Silent Death – Serotonin Syndrome

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serotonin syndrome
It started very slowly; at an almost non-existent rate. My mother, then about 84 years old, broke her ankle. She had been extremely active, playing table tennis regularly in a senior club; she was also a bridge champion almost all her life. She even joined online bridge groups and beat everyone on the internet too. When they asked how old she was, her partners and competitors just flipped that she was in her 80s and a bridge champion. She was sharp as a tack!

The ankle that broke needed surgery with plates and screws. She was restricted to bed for 6 months and then to wheelchair for life. While her ankle was healing she was in bed and could not play bridge, she lost her skills and partner. She was also dependent on others and became depressed. I would rather say she was angry with life for what happened to her rather than depressed but she insisted that she was depressed. She paid a visit to a neurologist begging for an antidepressant.

The neurologist prescribed half of the smallest possible dose of Mirtazapine, a simple serotonin that on its own is capable causing major damage but she received a very small dose. As she started taking the medicine, very tiny changes developed in her personality but they were so mild as to almost unnoticeable. In retrospect, we see what happened – hindsight is always 20/20.

First Signs of the Impending Doom

The first sign that she had too much serotonin in her brain was that rather than feeling calmer and happier she became more agitated; she was unhappy with people around her, criticized everything, nothing was good enough. Then bowel incontinence started and she had trouble holding her stool until she reached the bathroom; her bowel incontinence further limited where she dared going so she felt angrier. She became very easy to irritate and was pissed at the whole world.

What I have just described took four years to evolve so we did not see the connection of all these changes to the serotonin medicine. Then one day as I was refilling her medicine, the drugstore ran out of Mirtazapine and they placed her on an SSRI called Zoloft instead—the doctor changed her prescription.

An SSRI (Selective Serotonin Reuptake Inhibitor) is a very different medicine from the old small dose serotonin my mother received. While Mirtazapine merely provided a small extra dose of serotonin to the brain, Zoloft forced her brain to make serotonin 24/7.

How SSRIs Work in the Brain

To understand what SSRIs do, envision a sink with an overflow hole on the top, in case you left the water running. This will allow the extra water to flow back into the drain and if you have an automated sink that is connected to this backflow, the sink would know it is full and would turn the faucet off. This little overflow hole in the brain cell is called reuptake. It does exactly what the overflow does. If it senses that enough serotonin was made, it shuts down serotonin manufacturing of the cell until it senses that more is needed. However, SSRIs inhibit the reuptake receptor, i.e. plug it up. Just as your sink will flood your house with water if the overflow is plugged up, so does the brain fill up with serotonin as long as the reuptake is inhibited. This makes the brain cell manufacture serotonin forever, regardless how much is needed and how much it already has made. Reuptake inhibitors serotonin syndrome

Only a small percentage of serotonin is made in the brain, less than 10%, and 90% is in other parts of the body. The intestinal tract uses most of the serotonin to pass the food through the intestines with proper speed—this explains why having too much serotonin in one’s body causes bowel incontinence. Serotonin also functions as part of memory and cognition, and it is also a vasoconstrictor. Serotonin is a dangerous substance that predisposes the patient to diabetes 2. Thus it is no surprise, in retrospect, that we saw changes slowly from Mirtazapine but very fast changes as my mother was moved to take an SSRI. Suddenly changes took place at a drastic pace:

  • Day one of the change to SSRI was a confusion day. She was clearly agitated, confused, and bowel incontinence became a permanent feature
  • Day two she was angry staring up at the ceiling all day in bed, refused to eat or do anything. The commode had to be moved into the bedroom though she barely made it that far without accident.
  • Day 3 she fought the whole world, nothing was right. She set in a corner totally agitated
  • Day 4 she called me on her cell phone at 5 am (we lived in the same house, with me right above her) asking when breakfast was served in this house. I rushed down and found her sitting at the edge of her bed in total confusion. I put her back in bed and told her breakfast will be served at 9 am so she should go back to sleep.
  • Day 5 is when the moment of recognition hit me. She called me again on the cell phone at 5 am. I ran downstairs. She was seated at the edge of her bed, totally naked with her bathrobe barely on. Her entire closet was on the floor; she pulled everything off every single hanger and shelf. I ran up to get the blood pressure meter. Her blood pressure was so high the cuff gave me error twice before I was finally able to read her blood pressure. The systolic was over 180 (120 is ideal), I don’t remember the diastolic but it was over 100. I called the ambulance and off she went to the hospital.

In the hospital, I tried to tell every doctor what her history was with the SSRI. I am a medically trained professional in neuroscience and though not a medical doctor but a researcher, I can identify a serotonin syndrome when I see one as long as I know the history that led up to it.

For my biggest surprise, and why I am writing this article, is that physicians rarely recognize serotonin syndrome. No one believed me when I told them that I suspected that my mother was suffering from serotonin syndrome. No one listened to me when I asked that they test for serotonin syndrome. I received comments like this from a psychiatrist: “Your mother cannot have serotonin syndrome, it is too rare.” Serotonin syndrome is not rare but the doctors who identify it are, and he was one of the many who did not recognize serotonin syndrome when he saw it. Another doctor told me that “she may have serotonin syndrome but we cannot test for that and cannot treat for it.” In fact, testing and treatment are both available for serotonin syndrome. The problem is with the doctors who do not ask any questions and only make assumptions based on the patient’s age (she was 88 at this time) using profiling assume that anyone over the age of 80 must have dementia. They diagnosed my mother with Alzheimer’s type dementia (something we were able to see via autopsy to have been the wrong diagnosis). She was misdiagnosed and mistreated with the wrong medicines until she died. There was nothing I could do. I suspect that for those of you who are not scientists like I am, the task is even more daunting. So prepare for the fight of a lifetime.

Unfortunately, the symptoms of many illnesses or conditions resemble that of the symptoms of serotonin syndrome. The surest way of knowing if you or your loved one has serotonin syndrome, is if serotonin medicines have been taken for a long time and symptoms slowly worsened over time or if new serotonin medicine was just introduced. If three of the following symptoms appear, take the patient to the nearest hospital via ambulance immediately, stand guard and get ready for a fight to save a life!

  • Agitation or restlessness
  • Confusion
  • Rapid heart rate and high blood pressure
  • Dilated pupils
  • Loss of muscle coordination or twitching muscles
  • Muscle rigidity
  • Heavy sweating
  • Diarrhea
  • Headache
  • Shivering
  • Goose bumps
  • High fever
  • Seizures
  • Irregular heartbeat
  • Unconsciousness

The importance of this long introduction is that today more people take SSRIs than ever before hence the increased odds of ending up with serotonin syndrome, and that serotonin syndrome is misdiagnosed. More people take multiple types of SSRIs or mix SSRIs and other medicines with serotonin, such as triptans that are so often prescribed for migraineurs. Serotonin syndrome is fatal if it is not attended to very quickly. Unfortunately, it was indeed fatal for my mother.  I run a large migraine group and one of the first things each member has to do is answer a few questions via private messaging. One of the questions is about the list of medications they take. I go through every single medicine and provide a full analysis and if I find they are at risk of serotonin syndrome they are given all information to talk to their doctors. A very large percent of the new migraineurs joining take two or more serotonin medicines at once. Checking for possible serotonin syndrome is essential.

