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How long have you had POTS?


lalalisa
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I am just wondering how long most of you have been dealing with POTS???

Also, what was the cause of the onset?....I am wondering if the theory is true that a viral onset can mean a shorter timespan with POTS.

Just wondering...

Thanks again!

Lisa

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I've had POTS & NMH (aka NCS) since birth...so that makes 39 years and counting. I've always been heat intolerant. My first faint happened at age 10. The cause is not completely clear, but is believe, in my case, to be related to having Ehlers-Danlos III. Not sure if that completely explains things, because Michelle also has EDSIII and didn't have onset until her 20's.

Nina :)

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I've been diagnosed since about 1 1/2 years ago. Luckily, when this condition became bad, I went to a neurologist who knew what was going on. I do not know if I had a sudden onset from a viral infection, or just a very slow (barely noticeable) deterioration, or episodes that have come and gone with this latest episode staying with me.

I'm still of the opinion that I will be much better as time goes on. Once the doctors get a handle on the potential CAUSES for my current condition, then they will have a better idea what may help. I'm currently in the "let's figure out the potential causes" stage of this problem.

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Guest tearose

I really find it painful to look back sometimes. I can do denial really well. This will be very difficult to share but maybe there is healing that will come from it.

It was after a nine month battle with Lyme Disease that I was left with unilaterial lymphedema and orthostatic intolerance. That was back in 1991. My journey has been long, hard and filled with joys and tears. On my recent visit to Mayo, I was further diagnosed to have the Hyperadrenergic form of POTS due to denervation in my legs and trunk. Unfortunately, I have been developing more symptoms of neurological nature over time, not less.

I have never taken medications of any sort because along with the POTS, I have MVP, a first degree heart block, and the lymphedema. A medication that would help one thing would damage something else. I have learned how to behavior modify every aspect of my life. I had to leave my job to try to find a way to live out my changed life. I'm still working that out. My recent concern is that the disease process I have is progressive.

I feel like I have had every test, seen every doctor and have become a professional patient. I became my own advocate in spite of my health challenges. I know it has been worth the work though because I did select my medical team and have earned the utmost respect of my doctors. I take pride in the fact that I have "fired" a doctor when they did not live up to my standards. I take responsility for educating myself and making my own medical decisions. I hope you will call upon me to share if you have questions.

I've only recently "reached out". I hope that I can share my experiences with others to make it a little less burdensome for them.

tearose

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I was finally diagnosed with POTS about 2 years ago. The first time we remember my going to the doctor for it was when I was in 6th grade. The school nurse saw me in the hall backed up to the wall about to ?fall out? and called my mom and we went straight to the doctor, who at that time told us it was stress? So, I basically lived with the standing dizziness and occasional passing out. I noticed in high school that I would sit up on the couch while watching TV and would comment that my heart rate was very fast and shortly it would go back to around 54. So, I basically just lived with this until my heart rate stayed over 120 for 24 hours, usually after a while it would go back down and the doctor could never ?catch? what was happening. So, I called my doc and he sent me to the ER where they said I was dehydrated, now my friend who was with me laughed and said ?if she?d dehydrated God help the rest of us? Knowing that I drink LOTS of water. My doc showed up and sat me up in the bed to listen and my heart rate jumped from 80-120 and they caught it. They called in the cardiologist on call and he said you have POTS. Now, I did have mono a few years before and believe that it made my symptoms get worse, so am hoping that my symptoms may get some better, but have basically had it since I could remember? Sure hope this helps!!

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I started having mild POTS symptoms in my early 20's. I had a more severe episode of POTS in my late 20's. It wasn't serious enough to make me miss much work, but I felt bad for several months (it wasn't diagnosed). I had a severe episode of POTS associated with pregnancy when I was 34-35. After a year of treatment, I am nearly fully functional (still on the meds) and back at work part-time and caring for my toddler. My POTS doctor told me that POTS onset associated with a virus or other stressful event is likely to resolve much faster than spontaneous onset.

I do continue to have mild symptoms, and from time to time it seems mild relapses (if I get sick or have a medical procedure), but overall, I feel I am recovered to a reasonably well level.

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I was diagnosed with POTS last month. But like many this is probably something I have had for many years.

When I was in my early 20's the doctors noticed that I had "tachycardia on mild excertion." They probably didn't realize how mild -- like standing period. They also diagnosed Hashimoto at that time (autoimmune thyroid disease.) So they chalked my heart rate up to thyroid disorder.

