deficiency is staggering, including migraine, multiple sclerosis, glaucoma and many other disorders. It is important to emphasize once more that magnesium and thiamine work together in the cellular machinery that produces energy and deficiency of either is critical. Chronic recurrent nausea in childhood is a poorly described symptom and in a study of 45 affected children, 62% had migraine headaches. They also suffered from dizziness, anxiety, fatigue and sleep problems. The exact incidence of dizziness and vertigo during adolescence is not known. For those few adolescents who seek outpatient evaluation, the majority are diagnosed with migraine headaches and many suffer from postural orthostatic tachycardia syndrome (POTS), a condition that has been reportedly due to thiamine deficiency in some cases.

Autonomic Asymmetry

Normally there is a balance between the autonomic tone of the right and left half of the body. However, under stress or with hypothalamic instability this balance may be disrupted and result in the marked autonomic asymmetry seen in migraine. Abnormal regulation of the large cranial arteries appears to play a significant role in the mechanisms of migraine pain, also reflecting abnormal autonomic function.

Migraine and Diet

Attack frequency of migraine in children was associated with higher intake of high fat or sugar. The processing of both is dependent on thiamine. With these strong associations in the medical literature, it is impossible not to contemplate that the sweet sensory input from the tongue to the brain is an important trigger for migraine. There has been a steady increase in sugar consumption in America over the past few decades, suggesting the possibility that it represents the published increased incidence of migraine in the 1980s as mentioned above. It also suggests the possible implication of artificial sweeteners as migraine triggers.

The association of migraine with alcohol ingestion might be an important observation, since alcohol has long been known to be a cause of thiamine deficiency in the part of the brain that controls the autonomic nervous system. It has also long been known that beriberi, the classical thiamine deficiency disease, causes autonomic dysfunction in its early stages. One of the most important observations that I observed in practice was that a mild degree of this deficiency makes the brain extremely sensitive to many different input stimuli. It results in a high degree of sympathetic nervous system activity, hence so-called panic attacks that are really distorted fight-or-flight reflexes. Patients complain of constant anxiety, heart palpitations, unusual sweating, nausea, vomiting, dizziness and brief fainting attacks known as syncope. This collection of symptoms, thought by many physicians to be psychological in nature, is also referred to as postural orthostatic (positional) tachycardia (rapid heart) syndrome (POTS).

In a person who is in a marginal state of malnutrition, any mild stress such as a vaccination, a mild infection or some form of trauma may initiate POTS. A reader might conclude that this diversity of symptoms, that include the incidence of migraine, cannot be caused by a deficiency of a single nutritional element. In order to understand, it is necessary to be aware that a deficiency of energy in the brain resulting from a common form of malnutrition creates a multiplicity of cellular dysfunction according to the distribution of the deficiency. If this is the truth, it makes a mockery of the present medical model in which each described disease is thought to have a specific underlying cause. Hence, money is collected to find the cause of Alzheimer’s disease and is probably a pipe dream. It is well known a published association with thiamine metabolism strongly suggests that we should be looking for prevention rather than spending millions in trying to find a curative drug.

Conclusion

The clues that alcohol, sugar and artificial sweeteners are major triggers for producing migraine headaches are so strong, their avoidance would appear to be mandatory. However, it is almost certainly true that many sufferers know this, but make no attempt at avoidance, marking the taste of sweeteners as addictive. I became aware that there were millions of people in America suffering from symptoms that are constantly being unrecognized in medical clinics. Even if they are recognized as nutritional in nature, the doctor and patient are likely to ignore the appropriate prevention by adopting the consumption of an appropriate diet. Since most of the population is ingesting pills of one sort or another, perhaps advising the use of vitamin supplements as part of the dietary discretion might at least partially serve in the reversal of these common symptoms.

We Need Your Help

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.

Yes, I would like to support Hormones Matter. 

Photo by Mehrpouya H on Unsplash.

Trauma, Pain, and Complex Illness: A Battle for Survival

2681 views

As a child, I endured every form of abuse. Both of my parents were mentally and emotionally abusive. I was beaten and experienced two severe head injuries that were never treated. One incident involved falling head first out of a moving vehicle. My brother grabbed my legs, but my head hit the pavement several times before he was able to pull me back in. The other incident was being thrown onto my parents’ waterbed and hitting the sharp corner of the bed frame.