Additional information to help you to select a good hospital for your care: Medicare has created a program aiming to reduce mismanagement of patient care. They provide a score to each hospital based on the number of mismanaged cases, which includes hospital induced delirium as well as other cases. Hospital induced delirium is the new name for serotonin syndrome in many hospitals and you may find it listed as the official cause of death. Medicare assigns a score to each type of condition and sums up the incidences of misdiagnosis and mismanagement per hospital. Those hospitals that rank over the 75 percentile receive a reduction of payment from Medicare until they improve the care.

I wish that doctors were just as well trained in recognizing serotonin syndrome as they are trained to write prescriptions for serotonin. Since doctors are so unaware on how to recognize serotonin syndrome and because the consequence of that oversight is fatal, it is best to consider your options carefully before accepting serotonin prescriptions. Serotonin medicines are prescribed for everything, but when we look at what they actually help is very minimal.

To get serotonin without medicines, eat those foods that put you to sleep after lunch: turkey has lots of serotonin. Head out to the sun. Sun releases serotonin. If you live in a cold region where sun is rare in the winter, invest in a home sun-lamp. The light it releases initiates serotonin release in your body. Enjoy a pleasant walk; go shopping; watch children play in a park; go to social gatherings. Anywhere full of happy friends or people in general will supply you with feel-good hormones that will help ease any depression. There are many treatments on their way for depression and one of them is the same treatment as for migraine and anxiety. Join my migraine group to learn more.

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37 Comments

  1. Hey guys.

    I am 5 months postpardum and shortly after I gave birth I started low dose Zoloft which has been raised each month to a HIGH dose to no avail. It helped a lot actually but now things are starting to feel worse since starting other meds. I end up having three discs to rupture from a fall/DDD/OA and was in severe pain. I was given Gabapentin, Cymbalta and Flexeril on Top.. Then they just added Meloxicam and a,10,day course of steroids. I also took pain meds but only for 2,weeks. My pain is worse, I have migraines, sweating, anxiety and hot flashes, chills and mild disorientation which is probably contributed to all the crap they have me on. I also have bowel incontinence and bowel changes on and off.

    I suppose if it was severe I would be so confused and in the hospital. But I may have some serotonin syndrome. I am also nauseated. I think the Cymbalta I started a few days ago is the contributing factor. I’m worried. Why would doctors do this?!?

    1. Hi Brandy,

      Zoloft (sertraline–see the comment I just posted on that for Mina) is an SSRI (selective serotonin reuptake inhibitor) that alone can cause serotonin syndrome but Cymbalta and Zoloft are both doing exactly the same thing!! You have been overdosed and are indeed having a serotonin syndrome. I just ran a drug interaction check at drugs.com’s website for you because I suspected that you have many interactions. I found that you have MAJOR and MODERATE interaction between several of your medicines and you also have what is called “therapeutic duplication” which means you are taking more than one medicine for the exact same purpose and thus you are overdosed.

      Here are your interactions:

      MAJOR:
      sertraline cyclobenzaprine
      Applies to: Zoloft (sertraline), Flexeril (cyclobenzaprine)

      Using sertraline together with cyclobenzaprine can increase the risk of a rare but serious condition called the serotonin syndrome, which may include symptoms such as confusion, hallucination, seizure, extreme changes in blood pressure, increased heart rate, fever, excessive sweating, shivering or shaking, blurred vision, muscle spasm or stiffness, tremor, incoordination, stomach cramp, nausea, vomiting, and diarrhea. Severe cases may result in coma and even death. You should seek immediate medical attention if you experience these symptoms while taking the medications. Talk to your doctor if you have any questions or concerns. Your doctor may already be aware of the risks, but has determined that this is the best course of treatment for you and has taken appropriate precautions and is monitoring you closely for any potential complications. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

      MAJOR
      sertraline duloxetine
      Applies to: Zoloft (sertraline), Cymbalta (duloxetine)

      Using sertraline together with Duloxetine can increase the risk of a rare but serious condition called the serotonin syndrome, which may include symptoms such as confusion, hallucination, seizure, extreme changes in blood pressure, increased heart rate, fever, excessive sweating, shivering or shaking, blurred vision, muscle spasm or stiffness, tremor, incoordination, stomach cramp, nausea, vomiting, and diarrhea. Severe cases may result in coma and even death. You should seek immediate medical attention if you experience these symptoms while taking the medications. Talk to your doctor if you have any questions or concerns. Your doctor may already be aware of the risks, but has determined that this is the best course of treatment for you and has taken appropriate precautions and is monitoring you closely for any potential complications. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

      MAJOR
      cyclobenzaprine duloxetine
      Applies to: Flexeril (cyclobenzaprine), Cymbalta (duloxetine)

      Using cyclobenzaprine together with Duloxetine can increase the risk of a rare but serious condition called the serotonin syndrome, which may include symptoms such as confusion, hallucination, seizure, extreme changes in blood pressure, increased heart rate, fever, excessive sweating, shivering or shaking, blurred vision, muscle spasm or stiffness, tremor, incoordination, stomach cramp, nausea, vomiting, and diarrhea. Severe cases may result in coma and even death. You should seek immediate medical attention if you experience these symptoms while taking the medications. Talk to your doctor if you have any questions or concerns. Your doctor may already be aware of the risks, but has determined that this is the best course of treatment for you and has taken appropriate precautions and is monitoring you closely for any potential complications. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

      MODERATE
      sertraline gabapentin
      Applies to: Zoloft (sertraline), gabapentin

      Using sertraline together with gabapentin may increase side effects such as dizziness, drowsiness, confusion, and difficulty concentrating. Some people, especially the elderly, may also experience impairment in thinking, judgment, and motor coordination. You should avoid or limit the use of alcohol while being treated with these medications. Also avoid activities requiring mental alertness such as driving or operating hazardous machinery until you know how the medications affect you. Talk to your doctor if you have any questions or concerns. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

      MODERATE
      sertraline meloxicam
      Applies to: Zoloft (sertraline), meloxicam

      Using sertraline together with meloxicam may increase the risk of bleeding. The interaction may be more likely if you are elderly or have kidney or liver disease. Talk to your doctor if you have any questions or concerns. Your doctor may already be aware of the risks, but has determined that this is the best course of treatment for you and has taken appropriate precautions and is monitoring you closely for any potential complications. You should seek immediate medical attention if you experience any unusual bleeding or bruising, or have other signs and symptoms of bleeding such as dizziness; lightheadedness; red or black, tarry stools; coughing up or vomiting fresh or dried blood that looks like coffee grounds; severe headache; and weakness. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

      MODERATE
      cyclobenzaprine gabapentin
      Applies to: Flexeril (cyclobenzaprine), gabapentin

      Using cyclobenzaprine together with gabapentin may increase side effects such as dizziness, drowsiness, confusion, and difficulty concentrating. Some people, especially the elderly, may also experience impairment in thinking, judgment, and motor coordination. You should avoid or limit the use of alcohol while being treated with these medications. Also avoid activities requiring mental alertness such as driving or operating hazardous machinery until you know how the medications affect you. Talk to your doctor if you have any questions or concerns. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

      MODERATE
      gabapentin duloxetine
      Applies to: gabapentin, Cymbalta (duloxetine)

      Using gabapentin together with Duloxetine may increase side effects such as dizziness, drowsiness, confusion, and difficulty concentrating. Some people, especially the elderly, may also experience impairment in thinking, judgment, and motor coordination. You should avoid or limit the use of alcohol while being treated with these medications. Also avoid activities requiring mental alertness such as driving or operating hazardous machinery until you know how the medications affect you. Talk to your doctor if you have any questions or concerns. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

