erikainorlando Posted August 2, 2009 Report Share Posted August 2, 2009 I have read a lot about the unpredictabiltiy of the symptoms of POTS.. I just don't have tht kind of unpredictabiltiy. Everyday I struggle...I can get up and get going for a short period of time...then I have to recline for several hours. It is always this way!! Nothing unpredictable. Somedays I have diahrea (most) but other than that no unprectability. I get "sick" periods everyday. It is always related to how long I have been up and how much activity I have done. Don't get me wrong...sommedays are a little better than others but for the most part it is pretty consistent. I got POTS 10 months ago after a virus...and I can't really tell if I am any better...although my symptoms are better with toprol.Am I alone? Thanks,Erikka Quote Link to comment Share on other sites More sharing options...
janiedelite Posted August 2, 2009 Report Share Posted August 2, 2009 Mayo said that the mono I had in 6/06 is what caused my POTS. I had a gradual decline over a couple years following mono during which I was in a bar car accident and had 2 hip surgeries. It seems like the research says most post-viral cases don't have a gradual worsening of symptoms but I have had this. Then I got really sick from POTS from 6/08 to 1/09. I went to Mayo in 2/09 and have since started the usual helps (compression, lots of salt and fluids, mild exercise, etc). I definitely go through worse phases now that can last for hours or weeks, but I can usually figure out the cause. This year allergies have played a big part, and I'm beginning to discover my limits regarding stress and activity too. In a way, now it feels like my POTS is a little more predictable because I have lowered my expectations for activity (not working, rarely run errands alone, not many social activities). So I can't tell if my POTS is more predictable now, or if I'm just not asking too much of my body anymore. Also, I've learned how to aggressively cool off and re-hydrate wherever I may be. So I may be getting more stable, or I'm just learning better how to compensate for the ups and downs. Honestly, I'm also forgetting what it's like to feel "normal." I was at a BBQ yesterday watching folks standing in the 90 degree sun for minutes on end... I caught myself thinking "What if they get overheated? How can they stand so long? How can they talk and not be short of breath?" Then I remember that 4 years ago I used to be able to do all those things, too!!!! Quote Link to comment Share on other sites More sharing options...
Rachel Posted August 2, 2009 Report Share Posted August 2, 2009 My symptoms are usually predictable. As long as I sleep well and pace myself well, I can almost always predict what the day or week will be like for me physically. I will crash if I ever overdo it, if I haven't gotten enough sleep, if there have been too many noises, it is too warm, etc. Even those crashes are predictable, though, in that I know pushing it is going to cost me, what the lace of sleep will likely cost me, etc.Occasionally I do have unpredictable crashes or a long-term worsening in symptoms. But in general, now that I have learned how to pace myself and notice the subtle hints from my body to slow down, my daily symptoms are not unpredictable.Rachel Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted August 3, 2009 Report Share Posted August 3, 2009 I think the waxing waning presentation is fairly common but not always the case. Id think that a sudden onset like mine would predispose me to my waxing and waning presentation - i have periods of nearly no symptoms - other periods of severe symptoms. Mono probably caused your POTS Thankful but its too early to definitively demonstrate that. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted August 3, 2009 Report Share Posted August 3, 2009 How can they tell definitely that your POTS is caused to a virus? I moved to Arizona 5 years ago, and became sick within 4-5 months of living here. They think my POTS is due to picking up Valley Fever, which is pretty common in this area. It always sounded to me that if they couldn't pinpoint a particular reason, they dumped it into the 'virus' / idiopathic bin.Thanks,Jana Quote Link to comment Share on other sites More sharing options...
erikainorlando Posted August 3, 2009 Author Report Share Posted August 3, 2009 Boy - after posting that...I have had such a bad day.....I have been really off the chart over here today...worse than my norm...predictable self. Anyway...Jan, I had a virus in Sept. and never got right after that. Felt wierd and off. Periods after any activity of being "so ill". Had to lay down. It took 4 months before anyone really got that it was my hr because they only took my hr sitting (which ...by the wasy was still pretty high). However, you bring up an interesting point..as I think back to a stress test in December. My hr reached the "limit" fairly quickly but honestly in March I had a TTT done and my hr went from 85 to 150 within seconds. So...I think I do wonder why I was able to pass the stress test...can it be that I did have POTS symptoms but it got worse with time? My real inability to stand at all...and function in anyway considered normal started in late Dec. BUT I never felt right after the virus....does that in any way sound like you? Thanks....Erika Quote Link to comment Share on other sites More sharing options...
Broken_Shell Posted August 4, 2009 Report Share Posted August 4, 2009 Hi Erika,I had a "virus" 7 years ago that preceded my dysautonomia. It was about 6 weeks of fatigue and swollen glands in my neck, but I never fully recovered and felt "right" afterwards. Since then, I have become gradually more and more disabled by symptoms, to the point that I am now. I would estimate that I function at about 25% of a "normal" level if even that - I had to leave graduate school 2 years ago, and am now unable to care for myself on a daily basis. I am glad you posted though because I have been wondering the same thing... my days are bad and worse. I wish I were exaggerating. I have maybe about 1 hour total cumulative time each day that I can minimally function, and any time I attempt to do something I can do it for maybe 5 minutes max before the dizziness and other symptoms require me to stop. These days, I fight to brush my teeth and wash dishes 2 minutes at a time without having to kneel on the floor. Someone has to pretty much be with me at all times. I am actually looking into home care beginning in the Fall when my caregivers, who are teachers, go back to work full-time. Like you, my small periods of minimal "improvement" are sporatic and my variable symptoms fluctuate throughout the day for no reason, although I tend to be the worst in the mid-morning. I also have hypoglycemia and myofascial pain that complicate my days, but I have yet to really see any improvement or stability in my condition since developing dysautonomia. I hope that your rough day has improved some. Hang in there! Feel free to PM me if you need a shoulder ~ Broken_Shell Quote Link to comment Share on other sites More sharing options...
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