POTS

[JCappiello]

Hey everyone.. Since I came very very close to passing out this morning I was wondering -Those of you with a POTS diagnosis.. What meds were you given and have they helped?  The electrophysiologist gave me floricef 0.1 mg and told me to wear compression stockings, but he was very straightforward and told me this will be a process of trial and error.  I go for another tilt table test Feb. 5th to see if there is any improvement..

[RheaAnn]

I'm sorry you're still having such problems. It took me months to finally get the dosage right after I found a medicine that was ok with me. I was put on a beta blocker because the Florinef did not lower my heart rate as it was supposed to. But the combo did help after (I think) maybe 4 months of adjusting the dosage! It was frustrating, I have to admit! Every time I went in, I was having to change something. But after a while, it started to help. Hang in there!!

[selmaS]

  Hi....Sorry  u r not seeing a difference yet...mayb it is like some meds where u have to be on it a good 2 weeks b4 u see a change...??

I wish I knew...sorry.

Do u also have EDS as I know that can cause many meds not to work well for us with that....

[JCappiello]

So I am on my 3rd day of Midodrine.  Oddly enough it is not effecting my blood pressure at all.  It is not raising it one bit, but I do notice my pulse is higher then normal (from when I was on Florinef).  I am going to give it a couple of more days before I consult the Dr. on this issue, but is it possible Florinef and Midodrine could both be not effective for me?  And has anyone heard of Midodrine causing an increased heart rate?  For POTS I was under the impression this medicine is suppose to increase your BP and lower your HR.  Very confused.. Any input would be very much appreciated!

[JCappiello]

Good to hear it is at least helping somewhat.  I'm over in NY and we are currently having a blizzard - so I am going to stay on the safe side and not start the med till Sunday - just in case I need to go to the ER.  I want to be able to get there safely!... I'll update after I have taken it for a few days and let you know how it goes.

[Sara_Jane19]

I have been on midrodine for almost a week now and it has helped moderately. I need to add something else in to fully feel better though. I have been monitoring my blood pressure and I haven't gone hypertensive at all.... So hopefully you wont wither! Good luck with this medication, I hope you get at least some relief!

[JCappiello]

Well after taking the Florinef 0.1mg for 3 weeks (which made me feel HORRIBLE)... I had my tilt table test yesterday and passed out yet again =/

My EP said that obviously the Florinef is not working for me and gave me a script for Midodrene - which I start tomorrow.  Ughh this is such a process.  I hope the Midodrene will help.  I have heard a lot of good and bad about the medication.  My co-worker was diagnosed with orthostatic hypotension last year and after a few days of taking Midodrene she passed out in work (right next to me) with a blood pressure of 187/115!!  So needless to say I am a little weary about starting the Midodrene, but with the Chiari symptoms on top of the POTS - I am desperate to feel a little better.