      MODERATE
      meloxicam duloxetine
      Applies to: meloxicam, Cymbalta (duloxetine)

      Using Duloxetine together with meloxicam may increase the risk of bleeding. The interaction may be more likely if you are elderly or have kidney or liver disease. Talk to your doctor if you have any questions or concerns. Your doctor may already be aware of the risks, but has determined that this is the best course of treatment for you and has taken appropriate precautions and is monitoring you closely for any potential complications. You should seek immediate medical attention if you experience any unusual bleeding or bruising, or have other signs and symptoms of bleeding such as dizziness; lightheadedness; red or black, tarry stools; coughing up or vomiting fresh or dried blood that looks like coffee grounds; severe headache; and weakness. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

      THERAPEUTIC DUPLICATIONS

      Therapeutic duplication is the use of more than one medicine from the same drug category or therapeutic class to treat the same condition. This can be intentional in cases where drugs with similar actions are used together for demonstrated therapeutic benefit. It can also be unintentional in cases where a patient has been treated by more than one doctor, or had prescriptions filled at more than one pharmacy, and can have potentially adverse consequences.
      Duplication
      Antidepressants

      The recommended maximum number of medicines in the ‘antidepressants’ category to be taken concurrently is usually one. Your list includes two medicines belonging to the ‘antidepressants’ category:

      duloxetine (active ingredient in Cymbalta (duloxetine))
      sertraline (active ingredient in Zoloft (sertraline))

      In terms of your symptoms that you are listing you are definitely starting serotonin syndrome. Please visit your nearest ER (don’t make a doctor’s appointment but head to ER), take your list of medicines, take this note I wrote here–specifically because I want them to see the interactions and the therapeutic duplications) and you tell them what you have!! Don’t let them stop you from what you have to say. If you feel you need a more powerful voice, take a friend who has no fear of what we call “white coat effect” to be sure you are not discounted.

      Unfortunately many doctors have no idea what they are doing (I call them clueless doctors) because they were never told about the interactions and also never were taught to recognize a serotonin syndrome.

      Please head to the ER a.s.a.p.

      Best wishes,
      Angela

  2. Can someone tell me how long serotonin syndrome lasts once you stop taking the medication that caused it?
    My niece is 24 years old, has been on sertraline for a short while 6 months maybe. She was also taking the highest amount of tramodol.

    She was admitted to hospital following stomach pains, had raised white cells but they didn’t no what was wrong with her.
    Few days later she was released, and she continued her medication at home. Sertraline and tramodol.
    Then suddenly like a switch had gone off, she became confused, manic episodes, rambling, talking nonsense and over evaluating everything. She didn’t make sense. Had high fever, chills, shakes loads of symptoms.
    she was put In a mental health facility query seretonin syndrome.
    They gave IV fluids and 1 paracetamol a day.
    A week later she was released to be monitored at home each week.
    It’s been 2 weeks now and she has slightly improved but is still confused and rambling. She’s unable to care for her young kids and needs constantly watching.
    They have prescribed her a sleeping tablet to take once at night. But she hasn’t slept in two days.
    She sits down and constantly thinks, but stares into space or she follows an adult around the flat rambling on about things That don’t make sense.
    I’m so worried for her.
    Will the symptoms go away? Her symptoms are that of a mentally ill patient.

    1. Dear Mina,

      I am very sorry to hear that your niece got serotonin syndrome. It seems like she has a very severe reaction. Severe serotonin syndrome damage may take a very long time to recover since in addition to the extra serototonin that must clear, your niece is also going through severe withdrawal at the same time. Tramadol is a narcotic and stopping that causes major withdrawals. Sertraline is the one that caused her serotonin syndrome (like in the article my mother’s death).

      The hospital did not do its treatment properly. For serotonin syndrome she should have received: muscle relaxants, benzodiazepines like diazepam (Valium), serotonin-production blocking agents such as cyproheptadine, oxygen, drugs that control heart rate and blood pressure (it can be too high or too low). These all in addition to intravenous (IV) fluids.

      It is also possible that her brain is still not free from all the extra serotonin since she didn’t receive serotonin blocking agents plus after stopping SSRI, like Sertraline, the brain often doesn’t know how to make or stop making serotonin–there is recovery time needed for the “inhibitor” to be removed from the receptor and this time is very much individual. Unfortunately, sometimes the damage is permanent.

      Please take your niece back to the ER and explain to them what she is going through so they can run some tests and see if she is suffering withdrawal, still has too much serotonin, or suffered permanent damage.

      I wish her well and a big hug to you for reaching out to try to help her! <3

      Angela

  3. My wife was recently diagnosed with stage IV cancer; she had breast cancer 10 years ago, and it came back with a vengeance. She has been on citalopram (SSRI) for years for depression. Her cancer is now in her bones, liver, and lungs, so she was in a lot of pain. She can’t tolerate opiods, so she was given Tramadol (a synthetic opiod). After her chemo, she was given Zofran. All three of those have “major” interactions for Seratonin Syndrome – Citalopram/Tramadol, Citalopram/Zofran, and Tramadol/Zofran. She kept getting more and more sick following the chemo, and she finally got so bad we went in and they gave her Zofran through her port. As she was getting it I could actually see her getting more and more distressed as she was getting the infusion. I looked up the interactions on my phone and all three combinations increase the risk of Seratonin Syndrome. She immediately stopped the Zofran and started feeling better within a couple of days. It might just be that she was moving farther from last chemo, but I wonder whether it was the interaction.

    There are two things I don’t understand.
    1. Why in the world don’t these highly trained “professionals” check for interactions before prescribing these things? If I can look it up so easily on-line, it should be child’s play to write a computer program that checks for interactions as physicians prescribe these things. The medical center is part of a massive operation owned by the University of Pennsylvania, so this SHOULDN’T BE THAT HARD. You prescribe something, and if it’s a potential problem with another med the patient is already taking you get a big red flag. All of the prescription data is entered into their information system, but I really think these electronic systems are an end in themselves rather than being used as the tool they could be. They spend all their time entering data but no time actually LOOKING at it.
    2. Can SS cause hand blisters due to toxicity? My wife developed severe hand blisters, and as a result of this and her other discomforts the MD is switching chemo drugs. The current chemo drug was doing great at lowering her marker numbers, and if all of the problems are caused by drug interactions rather than the chemo it would be foolish to switch.

    1. Dear Tom,

      I removed your other post so it only appears now once in the right place. I am very sorry to hear about the cancer returning for your wife, metastasized. I am certain that you completely got it right and she was suffering more from the serotonin syndrome building up than the chemo therapy itself, which is brutal on its own.

      You have a perfect question about why doctors are so good at prescribing all these medications without looking at interactions. At one level I agree that they are not reading only writing and so they are not aware of what is what but another part of me tells me something else: ignorance. It is, indeed, very easy to find out about drug interactions; here is a website I always use for convenience since it does a perfect job, fast, efficient, and is always correct–it is also free.

      I am confident that every single doctor has a drug interaction checker either on their phone or on the computer when they prescribe a medicine only they don’t think it is appropriate to look. I feel (my experience with some of my doctors) is that they are time pressured and feel that they may look less knowledgeable if they need to look things up in front of a patient. Yet those doctors who actually do take the time to look, develop more trust. After all, everyone is human and doctors can forget or make mistakes; looking it up is actually reinforcing trust. I don’t think they realize this.

