I'm Finding The Littlest Of Things Is Putting Me In Bed For Days

[statesof]

The title pretty much sums up my current problems. I've had POTS since 2009, along with migraine and depersonalizatio disorder. I would have daily/ weekly headrushes, feel out of it for 30 minutes after exercise, and have random points of fatigue or episodes of feeling somewhat faint-ish but I was able to do exercise normally and didn't really have many other autonomic problems. Then two years ago I had one specific headrush that sort of changed everythign from that moment forward, if I did exercise i would get really bad vertigo for hours, along with a strong hangover feeling for days, and my head would have the most awful feeling in one particular area, my arms would feel weak and shaking, and it felt like my brain was recovering from an injury. So the last two years I've retriggerd this brain thing over and over again spending 4-6 days a week in bed recovering each time. It changed from being triggered by doing light exercise, to being triggered by walking only a block, or standing up and sitting down to many times in a short duration, or like this week even just standing up from a chair and bending down to quickly after satnding, which sort of feels like I'm bending down at the same moment the delayed heart rate response is rushing blood back up to my head. The short episodes basically make my head feel awful for days and force me into bed, not feeling my head is well enough to sit up or stand for more than 20-30 minutes at a time. All my doctors have been stumped, and the POTS specialist I saw at mayo said this long lasting effect is not a part of POTS, but since all my test are normal other than TTT, they don't have an answer. Anyways just wanted to see if anyone else could relate to this, and just to add; I never feel crappy like this unless its triggered by a physical event, like sitting outside in heat, or standing for a while, or just sitting around I will never feel this way, or have anyone of these episodes.

[Katybug]

I can relate but I don't have any good thoughts as to why it is happening. I was so much better for about 3 weeks after my neck surgery. Then, all of a sudden, pooof, the least little thing sends me to the couch or bed. I've been sleeping about 16 hours a day with another 4-6 spent awake in bed or on the couch. The other time is filled with tryi g to get the basics of life taken care of but even a moderate trip to the grocery store puts me down for the remainder of the day and sometimes days afterward too. I don't know what changed. :-(

[statesof]

For you does it feel more like a POTS thing where the way you feel is more episodic and maybe you feel fine one hour and worse the next, or does the way you feel act more like a triggered response to whatever your doing physically? Because I used to get episodic fatigue and stuff like that, which would just sort of come over me without any specific cause I would notice, but now my feeling bad always is triggered by a specific physical even where I can tell the exact moment I did something bad for my head, and then the other symptoms sort of come in after that.