What Kind Of Treatments Have Helped The Most, And How Much Have They Helped?

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I know most people have had the most success with a combination of medication and lifestyle changes, but I'm curious to see which one you all think has played the bigger part in managing your illnesses.

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[corina]

i like this one, though i find it very hard to choose. when i started meds i felt better immediately but had to increase over and over. i?ve tried several combinations, some work beter than others but all in all, i am worse than when i was diagnosed. still, if i wouldn?t take the meds i would be in bed all day, not being able to come out at all.

besides meds i?ve changed my lifestile completely: not working any more, not being able to go out without my scooter/wheelchair and only at a "good" day, trying to exercise, having to stop that , not being able to do the household (so i've promoted myself to manager ) and now i'm in rehab. i keep on trying and trying because that is just me. all in all i get worse but luckily it goes very slowly.

i would love to hear more positive stories, so thanks for bringing this up!!

corina

[dizzygirl]

hmmm i agree with corina kinda hard to answer!

Uhm here is what i found some success with.

as far as medications go.. Clonidine has been a good drug for me.. when i first saw dr grubb he put me on the clonidine patch.. and i had a fairly decent improvement for a few months anyways. I now take the pill form of clonidine and it works allright.

uhm Mestinon was initially helpfull for me early on.. I had to go on very high doses of mestinon.. and i did not do well on the higher doses of mestinon.. and the "low" dose was no longer effective.

Cymbalta was another drug that was initally helpful. I LOVE cymbalta it helped give me small energy burst and made my brain fog better. cymbalta was another one where i quickly had to up doses and could not tolerate the side effects at higher doses.

IV fluids ...mm IV fluids are always helpful.. depends on the amount and speed of the drip.. I'd be good for about 8hrs. to maybe 2 days on a 12-24 hrs worth of IV fluids.

Non medication things....rest, learning what time of day is best for me to do things, prioritizing my uhm -stuff---uh activities! (lol) and not being hard on my self for not completing everything... KNOWING LIMITS!!!..accepting help from others.. that is a big one for me.. accepting help b/c i am/was a very independent person... and i'm stuborn and dont want to ask if i can avoid it

Uhm Knee high compression hose have been good for me... i wear then when i know i'm going to have to be upright for a while.. shower chair is a must in my book!

powerwheelchair has been a blessing.. it has allowed me to be a little more social (after ive slept all day of course ) when i other wise would not have been able too...

I am alot sicker now then i was 6 1/2 yrs ago.. but these are things that i can think of off the top of my head that have helped for a minute over the yrs.

oh yeah propranolol helped me too initially (its beta blocker) until i again got to very high doses once again and had to switch to my current BB.. betaxolol..by the way is decent as well! keeps the ticker below 150!

[mountainsunflower]

I have mostly made lifestyle changes, and have had some success. I use a bb when needed, however, i try not to because i hate how it makes me feel. I have too many sensitivities and allergies to many meds and they seem to make me feel worse instead of better. I have done all the common things (hydration, diet, rest...) I also have altered my exercising and found ways to do so that work for me. I constantly monitor my heart rate (which at times becomes quite obsessive.) I visit my cardiologist often, and call if i have questions. Like all, some days are better than others. I don't always follow the rules and i pay for it... I am still learning about my triggers, what works, and about POTS.

[cordila]

Medication has NEVER helped me. I can't metabolize it. So I can only implement lifestyle changes and vitamin therapy and that has dramatically changed my life for the better. I follow a rigorous diet (free of gluten, dairy, alcohol, caffeine, minimal fruit and sugar) and apply transdermal B1 every morning and transdermal magnesium every night. The diet and the B1 in particular have allowed me to move out of my parents house and back on my own. It's been a year since I've implemented these changes and the difference is dramatic. I no longer even think to monitor my BP or pulse as it is a non-issue these days. I continue to be plagued by fatigue (if i overexert myself), nausea (same reason) and gastroparesis, which seems to not follow any particular, trackable reasoning. If anyone has any tips for those three areas, I would love to hear from you!

[pat57]

Norpace its the difference between disabled and high functioning for me.

Just in case there's someone who doesn't know already.

I have OH and NCS no POTS.

[Guest tearose]

No medication.

I am so much better in compression!!! I wish I owned some JUZO stock!

[ramakentesh]

When my pots was at its worst after a pretty much sudden onset in 2003 i was unable to tolerate any medication - in short even eating made me experience a worsening of symptoms.
I wasnt diagnosed for over a year, and by that time I had begun to improve.

Licorice was a god send for me and that combined with ergotamine as a vasoconstrictor which i take when im having a very bad day work the best for me.

That being said, through increased fluid and salt intake I have been able to exercise and this has also had a dramatic effect on POTS for me - improving how long I can stand before experiencing symptoms. I can now run 2Kms which would have been TOTALLY impossible when I was really bad.

The thing that seemed to get me out of my original episode and the brainfog that I was suffering seems pretty strange: I started eating lots of bacon! Maybe it was teh salt? Im not sure but it helped me at the time. Has no effect really now days though.

Other thing i reckoned helped but may seem strange was to stop drinking tap water.

[Heiferly]

I can't even vote. Things seem to work for a while, then my symptoms shift and some become more prevalent while others become less prevalent. Overall, my ability to function has gone downhill. I quit smoking in June because of a cancer scare (some pre-cancerous growth), and quitting smoking seemed to make everything WAY worse. The medications that were working suddenly weren't. Smoking constricts your blood vessels, so I guess that makes sense that it would actually help with the POTS in a way. I'm not saying I want to go back to being a smoker, but factually, it did make my POTS worse and none of my docs have chimed in to disagree with me on that point, not one. But the meds aren't entirely not working, because if I don't take them, things are even worse than they already are. So I guess they're dong *something.* My "lifestyle changes" prevent me from having daily syncope, but they don't give me a LIFE, just an existence. You know? And I still feel sick every day.

Sorry, I'm in a really sour mood today and I shouldn't be dumping it on you all.