      I also found, on my own experience, that the majority of doctors have very narrow field of specialty and don’t ever test the waters of integrative medicine or study other fields of medicine to broaden their understanding. As a result, they pretend they know enough even if they don’t. This is very sad because lives depend upon their decisions.

      And finally, medicine applies a cookie-cutter approach and only symptom treats today. This can be very dangerous, as it was the case for your wife who received such interacting medicines. It remains your job and the job of the rest of us to keep an eye out for our loved ones and learn enough to stop the doctors from making mistakes. It is hard work because most people are not trained medically or scientifically. It is lucky you had the knowledge to look up the interactions and the guts to pass the information on to the doctor. Most people feel intimidated until it is too late.

      I congratulate you for your strength and wisdom and wish your wife all the best in a successful chemotherapy treatment and remission.

      Hugs,
      Angela

  4. Angela, My 82 year old father went to the hospital for stomach pain. He led a very active life, lived on his own and was very happy. He had COPD from working with asbestos and followed all his doctors instructions and was managing it well. While in the emergency room he was his normal self, talking and joking around with the doctors. They ran various test and determined his white cell was high and his lactic acid was elevated, as well as enlarged liver. They decided to admit him for further testing. Shortly after he was given IV fentanyl and Zofran, he then became confused and he broke out in a cold clammy sweat and was unable to respond. He remained this way for quite awhile, they then gave him another dose of fentanyl and Zofran then went into respiratory distress and was put on a breathing tube. He continued to receive IV fentanyl. He was also taking sertraline, which continued while hospitalized. His lactic acid and CO2 levels were off the charts and his protein levels increased everyday. His organs began to fail one by one and he became so septic that blisters formed on his skin. I did not know about serotonin syndrome until I looked into drug interactions, my father was taking sertraline on a regular basis, then given fentanyl and Zofran in the hospital, he went downhill in a matter of hours. The hospital came to me and asked if they could do a autopsy because they did not understand what happened to him. The results of the autopsy were high grade endocrine cancer of the liver, with bone marrow involvement. He was never diagnosed with cancer nor showed any symptoms. Liver cancer increases serotonin levels, then he was given fentanyl and Zofran while taking sertraline. If I know this, how come a team of doctors and nurses did not know what could happen when these drugs are given together. I believed his death was from serotonin syndrome.

    1. Oh my Paula, I am so sorry about your father! Indeed! How come they did not know!? It is further confusing to me that they did not see his liver cancer at such advanced stage since that comes with symptoms that are actually visible–such as the yellowing on the skin. Also, bone cancer is extremely painful from the very beginning so I find that too highly unlikely to have contributed to his passing in the hospital. I am not sure I believe in the autopsy findings of the hospital at all.

      When my mother died–in hospital like your father–I asked if they would do an autopsy (they did not want to since “she died from a stroke” but I wanted to find out if she had serotonin syndrome as I diagnosed or Alzheimer’s as they diagnosed, which I knew she did not have). The hospital told me that they will only do autopsy such that it confirms the final cause of death–meaning not the original cause but the “end” cause, which in the case of my mom was a stroke and in the case of your father was multiple organ failure.

      In checking on the three medications your father received, I find that fentanyl has a protein binding capacity at a high level of over 80% with metabolic pathway that is hepatic; sertraline is also hepatic with an even higher protein binding ability than fentanyl (95%); and Zofran is also hepatic with the least protein binding but still over 70%. All 3 are liver damaging–this explains the liver damage they have found and I very seriously doubt that it was cancer. All three drugs are excreted renal–this explains the high CO2 level since his electrolyte was completely out of homeostasis and he was experiencing dehydration.

      All three drugs modify serotonin in some way and Fentanyl and Sertraline alone each can cause serotonin syndrome. Combine the three and for sure he had serotonin syndrome.

      Since they said that he had endocrine liver cancer, that is a metastatic state of the liver from cancer elsewhere, so the primary cancer would have had to have been the bone cancer or perhaps a third cancer they have not diagnosed. Bone cancer is extremely painful from the very early stages on so it is very hard for me to accept that he was not in pain with a bone cancer! Liver cancer, in addition to the yellowing of the skin and the whites of the eyes, also comes with extreme fatigue. Based on your description of your father joking and feeling well in the ER, I am having a very hard time seeing him with 2 types of cancers, one that changes appearance and stamina and the other that causes extreme pain. It does not add up.

      It would have been very painful for you to get an independent autopsy I am sure. However, the findings the hospital presented you with do not line up well with me at all. Furthermore, knowing that it is not in the interest of the hospital to tell you that “oops we goofed up,” your chances of finding a true cause from the very hospital that caused his death is highly unlikely.

      I am very sorry about the death of your father and I hope I did not ignite further pain–that was not my intention only I feel that knowing the truth may help closure. It helped me when I received the autopsy I ordered independently from the hospital and found out that my mom had no Alzheimer’s at all. It does not change the outcome but it changed me.

      I wish you all the love and comfort I can over the internet! <3
      Angela

  5. In 2013, my Psychiatrist changed to a new antidepressant Fetzima. I was taking Trazadone in combination with clonozapam for RLS. My pain management doctor wanted to take me off of 5-300 hydrocodone and put me on Tramadol, and I would have taken it if I didn’t have an appointment with my Psychiatrist the next day. He said it would give me serotonin syndrome and provided me with a printout that showed this to be true. But right below Tramadol was Trazadone and I told him those symptons listed there were what I had been having for several months. Excessive sweating, extreme agitation, inability to handle the slightest stress (felt like crying), loss of balance and coordination, and high blood pressure. I told my pain doctor I could not take the Tramadol. When the medicine was stopped (Trazadone) stayed on Fetzima the symptoms subsided. However, I never felt quite the same, very easily upset and wanting to cry at the slightest thing. Then in 2016 of this year my pain management doctor prescribed me Pentazocine/Naloxone and I had switched to Viibryd for depression. The unfortunate think about Serotonin Syndrome is that when you are the person suffering from it you don’t know its happening until a few months because the symptoms creep up on you and I thought I was just not getting better from the first time I had it. Several months went by and I started having increased pain, severe tremors in my fingers and hands, insomnia, but the severe sweating didn’t start until the last week. When I recognized that I looked up the new pain medication and sure enough it was marked as a major side affect for serotonin syndrome. I stopped taking it and within 3 days it was like a dark cloud had been lifted off of my head. Initially I felt a sort of euphoria, but now I am still easily angered and upset. My pain doctor said he didn’t believe it was serotonin syndrome at all, but opioid withdrawal. I just put my head down on the doctors table because I knew opioid withdrawals happen within 24 to 72 hours, not over a seven month period. He said I was on the verge of a nervous breakdown and he was certainly correct about that but not the reasoning behind it. He now wants me to take Naltrexone 1MG low dose treatment for pain. In addition, he had previously prescribed me Nucynta 50mg, Buprenoophine 2MG, for pain, both of which are marked as major serotonin syndrome when taken with Viibryd. I have just returned from a three months leave of absence from a job I used to handle quite easily, only to struggle with every little issue that pops up. I am afraid I am going to just quit going to work and lose my job. I am going to stop taking everything, but I am afraid I have been permanently damaged and that I will never feel good again. Is this possible?

    1. Dear William,

      Thank you for your note and write up. It is truly a miracle that you are with us so time to celebrate for that a little and come out of depression since you could have died an agonizing death and here you are, looking for solutions! I applaud you for that! <3

      I have a question or two: you mention pain doctor but not what kind of pain you have. Some forms of pains (like migraine) can be treated without medicines very successfully so if that is what you have, you may want to give that a try and join my group. If by pain you refer to anxiety, nervous breakdown and depression, I recommend you try to change your diet to be “depression and anxiety friendly.” It is now well understood how sugar works the brain into anxiety: it first activated the dopamine system to make you feel good, releasing dopamine and then once you run out of sugar “on the brain” your brain releases adrenaline and THAT causes anxiety.