I was sexually abused starting at the age of three.

I had my first period in third grade. My periods were painful with heavy flows that also came along with depression and anxiety. I was put on birth control at the age of 12 to try and control the menstrual symptoms.

At the age of 12, I was prescribed Prozac for the depression and within a couple of weeks of starting the medication, I had my first suicide attempt. Over the next 20 years, I was placed on almost every psychiatric drug there is – always resulting in a suicide attempt or a worsening of symptoms.

In high school, I started getting terrible headaches and went to a chiropractor for a few years. That chiropractor said that my neck curves the wrong way possibly caused by the head injuries as a child.

Also, in high school, my bladder started causing me a lot of distress. I pee a lot. Yes, women say they pee a lot. To this day I pee upwards of 30 times a day. The urologist in my hometown performed one of the most painful tests I have ever endured. They pumped me full of saline and waited until my bladder was full. I was in tears when it got to halfway full. Then they took x-rays as I tried to pee into a cup. The result was a diagnosis of overactive bladder. He said that my bladder was very strong, that when any urine hit my bladder it would spasm giving the feeling of needing to pee.

The menstrual issues continued to get worse. I would be debilitated during my periods. In my early 20s, we ran more tests on my bladder. They diagnosed me with interstitial cystitis and said that I had little to no capacity in my bladder. I cut back on caffeine and acidic drinks and /foods and upped my water intake.

Around this same time, I had a mental and emotional breakdown after a confrontation with my father. I was diagnosed with PTSD and went through EMDR therapy with great results.

In my mid-20s we did a laparoscopic surgery to determine why I was still having so many problems with menstruation and was told I had an excessive amount of blood vessels on my uterus. I was told that having children should help alleviate the symptoms. They sent me home before I was able to go to the bathroom. This led to one of the most painful nights I have ever had because I could not pee. I just sat on the toilet and cried. We went back to the hospital and they inserted a catheter and were bewildered. I was outputting way more than I was inputting. The doctors had no clue why this was happening or what could be done. Once I was able to urinate without the catheter, I was sent home and no further tests were run.

After a divorce and the death of my step-father, I married an abusive man. I had another breakdown and he had me institutionalized. While I was in the hospital they diagnosed me with Fibromyalgia. They put me on a cocktail of 40mg of Lyrica, Xanax, Valium, Trazadone, and Paxil. I was a zombie and within 3 weeks, I took all the pills in another suicide attempt. I was in the ICU for three days and came out a stronger person. I divorced my then husband and moved to the east coast.

I get regular sinus infections and bronchitis. I struggle with both falling and staying asleep. I have an amazing toolkit for managing anxiety and depression.

In 2010, during an MRI they discovered that I had 4 small nodules (under 1cm) on my thyroid. They diagnosed me with multinodular goiter.

I got pregnant in September of 2011 and it was brutal pregnancy. I ended up in the hospital with dehydration because I could not even keep water down. Thankfully Zofran helped me survive my pregnancy. I had a c-section in June of 2012 because I would not dilate. I was induced and after almost 48 hours of labor, I had only dilated ½ cm. I experienced severe postpartum depression but pushed through without medication.

In 2014, I got pregnant again and had another brutal pregnancy. I had gestational diabetes and was monitored closely. I had another c-section in August of 2014 followed by the worst infection I have ever endured. I went through five rounds of oral antibiotics and two weeks of IV antibiotics before the infection cleared up. Over the next few months, my husband and I became concerned with the increase in my bowel movements and swollen stomach. I saw a GI and he said it was most likely IBS and to try an elimination diet. I did and proceeded to lose 65 lbs. I cut out corn, wheat, rice, and only had minimal dairy. I also began working out regularly as well to improve my health. While this was going on I also started having increased pain with menstruation. I bled for three months non-stop. I saw several GYNs with no answers or help provided. I finally found an amazing GYN that discovered I had fibroids and cysts and we decided to try a partial hysterectomy. They removed my uterus and cervix in March of 2016. I had severe endometriosis and had scar tissue wrapped around my intestines. After surgery, I had another mental breakdown and he then regretted not taking my ovaries. He said he believed I have PMS disorder.

