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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.
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Avatar universal
I had severe seretonin poisoning last summer.  I had 5 of the 7 symptoms of the syndrome.  The doctors don't want to believe that you can have a lower dose of the poisoning.  I had been to many doctors who couldn't diagnose what was wrong.  Seretonin toxicity is what develops, and the seretonin system is damaged.  Not much is known about this chemical.  How does it get from the small intestine, where it is produced, and go to the brain?  I can tell you because my seretonin level was high, and I had strange heat patches, that came across my chest and into the neck on the right, near the carotid, then went up behind my ear, and across my head to the left side, and went off like little bubbles.  I don't think they have that in any medical journal.  My nerves in my feet are permanatly cooked.
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New england journal has info on it. "The serotonin syndrome" edward boyer M.D
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I lost most of my hearing too GM22. Went through the many hours lasting seisure three times - many times more in lesser potential. The brutal tinnitus of last seisures never went away - it is to my understanding not the typical type - what i've got is mostly extremely loud high pitched "grey" noise - coupled with very, very high pitched ringing. I've lost some ability to focus. Often I cannot hear what people talk - I'm completely deaf to higher frequencies.

When all this happened many years ago there was no public information about serotonin syndrome. I have zero faith in western mental health care - except Jon Zinn-Kabat style zen influenced method.

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Hayley I really do hope that at this point youre feeling better. when youre in a situation like that, where no one is listening to you, its time for you to get louder.no one knows your body like you do. you know when something is wrong. and the doctors nor your family can tell you its normal when you know its not. next time you are having that problem make them listen. if you have to yell in order to do so then that's just what youll have to do. otherwise it will take you even longer to get the help you really need. do not be afraid to speak up and take action.
Tahlia
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Avatar universal
I am going through the same thing! I'm 19 and 2 weeks ago today, I was prescribed 50mg sertraline for intrusive thoughts, I wasn't depressed or anything. 6 hours later I started to get really hot, felt sick, had a fever, shivers and my mind was all over the place, my heart rate was so fast, I knew instantly that something was wrong, I ran into my parents room woke them up and collapsed on my dad, they didn't take me to the hospital and assumed I had a panic attack, it was not a panic attack. I had diarrhea for 2 days and couldn't get out of bed, and about a week later, my blood pressure went to normal, my temperature went back to normal and some of the symptoms disappeared, my heart rate returned to normal. I think I had serotonin syndrome and think I may still have it but mild..my mind has changed completely, I have derealization/depersonalization. short term memory problems, cant concentrate, feel disoriented at times, this has been on going for 1 and half weeks, I have hallucinations both auditory and visual,  My muscles are always twitching and I have constant tingling in all parts of my body -legs, feet, hands, arms and my chest, everywhere! today I was able to handle it better but at this moment, I feel like I am about to die :( I had the reaction to the first tablet and haven't been on any other med since. I have been to 3 docs and all have said it's anxiety when I know for sure it isn't. I really don't know who to see or talk to about this as no one, not even my family will listen to me, I feel really unwell :( so I know what you are going through/went through. Hope you are feeling a little better now :) and  if anyone has any ideas on what I should do, i'd appreciate it very much xxx
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Did you ever manage to get something to help you? I'm currently going through what you did
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Can benerdryl help with the side effects of geodon after geodon ois stopped