      So by stopping sugar, you can intervene in the depression/anxiety creation process and prevent it–or at least get on the right road to be able to manage it or deal with it. Whatever permanent damage you may have had from the medicines may or may not be permanent–it is dependent on your age and damage type and damage strength. There are ways to “change” the brain and repair it. First you need to stop all sugar and refined carbohydrates, which irritate and cause damage (as noted above) and then get on brain repair:

      From the much literature and my personal experience (as a migraineur, I also fight anxiety though not depression all my life, since age 19 actually), I found that the simple task of reducing carbs and increasing animal fats in my diet completely changed my brain. I no longer experience any of the typical anxiety, etc., and also am migraine free (I don;t take medicines either). It seems that so far everyone making this diet change benefited greatly and studies are now under way to use a rather strict therapeutic version of this nutritional approach (ketogenic) to literally cure many CNS disorders, such as depression, Parkinson’s, MS, migraine, seizures (for that it is already used as treatment!), cancer (also used as treatment), and type 2 diabetes (also used as treatment), and some more like autism where research just started and great strides have already been made.

      It is best to work this nutritional approach under the supervision of a specialist because in my opinion many people are doing it wrong–but experts are hard to find. You are welcome to join my keto mild for migraine group, which has an expert team connected to it whom you can hire (I am not affiliated and don’t even know them, only a member found them and used their services), which is a learning group and sharing of experience group on how to “fall into” the ketogenic nutritional approach without getting hurt.

      I hope you find these helpful.

      Best wishes,
      Angela

  6. My 20 year-old son DIED from serotonin syndrome in a rural hospital. They didn’t know what he had; didn’t know how to treat it.

    20 years old — he should have had his whole life ahead of him.

  7. I am trying to find a clinical pharmacologist or neuroscientist to review my late partner’s autopsy report, medication history, and adverse reaction
    history to see if the there is a cause and effect situation.

    I need an expert for the Coroner to be able to get reports from.

    My partner was diagnosed with dementia after being prescribed some very
    strong anti depressants in 2010. The symptoms of the dementia diagnosis
    were the same signs of adverse reactions to the drugs. The doctors at
    the time knew that he was super sensitive to medications and testified
    to his sensitivity in family court in 2012. He was diagnosed with
    Prostate cancer in 2009. He chose to treat this homeopathically, very
    sucessfully while he was allowed his homeopathic treatment.

    MRI, SPECT and CT scans in 2008, 2009 and 2011 all showed no
    deterioration in his brain, no vascular disorders anywhere. A CT scan in
    2011 showed prostate cancer and bladder diverticula, among other things.

    Bryan was prescribed the following medications between 2010 and his
    death in June 2014:

    Mirtzapine, Venlafaxine, Temazepam, Ibuprofen, Clomipramine, Lorazepam,
    Clonazepam, Midazolam, Fludrocortisone, Madopar, Risperidone,
    Olanzapine, Donepezil, Scopolamine, Epilim and Paracetamol and Oxybutynin.

    Combinations of medications: Mirtazapine and Venlafaxine (2010 – 2011);
    Lorazepam, Clonazepam and Ibuprofen (August 2011); Madopar, Risperidone,
    Clonazepam, Fludrocortisone, Oxybutynin (Oct 2011 – May 2012) ;
    Donepezil and Epilim (Dec 2011 – Jan 2013);

    Bryan experienced several episodes of delirium, and at one point I was told he had drug induced parkinsons. Having done a spreadsheet of his medications and adverse reactions, I have often wondered if he had developed Serotonin Syndrome. I am absolutely sure that the dementias found at autopsy are drug induced.

    Bryan experienced significant side effects to all these drugs. Some of
    the side effects include hyper sedation, peripheral oedema, aggression,
    on off effect, falls, urinary tract and bladder infections.

    I need an expert to review my material and be prepared, if they agree
    that there is cause and effect between the drugs and conditions found in
    Bryan’s autopsy report.

    I have contacted a number of specialists in New Zealand and Australia
    and no -one will help me. This investigation fits beautifully into the
    study that Dr Hamish Jamieson is doing and I contacted him, but never
    got a reply.

    1. Dear Sally,

      I am very sorry about what happened to your partner. I hope that the report contains all information about the necessary findings to tell what happened. To tell if your partner had no Alzheimer’s type dementia is not extremely hard since that disease changes the brain’s structure to the point that is visible in the scanner–not sure if they had taken and MRI of his brain while alive, close to his death. If yes, the autopsy report and the MRI combined can help determine if he had Parkinson’s type dementia but not necessarily if it is drug induced if they find it. They can merely see if he indeed had that.

      Regular dementia (not Alzheimer’s) does not necessarily show changes in the brain. Some studies show that plaque buildup (the very thing considered to be the hallmark of dementia) is either present or not; there is no association (causal or otherwise) with dementia and plaques.

      I don’t know how old your partner was; age also matters because dementia shrinks the brain. Brain shrinkage is an expected feature of the aging brain but not in the young. The information I am providing to you here is not an evaluation but so you can see that even the best of experts in the field may not be able to help you if you don’t have the CNS (brain and spine) examined by an autopsy including all that is necessary and if you don’t have MRI records.

      To find a good expert for the analysis, your best bet is likely in a medical teaching university, or, if you feel that a district attorney would take the case on as a criminal act, he/she will have experts on the stand looking at the records to decide if your partner had dementia of any kind or not and if the cause can be determined.

      When my mother died, I donated her CNS to one of the best known teaching universities where I live to do the autopsy and I specifically asked them to check for dementia. I was told that the equipment needed for such is very specific and needs to be handled by a specialized coroner who has such–likely a criminal investigator’s chosen coroner. But even then, showing that the dementia is caused by the drugs may only be possible if an MRI shows that prior to drug treatment his brain was such and after drug treatment his brain became such and the time passed was too short to have ended up with such high level dementia. It is a battle that we have to fight against huge waves also because too many people are labeled with Alzheimer’s disease for convenience sake simply because the symptoms of many other diseases, such as serotonin syndrome, present identically.

      In my mother’s case, she was labeled with Alzheimer’s disease and that could immediately be excluded since neither the MRI nor the autopsy showed any deterioration of the kind in the brain that would indicate Parkinson’s.

      It is a sad state of matter that I cannot help you any better. I am not familiar with experts in the field who can or are willing to give such analysis myself.

      Best wishes; my heart goes out to you.

      Angela

      1. Hi

        I am very sorry to hear this but also glad i found it. I am sorry for your loss and all through the stupidity of some medical professionals. My sister is going through the same situation as your mother. I don’t recognise her anymore – she is like a whole different person. Her mental health doctor has prescribed: zoloft 200mg, serequel 100mg morning and lunch 50mg dinner and a slow release bedtime, valdoxane 1 tablet at night. Pluse valium 5mg 3 times a day and morphine for pain and NAC 3 tablets in the morning and 3 at night.. Also heart medications. In the last 2 weeks she has stopped zoloft and valdoxane and is now on something new. She has collapsed and sick since yesterday (02/04/2016) and now when she rang her mental health doctor she said she has “Serotonion Syndrome” and to stop everything except valium and go to hospital if she gets worse. How can a doctor prescribe 4 different types of mood stablizers like that? I am so angry. She is a whole different person. I don’t know what to do.