Over the next 20 years I had periods of time (2-4 months) when I couldn't stand at all. Hospital test after hospital test. No one knew what to do. They all said probably viral. Each time I "recovered" and I have remained at work full time (with probably 3 or 4 periods of short term disability when I could not work at all.)

About 6 years ago I had another "episode" and become very ill -- again, couldn't stand up etc. This time (new doctors) they decided I had Epstein Barr Virus. I did have a tilt table test done back then and they said I had "orthostatic hypotension". But no one said anything more about it. I just figured I was wiped out all the time because of Chronic Fatigue Syndrome.

This past August I had my most recent replapse. My doctor had tried everything he knew and we both chaulked it up to Chronic Fatigue Syndrome and figured I'd either get better again ... or not. Who knew.

It wasn't until finding this board last month from an article I had read about CFS and POTS that I began looking closely at my symptoms and my history. A few specialists later and yet another tilt table test the doctors decided I have POTS.

Looking back I wonder if there were things I could have done ... coulda, woulda shoulda. No point in looking back. Just thankful to have found this site.

Good thoughts,

EM

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Everyone has such interesting stories! It's amazing what we've all been through.

My POTS started shortly after an intense mono infection which I still have - it is now Chronic and has lasted close to 2 years. I am unable to work and I'm almost homebound....I am able to run a few errands here and there.

I went from running 3-5 miles/day to limiting myself to one small activity per day such as a quick grocery store trip. It's tough being 24 and feeling 94!

Thanks for all of your responses! Please keep them coming!

Lisa

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i'm not sure how long i've had POTS, as i can remember being mildly symptomatic in high school...but there were years of difference between then and when i got really bad (which was the end of 2002). so, i've had it full blown for over a year now.

so, who knows if it was viral or genetic or what...

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I've had POTS for just over 3 years with VERY many low points and some tolerable periods. According to my most recent autonomic tests my doctors believe that my autonomic nervous system is healing. I had the flu the entire week before I crashed, so the doctors also believe that I had a viral onset.

I am still having some serious problems with throat spasms and swallowing which have seemed to have gotten worse over the last several weeks. I am treating this as a separate problem (and one that I believe may have even contributed to my crashing) and hope to have it resolved ASAP!

Hang in there. There are good days ahead!

-Dan

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I first began having problems with pots at age 23. I swam in a lake that had had a sewage spill and had a bad infection for almost 2 years that went undiagnosed. Finally cleared that up and have worked at supporting my immune system ever since. However, the doc also thinks I have EDS, so I suppose the infection was only a trigger for me. I can remember dizzy feelings all the way back to childhood, but it's been about 7 years since I was diagnosed with pots.

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Hello,

I was finally "officially" diagnosed last February, but have been suffering with this for two years in April.

Looking back now, prior to this I can remember incidents that I think must have been POTS related. From the age of about 14 I had crippling pains in my joints, was very tired all the time, suffered with illness for long periods of time, and was slow to recover from even the smallest cold. For a long time, I think the majority of doctors thought I was a bit of a hypochondriac as nothing could be ever proven to be wrong with me (my doctors notes are immense!) I did eventually see a GP who was convinced that I must have had glandular fever, although this was never proved!

The problems I had, never really affected my life until I started suffering with Syncope and severe palpitations - you could actually see my chest moving violently and I would feel so sick. I seem to remember this happening all very quickly, however for a long while I had lost the appetite to go out, and was increasingly tried - I blamed this on my job, which had changed and was at a higher level ? however I never felt stressed.

To try and cut quite a long story, into not such a long story after several cases of syncope, and two weeks of being unable to move I was finally sent to a neurologist.

The neurologist I saw was convinced I had epilepsy. He sent me for loads of tests, including a tilt test. At the tilt test I met a cardiologist, who was fantastic and lucky for me was investigating POTS. He recognized my symptoms immediately, I passed out within about thirty seconds. I heard him mention to the nurse this thing called POTS. When I finally came round, I was so confused, I remember him telling me I would be just fine, to drink lots and eat loads of salt. He wouldn?t tell me any details, and I never mentioned hearing him saying POTS ? I couldn?t think how this could be right, seemed like a strange name for a medical condition.

I returned to my neurologist, who told me my epilepsy tests were negative. He had not received back my results from the cardiologist, but told me most young women whom had stressful jobs suffered from syncope and that I was stressed. I went home, and cried my eyes out as I felt so unwell, by now I could hardly move, some days I couldn?t make it to the bathroom on my own. My boyfriend remembered the ?pots? comments and called the cardiologist. I was seen the next day and sent to see a professor of neurology. My professor is fantastic. I thank goodness I have private health care, and a wonderful boyfriend.

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