Achilles2323 Posted June 4, 2013 Report Share Posted June 4, 2013 How many of you have never found the cause of there POTS ?And how long has it been ?For me 5 months no 1 can tell me what happened :/I know people have been going on longer much longer Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted June 4, 2013 Report Share Posted June 4, 2013 2 years, still looking Quote Link to comment Share on other sites More sharing options...
Achilles2323 Posted June 4, 2013 Author Report Share Posted June 4, 2013 wow and i am frustrated after 5 months =/ Quote Link to comment Share on other sites More sharing options...
looneymom Posted June 4, 2013 Report Share Posted June 4, 2013 With my son, I'm pretty sure it started with a virus. However, the symptoms developed along the way. It was 9 months before, he went totally down and unable to walk. The fatigue and headache came first. He was tested 3 times for mono but it never showed up. He would sleep for 16 hours a day. Quote Link to comment Share on other sites More sharing options...
bebe127 Posted June 4, 2013 Report Share Posted June 4, 2013 4+ years here and nary an answer...I don't even know what type I have and no dr. I have seen will do additional testing for anything or refer me to someone who will. I'd have to go to Mayo or CC and that's just not in the cards at the moment. To this day, I still question if I even have POTS as my original dx. was "probably POTS". Basically, I've been told that I have a chronic illness and I have to learn to live with it.Hope you have better luck, have good doctors and get on the fast track to healing Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted June 4, 2013 Report Share Posted June 4, 2013 10+ years and I don't know. I don't know that you need to know the cause though to get treatment. IMO it is more important to get a correct diagnosis and be under the care of a specialist who will work with you trying different treatments until the best treatment for you is found. Quote Link to comment Share on other sites More sharing options...
lieze Posted June 4, 2013 Report Share Posted June 4, 2013 Looneymom thanks for pointing that out. Mine was with a virus but it came on and symptoms did not peak until much later as you mentioned and then they stayed pretty bad for maybe 6 months or longer before they gradually started letting up,I know I worked here and there about the first year and a half and then was too ill to go in at all the next six months and got the letter that I was being placed on inactive status. I was so sick I was endinng up on the floor at work or having to call the squad to come and get me at work prior to that. Just trying to be up and moving was causing my body to go into horrible crisis.So much of this has just become a blur. For one I am just trying to get through each day and symtpoms have changed over time.I've dealt with different issues also along the way and also living conditions living for 3 separate periods in with parents or in laws,i feel like I lost years of my life and I'm still only operating at a very reduced level. Maybe 20-30% of my normal. Quote Link to comment Share on other sites More sharing options...
julieph85 Posted June 4, 2013 Report Share Posted June 4, 2013 4 years this August. I've heard plenty of theories but no doc can tell me why I'm so sick. I also don't believe I have pots. I think saying you have pots is like saying you have a headache. It is a syndrome which is a collection of symptoms. Not a disease in and of itself. Headaches are a symptom of something else. I'm not I even have pots as so many of my problems don't fit with the typical illness.... It is very frustrating and has stolen my life Quote Link to comment Share on other sites More sharing options...
bebe127 Posted June 4, 2013 Report Share Posted June 4, 2013 Right there with Julieph85... Quote Link to comment Share on other sites More sharing options...
lieze Posted June 4, 2013 Report Share Posted June 4, 2013 I wasn't sure I had POTS either honestly.But I was totally away from this forum and really all POTS "talk".Coming back almost a year later and 3 1/2 years into my symptoms I tend to line up with so much of what you all talk about.The lastest being the cognitive issues I notice and now it looks like my anemia might be related too.So POTS seems to fit until I'm told otherwise.I never had the tilt I was too scared.My heart felt too fragile.I was throwing PVC's like crazy and I waa scared to death I'd die right on the table. Quote Link to comment Share on other sites More sharing options...
Joann Posted June 5, 2013 Report Share Posted June 5, 2013 21 months and I am like julieph85. Not even sure I have pots. My symptoms don't really fit, but then some do. Doctors can't seem to agree either. Told I may have pots, hyperpots, orthostatic intolerance, with additional things they can't figure out.Oh and many of the doctors were trying to push me off to rhumie with fibromialygia. Saw the rhumie yesterday and he said I do not fit that at all. Testing for other things but said I still seem to fit the profile for a pheo tumor or something similar to that. Sigh...I began to have episodes that increased in frequency until I became totally incapacitated with this, after a a stay in the hospital I slowly got a little better and was to the point I thought I was getting a handle on it. This past 2 months I crashed several times and am back to pretty non functioning. No doctors can figure this out. Frustrating and scary. Quote Link to comment Share on other sites More sharing options...
lieze Posted June 5, 2013 Report Share Posted June 5, 2013 Joann what you are describing fits me.And the only reason why I'm saying it is it helps me remember to read what you are writing otherwise it feels like a distant memory of a nightmare.I'm not trying to convince you of anything.It was so crazy in the beginning symptoms were all over the place and intensified until I was on bed rest for about a year.Either it took it's course or it took the just going flat for that long for everything to settle down.My body was just like fireworks going off inside I never knew what was coming next.I had many tests too and they suspected pheo next it was suggested I might have carcenoid syndrome which I just tested negative for about 5 months ago.I also had the unbelievable fear too Joann that you mention in some of your posts and I could not get a handle on it. I felt if someone didn't figure something out and do something I was going to die.If this gives you any hope I obviously didn't.I did start very slowly and gradually having less of the terrifying symptoms. Quote Link to comment Share on other sites More sharing options...
westernmass Posted June 5, 2013 Report Share Posted June 5, 2013 A year and four months at this point. Sudden onset of symptoms (chest pain, presyncope, syncope) followed 6 months later by GI issues and vertigo a bit after. Just diagnosed with fructose malabsorption disorder and SIBO which could explain some of the GI stuff. "Fibro-like" pain... Had a history of that but worse now. Very frustrating. Doctors don't seem to know what to do. Everything a test "reveals" seems like it could be either a symptom or cause of something else, so it's just a mess Quote Link to comment Share on other sites More sharing options...
YolaInBlue Posted June 5, 2013 Report Share Posted June 5, 2013 10 months and I don't know the cause or type of dysautonomia I have. I have been able to eliminate some possible causes (adrenal tumors, pheo; brain, upper neck and spine check) and find medications that help me. I've spent a lot of money and time on doctors. I'm taking a break now and concentrating on finding alternative solutions to help my symptoms. I hope it doesn't get any worse, hopefully gets better and slowly I will find out. Quote Link to comment Share on other sites More sharing options...
k&ajsmom Posted June 6, 2013 Report Share Posted June 6, 2013 Not to be discouraging but ive been "sick" on and off for 28 years and flared severely last october. So this time around ive been seriously looking for 9 months although my testing began when i was 2 years old. One thing ive learned u have to be ur own advocate and somehow balance ur emotional well being, and not be in "search" mode 24/7. Which i know is hard when all we want to do is feel normal...=/Hang in there =) Quote Link to comment Share on other sites More sharing options...
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