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Serotonin Syndrome

Has anyone ever had Serotonin syndrome. I am desperate to talk with someone else that has experienced this horrible event.
23 Responses
368886 tn?1466238884
MEDICAL PROFESSIONAL
Hello.

Can you share your experiences? Serotonin syndrome is rare. It occurs as a side effect of some of the commonly used antidepressants of the SSRI group. There may be an excessive serotonin production in the brain.

The various symptoms may be life threatening. Have you been on any medicine?

Regards
Avatar universal
I have always been very healthy and active. I did yoga every day. No smoking or drinking. I was not on any OTC meds or prescriptions. I went to the doctor in Sep 07 because my chest suddenly got very warm on 2 occasions. I was an idiot and let him convince me that it was anxiety and panic attacks. I have never struggled with these before. He put me on Celexa and I had a reaction to the first pill I took. It was horrible My body was burning my head was pounding I felt like I was going to pass out. I went back in and he just told me that I had very bad anxiety. So he put me on Buspar. I took this a few times and by this time I was in so much pain in my head and neck. My entire body started to tingle, it still does to this day. I then went on Lexapro for a month and it was the worst experience of my life.IT constantly felt like someone with long fingernails that were on fire and were digging into my head, neck and upper back. I was loosing weight and began having muscle twitching and spasming. I could not drive because my vision was so blurry. My ears felt like they were going to explode. I still dont have my hearing back all the way and my ears ring constantly. I also now have black floaters in my eyes.I was in so much pain I could not even be left alone. People were taking care of my 3 kids and my house while my husband was at work. I could barley walk. I began to have so many strange symptoms. And my doctor was convincing me that anxiety could cause this kind of pain. I thought I was having a nervous breakdown. my Insurance would not cover Lexapro. ( the others were samples) So I went a week without and SSRI and now that I look back I was feeling a little better. My doctor then put me on Zoloft. I took 4 half doses and I felt Like someone had literally lit my insides on fire I was screaming and crying all the time. The burning had mostly stayed in my chest, neck and upper back on the other SSRI's, but when it went into my brain on the Zoloft I knew something was terribly wrong. This was the weekend after Thanksgiving. I can't even begin to tell you of the hell that me and my family have been through. I went from 112 pound to 98 pounds in a matter of weeks.I can't even begin to describe the pain that I felt. I also had more test than I can even remember. Spinal epidural,  2 spinal taps( because the hospital forgot to run the test they were suppose to the first time) And the first one leaked so I had to have a blood patch. I have given more blood than I even thought I had in my body. I took a paper into my doctor with tons of highlighted symptoms of serotonin syndrome and he was dumbfounded. He said that I was lucky because usually by the time serotonin syndrome is diagnosed the patient is in a coma.  I have never felt the burning in my brain again, and I now am trying to deal with all of the strange symptoms that are still hanging around as well as figure out what the real problem was to begin with. They have discovered that It has triggered hyperthyroidism in me now. That stinks.. I wish I never would have gone to the doctor in the first place. And I should have realized earlier that it was the medicine causing this, but I trusted my doctor and I was so scared that he was telling me that if all I could control was the anxiety until we could figure out what was causing the pain then I should take the meds. I just hope that the lingering symptoms will go away and that maybe I can figure out what the real problem was. There is no doubt in my mind that that medicine would have eventually killed me. I could feel that I was close. I am getting better, but I wish that I could be done with tests. I feel like a science project to all of these doctors now. I just want my life back. I still tingle from head to toe every second. My chest and neck will burn sometimes, my ears ring and feel full, I have unbelievable headaches everyday, I still twitch and have muscle spasms, but not nearly as bad. and my upper back has some strange pain. Sometimes usually in the middle of the night or first thing in the morning, my entire upper body burns and is shaking on the inside so bad . I have even had times were my legs feel so numb and that I have to wait for it to calm down to get up. It is all so strange and scary. I am desperate for help or advice. Thanks you so much!
368886 tn?1466238884
MEDICAL PROFESSIONAL
Hello.

I must say you have been suffering a lot. Especially when there was no fault of yours in seeking help. But I do hope things get better.

It is true that serotonin syndrome can lead a person to coma, but not that frequently. You were on starting doses of Lexapro and Zoloft.

The symptoms will not go away soon. You can take some anti-anxiety pill for you to be able to stay calm while you are recovering.

Has the original symptoms of warm feeling in the chest gone?

Regards

Avatar universal
Thank you for your insight. No I have not figured out what was causing the original problem. In fact it my chest is always warm and tight now that some times I can't catch my breath. I have flare ups when the tingling and burning are really bad, but I am on 300mg of lyrica a day and I think that is helping a little. My neurosurgeon is going to review the mri's from when this all started to new ones this week to see if there is any apparent nerve damage. But, that is all my brain neck and back so I don't know what kind of tests to have to look at my chest. Any suggestions?  I have so much going on now that I don't know what is causing what anymore. I know that it will be ok. It is just hard right now I have 3 little ones that need their mom back. I just have to find the right doctor. Someone will help me I know it. But at this point I don't know where to go or who to see. I have seen more doctors in the last 6 months than in my lifetime. I really just want to know what the problem was to begin with. It has just been overshadowed by all of the reactions to the medicine. Thanks again !
368886 tn?1466238884
MEDICAL PROFESSIONAL
Hello.

