RaeJae

I have used IV fluids especially before I travel and it does help. One thing to keep in mind is that there are different types of IV fluid. Make sure it has plenty of sodium, so you don't just pee the fluid out. It doesn't do any good unless you retain it.

Good luck!!

Pamela- you summed it up in one sentence. Very well said!! There are doctors who care, but you do have to dig and keep searching. I guess we need to remember these people are human too. In all honesty could any of us understand this wide range of syptoms if we didn't personally experience them ourselves? I guess in that way we are blessed because we can really feel for those that suffer.

WE NEED EACH OTHER!!

Thank you so much! I will be discussing this will my Dr. Not sure how to do that though. I am wondering if Dr. Grubb would talk to my physician about his experiences with Procrit, etc... I am a past Mayo patient and that is a dead end as far as my physician contacting Dr. Feeley. Any suggestions? I live in Nebraska, but maybe I just need to bit the bullet and see Dr. Grubb since he seems the most supportive I have heard about.

Do you notice any negative side effects? Are you able to tolerate excersie better on it? This website is so great!

I do use iron supplements when absolutely necessary, but I don't tolerate them very well. (Big surprise).

Thanks again

Katsusu,

Just curious, How old are you? You have PD and POTS. Ugh!! One is more than enough! I feel for you soooooo much

FYI If you see Dr. Feeley, don't let him leave the room without answering all of your questions. If he tells you to get dressed, just know that HE will NOT come back in. His nurse will. The first time I was at Mayo I did not know my specific diagnosis until my GP got the medical report from Mayo weeks later. Very Frustrating!! I wish I would have known this prior to my visit. I have seen him several times and each time it was the same scenario, although I did learn to ask my questions before he got away.

Best of luck to you. Can't wait to hear how it goes for you. Keep your head up, we have all been in your shoes. I was an avid exerciser and weight lifter when my POTS really flared up. It is so hard to deal with having that taken away. It has been 5 years for me and I am still dealing with the frustration (as most on this site are) of limited activity.

Hope this helps!

I am wondering what your experiences have been with Procrit and why your doctor decided to try it? Did you have abnormal blood counts? I am really curious how it works. I have a tendency to anemia (iron deficiency) but not always. Thanks

I also suffer from tachycardia at night. I have learned to have my head propped up on a pillow. If I wake up flat, I will be tremoring with some rapid heart rates. Do you sleep with your head elevated? If not, it might help to try.

Thank you, Mighty Mouse.

What did you have put on yours? POTS or Dysautonomia?

Do any of you wear a medical bracelet and if so what does it say and where did you get it? Wow, what a relief it is to be able to ask someone these questions. For years now I have felt like a lone island!!

Are any of you very drug sensitive? I have a hard time tolerating medications. I am doing better off the midrodrine and beta blockers, although I have runs of tachycardia and "greying out" it seems to be a toss up! The hardest part for me is the overall weakness and wiped out feeling when I am flared, I feel like I can't even think. Sound familiar?

Okay, let me be more clear. I went into the clinic to have the IV inserted. ha I'm just a difficult case to start an IV on. I decide to try this because I have that weak heavy overexerted lightheaded feeling that nothing seems to help. I have overdone it lately trying to get ready for a family vacation. It is so hard to learn your limits. I manage fairly well if I modify everything I do. After reading multiple posts, I realize this is a juggling act for all of us. I was diagnosed with POTS in 1-01 by Dr. feeley at Mayo, MN. I have gotten better, mostly because I have changed my life to accomadate it. But, right now I am struggling. Don't ya just want it to go away?

I have trouble with stairs too.? I think it's a pretty common symptom for POTS patients.? Walking is bad enough - stairs are like walking times ten!?  ? 

I can do a few steps OK, but when I have to walk a couple of flights it's really hard.? I always take the elevator too, so I am sure that makes me rusty.? It's kind of strange - I always had trouble with stairs even pre-POTS.? I used to work out a lot and was in good shape, yet I would always be lagging behind and out of breath on the stairs.

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The worst is when you can see through the steps, like metal ones! I am not scared of height either, but I can hardly tell where my feet are if I get too high up on something.

I also use it when I get into a real slump and cannot get out... Especially when I come down with a flu bug... I have a standing order for it from a Home infusion company.

It is such a relief to know I have this now. I used to have to fight and beg for an IV...sit in the ER for hours on end.

It makes me feel much more secure to know that it is at my disposal when I need it now. And it absolutely helps get my volume up....

Like Kitsakatsa I use Sodium chloride IV.... I need the salts in it.

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Thanks for the info. I am going on vacation but my POTS always seem to flare on vacation and so I tried it for the first time this morning. After 6 tries of trying to get the needle in, I am wondering if it was such a good idea. What symptoms improve for you when you use it?

Has anyone used IV Saline to manage POTS?