Are Your Symptoms Constant Or On And Off?

[abbyw]

Hi,

When I was not on meds, I felt awful ALL the time - not on and off. I felt like I was jumping out of my skin, and jittery 24/7. The dizziness was here and there, but just overall awful all day long and all night long. Had to take a valium type med to sleep.

When I read your posts, it seems like many of you had POTS "episodes", which makes it sound like it was something that came and went. Is that everyone's experience?

Thanks,

Abby

[HopeSprings]

My symptoms are constant, with days that are a little better, days that are awful - but never normal and never symptom free. It sounds like you've found medication that helps and that's good.

[brethor9]

I am exactly like Naomi! I have better days and worse days but never free from symptoms......I have yet to find anything to make me truly functional again

[westernmass]

I haven't felt 100% normal since POTS hit in February this year.

Like many others, I do have "good" days and "bad" days, but I haven't had a symptom-free day since this all started. I don't really think I have "episodes", as I have heard others describe...my bad days are kind of all-around crappy, and on my good days I'll have a few minor moments of lightheadedness, chest pain and/or nausea. POTS never lets me forget it's here, really.

I am currently on medication (midodrine) but not sure how effective it is.

[Mytwogirlsrox]

Been constant since feb this year. I don't think mine waxes and wanes. I think I'm getting better

[shan1212]

When mine first started, it was in episodes, which for me means suddenly getting really dizzy, unable to get upright, extreme chills, diarrhea and/or vomiting. So like getting the stomach flu. To me that's an "episode." But recently the POTS has been pretty constant, not like being incapacitated from stomach flu, but I'm always edgy or dizzy or nauseated and feel like the pull of gravity is too great to sit or stand for long periods. So I think I will probably still use "episode" to describe what happens to me when it gets really bad, but that doesn't mean I am symptom-free at other times, unfortunately.

[Christy_D]

My son's are constant as well. Some days are a little better than others, unable to attend school for 4 years now.

[hippychic258]

MIne has been constant since Feb. 3 years ago was my last flare up and was pretty good until Feb.

Abbyw What meds are you on?

[Millerla]

Its bad everyday for me, but sometimes is worse if I have a trigger. Heat, stress, and not eating/drinking as well as I need to usually do it for me. I'm still walking and at school full time though, so either I fight my really bad days more or I got help before it got too bad. I am also not currently taking any medications, other than the anxiety meds I have had for 4 years, so medication could be making some people have particularly good or bad days.

[Guest Alex]

My symptoms have never completely disappeared since I was diagnosed (or even before that). What surprises me is that I seem to have more symptoms now than I had before starting all the meds. Now I can't help but wonder if those meds might be playing a role to my increasing list of symptoms (each of them has a long scary list of side effects, plus I've never really taken meds before this hit me and now, all of a sudden I'm taking a pill for everything. What worries me even more is that I can't discontinue taking any of them cold turkey, all of them need to be slowly tapered off... )

I do have good-ish days when I can do more work around the house, or venture out for a walk, or go shopping, etc, but I am not comfortable enough yet to go out on my own. On a bad day I'm practically in bed all day long. If I have a nasty episode of high BP/HR I need a couple of days to a couple of weeks to recover, same thing if I try to exercise or do something that gets me tired. I feel like every couple of days I go back to square 1.

Alex

[peregrine]

Mine's also constant, with some good days and some bad days. No episodes to speak of, although I do have some idea what triggers bad days most of the time. But certainly nothing like flares.

Edited - reminded by Alex's post that I do have a set of probably 3-4 "bad days" if I've had a particularly close episode of presyncope - one where I actually had to sit down to keep from passing out. It takes me several days to recover from one of those.

[abbyw]

Thanks everyone for your replies - you are making me feel more "normal".

Hippychic - I am taking Lexapro, an SSRI, which has me almost back to normal. If I overdo things, I will be totally exhausted for days afterwards, but I am able to manage regular life - job, house, kids, shopping - pretty well. I have now gained 20 lbs in the 7 months on the med, but at this point, I am willing to pay the price compared to life before the med.

Before, walking two blocks to catch a bus had me in pre-syncope for the bus ride home, and walking for 10 minutes had me lying on the couch for hours afterwards. And the constant jitteriness was just awful.

[ramakentesh]

on and off. more off than on thankfully.

[misstraci]

I'm on and off but constant if that makes sense. I always feel bad, but sometimes I have moments, hours, etc of "good" but when I say "good", I don't necessarily mean normal, but better than the worst i suppose!