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I don't really know how to word this or if I really understand what I'm trying to ask, BUT here is goes...

I really want to believe that my body will heal

From POTS in time. So therefore I don't want to do anything that will prevent it from fixing itself. Sooo.. I decided to try an wean off my SSRI but my HR shot up to an uncomfortable number so I will try to stay on a low dose for longer. However, by using an SSRI am I preventing my body from

Fixing itsself?

I know there is a lot debate on the cause of POTS but in my heart I don't believe this is a big issue for me. I don't have a family history of anything abnormal, I happened to have two difficult pregnancies back to back and I almost died with each labor/ delivery. So I'm not surprised I have residual issues. Anyway, I just don't want to prevent my body from doing its job.

What do yOu guys think? Am I way off

Lol?

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I felt the exact same way, I rejected the idea of trying BP or HR meds the first time and got well with correcting anemia and Vit D deficiency. This time I used hydrocortisone early on to correct what I thought was adrenal issues....this calmed many symptoms but I plateaued. I kept feeling like my body was attempting to regulate itself. I had days where if I was quiet and meditative enough I felt like my system was searching for it's balance. Except I stayed in that plateau. 6 months after onset (around last month) I began a small dose of midodrine 2.5mg twice a day. This did improve my low BP's and help with my energy level....my other plateaued symptoms seem about the same or maybe a little better - depends on the day you ask me. Today I was nearly symptom free for most of the day so I'm feeling optimistic. When I get a good day then optimism kicks in and takes me a long way....sometimes a big part of the battle. I say to listen very carefully to your body. You could be exactly right. According to some on this forum these symptoms wax and wane when they want to anyway. I believe for some of us our systems still know how to regulate themselves if given time and some of the right support. Not sure that helps at all but wanted to share my thought process on your question. I always have too long of an answer ~ sorry. Good luck to you

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Thanks for replying Relax!

Mind over matter,kinda. I'm glad your having a good moment. Bein optimistic is good for you, definitely. I really hope it's true that our put of balance bodies find their balance.

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I remember asking my dr the same thing with regards to compression hose - if I wore them, would my body not be able to compensate or get better over time? He told me no. And I have to say I now believe him...I still wear hose but I don't HAVE to wear them. What I mean is that I used to have to put them on before I got out of bed and they would be on until I wen tto sleep at night. Now there are days if I'm just around the house I don't wear them and even sometimes if I run errands I don't wear them...I attribute a lot of it to ivig actually. And maybe time...but more the ivig...I guess my point is that I think that you should do whatever you can to make yourself feel better today - and I have had the experience (not just with ivig) of some medication sort of reminding my body how to work then I've been able to get off the drug and my body still worked the right way. So I guess I would say don't suffer horribly if the ssri helps you live better today. Just my two cents on enjoying life the best you can :)

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I can relate to how you feel. I keep thinking that this was some sort of weird phase my body went through as a result of my horrible IBS, and that things will just go back to normal one day. I was hoping I would be one of those cases where the patient recovered. I was wondering how I would know that it is over if I am always taking the med. But I tried weaning off, and the symptoms were back. It is very sad for me to think that I will always be on meds. But right now, I am grateful that meds help me. Reading so many people's stories here make me realize how lucky I am to have figured out what it was so quickly (around 1.5 months of symptoms) and how lucky I am that I tried an SSRI first and that it is working for me. I am grateful to be feeling well and functioning at an almost normal level. I would take feeling well on meds over feeling awful off meds any day.

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Not a stupid question at all.

There are however treatments available that can have dramatic effects on orthostatic intolerance and POTS. I think rather than medications that help slowing down your 'healing' its more likely from my experience that perhaps they help strengthen the body quicker and get it used to normal hemodynamics. They allow you to recondition and learn to trust your body again.

Ofcourse its a personal decision but i cringe when i read about desperately ill people who refuse to try the medications prescribed by their doctor because of fears that they have created from internet research, etc. Not saying that you are like that but just an observation.

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I agree, Rama. I am hoping that the SSRI will "reset" my autonomic system, and my body will get used to it that way and take over on its own.

I know that with my IBS, my gastro maintained that my digestive tract had gotten used to spasming and was continuing that pattern. He felt that we had to get my body used to working at a regular pace and that it would contiue that pattern once it re-learned it. It seems like he was right! I took an anti-spasmotic (that they don't sell in the US) for 6 months and then slowly weaned myself off. In terms of that, I am med-free now.

I am hoping the same idea will work for my POTS.

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it works with other diseases and in my experience also for POTS. The worst POTS ive had and the longest recovery from relapses has been unmedicated in hindsight. if there is help there then its worth pursuing as life is too short to feel terrible if you dont have to.

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Hi, I do not have advice on the actual question of your post and definitely do not think it is a silly question.

I was curious about your statement about the pregnancies, because my last pregnancy/delivery was terrible and I believe is what caused me to become ill. Was your pregnancy the reason you have dysautonomia?

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Misstraci-- I have no idea if my pregnancies actually caused my POTS, I'm just guessing. I have always been normal, healthy, active until I had two 11lbs babies. My first pregnancy I had undiagnosed gestational diabetes, Pre-eclampsia and HELLP syndrome with a 29 hour labor resulting in a crash c/s. my second was unevetful but they almost killed me during the c/s the anesthesia floated up my spine and began to suppress my breathing and heart rate. However, I didn't have symptoms until jan of this year (1year after my second was born, but I was breast feeding through that year which could have help keep my blood volume up) who knows. I also have heard that really emotional situations and stress can cause autonomic dysfunction.. My 10 month old had a seizure and stopped breathing in the car while I was driving :( she had a horrible viral infection and hospitalization that was 2 months before my first pots episode. Very scary to say the least--- it left me with severe health anxiety.

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Mytwogirlsrox- Sounds like a terrible set of circumstances! You've definitely been thru the wringer!

As far as your question, I asked the cardio I saw at CC the same thing. Her response was that in her opinion, I needed the medication to "re-set" the ANS and that once I was "symptom free" for 6 months or so, I could probably wean off meds and be ok. She felt that the meds would help re-train the ANS to work correctly over time. Unfortunately that was 2 years ago and I still haven't been "symptom free" for even a day, let alone 6 months.

I'm glad you're having some success with the SSRI though!

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i dont' think meds interfere with the body's ability to heal at all. i don't agree that meds help "reset the system", but I think they help you get back on your feet faster. you can be closer to living a longer life (and being active just helps POTS). the body may heal itself ovber time. you can then try to wean off meds gradually. it has worked for me,

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Thanks all for the answers!

I'm really hope that it's true meds can reset my system. All I know for now is that it's working, no I just wish my body was working better ha ha ha .

Thanks though for the support and responses

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I think that that the meds and different things I do can interfere with the normal way my body would want to do things at this point. I believe I will get better but at this point my body wants to pass out and doing other things can delay the passing out but not stop it (as of right now) but when it delays it I only feel awful sometimes it is hard to figure out if the awful feeling is worth the couple of extra days of not passing out because of how miserable I feel.

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