Chiari Malformation Community
POTS
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POTS

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..
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620923_tn?1413427272

  Hi I do not have POTS so I ca not give u insight on meds and how they work, but the compression stockings should help as I know the blood puddles in the lower extremities and this is y so many pass out....did u get the stockings?
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3060676_tn?1371241540
I was on floricef to increase blood pressure and a beta blocker, Toporol to lower heart rate. It took me several (several) meds to finally find the one that worked, I tried SSRIs, midodrine, propanolol, etc. I did the stockings, and tried extra salt. I found that I needed to avoid heat, like hot showers, hot air. I would drink a lot of water when I felt like I was going to pass out. Eventually, the meds started helping, but I was on a high dose of floricef. I spent about 2-2.5 years with symptoms. I was able to ween off after I had no fainting episodes for a few months! It's been maybe 2 years since then and I have no symptoms! I hope you find something that works for you!!
Rhea
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4703993_tn?1379771988
Yes, I did get the stocking and may I say there are expensive!!
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4703993_tn?1379771988
Wow... Now I see what the doctor meant by trial and error with the medications.. When you were switching up meds were you also taking tilt table tests to see if they were working.  From my understanding I am going to use the Floricef 0.1 mg with compression stockings - then Feb 5th - another tilt table... If I pass out - then we try some other meds.  The Dr. say it is a very debilitating condition and 25% of people dx with POTS end up on permanent disability...
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1823499_tn?1370093889
I go for my tilt table test wed jan 23. I try to avoid passing out daily, numerous occasions. I'm terrified of the feeling so therefore I'm terrified of the test :(
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620923_tn?1413427272

  Didn't ur insurance cover them? I had them for a diff issue yrs ago and my ins cover the cost......they did not help me either and were difficult to get on...and off....

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4703993_tn?1379771988
No my insurance didn't cover them which is weird b/c my insurance is excellent - no co-pays on meds or dr visits... weird..
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4703993_tn?1379771988
Don't be scared.. the test itself isn't scary, but I like you know that feeling all too well of feeling like your going to pass out... they will monitor your blood pressure and heart rate very closely and know when you are going to pass out before you do - so they will lower the table.. but unfortunately you will still have that feeling of passing out, but remember you are surrounded by medical professionals so IF you do pass out - it is the best place to be and plus you will finally have a dx to why you feel the way you do and they can start to work on trying to help you feel better.. I have my next tilt table Feb. 5th and I am not looking forward to doing it all over again either, but its in our best interest...good luck and remember they monitor you very closely so try not to be too scared..you will be OK
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620923_tn?1413427272

  Send an appeal to ur ins to cover them, they r medically necessary so they should cover it.....

Find out the appeal process for ur ins and use it....get some money back !!
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4703993_tn?1379771988
I'll look into that.. thanks!
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3060676_tn?1371241540
I did not go for repeat tilt tests. I was averaging passing out 2 per day! Which means, some days I had no episodes and some days I passed out over 10-15 times! It was miserable! I had to move back home with my parents. But because I passed out so often, I didn't need a test to tell me if the meds weren't working! I even had a monitor implanted in my chest because the doctors thought there was no way POTS was that bad and could have been responsible for my episodes. But it was! I was labeled with POTS, neurocardiogenic syncope, vasovagal syndrome, dysautonomia, and others.  And after a while, we found the right meds and I knew the triggers. I know how rough it is, but keep hope alive that it will resolve! I still cannot believe how I have no symptoms now!
Best of luck on the 5th! Let us know how it goes!
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4703993_tn?1379771988
WOW.. that is a lot of times to be passing out!  I don't pass out nearly that much but constant near passing out episodes.  Along with the POTS I was diagnosed with vasovagal syndrome as well. The Dr. seemed very concerned because it only took me 5 minutes to pass out and according to him that was extraordinarily quick.. I am so glad you have no symptoms now that is great.  What meds are you taking and are you able to work now?
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3060676_tn?1371241540
It was a lot for a long time! Most of it was during the summer in Louisiana's hot, humid heat! That is pretty quick. I am no longer on any meds for that. I am taking all sorts for other issues, though. I can work if I want to, but I'm a full time graduate student, so I've no time! But I do take care of my grandma, which requires lots of squatting to standing (which almost always triggered an episode!).
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4703993_tn?1379771988
I got yah! I just recently graduated myself with a degree in the field I am currently working in.  My electrophysiologist did say that it is possible for POTS to resolve on its own, but statistically speaking 25% of people diagnosed with POTS end up on permanent disability... I pray I am not that 25%.  
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4703993_tn?1379771988
Hey I was wondering how your tilt table test went?

Also to everyone else - the Florinef is making me feel horrible! I gained 6 lbs in 5 days and got very swollen.  My electrophysiologist told me to cut the pill in half, but I just don't think it is agreeing with me at all.  It makes me feel extra tired and weak.  I'll let everyone know how the tilt table goes on the 5th...
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1823499_tn?1370093889
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
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Avatar_f_tn
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.
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4703993_tn?1379771988
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...
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4703993_tn?1379771988
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....
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Avatar_f_tn
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.
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4703993_tn?1379771988
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...
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1823499_tn?1370093889
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
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620923_tn?1413427272


  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.
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4703993_tn?1379771988
I see.. Thanks =) ...
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4489852_tn?1375757551
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!
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1823499_tn?1370093889
I am currntly on a beta blocker. So far its helpin my tachycardia, tho I still have near passing out episodes
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4703993_tn?1379771988
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....
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4703993_tn?1379771988
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.
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4489852_tn?1375757551
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!
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4703993_tn?1379771988
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.
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4703993_tn?1379771988
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!
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620923_tn?1413427272

  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....
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3060676_tn?1371241540
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!!
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4703993_tn?1379771988
Nothing was mentioned about EDS and I looked at the signs and symptoms online and I don't seem to fit the description....
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4703993_tn?1379771988
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 =/
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620923_tn?1413427272

  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.
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4703993_tn?1379771988
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?
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620923_tn?1413427272

  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.
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4703993_tn?1379771988
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
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