Yes I heard different theories from my doctors, it gets really confusing!
I hear you. I keep reading all sorts of different theories for what causes Orthostatic Intolerance. And they keep using different names, too. So, it's complicated.
A brief rant -- some of the OI research seems to focus too much on syncope (fainting). Some of the research papers seem to imply (and maybe I'm reading them wrong) that if the patient's not fainting any more then there's no more problem. But what about the patients who have POTS or NMH/NMS/NCS without any fainting? We just get all the crappy symptoms, too sick to work or do anything at all, but many of us never actually faint "in real life" (only on the tilt table test).
Don't get me wrong. I am very happy that I don't faint. I'm so glad I don't have the risk of injury from that kind of fall! But not fainting does equal recovered or well. I'm still disabled. Even with treatment I still can get those terrible pre-syncope symptoms of nausea, dizziness, rapid heart rate, etc. It's just that there's enough time for me to sit down before I faint.
VeganMonkey said:
One said that POTS/OI can be caused by a problem in the brain stem where things get regulated, so then you'd get issues with body temperature (which I have) and things like POTS/OI and heart rate issues.
I'm just checking every angle to figure out what it causes it for me. Maybe it's not just one thing that causes it on me? Who knows. I'm not sure if EDS patients have body temperature issues.
It does seem that some folks might have multiple factors contributing to the problem so it makes sense to look into all of them.
VeganMonkey said:
What is pretty weird with me is that most POTS/OI people don't tolerate warm weather well. I don't tolerate heat as in hot baths and hot showers, they make me crash instantly, but warm weather (of temperatures that other might find hot) does me good.
That's interesting that warm weather does not bother you.
I'm one of the more typical patients, I guess, since I always like temperatures that range from cool to cold. But if I get too cold then I can start shivering and won't warm up properly. So, I do have to watch that.
VeganMonkey said:
I have been ill for a very long time (it started 32 years ago with a very small symptom, brainfog, and got ill 6 years after my first symptoms) and it has been a downwards going thing, but with ups and downs, but if I compare decades or even blocks of 5 years I see a tendency of it going down.
VeganMonkey, I'm so sorry to hear that you've been sick for that long! Sending you some extra
hugs
for the day...
My illness has not lasted quite that long (got sick in 1990). But it was the worst for me near the beginning, back in mid to late 1991. There does seem to be a slight downward trend for me over the last 8-9 years but I am still not at my worst. On really bad days, when I am searching for something positive, I will think to myself, "Well, at least I'm not as bad as I was in 1991..."
I'm sure I'm rambling again (I have some sort of flu...woke up with a fever of 100.5 this morning) but I needed a distraction so I thought I'd come on the forums.