        1. Hi Roxanne,

          Sorry for the late response, I just found your comment now by accident. I am very sorry about your sister! I have an answer for your question but it is not appropriate to write it here. I think you know what my answer is based on my story about my mother and my experience with her doctors as well as the many members I help in my migraine group, many of whom come to the group with over 20 medicines all prescribed by the same doctor. The “nice” answer is that they get paid by pharmaceuticals to prescribe medicines so they prescribe, need it or not. Not all doctors are like that! Unfortunately many are!

          Best luck for your sister and I hope that she is going to recover fully! She had a competent doctor who recognized it!

          Hugs,
          Angela

  8. My daughter was diagnosed with serotonin syndrome her frst day of 3rd grade and taken of zoloft. She has Asperegers and an anxiety disorder. She would get excruciating abdominal pain, her face would flush and she would start sweating. As things got worse,she would develop Nero symptoms -eyes not tracking, could talk but not understand what you said,got really loud, lost muscle and urine control at times,and had an irregular heart beat. These episodes lasted about 3 minuts after which the flushing gradually receded and the abdominal pain lessened. Her pediatrician said there was no test for serotonin syndrome but if she tested negative for a bunch of stuff and the episodes stopped when SSRI’s were stopoed,then by process of elimination, she absolutely had serotonin syndrome and it was essential that she never took another SSRI.

    Question 1- Are there tests for serotonin syndrome. He is very open minded and would research any information we gave him.

    Her pediatrician sent her to a pediatric neurologist who diagnosed her with abdominal migraines with attendant seizures. She said stop the migraines, and the seizures would stop too and focused on migraine preventative medications to no avail. Some of these meds we stopped and refused to give her due to the side affects. Her episodes started getting predictable, about every 26 days. She started her periods at age 11 and as predicted, her abdominal migraines gradually stopped. She is 13 now and out of nowhere, she started getting abdominal migraines about day 6 of her periods every month. This week, about halfway through her cycle, she had tworked abdominal migraines with flushing on Tuesday, 3 on Wednesday, 6 yesterday, and so far, only 2 today but had a seizure with the 2nd one.

    The only things we have changed are 1, Reducing her Vyvanse from 60 mg to 10, and 2, drinking alkaline water. Her only other medication is .1mg clonadine 2x perday and an antihistamine at bedtime.

    Question 2 – Could the medication change or alkaline water have affected her serotonin syndrome?
    Question 3 – Any ideas?

    1. Hi Sheri,

      Sorry for the delayed response but I am out of the country with limited internet access so responding from my phone; please excuse typos.

      Sorry to hear about your daughter. Unfortunately there is not one test that can conclude that your daughter has serotonin syndrome. Here is a link to what can be done to at least exclude the chance that she may:http://www.mayoclinic.org/diseases-conditions/serotonin-syndrome/basics/tests-diagnosis/con-20028946

      In general, some of the symptoms you describe fall into many categories so it is really only possible to tell if she slowly comes off the medication (cannot just stop else she may end up with seizures) and see if things improve.

      On the other hand, there is an ancient diet used to treat seizures and now experimentally also autism: ketogenic diet. It seems to resolve seizures over 90% of the cases. My personal opinion is that the ketogenic diet helps because the brain is over 70% fat and our modern diet is low fat. So the brain cannot make the necessary repair. The ketogenic diet for children with seizures is about 80 – 90% fat and the remaining small percent is protein and carbs.

      This diet also works for migraines and many other brain conditions. It is my finding that carbohydrates are very destructive to the brain and especially so for those who are glucose sensitive. People with seizures and migraines are glucose sensitive. There us a strong correlation between these conditions and metabolic disorders.

      So I recommend you consult with a ketogenic expert and try that method. I personally find that members with migraine do extremely well on a less strict version of this diet that I call keto mild. It will be detailed in my next edition of my book.

      In terms of alkaline water: I am personally very much against that. Each of our organs requires a specific pH level for health. Saliva, for example, needs to be slightly acidic to protect against incoming bacteria and also to help predigest our food. Making a body too alkaline makes the body vulnerable to infections. Please check with a medical professional (not a naturopath) about the acidity level needed for your child to remain healthy.

      Hope I managed to answer with few typos by phone.

      Hugs,
      Angela

  9. I am surprised that nobody has mentioned thiamine in this series of comments about serotonin syndrome. Serotonin turnover has been investigated in regional brain areas of rats made thiamine deficient. It induced an increase in endogenous five-HIAA and impaired five-HIAA efflux from the brain. Thiamine deficiency produces the same symptoms as mild deficiency of oxygen (pseudo-hypoxia) that include anxiety. It is therefore more likely that taking an SSRI would precipitate serotonin syndrome in somebody that was deficient in thiamine. Thiamine deficiency is easily induced from the high sugar intake that is so common in America.

    Van Woert M H, et al Effect of thiamine deficiency on brain serotonin turnover Brain Res 1979; 179 (is 1): 103-110.

    1. Thanks for your comment Derrick. You provided a very much appreciated comment. It was not added because it is complex and I tried to keep the article as simple as possible. This medicine does cause hypoxia in lab animals. It is likely to cause the same in humans. I see blood test results from many of my group members and some show enlarged red blood cells, which is an indirect measure of this hypoxia effect that was overridden (or tried to be) by the body by increasing red blood cell size to allow the cell to carry more oxygen. After these migraineurs stop they medicines (like voltage-gated calcium channel blockers, voltage gated sodium channel-blockers and serotonin medicines) they end up with enlarged red blood cells. It is yet to be seen if the red blood cells revert to regular size after some time of recovery. It is too soon to tell since most of the members in my group who stopped these medicines had done so less than 6 months ago–it takes a long time to quit these medicines by titrating down very slowly. Plus the body’s recovery is also slow and age dependent. It will be interesting to see if the body is resilient enough to change the bone marrow’s instructions in producing regular sized red blood cells.

      Thank you for you constructive comment!

      Angela

  10. One other thing I would like to share with you Dr. Stanton… is that neurotransmitter and hormonal imbalances are the direct result of mineral imbalances within our bodies. These imbalances are due to the hugely increased stress of modern life combined with food sources with depleted mineral content from insecticides, pesticides and agribusiness practices. The result of this combination is mineral deficiencies and imbalances that put a great deal of stress on our bodies, affecting the endocrine systems especially. Minerals are the building blocks our bodies use. For instance, magnesium alone is responsible for over 3000 enzymatic reactions in our bodies. Ceruloplasmin, a protein produced in the liver is responsible for excreting excess metals like iron and copper, but most of us are very deficient in it, and as a result metals like copper and iron become dysregulated and stored due to low cerulosplasmin status. I mention all this because it is truly the underlying cause of neurotransmitter dysregulation as well. A lot of research is available on mineral and metal dysregulation… and Morley Robbins of the facebook group called the Magnesium Advocacy Group (he has branched beyond magnesium exclusively now … his research has uncovered the profound health effects of iron overload and copper overload) where he shares his findings and has developed a protocol to raise ceruloplasmin and balance minerals … he is not the first to work with mineral balancing obviously, many others have come before him, such as Rick Malther, etc. Anyway, I just wanted to bring this information to your attention. Some books you might find interesting are the Magnesium Miracle by Dr. Carolyn Dean and The Calcium Lie II (which covers much more than just calcium) by Dr. Robert Thompson.

