bella27 Posted August 26, 2007 Report Share Posted August 26, 2007 Hi,I wanted to do an informal survey on everyone's favorite meds taken thus far for POTS. Also, would you mind including a brief description of how it helped and what side effects occurred, if any.Thanks!Rachel Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted August 26, 2007 Report Share Posted August 26, 2007 Rachel,Paxil is a Godsend for me! In fact, I didn't even know I had POTS until I stopped taking it and started nearly passing out, weight falling off, severe diarrhea, heart rates upward of 160 bpm after standing ...It seems like it calms down my overactive sympathetic nervous system. Side effects: some weight gain, I suppose, but it might more be just keeping me from looking like a stick because I can't eat anything when I'm not on it. Some sexual side effects (worse at higher doses).Also, Lyrica (pregabalin) also seems to help calm down my overexcitable nervous system, but not to the extent the Paxil does.Amy Quote Link to comment Share on other sites More sharing options...
thejohnsongang Posted August 27, 2007 Report Share Posted August 27, 2007 Rachel,For me it has defiantly been the Florinef and Coreg CR. With out these two I don't know what I would do. The florinef, along with high salt and water intake has increased my BP to be in the normal range. I got to stop the midodrine.!!!!YEAH!!!! no more tingling of the head. The only side effect has been hair loss. I had a very, very thick head of hair and now it is thinned out to normal. It just makes it easier to style now and less time to blow dry. But the hair loss is slowing down now. Instead of a hand full every time I shower it's only about 15-20 strands at a time now. The Coreg CR has almost stopped my tachy all together. I don't feel like I'm having a heart attack every time I walk down the hall anymore. I've had no side effects for this at all.I'm looking forward to see all the posts on this subject. It should prove to be interesting.Nolie Quote Link to comment Share on other sites More sharing options...
jlmahon Posted August 27, 2007 Report Share Posted August 27, 2007 Epogen has been a miracle drug for me. Back in March, I couldn't stand for longer than 2 minutes. Now I'm out shopping, and able to do some exercise. Not only did it help my bp, it also helped improve my energy level. I've had to stop the drug for a few weeks because my hematocrit got too high and I really noticed a difference. Epogen comes with its risks but it's worth it to me. Quote Link to comment Share on other sites More sharing options...
roxie Posted August 27, 2007 Report Share Posted August 27, 2007 My most successful combination of meds has been mestinon, florinef, and low dose prozac..... but last march i have been having trouble tolerating them, my bp as been going high, so right now we are trying to figure out what to do, but in the last 10 years those did the most for me, hopefully I can find something to help SOON hanna your progress is wonderful!! Do you think you could explain a little more about your experience with epo? Are you going shopping with or without a wheelchair? I am trying to figure out if I should give it a retry and am confused, the shots are quite painful, do you take any other meds?Madeline Quote Link to comment Share on other sites More sharing options...
persephone Posted August 27, 2007 Report Share Posted August 27, 2007 Procrit/Epogen/EPO injections twice a week- took me from fainting every day and always feeling tired, to working out at the gmy and fainting maybe twice a month now. Wonder drug. Although it contributed to significant weight gain- who cares about that when you get your life back, though? Quote Link to comment Share on other sites More sharing options...
gdomaracki Posted August 28, 2007 Report Share Posted August 28, 2007 Midodrine & Florinef along with H2O & Salt Tablets are my miracle drugs! Along with alot of prayer & time. . . I have come from being bedridden to working part time at a preschool in the past 2 yrs.What a blessing!nicole Quote Link to comment Share on other sites More sharing options...
pat57 Posted August 28, 2007 Report Share Posted August 28, 2007 For NCSNorpace, it has given me back functionality. Quote Link to comment Share on other sites More sharing options...
beth27 Posted August 28, 2007 Report Share Posted August 28, 2007 Went off of Proamatine and Florinef and am doing much better on glyconutrients with no side effects at all. Cranberry tablets, probiotics, adrenal support and 25 mg of Zoloft which i want to get off of, but have panic attacks if I do... anybody with experience with getting off zoloft and what to replace it with? Quote Link to comment Share on other sites More sharing options...