I suspect your Neurosurgeon will order for an MRI of the back to see if there is any cervical or thoracic nerve compression or disc bulging. He may also ask you to have an endoscopic evaluation of the food passage.

The burning pain may be due to acid reflux or neuropathy.

Regards
Avatar universal
I also had serotonin syndrome.  My old doctor prescribed imitrex and pristiq together (there's an FDA Alert to not mix the two).  I had burning in my occipital lobe, right side of face, right shoulder, upper back, and burning down my right arm.  I called my old primary and they told me to wait off the side effects of the imitrex instead of going to the ER.  My head continued to burn for two months when another doctor finally pulled me off of the pristiq.  The burning is gone for the most part but I am left with what they are now calling generalized dystonia.  I also have a chiari malformation and a cousin who also has both disorders.  I'm currently on valium and artane for the muscles spasms.  The new doc said it may be dopamine responsive because of the serotonin syndrome; however, they have not given me a dopamine med because it can increase pressure on the brain and irritate my chiari/migraines.  I wish I was one of the lucky ones that the symptoms just went away after I stopped the meds but I'm afraid the medication may have also triggered a genetic predisposition.  Have your muscle contractions gone away? and if so how long did it take?

Thanks
Avatar universal
I also had hot flashes that traveled up and down my body, nausea, muscle weakness, confusion, and a delay in my speech.  I currently have tremors in my left hand and a slight nodding movement/tremor with my head.
Avatar universal
Can you tell what types of tests can be run to verify that the symptoms one would experience are Serotonin syndrome and is there a time frame which they need to be done in? I have a friend who asked her physician to take her off of Prozac, instead he had her also take Trazodone & Ativan. She was involved in a bad car accident. She has no memory of the accident or the bizarre behavior she exhibited immediately after. Is this also typical of Serotonin syndrome?
Avatar universal
This is so crazy....I am going through the exact same thing. It started the exact same way as gm22  I am in soboxone my dosage was upped n suddenly the same thing. My doctors true convincing me it was panic attacks ...but the symptoms only got worse. I noticed after I take my soboxone the symptoms intensify and I feel like I'm going to loose consciousness. I started valuim yesterday and it has dulled the symptoms. But still after I take my soboxone suddenly everything gets a lot worse. Could this b seratonin poisoning?
Avatar universal
I get numbness in my face and head, ear ache and burning ears...muscle spasms, Sharp pains in my kidney area, a weird pain.in back of head and my neck and head feels like its on fire during the flare ups..
Avatar universal
Quit taking it girl; but let them whine you off..I almost died from it because I suddently quit taking it. they put me on celelxa all kinds of crap. It made me worse. I ended up in a mental insttion for a week in Sept of last year & again in May of this year. Where they finally dignosed me with Seronton Syndrome. But that's all I really know I'm still looking for answers.
Avatar universal
Hello. I am trying to warn people of this condition and findI out how many others have suffered through this terrible experience.  I have had this reaction 2x with different medication combinations.  I still have residual effects (intention facial tremor and aggravation of heart arrhythmia that was dormant for 20 yrs).  The first time, I was taking lexapro and 3 days after effexor was added it occurred. The second time I was taking depakote, lexapro, and ritalin- dosage of lexapro was increased and within hours reaction started.  Both times symptoms were chest burning and pain, shortness or breath, anxiety, significant restlessness and agitation, increased blood pressure, tachycardia, tremoring, teeth chattering, sweating, and abnormal muscle spasms (ie- wrist flexion with finger extension) when blood pressure cuff was compressing to take pressure), and temp of at least 100 degrees- ( I say at least b/c they DID NOT record my temp in ambulance- I got this info from my hospital records when they checked ~ 1 hour after symptoms started).  It was VERY scary and made worse by the fact that ER dept was clueless thinking I was having a panic attack or manic episode.   I have been researching on this I have found that ~ 85% of doctors are unaware/unfamiliar with this condition, presentation, complications, and treatment. VERY SCARY.  I am a rehabilitation therapist and I knew something was very wrong- but even as I was having episodes of uncontrollable tremoring and tachycardia, the nurses and arrogant ARNP kept saying I was only having recurrent panic attacks. I was monitored for ~ 8 hours with no "treatment" and released.  But, soon as we got halfway home, it started again- this time with me being drenched in sweat in a matter of 30 seconds and vomiting. Back to ER where they again diagnosed panic attack and hyperventilation (I which is bound to happen if your heartrate is 130+ BPM)! Anyways- just wanted share my experience and see who else has gone through this! One piece of advice, while most health care professions do care and try to be knowledgable, they are imperfect and can make mistakes (in addition to being just plain arrogant and not willing to consider other causes for common "symptoms"). YOU know your own body must advocate for yourself- bottom line. I was lucky my episodes were not more serious and resolved over time (except for some residual symptoms noted above)and with stopping the meds that initiated the condition in the first place.  Some people are not as lucky and have died from this- so take it very seriously and get help immediately if you have such symptoms! Take care!
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