I also started to experience worsening headaches during this time but was able to manage with Tylenol, rest, etc.  I was having significant shoulder and neck pain and my primary care doc ordered an MRI in August 2016 and we then discovered I had 9 thyroid nodules, two of which were over 1 cm in size. They were biopsied and found to be benign.

I broke my ankle in October of 2016 (first bone I have ever broken and had surgery to install a plate and six screws into my right ankle). I have permanent nerve damage and tendinitis in that ankle now. During the recovery from my ankle surgery, I noticed a high pitched and very loud ringing in my right ear. I was having difficulty hearing and felt very off balance (more so than usual). In January 2017, I went to an ENT and we discovered I have lost roughly 50% of the hearing in my right ear. They said it was Idiopathic Sudden Sensorineural Hearing Loss and I got a hearing aid to help. They performed an MRI and I was told there were no significant findings.  I began having severe facial pain, headaches, and migraines. I began having severe issues sleeping. For almost a month, I was only averaging 3-4 hours of sleep a night and then went almost a full week with no sleep. I went to my primary care and she told me there was nothing she could do for insomnia and head pain but would treat the sinus infection I had with prednisone. This led to an acute psychotic break.

Over the next few weeks, I advocated for myself and made an appointment at a neurologist’s office and found a new primary care doctor. The nurse at the neurologist office I saw prescribed Imitrex. Which led to another adverse reaction and another hospitalization.

My new primary care doc ordered a CT scan of my sinuses and it appears I have a deviated septum with some sinus thickening. I went and saw an ENT and he advised me that I needed a competent neurologist but did not refer me to one.

A headache that began in January of 2017 continued with increased migraines. I began seeing a psychologist and learned mindfulness and cognitive behavioral therapy techniques. We did some neuro-biofeedback and EMDR.

The verdict is always the same – “this is complex” or “it’s all very biochemical”. We tried some blood pressure medication to help me sleep as well as some antipsychotics, but the side effects were worse than coping on my own.

We did a colonoscopy in July 2017, to investigate the stomach pain and distension I continue to have. While lying down I can often see the movement of my intestines. Looks like a baby moving around in my belly. The stomach distension comes and goes. Some days it’s normal and other days I look 6+ months pregnant. I also struggle with constipation and diarrhea. The GI specialist said that I had reflux but no other significant findings.

October of 2017, I saw the neurologist and he recommended Botox and neuro-biofeedback. I took a brain test on a computer and he did not perform any other tests. My GYN tried putting me back on birth control pills to see if the estrogen would help level me out. The results were BAD!!! I had an oophorectomy in December 2017. For a few weeks after the surgery, there was an improvement. I still had a never-ending headache, but migraines were less, and I felt strong enough to push through the head pain. Then it all came back with a vengeance. We lowered the estradiol from 1mg to .5mg and the neurologist gave me a sedative to try and break the migraine cycle. It helped but was brutal. The medication made me very suicidal and paranoid, but I pushed through!

After doing research on the Botox, I decided I did not want to proceed with that treatment.

I had a bit of a reprieve from the migraines after adjusting the estradiol and was just managing the headache. We did another thyroid ultrasound last month and there was significant growth on one of the nodules. They biopsied the largest nodule and it came back benign again.

Last week the migraine came back. We did two shots of 30mg of Toradol. It was better for a couple days and then came back again. We are going to shorten the time between changing the estradiol and see if that helps. I am researching and trying to find a headache clinic at the recommendation of my primary care. I practice self-care regularly and fight through a headache, joint pain, constant bladder pain and anxiety as best I can. I haven’t had a headache free day since January 2017. Please help.

Family History of Cancer:

Maternal Grandmother: Colon Cancer

Mother: Breast Cancer, Colon polyp that was removed w/ surgery

Father: Skin Cancer

Sister: Hodgkin’s Lymphoma Lung Cancer (age 14 – in remission)

Brother: Bile Duct Cancer (passed away in 2011)

We Need Your Help

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.

Yes, I would like to support Hormones Matter. 

 

1 2 3