bella27 Posted August 29, 2007 Author Report Share Posted August 29, 2007 Hi Beth,I've never heard of anyone taking cranberry tablets before. What symptom do they relieve? Thanks!R Quote Link to comment Share on other sites More sharing options...
cardiactec Posted August 29, 2007 Report Share Posted August 29, 2007 beta blocker , beta blocker, and MORE beta blocker! Quote Link to comment Share on other sites More sharing options...
friday Posted August 30, 2007 Report Share Posted August 30, 2007 Procrit/Epogen/EPO injections twice a week- took me from fainting every day and always feeling tired, to working out at the gmy and fainting maybe twice a month now. Wonder drug. Although it contributed to significant weight gain- who cares about that when you get your life back, though?This is the second answer that has Epogen listed. What kind of med is that?Susan Quote Link to comment Share on other sites More sharing options...
nichob73 Posted September 1, 2007 Report Share Posted September 1, 2007 Hi Where do you get the EPO prescribed in Scotland Peresphone - would like to try and get my life back also. Is it Vascular Disease Unit Dundee?!! Quote Link to comment Share on other sites More sharing options...
smiles Posted September 2, 2007 Report Share Posted September 2, 2007 Toprol to lower HR, Florinef to raise blood volume, salt tabs to keep fluids in my body, 4 bio-identical hormones to level premenopausal flare ups. I'm on many others they are trying to manage my symptoms with but these 4 are my life savers. We're still hunting another magic pill. Smiles Quote Link to comment Share on other sites More sharing options...
dawn Posted September 4, 2007 Report Share Posted September 4, 2007 Beta-blockers (Inderal), Xanax, SSRI (low dose Celexa), and Klonopin at bedtime.Dawn Quote Link to comment Share on other sites More sharing options...
bgsu4 Posted September 5, 2007 Report Share Posted September 5, 2007 Xanax was great, wish my ANS doc would let me on it again.Lyrica has been okay but I could exercise on Xanax not so much with the Lyrica.(and we can't figure out why) Quote Link to comment Share on other sites More sharing options...
Rachel Posted September 5, 2007 Report Share Posted September 5, 2007 The most helpful med for me has been continuous birth control. I've never responded well to medication, but this has at least helped to keep things stable so that I don't crash as often. I haven't had any ill side effects from a bcp. Rachel Quote Link to comment Share on other sites More sharing options...
jlmahon Posted September 5, 2007 Report Share Posted September 5, 2007 I forgot to mention that Provigil has been very helpful to me too. When I get a day where my bp is running on the low side, I get very sleepy. I take 200 mg of Provigil on the morning and am able to get through the day feeling rested, not feeling like I need to close my eyes. Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted September 6, 2007 Report Share Posted September 6, 2007 my bb.. betaxolol an clonidine.. help with my HR... its the best combo that ive been on....the betaxolol has really been a godsent to me..seriously.. my hr where (pre betaxolol) running 200-240 range.. and where very uncontrolled... ive been on betaxolol about 2 yrs now or so.. and the highest my hr has gottne that im aware of is about 130-140 ish.. and the clonidine... helps alot with my adrenaline surges... i havent had a real bad one in a few months now....Uhm i also tried cymbalta and mestinon... for some time.. and i did find some relief with these meds for s short time.. the cymbalta gave me burst of energy...and helped wee bit with leg pain.. and the mesitnon helpm me with concentration and brain fog... Unfortunelatly I was on High high doses and teenty tiny doses for a while.. and the side effects began to out weight the benefits... But like i said at some point i did get some relief..I also was on meds like medrol pack and prendisone.. medrol pack was for breathing issues and prendisone for allergic reaction.. and both drugs gave me a large over all boost in feeling decent..but i dont tthink* these are normal drugs for pots...i do believe they are steroid meds. but they did help me....oh yea the other things that used to help me alot where IV fluids.. and oxygen.. it used to give me a huge boost Quote Link to comment Share on other sites More sharing options...
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