Pots After Meds And Treatment

[jump]

I hope these options aren't too confusing! I'm just curious to know how POTS affects people's lives in kind of the average, day-to-day ways as opposed to the bad days.

[bjt22]

There's still much I can't do. I wouldn't be able to work, I can do a little very light housework, and can only tolerate any activity which requires me to be on my feet for short periods of time if I'm able to take sitting breaks every few minutes.

So, how am I helped by medication? I don't feel so awful if I sit around and do nothing. There's much to be said for that.

[MightyMouse]

I didn't answer b/c I didn't "develop" POTS and NCS, I was born with it. I don't know what it feels like to *not* have a chronic illness. I do know, though, that I cannot function without my meds, but nonetheless, my meds don't fully make me able to do what *normal* person can do. Today, for example, with meds and plenty of sleep, I already know I wont be doing much more than, perhaps, showering myself. I am dreading this coming week, as I have to work far from home all week, which means I will be pushing myself past my limits and then crash every night and lose my entire weekend to trying to recoup...

Wow, I just re-read what I wrote-and my normally upbeat self sounds like such a downer. Sorry about that, been a tough week of POTSY-ness.

Just as important as my meds is my workout regimen. I pay about the same as my co-pay for physical therapy to have a trainer come to my home, but PT actually made me feel worse b/c the therapist just didn't "Get it" with regard to my limitations. I have to say I'm pretty proud of myself b/c I've been able to stick with working out 2x a week with a trainer, so my body is as fit as I could be given my health issues, but it's a constant struggle mentally and physically; I know I'll be feeling horrible after working out, but if I don't work out, I end up feeling even worse in the long run. Staying on track with my muscles will probably help me stay semi functional further into my life span than if I didn't. I know there are many here who just cannot exercise right now. I want to say that this has been a very long, very slow process of improvement, from the simplest moves while lying down.

[mkoven]

Hi Nina,

Can you describe in some more details what exercises you are able to do with your trainer and how you progressed? If it's too detailed, feel free to pm.

Thanks!

michele

[MightyMouse]

I started out mostly lying on the floor, doing core stabilization exercises (abs, chest, hips, behind, and back), as well as working without weights to build my arms and legs strength and stability. My trainer worked hard with me on form so I couldn't/wouldn't hurt myself. Then we went on to light weights (1/2 pound to a pound in each hand). I also was able to do a few seated exercises on my therapy ball under me and my back up against a wall. I can actually do the same exercise now, with no ball under me! My balance and joint stability were really awful when I started. After a few months I was able to do modified push-ups.

I'm supposed to be doing aerobics on my recumbent bike a few times a week, but i've not been feeling up to it for at least a month. I was doing some alternate stuff, like taking walks with Teri, but otherwise, have been really bad about the aerobic fitness stuff. I hope to be more regimented about this at some point, but frankly, I'll take the joint stability from the weight training, and the knowledge that it's helped my bone density to improve with just the exercise and oral calcium supplements. My most recent dexa scan showed that I no longer have osteopenia!!! How cool is that?

[mkoven]

Woohoo on the banished osteopenia!!! Supercool!!!

Is the aerobic stuff harder on you because of ans stuff?

[MightyMouse]

Um, no, I just run out of steam and don't like to ride the bike, even though it's in front of the TV and I know "it's good for me". I really need the motivation that I get from working out with another person... trying to motivate myself is just too hard when I'm exhausted, sore, etc. I know most of you "get it."

Nina

[ajw4790]

I too am not sure I really "developed" POTS, but was more or less born with it... So, not sure how to answer.

[Guest tearose]

I wonder if we could be born predisposed to ANS dysfunction and something triggers it to start at some point.

I think I have a progressive ANS problem that would have come on in my later years but do to accidents and a bite my immune system malfunctioned and kicked off the terrible problems much sooner and in a smaller dose called POTS.

[Carly87]

"I find I have energy to work OR to engage in activites I enjoy, but I do not have the energy for both."

I voted for that option but I think I'm somewhere in between...I currently work a part-time job. I work 9-4 Mondays-Fridays. When I get back home every day, I am just DRAINED! I do work outside and have to ride my bike to and from work (short distance,) so those may be contributing factors.

After work, I usually can't do any activity like housework or anything that requires me to be on my feet. I do like to relax and practice my piano, go online, or do crafty things so I guess those can count as activities I enjoy! I just don't have energy for the more 'active' activities.

[Shimoda]

"I don't believe I have adequate medication and treatment."

I really haven't explored all options yet, so I put that one down. I could have voted the "I'm not able to do jack sh*t anymore" category just as easily...

[firewatcher]

Since I have probably always had POTS, not much has really changed. The awareness of what is going on and the "big crash of '07" have slowed me down a lot. I think that my "undiagnosed, unknown endocrine disorder" thing is what has made my POTS worse.

I have realized, finally, that there are some things that I can probably never do because of POTS (aerobic exercise/running) but it's not because I am deconditioned. It wouldn't matter what kind of shape I'm in, I wouldn't be able to do it. [it would take a MUCH bigger dose of beta blockers to slow my heart down enough to be able to do that!]

[ramakentesh]

I havent really found a medical intervention thus far that has had a significant effect on POTS other than perhaps beta blockers and licorice. I couldnt tolerate the others and most seem to make me feel more out-of-it rather than less.

I would say that I have improved after the three major boutes considerably - the first time without any medical intervention using gradual exercise and time.

[Eillyre]

I hesitated voting in this survey because I'm still gradually improving--I hope people reading the survey results will consider that these answers are not necessarily "set in stone" so to speak.

[ramakentesh]

I had marked improvement after my boutes - i just get boutes and uncomfortable dizziness in between, otherwise once im over the slumps im pretty much ok and can work.