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DX with POTS today.........


laila
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Hi!

I finally had a tilt table today........and he said I had POTS, the kind where blood pressure drops and pulse goes too high. 10 years of this and finally someone found it! I know there is no magical pill, but how have people done with Midodrine? I was prescribed 5mg 2x a day, and to see Doctor next week. He had another patient ready to tilt. I am a bit confused because sometimes my blood pressure is high.....but he said he wants it to be higher, than a normal persons. I can't beleive I had to self diagnose myself with this wonder ful site and then finally found a doctor who is familiar with it. He said to add salt too. I remember a previous post where someone had a recipe for "homemade gatorade". PS. I think he said 3 times a day but on the RX it says 2x a day? Will have to call. I am actually happy to have a DX, I don't feel lilke a medical freak alien anymore. I am currently on Xanax. How do you print all the little things at the bottom of your posts like poems and medications, tried, etc. Thank you anyone!

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Hey Laila. I am by NO means any kind of help as I am new to this, too, but I can assure you that asking questions of others helps. I think being informed and proactive helps when you meet with your DRs anyway.

I was dx with NCS after a major episode/weeklong stay in the hospital. The initial course of treatment was the midodrine, followed by Florinef (fluodrocortisone), and I understand completely the DR's attempts to raise the BP and keep you on your feet. Unfortunately, I tolerted neither well, and the Florinef is listed as an allergy now, but it was really more of a severe reaction/side effect.

There have been good results with midodrine and/or fluodrocortisone, but I am very sensitive to meds. I was too dizzy and retained too much water (I always have). Adding salt and staying well-hydrated helps me, and I take an extended-release beta blocker for arrythmias -- unfortunately, I have to watch for too low BP and way too slow HR. I may be a candidate for a pacemaker but I have real mixed feelings about that, too.

Good luck with the meds. I'm not sure, but I think a lot of people have good luck with the midodrine.

To put the stuff at the bottom of your response(s), go to My Controls and play around with the profile stuff. It's called a signature, and you'll find it there. I'm NO computer expert, either, but I managed to do that much.

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Hi, I'm happy you got the dx.

I tried midodrine but I couldn't handle the side affects. I felt 10 times worse.

But it may work for you.

The only thing I've been ok with is beta blockers but it doesn't help all symptoms.

Good luck in finding what's right for you.

Amber

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Thank you for your input. As I am sensative to meds as well. I'm feeling quesy about trying the midodrine at all! Maybe I will take (1) 5 mg pill on Wednesday when hubs is here and I don't have to be doing something like driving. I have heard more bad than good about it. And I have been checkiing my pulse, blood pressure today it seems normal/ high. My worst symtoms are in the morning. Thanks for the tips on the computer, Rdslots, and Amby, I tried to reply to your welcome post and my computer wouldn't let me type anything. It going crazy, like me! :P I will check with wonderful new Doc.

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