    1. Thanks Carol. I am quite familiar with the names and the books. I am also very much in agreement with you on mineral deficiencies and must add that in the migraine group (that is my main focus for now) I start by removing everyone from all vitamins and metals and herbs and send each for blood tests to check what (if anything) they are deficient in BUT everyone gets instructions to take magnesium. We also found a website that explains which magnesium does and what and everyone takes magnesium according to their condition. On one of my website where I keep some of the testimonials from migraine members (you find it here: http://stantonmigraineprotocol.com/testimonials/ ) you can see that since every person takes different magnesium based on need, significant improvements are achieved in heart condition as well as brain and whole body.

      In terms of general mineral imbalances: yes, my book “Fighting The Migraine Epidemic: How To Treat and Prevent Migraines Without Medicines – An Insider’s View” is specifically discussing one key types of group of minerals: those that make up our electrolytes.

      I just published an academic journal article on what actually happens when migraineurs start to balance their electrolytes that is publishing in Volume 11, issue 2 of the Journal of mental Health in Family Medicine and can currently be found here (it may move):

      http://www.mhfmjournal.com/abstract/migraine-cause-and-treatment-0.html

      In this article I explain how migraines respond to proper electrolytes: they vanish. It is that simple. Thus to provide support to your suggestion: indeed, I would think that a very large percent of our diseases (both of the body and that of the mind) are the result of our poor diet, too much sugar, not enough proper minerals and water. I am in full support of your argument!

      Hugs,
      Angela

      1. Wow… So impressive Angela! I am so happy to hear of all the knowledge you have amassed regarding magnesium, other minerals and electrolytes and that you incorporate it into your protocols for migraines. Minerals and electrolytes are so foundational to our health but it is amazing how they are so ignored in the mainstream med community for the most part. I look forward to reading your links and learning more!! I still get a little confused about which magnesium type is best for what, so I look forward to seeing that info… and will share in the files of the MAG fb group. Best to you. I will be following your work!

        1. Thanks Carol. I actually published an academic journal article on the subject of migraines and the need for minerals just recently–it is still in press but can already be accessed. This particular article focuses only on a limited number of minerals and magnesium is not one of them becuase of limitations of space and the required explanations but it helps you see the connection of migraines and the importance of minerals. It also shows you why the medical community has been blind to this for so long. I hope you enjoy it:

          http://www.mhfmjournal.com/abstract/migraine-cause-and-treatment-0.html

          For some reason the supplementary material is not included in the article but is available upon request.

          1. Angela,
            I have been seeing a doctor trained in “functional medicine” and when I asked about the minerals, his reply was that they did NOT learn anything about them!! I was flabbergasted!! He seemed to only know about fatty acids and aminos, etc. He and another doc with an online newsletter did not seem to realize that SOME people cannot convert betacarotene to Vitamin A since they are missing some components for that process!! It seems like we are quite a bit on our own with dealing with our health (of course, I was sick when I was 12 — now 69 — so I am USED to finding my own answers from literature)!!
            I recently made a comment to a doctor (turned out she was a naturopath in an admin position) that if the medical community would only take proper care of the older generation there who not be any need for them to seek “euthanasia”!! Older people can be functioning participants in our society. Two of my aunts are over 90 and still contributing and very lively — the older one still plays bridge and treated herself to a 90th birthday present by going to the track in Los Angeles and riding 6 laps at 175 mph with a racing driver!! Now she talks about going again!

      2. Angela,
        Thanks for the article — as I was telling Carol, I take high doses of tryptophan in the winter. I have had some of my minerals tested and generally those that are high in others are low in my body. My zinc and copper were low despite taking high doses (then I found out that I had celiac disease — NO formal diagnosis since I had stopped eating wheat before the doc did the gliadan test — SIGH!!) I cannot seem to tolerate any “grains” — even quinoa gives me diarrhea and then I absorb even fewer nutrients and minerals from my diet. I do a lot of reading and searching (really enjoy Hormones Matter) and feel it is possible that I have a pyrrole disorder since it need to take a LOT of minerals and B vitamins to feel “normal”. I am taking some magnesium (and had some gel to apply to the skin but can’t raise any response from the supplier at this time)and will pick up a more absorbable form today. I mentioned to Carol that I have Sheehan’s syndrome so many hormones need to be checked and balanced and finding the right practitioner is really difficult where we live!
        Thanks again for the article!!
        Gloria

        1. Hi Gloria,

          You sent chills through my veins reading about the high doses of tryptophan. While it is an essential amino acid that we must consume, serotonin, and all triptans (hence the similarity in the name) are derived from it. High doses of it CAN cause serotonin syndrome! I usually ask everyone to stop taking this supplement in my migraine group because they take many other medications and so this can cause SS plus other undesired interactions.

          One of the reasons why you are likely having trouble absorbing minerals and vitamins from your food is because Celiacs have a damaged intestinal and gut lining. It is very difficult to find food that you do not make on your own that is without some gliadin protein (or some other proteins that are part of the gluten family). I am not a Celiac and also tested negative to all grains (for the same reason you did… stupidly stopped grains many weeks before the allergy test… duh) but, to give you an example for a non-allergic reaction of someone who ate bread and grains all her life with no problems, after stopping all grains I ate hash browns inn a restaurant last Sunday and boy did I pay for that! And I had no clue I was sensitive (not allergic apparently and clearly not a Celiac) but the price us sensitives pay is

          1) inability to absorb nutrients even from pills;
          2) lack of proper gut flora for absorption of nutrients in general.

          Thus it is not enough for a Celiac to go grain free. A Celiac must also take a good 2-3 months of probiotics until the proper gut flora is established–normally probiotics is enough for a week or 2 weeks max but for Celiacs the damage is so great that the bacteria cannot even establish fast enough well enough. It is totally pointless for most people to take vitamins – I had that tested in my migraine group with B-12 as someone just had a blood test after taking B-12 pill and had been taking it forever and was still low. Monthly injections of B-12 are recommended. I am not sure about the rest of the vitamins and minerals. Magnesium comes in many shapes and forms and given your status as a Celiac, your absorption will greatly depend on what magnesium is best for you.

          Some time ago I found this page that gives a very good explanation of the top 10 magnesium types (both good and bad) so you can see which may be the best for you.

          http://www.naturalnews.com/046401_magnesium_dietary_supplements_nutrient_absorption.html

          However, a word of caution: magnesium citrate has the highest bio-availability but it is also a laxative! Given your Celiac status I would avoid that particular kind of magnesium.

          I hope this is helpful!

          Angela

    2. Carol,

      I often seem to have the OPPOSITE “reaction” to meds and some supplements — I have been taking Tryptan (tryptophan) for about 20 years. The first sample that I tried, I told my son that I felt “ambitious” enough to feel like cleaning the fridge and the stove at the same time. He told me to rest till that feeling passed which did not take long at all.

      I have Sheehan’s syndrome so my hypothyroidism is problematic and I also have severe seasonal Affective disorder (we are in Canada in the central prairies so not much sun for about 8 months of the year).

      I have read several times about Serotonin syndrome (because it do take high doses of tryptan — the bottle says 8 to 12 grams per day and I have used that high a dose in the winter — but down to 2 grams during the summer now that I am sunbathing). So I am somewhat concerned about serotonin syndrome, but do not seem to have ANY of the symptoms (my digestion is poor — celiac– and I do not absorb well at all) that are described in the literature (except maybe for higher bp and heartrate — I will be 70 next year — which docs attribute to my thyroid meds). I am able to “regulate” my dose of Tryptan by watching how I interact with others. If I get too talkative (like someone who has had too many alcoholic drinks), I cut back on my tryptophan. I am also taking Magnesium and have looked at Carolyn Dean’s info.

