Has anyone had serotonin syndrome? Treatment and outcome?

Posted by WILKINS905 @wilkins905, Jul 22, 2012

Has anyone been thru an experince with this from a bad mix of drugs and if so what was the final outcome and what type of treatment was given

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

Profile picture for cathy~ @cathyh

This is my third time of going through this horrible syndrome. I have multiple docs and meds and once again one prescribed something (over the counter) that has made me sick for over two weeks. The latest one was a doc suggested I take some cough medicine after I had sent him a message on his portal. He had a list of my meds, but still told me to take this one, MucinexDM, that put me over the top. I am not the doctor or pharmacist. Why can't they get this right? I am upset he did this. I am physically and mentally miserable! Has anyone here got any suggestions in dealing with multiple docs and meds to prevent this?

Jump to this post

The DM part of the Mucinex did it more than likely.(plain Mucinex might be a better idea?) tramadol with antidepressants can trigger SS. I would look for a psychiatrist Joni’s well versed in interactions of your needs. I took a med that was given to me by the same doc who RX the other med it interacted with. Self advocacy is frowned on but I looked it up myself and bingo that is what made me sicker. Lots of websites have medicine interactions posted and what the effects are

REPLY
Profile picture for cathy~ @cathyh

This is my third time of going through this horrible syndrome. I have multiple docs and meds and once again one prescribed something (over the counter) that has made me sick for over two weeks. The latest one was a doc suggested I take some cough medicine after I had sent him a message on his portal. He had a list of my meds, but still told me to take this one, MucinexDM, that put me over the top. I am not the doctor or pharmacist. Why can't they get this right? I am upset he did this. I am physically and mentally miserable! Has anyone here got any suggestions in dealing with multiple docs and meds to prevent this?

Jump to this post

Just a different perspective here. I took 40 mgs. Paxil daily for over 25 years. I took many OTC cough syrups, etc. over the years and never experienced serotonin syndrome. No one ever warned me of this, I just recently became aware that this could even happen.

REPLY
Profile picture for cathy~ @cathyh

This is my third time of going through this horrible syndrome. I have multiple docs and meds and once again one prescribed something (over the counter) that has made me sick for over two weeks. The latest one was a doc suggested I take some cough medicine after I had sent him a message on his portal. He had a list of my meds, but still told me to take this one, MucinexDM, that put me over the top. I am not the doctor or pharmacist. Why can't they get this right? I am upset he did this. I am physically and mentally miserable! Has anyone here got any suggestions in dealing with multiple docs and meds to prevent this?

Jump to this post

I am 70 and have been taking Celexa 40mg and Klonopin 3mg for 12 years. About 6 months ago I started getting headaches. They continued to spread and now whenever I fall asleep my feet/ankles, abdomen, and sinuses are burning at pain level of 9. I might not be metabolizing the drugs as well as I have aged.? I was so desperate that I checked into nearby hospital. They prescribed Gabapentin 900 mg daily. That was about 1 week ago. I have very little relief yet, does this take longer to work? Is it possible that I have mild serotonin syndrome that is causing this neuropathy?

REPLY
Profile picture for pacodennis @pacodennis

I am 70 and have been taking Celexa 40mg and Klonopin 3mg for 12 years. About 6 months ago I started getting headaches. They continued to spread and now whenever I fall asleep my feet/ankles, abdomen, and sinuses are burning at pain level of 9. I might not be metabolizing the drugs as well as I have aged.? I was so desperate that I checked into nearby hospital. They prescribed Gabapentin 900 mg daily. That was about 1 week ago. I have very little relief yet, does this take longer to work? Is it possible that I have mild serotonin syndrome that is causing this neuropathy?

Jump to this post

Hello @pacodennis. Gabapentin can take up to 2-4 weeks before you feel pain relief so it may just need some more time.

Here is some information that may be helpful to you as you explore your symptoms that you think could potentially be serotonin syndrome.

- Serotonin syndrome - Symptoms and causes: https://www.mayoclinic.org/diseases-conditions/serotonin-syndrome/symptoms-causes/syc-20354758

After you read the information, I'd be curious if you'd like to share what you feel aligns with what you are experiencing.

