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.
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
- Rapid heart rate and high blood pressure
- Dilated pupils
- Loss of muscle coordination or twitching muscles
- Muscle rigidity
- Heavy sweating
- Goose bumps
- High fever
- Irregular heartbeat
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.
This article was published originally on Hormones Matter on November 30, 2015.
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