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Hi- After reading some of these posts, I think I may have had serotonin syndrome in March 2013.  I was taking 100 mg of Sumatriptan for migraines and .25 mg of Cabergoline for a prolactinoma.  The first week that I took Cabergoline I felt that I had a reaction - muscle spasms in my back and strange uterine contractions that would come and go causing my vision to go blurry. Meanwhile I was also taking my migraine meds.  After taking Cabergoline for 9 wks I experienced an awful attack of some kind.  I felt like I was being electrocuted throughout my whole body.  It started in my feet, went up my legs, through my hands and then my arms. My right hand would twitch and I had trouble gripping things.  The worst part was the pain in the center of my chest with radiating nerve pain around it making my arms tingly with spasms and eventually going numb.  When this happened my sight would go blurry and I would start falling asleep!  I had spasms in my back on both sides where my kidneys were and couldn't stop going to the bathroom.  Had this for a day and eventually went to the ER where they couldn't find anything.  Finally went to a neurologist who thought I was having a drug interaction.  The symptoms are finally subsiding after 5 months.  I only had the chest pain for 5 days, but the other symptoms persisted - tingling , burning, aching pain in my hands, feet, arms and legs.  Half of  my face had the same kind of pain, which I thought was a tooth ache, but ended up being related to the nerve pain.  Now I am finally better with only numbness and occasional burning in my feet and face.  I haven't been on the Cabergoline for 5 months and I am on one third of the dose of Sumatriptan for migraines.  Found out that you can't take these 2 drugs together.  Not sure what to take for the pituitary tumor because I don't dare take Cabergoline!  It was hell having this nerve pain and I empathize with anyone who has experienced it!  I hope that I never have it with such intensity again!  
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Avatar universal
If you're not convinced that you're mentally ill and your doctor hasn't given you any sort of hard diagnosis...and you can afford to take the recovery time...I would ask the doctor if it is safe to slowly taper off the medication(s). They will be resistant since they're trained to believe that you need the medication. Mine told me it was her professional opinion that I did not stop but I knew I had time for recovery (I withdrew from college and was living with my family) so I took the chance, once she told me it was safe, and I'm guessing was withdrawal. My psychiatrist tried convincing me that it wasn't withdrawal but the effects of my mental illness but after a while the effects subsided.
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Avatar universal
Hello everyone, I had been off and on zoloft for two years, initially diagnosed with "social anxiety". The first time I stopped because I started blacking out when I drank. I started again on a much lower dose (50mg zoloft) while taking 50mg vyvanse. I hasn't stopped drinking and I went through a **** show of hospital visits and basically losing my mind. But right before all that, I was experiencing sharp neck pains and severe trembling and spasms that got much worse once I decided to stop cold turkey (the vyvanse first and then the zoloft). In a psych ward, I was given Geodon and the intense sharp neck pain started almost 5-10minutes within taking the pill. Then I started taking Buspar; same thing accompanied with tight chest and feelings of death. When I went to the hospital again I was put on a cocktail of drugs which seemed ok; paxil in the morning + trazodone & resperidone at night. I would still freak out at night if i didn't fall asleep at a certain time. I still didn't feel normal and I was scared of my psychiatrist who just wanted to give me more meds so after she assured me that it was safe to stop the meds since they were a low dose, I proceeded to stop one by one and it SUCKED. Migraines that made me think my eyes and head would explode, sharp chest and neck pain. Rippng pains through my head. It's now a year later and I feel more or less normal. I am not on medication anymore. It took a while for the tremors and muscle spasms to go away but in about 6months I was able to work in a lab again and pipette (had to stop bc of tremor) and now I just twitch a bit before bed time.