REPLY
Profile picture for Amanda Roe @amandajro

Hello @pacodennis. Gabapentin can take up to 2-4 weeks before you feel pain relief so it may just need some more time.

Here is some information that may be helpful to you as you explore your symptoms that you think could potentially be serotonin syndrome.

- Serotonin syndrome - Symptoms and causes: https://www.mayoclinic.org/diseases-conditions/serotonin-syndrome/symptoms-causes/syc-20354758

After you read the information, I'd be curious if you'd like to share what you feel aligns with what you are experiencing.

Jump to this post

Hi Amanda,
I have been on Gabapentin for 9 days, so I am waiting to see if it works. In the mean time I have to learn more about what is happening to me and how to cope with it. This forum is great...i am so glad I found you.
I have been taking Citalopram 40mg, and Clonazepam 2mg for 12 years. I am 70 years old. I think that my metabolism is not processing the drugs efficiently any more. I developed IBS 10 years ago and started using Medical Marijuana to help relieve some symptoms. About 6 months ago I started having headaches. which spread to my sinuses, and then to my abdomen and feet/ankles. As this progressed I increased the amount of THC to releave the pain. I am thinking that the combination of Psych. meds plus the THC caused this peripheral neuropathy.
As I read the symptoms for seratonin syndrome there was no mention of painful burning extremities ( especially while asleep ). So I am not as sure and almost can rule it out...but it still could be involved in how effective my liver is functioning. In the hospital my main Doc said they wanted to make sure my liver was processing it all. The blood tests said that is was doing ok, could be a little better. So, I really have to wait to see a specialist, which looks like a couple months away right now. They didn't seem to think the THC was the problem...but I am not sure. Thank you!

REPLY
Profile picture for cathy~ @cathyh

This is my third time of going through this horrible syndrome. I have multiple docs and meds and once again one prescribed something (over the counter) that has made me sick for over two weeks. The latest one was a doc suggested I take some cough medicine after I had sent him a message on his portal. He had a list of my meds, but still told me to take this one, MucinexDM, that put me over the top. I am not the doctor or pharmacist. Why can't they get this right? I am upset he did this. I am physically and mentally miserable! Has anyone here got any suggestions in dealing with multiple docs and meds to prevent this?

Jump to this post

A few weeks ago I began feeling weird. It didn’t go away, it got worse. Dizziness, nausea, vomiting, diarrhea, sharp stomach pain, restlessness, clumsiness, confusion, this weird feeling of being cold but having flashes of full body sweats & no fever & extreme fatigue but struggling to sleep were my primary symptoms. It started gradually but increased rapidly and I did a deep dive into my symptoms and my meds. I SHOULD HAVE CALLED A DOCTOR OR GONE TO THE ER/URGENT CARE RIGHT AWAY. It was the weekend, I didn’t want to be a burden, couldn’t drive & definitely didn’t want an ambulance. I tried one of those online doctor visits but it was a scam. THIS WAS INCREDIBLY STUPID ON MY PART.
My psychiatrist had weaned me off Pristiq and onto Trintellix in November (after a round of ECT) and I felt great! In January my insurance stopped covering Trintellix (which is exorbitantly expensive) and while I worked on acquiring coverage, I went back on Pristiq and decided to up my dosage (w/o telling doctor) because I thought that would help mimic Trintellix (dumbass). In March, I went back on Trintellix and started weaning off Pristiq. This is when everything went wrong. I was taking 20mg Trintellix + 100mg Pristiq + 450mg Wellbutrin + 300mg Trazodone + my other common meds. Sounds a little toxic, don’t ya think? I gave myself Serotonin Syndrome.
I immediately stopped all anti-depressants and upped my water intake. On the 2nd day I felt better, 4th day much better & even though I started having withdrawals I waited until the 7th day to take Trintellix, then slowly added Wellbutrin & Trazodone. I feel so much better. My doctor’s more than a bit cranky with me.
Moral of the story? YOU ARE NOT A PHARMACIST OR DOCTOR OR SMART ENOUGH TO CHANGE YOUR MEDS because Serotonin Syndrome is deadly. Please be smarter me.

