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ElenaF: Introduction


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Hey everyone,

I am at a loss for words sometimes but I am really struggling. I have seen a very prominent neurologist that is kind and is trying to help me but I understand I have a very difficult situation. I know I have a great deal of anxiety and stress and this is making things much more difficult. I wanted to ask in this group because you come from so many backgrounds of drug induced and genetic and secondary illnesses on your thoughts.

About 8 weeks ago I took a single 30 mg dose of cymbalta. I took it because I had pelvic floor dysfunction and was in a lot of pain. Nobody in the world could ever imagine what happened next. As soon as I took it I felt terribly sick. I felt burning and exhaustion so severe I could only lay in bed. I tried sleeping and could not do it no matter how I tried. I felt restless and tired and so anxious. I could not do anything.  I started noticing strange sensory sensations all over my body and neck and scalp and restless body feelings in my legs and neck when laying down. I was shocked that my pelvic symptoms had passed! 

After three days I went to the hospital and the Hospital found absolutely nothing wrong with me. 

After another 4 weeks of no sleep and strange trouble with constipation and weakness I read about akathesia and thought maybe this was it? I took propranolol and fell asleep immediately. I thought maybe my problems were over. I thought that it was scary that I could now sleep after 4 weeks of trying every supplement but propranolol worked. I was so happy  that maybe this would be it. 

Suddenly I started having this feeling of severe neck pulling. Like I could not do anything due to the discomfort but I noticed holding my head with my hand calmed it. It scared me that I read that this is a sensory trick. I also felt intermediate spasms in the corner of my eye and my calves and feet felt like they had strange sensations of outer pressure and random internal tremors. I woke one night with strange inability to see in the one eye and it passed in an hr. 

I saw a very prominent neurologist that had multiple awards that said none of this lined up with Dystonia and that it would pass. I agreed that this sudden onset and strange timeline was strange and was very excited and hopeful that he was right. 

Shortly after seeing him the neck spasms continued but they were not the fast jerking motions I see with Dystonia here. They just felt like I needed to move my head because the pulling was so uncomfortable. It was also random and could sometimes pull in different directions and then improve or disappear. 

After about 3 weeks of that I decided that until things became more clear I would need to tough it out. Clearly my neuro and family were not sure what was happening and could not help me until it became more clear. I bought a chair with a headrest and thought that with time maybe things would either improve or get worse but I would get help.

Well, then the next symptoms hit that really terrified me. Suddenly I had trouble swallowing one night that made it feel like I was chocking but it passed and then it’s been on and off for days. Then I was going for a massage and suddenly I felt like I could not breath. My nose was allowing air in but it felt like It was not enough and my ribs felt little spasms and like a belt was around them. I thought I was dying but found that I could not go to the hospital again due to their telling me I have a psychosomatic illness. My neuro told me unfortunately it’s uncomfortable but not deadly. I read on a pulse oxometer that my levels drop to 91 when I don’t breath in a heightened state. I could not sleep so I tried benedryl and it seemed to help. Once again I wonder is that a coincidence or is it because benedryl can help with Dystonia.

The worst part of this is I have a family that believes that it’s all psychological and I understand that I would too because I look completely normal. My symptoms keep changing and one day I’m eating ok or now my breathing is a little better. All they see is a person crying and ranting about this terrible illness with no proof and going from doctor to doctor. I am close to losing my husband and my Job.

I got a prescription from the neurologist for klonopin by my own asking thinking it was the only way to see if this is psychological but then read klonopin can make breathing harder and is only intended for 2-4 weeks and can mask symptoms but often makes them worse when I stop. I am scared to make things worse as there is clearly no help for me.

I see a movement specialist in 2 weeks but am not sure he will see or help anything either and I am scared of the side effects of any drugs making this worse too as the drug induced people seem to not benefit from much 😞 

Please any advice on family, doctors, treatment....

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  • manymoretodays changed the title to ElenaF: Introduction
  • Administrator

Welcome, @ElenaF


I am sorry you're experiencing this. We have a small group of people here who had fairly immediate severe adverse reactions to an antidepressant. You seem to be in that group. See Adverse reations to an antidepressant within a few doses -- how long for recovery?


Like withdrawal symptoms, these severe adverse reactions seem to very gradually go away over some number of months. It sounds like you have seen some improvement already.


You will need to focus on making yourself as comfortable as possible and supporting healing by taking care of your general health. You may wish to try non-drug therapies such as acupuncture, massage, or osteopathic manual therapy for the body pain.


Many people find these to be helpful:


Magnesium, nature's calcium channel blocker 


Omega-3 fatty acids (fish oil) 


You might try a low dose of one at a time to see what it does for you.


Please let us know how you're doing.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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Thank you for the follow up and scary new symptoms started a week ago that are very difficult. Having a breathless feeling and racing heart when trying to walk around.

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@ElenaF I just read your introduction, and I am really sorry you have to go through all of that.

On the other side, you seem so proactive when it comes to taking care of yourself and trying to find best care possible. That is very encouraging... we need to “fight” for our wellbeing.

Unfortunately, so many of us here were not aware how these antidepressant medications can affect us. But we are here trying to support each other and learn how to cope with withdrawal and adverse reaction symptoms. 

I really hope things go better for you soon☀️

July 19th 2017—July 2018: 10 mg Escitalopram

August 2018— June 2020: 5 mg Escitalopram


Tapering started: June 2020—1st of August. Lowest dose was 5 mg (5 mg every second day for a couple of weeks, then 5 mg twice a week for a couple of weeks, and lastly 5 mg once a week until I stopped)


Drug free: August 1st, 2020


Supplements: Magnesium citrate 2x200 mg and Omega3 – 2x1000 mg.

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