HoudiniCat

Sorry to hear you?re going thru a rough time right now. I was also dx?d in Feb ?07 after 3 mos. of being bedbound. Spent most of ?07 trying to change around meds, make some lifestyle adjustments and get back to a somewhat ?normal? life. Sometimes I feel like I?m finally on the road to recovery and then one day out of the blue I?ll get slammed with horrible symptoms that make me have to leave my job, go home and stay in bed all day (or days). Who knows the reason why ? too hot out, too cold, too much humidity, didn?t have enough salt/water, stood for too long, was too stressed, not enough sleep, maybe too many meds or too few or they need to be adjusted again or the best reason of all ? absolutely no reason! The unpredictability of this illness makes it impossible to truly understand. My doc is constantly telling me I?m going to ?outgrow? this (I?m 47!) and I really want to believe this but some days I think this might be as good as it gets for me. Pre-POTS I was 45 and felt 25 ? now sometimes I feel 85. Last year was the first time ever I did not get my garden in at all. I did manage to plant some flowers and veggie in containers and tried to be thankful that at least I could do that. Got to accept the fact that ? for now ? this is as good as it gets ? and just try to keep the faith.

I went off all medications for 3 months at the end of last year. I didn?t want my body to have to depend on the meds to be functional ? feel like if I can push through some of the bad times I?ll come out stronger in the end. My POTS doc thinks I?m nuts. It was a really stressful time (work, family, holidays, etc.) and I started getting really symptomatic. Went back on meds in January after doc asked why I would want to live in agony w/o meds while my body was trying to heal itself. I wasn?t sure if I was feeling better because of the meds or because the stressful time was over so now I?m trying this experiment again. I?ve been med-free for almost a month and so far so good. Not that I?m back to my pre-POTS health yet though. Still taking a bunch of vitamins, supplements, salt and water. Best of luck to you!

As I understand it, the BB?s keep your HR down so they help with the tachy events but a side effect is it also lowers your BP ? the last thing many of us need. I?m also taking Florinef (steroid) which helps retain the body?s salt and water ? it raises your BP but a side effect is it also raises your HR. You really have to find the right balance ? it?s frustrating. I know others can?t tolerate it but luckily for me, I?ve had no side effects (except for the very occasional swollen ankles when it really hot/humid out)

If I experience any emotion other than calm and relaxed, my body goes crazy and I start getting all kinds of symptoms. I try to control my emotions the best I can ? sitting quietly and breathing/meditating ? to get them under control. I experience the same thing at work ? if there?s a heated discussion going on, I have to gage whether my body is felling well enough for me to jump into the conversation instead of just sitting on the sidelines and observing. A family party or celebration used to be joyous and fun and now, the anticipation of it alone can make my body go crazy. I agree that these things are what life is all about but for now I?ll just have to be thankful for what I can do.

I haven?t tried the medications you mention (currently on Toprol and Florinef and they seem to be keeping me somewhat level) but as you see, it?s really been trial and error for most people here. What works for some, doesn?t for others. After being house-bound for months when first diagnosed, I was scared to death to venture out alone for fear of an episode when alone/in public. At first, I would only leave the house when with a family member or friend (preferably my husband or brother who could ?catch me?). Klonopin helped me out a bit. It made my symptoms less severe and really took the edge of the anxiety. Eventually I decided to try and get my life back. First took a drive by myself, then a trip down to the corner store for milk. Learned to modify things ? do grocery shopping in the evening (it?s cooler out, less crowded and shorter lines to stand on), if I need to sit down, I sit down (can always make it to my car now to do so if I need), wear a cool-dana (bandana that you freeze and put around your neck) and carry bottles of water w/me at all times. I can function pretty well most of the time now although I don?t know if I?ll ever have the life I had pre-POTS. Still gotta keep doing the ?baby steps? each day and try to stay positive. Good luck!