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..

[JCappiello]

Hmm.. that is something I will definitely bring up to the NL next time I go... or maybe try and look around for a Rheumatoid Dr.

Thanks

[selmaS]

  Try talking to the NL....and see what they say...u may need to call around and find a Rheumatoid Dr that is familiar with EDS....

I was always easy to bruise too, and I always told all my Drs about it...my DH say's I am like a rotten peach....lol....And then I also knew I was slow to heal as well...to me they were my only EDS symptoms, but the NL that works with my Chiari NS did testing on me and did DX me with EDS.

[JCappiello]

Interesting I am very easy to bruise... Any suggestions on how to bring it up to the Dr.?  Right now I am seeing an electrophysiologist and neurologist.. Which one should I bring it up to?

[selmaS]

  I also said that exact thing, I do not fit EDS criteria...but I found I did have more of it then I realized...the only things I could identify was slow to heal and easy to bruise....

So do not dismiss this, have a medical professional rule it out as it can affect u more then u know, this is very important.

[JCappiello]

Thanks... Weird the Florinef helped my heartrate but I could not deal with the side effects ughhh...  Now the Midodrene does not help with my heart rate and barely with my blood pressure at all!!.. We shall see next Tuesday what the EP says.. I'll keep you guys updated =/

[JCappiello]

Nothing was mentioned about EDS and I looked at the signs and symptoms online and I don't seem to fit the description....

[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.

[JCappiello]

My cardiologist was talking about putting me on a beta blocker because of my heat intolerance (heart goes like crazy). He is waiting on that until the electrophysiologist figures out how to control the POTS.  I am hoping TCI calls me back soon as well.  I got one call back last week asking for my MRI disk, which I sent out last Friday.  So hopefully they will call back soon with an appointment....

[Sexybare]

I am currntly on a beta blocker. So far its helpin my tachycardia, tho I still have near passing out episodes

[Sara_Jane19]

I was just diagnosed with dysautonomia a few days ago, so I am still in the beginning stages of trial and error. I have heard, however, that floricef may increase the intracranial pressure because it helps you to retain water and salts. Since you also have chiari it seems like you may want to talk to you NL/NS or whomever you see for the chiari and see what their opinion is. I have read Floricef isn't advised for people with chiari. Again, just what I have read/heard but this may be why the Floricef makes you feel so poorly. Good luck with your TTT tomorrow and keep us all updated!

[JCappiello]

I see.. Thanks =) ...

[selmaS]

  Many of us with ehlers-danlos do have issues with sensitivity to meds...as well as other issues....this is y I am big on saying have it ruled out by a Dr that knows EDS.

[Sexybare]

I do have autonomic dysfunction, just that its not affecting my heart and I do have meds for tachycardia as well. Hope your meds get better and hope your test goes well :)  Dana

[JCappiello]

Thats exactly how I feel - weak and dying ..blah.  Wow I never thought of that I have been very sensitive to meds for as long as I remember - Very curious if that could be Chiari related...

[Viva001]

We are taking a "wait & see" approach.  I never passed out, but POTS made me feel like I was weak & dying.  I feel so much better since surgery (except for pain), that I don't think I need to try any other drugs at this point.

I don't know if our Chiari brains don't tolerate drugs very well, or *my* monkey brain does not.  (I do have other food/chemical sensitivities.
That would be an interesting research project.

[JCappiello]

Yeah the doctor told me its a lot of trial and error!! Just what I want to hear.. Along with the Chiari .. another condition that is very confusing.. ugh..

I am a medical coder and its true that POTS does not have a diagnostic code - it falls under a condition of dysautonomia, which definitely needs to be more specific!! ...

So since you have POTS and are on no medication - how are you feeling?

I know this Florinef is making me feel HORRIBLE. The Dr. told me just to hold on and keep taking it at half the dose (since my next tilt table is tomorrow) ... I am guessing he wants to see if the med is effective, but it is making me feel horrible! So what I wont pass out or nearly pass out anymore, but feel completely sick from the Florinef?! Ughh sounds like a lose lose situation to me!  Guess I'll just have to wait and see how tomorrow goes....

[JCappiello]

Well its good news you don't have POTS, but sorry to hear you are back to square one =( . . I have my next tilt table tomorrow - The Florinef is horrible!! so I am not sure it is going to help the test results... I will update and let everyone know how it goes...

[Viva001]

I have POTS, but I do not take any meds for it.  The first time I had a tilt-table test, I went white blind--they don't let you get that bad anymore!

There is an excellent informative video on dysautonomia, which my Chiari brain can't remember the title of, but a dr. is a patient.  He, as well as other patients, tell what they tried & what works for them.

The dr, says that POTS isn't even a diagnostic code, and that needs to change.

[Sexybare]

The test was horrible. After the meds they gave me I thought I was gonna die. I didn't pass out tho I wish I would have. My results were my heart is fine. Duh I have seen a cardiologist so I already knew that. Dr sent my results to my nl and ra and family dr. He says he's no nl but its def related to my choari and need further testing with my nl. So back to square one