What works for you?

[sickofit99]

Hello. I'm new to this, but am so thankful I found it. =)
I was just diagnosed with POTS last month after 10 years of frustration and confusion with so many different drs. I went to University of Toledo and finally got some answers. (hallelujah!)
I was put on Mestinon 60mg 2x a day. It helped a little. Then I was upgraded to 180mg 1x daily and I had some side efffects with it. My face and hands were twitching. Kind of scary. My dr put me back on the 60mg but I'm not seeing much improvement. I'm increasing fluids, I'm also using a shower chair- (which I hate! but do what you gotta do =)
I was just wondering some of the things some of you have done or are doing that seem to help. Thanks

[mtgardner]

Welcome!  I have a different diagnoses then you but the longer I stand the more the blood pools and the lower the BP.   I have found that when I sit I do better with my legs elevated.
I have footstools everywhere even outside!  I also fatigue more in the afternoons although some people are just the opposite so I try doing most things in the morning and resting more in the afternoons.

For me water is golden.  I can raise my BP 40 points in 30 minutes by drinking a pint of water.  If it gets way low I drink the water and elevate my feet above my heart by laying on the sofa with feet on the arms or in a pinch laying on the floor with my feet on anything tall enough.  Tonyad told us once of being in a restaurant and laying on the floor with feet on a chair while her husband ate his desert.  Ya do what ya gotta do.

If you haven't had a chance to pruse the posted topic sections or put a few key words in the search section on this forum.  I have learned a lot from those here.

You will find you are your own best advocate.  There are lists on the web of things to avoid.  My favorite one is on the dinet site under "Things to Avoid."   If you need that link let me know and I will look it up for you.  People here are always willing to help you so it is a great forum.  One of the things that seems constant here is change.  No one stays exactly the same.  Our bodies are always trying to reach a point of equilibrium so as things fluctuate and we find things to remedy things fluctuate again.

Mine is also set off by eating especially carbs.  Not everyone has that but it is good to figure out what things can set you off.  Eating more frequent smaller higher protein meals works for me.

I am assuming you have tachycardia and drops in BP.  Let us know if there is anything else you have found.  Have they checked out the cardiac as yet?

There is also a fairly recent post where people say what they are taking that works for them.  You might find that one interesting.

Hope this is helpful and nice meeting you.  Marie  

[LaLa4]

I *love* your screen name!!
Are you increasing salt? Or taking Florinef? That will help you retain the fluids you are taking in. If you are taking Mestonin I think you have the orthostatic hypotension upon standing, as opposed to hypertension (I think that's what Mestonin is used for)?  If that's true, my POTS is a little different.  but after over 10 yrs of searching I've only been on one medicine to treat POTS and I went off of it a while ago. It was Toprol (beta blocker) which seemed to help at first but then stopped and once I went off of it I realized it had been making my insomnia much much worse.  The one thing right now that helps me in an "acute" situation is Klonopin... my body always feels like it's in overdrive so it helps calm my system down.  but again you have to check that that is right for you particular case.
Lifestyle stuff- avoid heat and strenuous exercise, if you want to do outdoor activities do something that involves water... I live in Miami so if I want to be outside i try to be boating or on the beach or something where i can cool off in the water. Drink gatorade or other things with electrolytes. Not for me, but they say if you elevate the head of your bed when you sleep that helps. stand up slowly and take your time doing stuff. stay as active as you can even if it's just a little bit...I find that the one active thing I can really tolerate is walking, so I try to go on walks around the neighborhood.  Learn what your triggers are-keep a journal to track it if you need to. Avoid stress to the extent possible. If you have pooling of blood in your lower extremities and a drop in bp you can look into compression stockings.
Everyone is different though and whatever you do never never stop searching for answers and don't take it when dr.s tell you it's no big deal or it's in your head. If they do that, leave them and keep searching for someone that is very familiar with the illness and takes it seriously. You may run into a lot of, i hate to say it, but ignorant and insulting dr.s  and other people that tell you "but you look fine".  If you need help explaining it to people so they understand and get the gravity/severity let us know, this forum has been great for me for that. Oh, and Google is a godsent :)  There's also links on here somewhere (heiferly-if you're reading this... you are the one that could point to the right direction for that) that take you to some good research.  Anything by Dr. Grubb, he's the expert.
ummm that's all i can think of for now, but good luck! we are all here with you, and keep us posted on what works/doesn't work for you because it may help us out too.