REPLY
Profile picture for Brewnews @brewnews

A few weeks ago I began feeling weird. It didn’t go away, it got worse. Dizziness, nausea, vomiting, diarrhea, sharp stomach pain, restlessness, clumsiness, confusion, this weird feeling of being cold but having flashes of full body sweats & no fever & extreme fatigue but struggling to sleep were my primary symptoms. It started gradually but increased rapidly and I did a deep dive into my symptoms and my meds. I SHOULD HAVE CALLED A DOCTOR OR GONE TO THE ER/URGENT CARE RIGHT AWAY. It was the weekend, I didn’t want to be a burden, couldn’t drive & definitely didn’t want an ambulance. I tried one of those online doctor visits but it was a scam. THIS WAS INCREDIBLY STUPID ON MY PART.
My psychiatrist had weaned me off Pristiq and onto Trintellix in November (after a round of ECT) and I felt great! In January my insurance stopped covering Trintellix (which is exorbitantly expensive) and while I worked on acquiring coverage, I went back on Pristiq and decided to up my dosage (w/o telling doctor) because I thought that would help mimic Trintellix (dumbass). In March, I went back on Trintellix and started weaning off Pristiq. This is when everything went wrong. I was taking 20mg Trintellix + 100mg Pristiq + 450mg Wellbutrin + 300mg Trazodone + my other common meds. Sounds a little toxic, don’t ya think? I gave myself Serotonin Syndrome.
I immediately stopped all anti-depressants and upped my water intake. On the 2nd day I felt better, 4th day much better & even though I started having withdrawals I waited until the 7th day to take Trintellix, then slowly added Wellbutrin & Trazodone. I feel so much better. My doctor’s more than a bit cranky with me.
Moral of the story? YOU ARE NOT A PHARMACIST OR DOCTOR OR SMART ENOUGH TO CHANGE YOUR MEDS because Serotonin Syndrome is deadly. Please be smarter me.

Jump to this post

I too have had serotonin syndrome and it is scary. Mine is a similar story but different details from "brewnews" above. My seratonin overdose was caused by a supplement called SAMe.

Folks, be careful. I suggest making changes to your meds gradually, and with a doctor's approval. Journal the changes, and watch for signs of improvement or symptoms of problems.

Also, make one med change at a time if possible. In other words, don't try three new things all at once - then you won't be sure what's working or what's causing problems. Be aware that serotonin syndrome and other problems can take weeks to present as the buildup on your system becomes toxic. That's where the journal comes in - so you can see "what's changed" on a timeline.

Remember that vitamins, herbals and supplements are meds too, so include them in your journal along with prescription meds.

REPLY
Profile picture for johneckenrode11 @johneckenrode11

I too have had serotonin syndrome and it is scary. Mine is a similar story but different details from "brewnews" above. My seratonin overdose was caused by a supplement called SAMe.

Folks, be careful. I suggest making changes to your meds gradually, and with a doctor's approval. Journal the changes, and watch for signs of improvement or symptoms of problems.

Also, make one med change at a time if possible. In other words, don't try three new things all at once - then you won't be sure what's working or what's causing problems. Be aware that serotonin syndrome and other problems can take weeks to present as the buildup on your system becomes toxic. That's where the journal comes in - so you can see "what's changed" on a timeline.

Remember that vitamins, herbals and supplements are meds too, so include them in your journal along with prescription meds.

Jump to this post

I could not have said this any better. I learned long ago that I had no idea if a prescribed med was helping or not. The journal is an excellent idea. It does have to be a formal journal. Just a spiral notebook will work fine. The entries can be one sentence or many. Take that to the doctor visit so you can describe in your words , how a med made you feel. I sometimes forgot what I wanted to tell a doctor, so I kept notes before the visit. Then I wrote what the doctor said after i talked with him. This helped me greatly.
Only one medicine change, or supplement added, for one month's time works for me.

