Is This Really Going To Go Away?

[appaloosatb]

My doctor keeps telling me that POTS is just a temporary ailment and that it should go away on its own eventually, but it seems most people here have had problems for a long time. It it true that POTS can just disappear like it appeared, or am I stuck with this for life? I just read through the literature I got at the Mayo Clinic, and it seems to contradict itself. In one place it says that for most people the symptoms do go away with time, but then the two personal stories make this sound like a more chronic condition.

My doctor also seems to think that if I can just exercise enough my symptoms will go away, but I'm so frustrated by exercising. I walk my dog daily, probably 1/4-1 mile depending on how I'm feeling. I used to bike with her too but now I don't dare. I was told to work on strengthening my abs, but I'm frustrated with that as well. I can only do 1-2 push ups. I can do about 20-25 sit ups, but then I faint. Even if I stop early (after 15, say), I feel horrible the rest of the day and oftentimes the next day.

[spaceorca]

The medical literature shows that the disease does sometimes go away--sometimes patients with really horrible symptoms will get entirely better. On the other hand, the disease persists in some patients. No one really seems to know why, and it's hard to know what the relative percentages are--although, as I read the literature, a majority of patients do improve. It makes sense that patients who have had the disease for a longer period would participate, and remain in, a forum like this one. So the majority of patients here may suffer from a chronic form of the disease, even if the majority in the world more generally get better.

As I've see it, based on my son's experience, the important things to remember are (1) this *is* a serious disease no longer how long you end up having it--don't let other people trivialize your symptoms! (2) even if you have the disease for a long time, medications and lifestyle changes improve almost everyone's symptoms somewhat. (3) doctors took a long time to focus on POTS and other autonomic disorders, and many patients have suffered all sorts of problems getting a diagnosis. But portions of the medical community really are focusing on the disease now, and new treatments are emerging all the time. We can all hope for improvements!

Exercise is a double-edged sword. It seems that some exercise can help improve almost every patient's symptoms; lots of people on the forum report improvements with different types of exercise. But exercise rarely is enough on its own. If your doctor says that, press him/her for more information on other treatments, or find another doctor! And many POTS patients have to tailor their exercise; doing too much can also set you back. Most people suggest going slow, seeing what types of exercise work best for you, and building slowly if possible.

[miranda]

why do they suggest strengthing the abs ? does this help with low blood pressure issues ?

[ramakentesh]

The outcome probably depends on how you got it and why - they generally suggest that the autoimmune variety can improve within 2-5 years.

In Australia POTS is regarded as a chronic but not progressive illness that usually waxes and wanes. I think one doctor had seen one patients experience a spontaneous remission almost complete, out of maybe 200.

In my experience I have remissions and relapses - relapses are shocking, remissions i barely experience POTS symptoms and just get mini crashes occasionally.

[toddm1960]

Not sure how old you are but most of cases that just go away are in teenagers. Most of the research is done on this group, it's a much lower percentage of adult POTS patients. For us it seems to wax and wane, and rama makes a great point. It depends on what your POTS is secondary to, in my case having mito as the root cause limits my physical ability much more than other causes might.