  11. May I please make a suggestion? Defining serotonin syndrome in the opening paragraph would be very helpful to those of us not familiar with the term. Also, if I understand the article correctly, everyone who is taking an SSRI, which inhibits the reuptake functioning, will by definition develop SS? Is that what you are saying? If so, very vast implications. I am really glad to have read this article because a good friend of mine is caretaker for a 100 yo woman who displays many of the behaviors your mother had when she switched to the SSRI. I will share this with her. Thank you!

    1. Thanks Carol. I considered doing that (up front explaining what SS was) but then I changed my mind because I wanted it to be emotional and it is a very emotional story for me. I cried my way through the article because of the loss of my mother and how I lost her. So it is also filled with typos but I decided to let it go since it reflects what it is like to witness someone with SS and feel helpless more than coldly tells you facts.

      Not everyone gets SS from one SSRI and I see many people in my migraine group who take more than 3 types and are still OK. One never knows when the threshold will be crossed. Because serotonin builds up in the brain with the assumption that it is needed, if it is not needed and builds up to toxic levels is when the problems show up. This threshold is different for each person of course. It is also dependent on what one does during the day.

      Only a small amount of serotonin is needed in the brain and how much is used versus how much is made is individual. However, if the 100 years old person exhibits three of the above list of symptoms (the three of these symptoms is as per NIH that you find here:
      https://www.nlm.nih.gov/medlineplus/ency/article/007272.htm )

      I recommend that you print the instructions out on the link above and hand it to the medical staff/care taker of that old lady and that they stop serotonin immediately and follow the protocol for treatment. I see you have some other comment as well. I respond to that separately.

      Hugs,
      Angela

      1. I am so sorry that your poor mom suffered in this way. To go from such a thriving life and bright mind to depression, anger and confusion that could have been alleviated must have been devastating for you and especially when you knew what was going wrong. My mom fell and broke her ankle at 81… and it was the beginning of the end for her. Her medical mismanagment was so frustrating as well… she developed IBS and her gastroenterologist did nothing to alleviate the horrible symptoms. It is what eventually killed her 6 mos later, and I now know it could have been treated. After her death I learned that her long term endocrinologist had so mismanaged her thyroid treatment following its removal that the last 25 yrs of her life were needlessly horrible for her; it actually destroyed her life. I of course had no idea at the time about the thyroid treatment being so wrong…. it must have been even more heartbreaking for you to KNOW what was happening and yet no one would listen. My personal feeling is that doctors tend to view the elderly as about to die in general and so they just want to make as much money on them as they can. Harsh view of things, but I saw so many things that convinced me of that. Thanks so much for explaining a bit more about how SS works. I will definitely forward this link to my dear friend Dee who is her caregiver…. right now. So take some comfort that your heart-breaking story will help others. Blessings. Carol

        1. Carol,
          I am so sorry to hear that your mother’s thyroid problem was not handled appropriately. My mom was in the same boat — We are in Saskatchewan in Canada and sometimes I wonder about the medical care. It seems like for the doctors — ANYWHERE in the lab range is just fine but IF one reads the literature for many lab results the best levels are in the middle or the “upper” range. That is not true of the TSH lab range — one doctor commented to his patient that if one was hooked up to an IV that gave the optimal thyroid hormone levels — the TSH SHOULD theoretically be 0.00! AND the endocrinologists here wanted mine to get to the middle of the range!!?? And I have Sheehan’s syndrome so my pituitary is just limping along and not working that well. SIGH!! We do so much need to learn and be our own advocate. Yesterday my doctor wanted me to add an antidepressant to my Tryptophan prescription because of my “anxiety” — I told her that my “anxiety” is because the doctors are not being helpful for my situation!! AND then she screwed up my prescription — ordering the “summer” dose instead of the “winter” dose!!

  12. I have had Serotonin Syndrome 2x. The first time my primary care physician was titrating me off of one SSRI and titrating me up with another SSRI. I was rushed to the hospital from her office. I spent 3 days in the hospital. I was given epinephrine in the ambulance and benadyril. I was then sent to the ICU. I was on Paxil and serzone..not one doctor that came to check me out had a clue. I am also a chronic daily migraine suffer. The next time I had serotonin syndrome my new PCP sent me to a poor excuse of a psychotherapist. I was taking Celexa and he decided to prescribe trazadone to help me sleep. I will never forget my husband drove me to see the doctor as I had many of the symptoms mentioned in your article. I had a window to be treated and stopped. Instead the doctor asked me to leave the room for a moment he wanted to speak to my husband. The long and short of this story the doctor told me I would not be thrashing on the floor. I would be fine. Three days later, my husband drove me to the ER where my 11th neurologist met us. I don’t recall the ride to the hospital. My dear neurologist knew exactly that I had serotonin syndrome. I once again spent 3 days in the hospital. Bags of Benadryl, an MRI an extensive neuro. exam every day. Needless to say, I am still battling Chronic Daily Migraines Depression, Fibromyalgia and on my 15th neurologist. I am educated now. I hope I may send your fine article regarding Serotonin Syndrome to my 15th neurologist. Thank-you and God Bless. Jean

    1. Oh my goodness Jean-Marie! I felt my blood pressure rise as I read your comment here! Not one of them treated your serotonin syndrome correctly! It is a miracle that you are alive! My gosh. Glad you are with us!

      I hope you are not on any serotonin medicines anymore. If you are not already in my migraine group, please join! There is much we can do to help you. Please ask to be let in and remind me of your comment here so I know who I am talking to. I am just cleaning the group out of people who are there for decoration but we are still close to 2000 so I do not know if you are in or not: https://www.facebook.com/groups/219182458276615/

      Looking forward to trying to help you as best we can!

      Hugs,
      Angela

    2. Thanks for commenting on this article. I take large doses of tryptophan and my doc wanted to add an antdepressant and I refused because I have been on this medication for almost 20 years and am able to tell when I am getting too much — I get TOO talkative like someone who has had too many alcoholic drinks. BUT I often have the opposite effect from medications — tryptophan is supposed to make a person sleepy/relaxed and I get “energized” which is what I need since I also have Fibromyalgia with the main symptom being FATIQUE — AND maybe that is mostly hypothyroidism like Dr. John Lowe talks about in his book The Metabolic Treatment of Fibromyalgia. His info seems to apply to me — he talks about thyroid hormone “resistance” and I am not sure what exactly he means by that but I likely have it.

      Jean-Marie, I hope that you are NOT still taking that Serzone — it was supposedly pulled from the market because of causing liver damage. I was on it for a bit over a year and my stools got paler and paler. The pharmacist called to tell me to dump that med but I never heard anything from the doc who prescribed it and at the time didn’t know that I was getting liver damage from the Serzone!!

      1. Gloria,

        I am also working on fibromyalgia and have a group specifically for that but it is still very small.

        https://www.facebook.com/groups/738392076228348/

        Many of the members in the FM group are also members of my migraine group and use the migraine protocol. It apparently benefits them though does not “cure” the disease. However, I have a few ideas (I am always full of ideas for better or worse) and so I want to ask you a question: Have you had Mononucleosis or any other types of encounter with the herpes virus, like a cold sore or similar, when you were a child?

        Angela

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