I am not necessarily against medication. I know people who have to go through **** show of changing up their meds but still take them because they help.  

I guess what I want other people can glean from this is that switching between medications can be an awful experience and many doctors seem a bit insensitive to this.  My psychiatrist said all my symptoms were "rare" but I have a friend who struggles with depression and she has gone through similar side effects while adjusting her meds.  A small problem  can escalate out our control and into the hands of doctors which, for me, was extremely frightening. I also want to give people hope and let them know that things can (and usually do) get better with time!!! Please be patient, and give things time!

Stuff that helped me while I was struggling with meds: prayer and/or meditation, running, art, loving myself, communicating with friends who have similar experiences.

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Avatar universal
Ive done quite a bit of research on this topic.I myself have these very same issues and i am in the same boat right there with you guys.Serotonin syndrome is what our unique condition is called.I highly suggest if you do not want these problems to escalate to get off the medication.Do not go cold turkey.It is very important that you slowly and gradually lessen your dosage and let your physician know that you will be doing so whether they recommend it or not.A lot of doctors think they know it all.I have been the first to let my doctors know that because of their negligence i have been permanently physically and mentally damaged.Of course these symptoms i have may lessen over the years and i will learn to cope with it.But overall there is no treatment for it.An anti anxiety medication that does not contain serotonin in it can be prescribed for the panic attacks and stress.It can also be used for muscle relaxation.But you could just get muscle relaxers for the particular issues if you have spasms or what not.there is a medication that has been used to help lessen the symptoms that we are all having.IT is mainly an antihistamine with anticholinergic.it helps with allergic reactions.And reverses the symptoms of serotonin syndrome.do some research on it.
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Avatar universal
In Aug. of 2004, I had a car accident and was prescribed Ultracet (Tramadol w/ APAP) and Mobic for a torn rotator cuff. Had never taken either drug before. Took a Mobic, followed by an Ultracet. At first, I felt GREAT. I felt no pain! In fact, I felt euphoric. I chatted away with a neighbor, feeling on top of the world... though after a while, my ears started ringing and I was feeling a little dizzy. Then, I started to get a nauseating headache, and the ringing in my ears/dizziness worsened. The pain was back, but not just in my shoulder a-more, all over. It had been a little over four hrs. since I had taken the Ultracet. Acc. to the dosing instructions, I was to take 1-2 pills every 4-6 hrs. So, I took my second Ultracet. My face was now on fire, I had an angry rash down the left side of my face/neck. I was swimmingly dizzy, horribly nauseated, and had an awful headache. I tried to email a friend, but organizing my thoughts was a challenge, as was typing. I was trembling, my muscles were spasming, I felt so uncoordinated, I could hardly get up off the futon. My tongue felt huge, my throat was raw. I could hardly swallow. I was having trouble breathing. I started feeling very anxious. I felt like I was going to explode/pass out. I laid down on my bed, and for the first time in hrs., I felt peaceful. I was starting to go under. S-how I knew that if I went to sleep, I would not wake up. This is when I dialed 911. Seven EMTs (!) showed up at my door. E-thing from here on is a blur. I was struggling to stand, swallow, be coherent as I showed them the medication I took, and tried to answer what seemed like ridiculous questions I was being bombarded w/ simultaneously. No, I did not overdose. Yes, I am sure. No, I don't do drugs. :/ I have hypoglycemia, and thought perhaps this might have s-thing to do w/ how shaky I was feeling. I had tried to drink some mango juice earlier, and even took two glucose tabs, though swallowing them was a chore. One of the EMTs tested my sugar and told me it was only 41. My b.p. was through the roof, and I normally had low b.p. My heart was pounding. I was taken to the ER via ambulance. I was left alone in a room, w/ a needle in my arm, nothing in my IV. I couldn't stop shaking. I was so cold. A teenage boy showed up w/ a blanket... though later, when I inquired about the sweet kid who kept checking in on me, nobody knew who he was. I was in and out. Around three hrs. later, my parents showed up, after driving in from out of town. My father made some waves, and after 4 hrs., a physician finally saw me. She took one look inside my mouth at my swollen tongue/throat and started an IV drip: dextrose, methylprednisone, to reduce swelling, and Zofran (for nausea, and also an HT3 antagonist, I later learned... Tramadol is also a mild SSNRI). I fell asleep praying. I was discharged later that day, told to take Benadryl, and follow up w/ my physician. My parents dropped me off at my apt. and went to get lunch. I thought the worst was over. This is when it all started up again. They took me b
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Avatar universal
I recently had serotonin syndrome this past feb 2012. I was put on celexa for tension headaches-(a non-label use) It worked great for the most part. I would have the occasional headach/migraine. One Monday evening I had to go to the ER for a migraine.It was the first time I had to go to the ER for that but it was the worst headach I have ever had. They gave me IV torodol,benadryl and droperidol. With in minutes my headache was completely gone. However once the meds were given to me I had a hot flash and felt like  I could breath. I work in the health care feild myself so I thought it would quickly subside and I would be fine.Inside my shest I felt fluttery/anxious. For the next couple days I couldn't put my finger in it but something was not right. By thursday I was at work when something went terribly wrong. A rapid responce was called to get me help. My blood pressures were 150/100's and my hr was greater than 160's. I felt like I was on fire and could breath. I didnt feel like I was going to pass out I just felt like this was it. My heart was just going to stop and I was going to die leaving 3 young children without a mom. by the time I got into a hospital room I was gone. The Dr. thought at first I could be a painc atack. Repectfully I dissagreed. With in sec it started all over again. They check the drug interactions of celexa from the meds I was given in the ER and He was able to quickly diagnos me with possible serotnin syndrome. I was treated with IV metoprolol for the high blood pressure and heartrate and given ativan to help keep me relaxed while we waited it out. I also had hyperreflexia as well. later that night it happened again not as severe and the ativan was repeated.

By the next morning I was feeling better, however when I walked or do little activity my heartrate would increase to 120's. It remained like that for about a week. over the course of the next 3-4 weeks I still had that anxiousnedd in my chest. TODAY I feel back to normal. I stopped the celexa right away and am trying to manage my headaches without medicine. My resting heartrate went from 60 to now 80. This appears to be the only lasting effect so far.

I am still bothered by the fact that as fetal and dangerous as this could have been to be and was for others why more people are not made aware of it. hopefely talking about it and sharing our stories can increase the awareness.

Our bodies will tell us when something is not right and we are our own advocate!
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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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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.
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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..
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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?
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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?
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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.
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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
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368886 tn?1466235284
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
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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 !
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368886 tn?1466235284
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

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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!
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368886 tn?1466235284
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
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