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Serotonin syndrome or serotonin toxicity experiences...

MakeTheWorldABetterPlace
Community Member
Hi everyone, I was interested to hear people's experiences with the serotonin syndrome. It is potentially fatal. It takes different forms and can differ in the degree of severity. Sometimes it has psychotic features, other times it doesn't. This is apparently rare. But I think it is more accurate to say that it is rarely diagnosed.
For me, I've had two episodes of the serotonin syndrome in three months. For me, it had psychotic features (e.g. auditory hallucinations). It is incredibly disempowering to have this occur. When you know you are experiencing the serotonin syndrome, especially when there are psychotic features. This is because your claims are discounted by nurses and psychiatrists, at least by those that don't know you well, as claims of a psychotic person lacking insight. Even for me, a person with a PhD in economics, with access to peer-reviewed journal articles pay-walled to most other people, I struggled to be taken seriously by those who didn't really know me. I finally had to take things into my own hands to improve my situation. I can only imagine how daunting and frustrating this would be for others. I'm not alone in my experience. I know of at least one person in the US that has written about this, although not a medical doctor herself, she is medically trained in neuroscience as a researcher. She identified this in her mother. However, as was my experience too, her claims were not believed. Unfortunately for her, her mother passed away as a result.
My recent experiences and my heightened risk of further experiences means that this is something I'm very passionate about making sure others don't also have to suffer through. My psychiatrist apologised, still, it would have been good to avoid this entirely.
I'm keen to hear others' experiences, as I said I think this is actually quite common. People have become more informed over time in terms of formal education, access to the Internet, access to peer-reviewed research. They may very well know that they have experienced the serotonin syndrome, although it was left not diagnosed.
I really think that there needs to be a risk assessment tool developed for people to better identify cases of the serotonin syndrome and to ultimately improve outcomes. I still have some lingering and possibly permanent damage from my experiences. An instrument that is quick to implement like the K10 or the DASS21 would be good to see developed and used.
Please share your experiences and thoughts.
8 Replies 8

blondguy
Champion Alumni
Champion Alumni

Hi Make The World a Better Place

Thankyou for your post on serotonin syndrome. You have done some serious research into this!

I used to be very anti-meds until 24 years ago when I was prescribed AD's for acute anxiety that was exacerbating. Just for my own situation the AD's worked so well. My anxiety reduced by approx 70%

Its always a bonus to read any additional information that is provided. People may be hesitant about taking meds (as I was) yet the benefits can be invaluable where recovery is concerned

Great to have you on the forums MTWABP

my kind thoughts

Paul

Croix
Community Champion
Community Champion

Dear MakeTheWorldABetterPlace~

I'm afraid I can't give any constructive answers to your request, however this syndrome has been mentioned in the Forum before. May I suggest you Google:

serotonin syndrome beyondblue forum

And sort thought the hits , there are at least half a dozen.

Your description of your own reactions may well be help to other readers already.

Croix

Croix
Community Champion
Community Champion

P.S. I forgot (sigh)

You can also try:

https://www.beyondblue.org.au/get-support/online-forums/treatments-health-professionals-and-therapies/ask-nurse-jenn---our-resident-mental-health-nurse#qsNE-nHzvGGEbv8AAOnT_A

-C

Jessten
Community Member

Hi

I haven't done research into the syndrome but I have experienced it myself. For me when I had serotonin syndrome I personally couldn't stop shaking, I felt my heart racing, my muscles tensed up and I felt sick. My gp never told me about the interaction between my meds and it wasn't until I sought advice from chemist that I'd heard of the syndrome. At the er I.was questioned over why I took them together and lectured about it as they didn't know what to do. Luckily I didn't have psychosis symptoms

Hi MakeTheWorldABetterPlace

Hi Jessten....Some people do experience the same symptoms as you even without taking a Serotonin based Antidepressant...The shaking...the racing heart...tense muscles are all classic signs of anxiety when our adrenaline is in excess....(as a result of the anxiety/depression condition itself)

Psychosis symptoms are extremely rare where AD's are concerned. This is my 24th year on AD's and never encountered one person that has experienced psychosis

Croix provided an excellent copy & paste link that should be noted as speculation re/ serotonin syndrome should be left to a health professional as the many people have found SSRI's a major route to their recovery

www.beyondblue.org.au/get-support/online-forums/treatments-health-professionals-and-therapies/ask-nurse-jenn---our-resident-mental-health-nurse

my kind thoughts

Paul

Doolhof
Champion Alumni
Champion Alumni

Hi Make the World a Better Place, Jessten, Paul, Croix and All ,

I experienced SerotoninSyndrome and was hospitalised for a week while the Drs tried to sort out what was happening.

I actually blacked out, had a blood pressure of 220/110 and was taken to hospital via ambulance. I had the shakes, was very unbalanced and un-co-ordinated for days, headaches and nausea.

My body does not tolerate some medications and certainly not combinations of medication.

I am presently in the dilemma of my new medication causing heart palpitations and high blood pressure. The high blood pressure medication has problems of its own! Without medication I tend to become suicidal.

For the majority of people medication does not cause any ill effect. It is important to let your Dr know exactly what is happening for you and seek help if required.

Write down symptoms and when they occur for a more accurate diagnosis.

The Drs try their best to assist us, as individuals our bodies cope differently. The Drs can't predict how people will respond.

Cheers all from Dools

Jessten
Community Member

Hi blondeguy

thanks for your response and I respect your opinion. I'm not against meds at all and am aware that everyone's symptoms are different I was just stating that in my situation it happened to be caused by a combination as I only heard of serotonin syndrome at the chemist then the er when they did blood test.

Nurse_Jenn
Community Member

Hi there,

This is a really interesting and important thread and I am glad you have raised it MakeTheWorldABetterPlace.

I have had some experience with Serotonin Syndrome in my clinical experience. Awareness of this syndrome is important when changing or adding some medications. The reason why many people are unfamiliar with the condition it is that it is uncommon and also difficult to diagnose as sometimes symptoms are mild.

I have attached a patient information sheet for people to review that is from the New Zealand Medication Safety Authority. I could not find one from Australia that was in plain speak and as are all research based. This brief information sheet is for anyone reading this thread who wants a simple explanation of Serotonin Syndrome.

Serotonin Syndrome is not common but if you are concerned about Serotonin Syndrome you should bring it up with your prescribing Doctor.

https://www.medsafe.govt.nz/consumers/educational-material/Serotonin%20Syndrome%20December%202015.pdf

If you are experiencing side effects that are causing you distress you should visit your GP, or contact Health Direct 1800 022 222 or you can visit your local Emergency Department.

If you are experiencing symptoms that are critical or life threatening call 000

It is really great to see so many people sharing their difficult experiences on the forum as it brings out this important topic to so many others.

Having an awareness of the side effects medication can bring is important when you are prescribed a new or additional medication. All people interact differently to medication based on individual body chemistry. If you are not in a good place to hear about side effects when being prescribed medication, get a medication safety sheet from you doctor or pharmacist and take it with you so you can review it another time or give it to a family member or someone you trust.

Wishing you the best possible outcome,

Nurse Jenn