REPLY
Profile picture for Brewnews @brewnews

A few weeks ago I began feeling weird. It didn’t go away, it got worse. Dizziness, nausea, vomiting, diarrhea, sharp stomach pain, restlessness, clumsiness, confusion, this weird feeling of being cold but having flashes of full body sweats & no fever & extreme fatigue but struggling to sleep were my primary symptoms. It started gradually but increased rapidly and I did a deep dive into my symptoms and my meds. I SHOULD HAVE CALLED A DOCTOR OR GONE TO THE ER/URGENT CARE RIGHT AWAY. It was the weekend, I didn’t want to be a burden, couldn’t drive & definitely didn’t want an ambulance. I tried one of those online doctor visits but it was a scam. THIS WAS INCREDIBLY STUPID ON MY PART.
My psychiatrist had weaned me off Pristiq and onto Trintellix in November (after a round of ECT) and I felt great! In January my insurance stopped covering Trintellix (which is exorbitantly expensive) and while I worked on acquiring coverage, I went back on Pristiq and decided to up my dosage (w/o telling doctor) because I thought that would help mimic Trintellix (dumbass). In March, I went back on Trintellix and started weaning off Pristiq. This is when everything went wrong. I was taking 20mg Trintellix + 100mg Pristiq + 450mg Wellbutrin + 300mg Trazodone + my other common meds. Sounds a little toxic, don’t ya think? I gave myself Serotonin Syndrome.
I immediately stopped all anti-depressants and upped my water intake. On the 2nd day I felt better, 4th day much better & even though I started having withdrawals I waited until the 7th day to take Trintellix, then slowly added Wellbutrin & Trazodone. I feel so much better. My doctor’s more than a bit cranky with me.
Moral of the story? YOU ARE NOT A PHARMACIST OR DOCTOR OR SMART ENOUGH TO CHANGE YOUR MEDS because Serotonin Syndrome is deadly. Please be smarter me.

Jump to this post

I am correcting myself! I meant it does NOT have to be a formal journal. Writing a daily line or two in a spiral notebook, helped me realize if a new medicine or vitamin/ supplement, helped me or not. And I change only one thing at a time, giving it at least 4 weeks to see if it is helping me or not. In other support groups, like on Facebook, I read people saying " I started an antidepressant and it didn't help me at all". They had only taken it two days!
Or they wrote "I took so and so yesterday and today I am flipping out and having terrible symptoms". Unless we are truly allergic to a medicine, I do not believe it happens that fast. I have spent two decades reading and trying to understand my diseases. it helps me to learn all I can.

REPLY
Profile picture for Brewnews @brewnews

A few weeks ago I began feeling weird. It didn’t go away, it got worse. Dizziness, nausea, vomiting, diarrhea, sharp stomach pain, restlessness, clumsiness, confusion, this weird feeling of being cold but having flashes of full body sweats & no fever & extreme fatigue but struggling to sleep were my primary symptoms. It started gradually but increased rapidly and I did a deep dive into my symptoms and my meds. I SHOULD HAVE CALLED A DOCTOR OR GONE TO THE ER/URGENT CARE RIGHT AWAY. It was the weekend, I didn’t want to be a burden, couldn’t drive & definitely didn’t want an ambulance. I tried one of those online doctor visits but it was a scam. THIS WAS INCREDIBLY STUPID ON MY PART.
My psychiatrist had weaned me off Pristiq and onto Trintellix in November (after a round of ECT) and I felt great! In January my insurance stopped covering Trintellix (which is exorbitantly expensive) and while I worked on acquiring coverage, I went back on Pristiq and decided to up my dosage (w/o telling doctor) because I thought that would help mimic Trintellix (dumbass). In March, I went back on Trintellix and started weaning off Pristiq. This is when everything went wrong. I was taking 20mg Trintellix + 100mg Pristiq + 450mg Wellbutrin + 300mg Trazodone + my other common meds. Sounds a little toxic, don’t ya think? I gave myself Serotonin Syndrome.
I immediately stopped all anti-depressants and upped my water intake. On the 2nd day I felt better, 4th day much better & even though I started having withdrawals I waited until the 7th day to take Trintellix, then slowly added Wellbutrin & Trazodone. I feel so much better. My doctor’s more than a bit cranky with me.
Moral of the story? YOU ARE NOT A PHARMACIST OR DOCTOR OR SMART ENOUGH TO CHANGE YOUR MEDS because Serotonin Syndrome is deadly. Please be smarter me.

Jump to this post

Hello. Did you develop a rash with serotonin syndrome?

REPLY
Please sign in or register to post a reply.