I'm A Newbe And Wanted To Say Hi.

[blhorn]

Greetings Everyone,

I am so thankful I've found this site and forum, I have felt so alone. I was Dx with POTS in Feb. 2007 and have basicly been in denial for 3 years, I've just become aware that I may not get better (just as in the front page article of the latest DINET newsletter. Pretty sad right

I was Dx by a doctor at the Mayo Clinic in Arizona and was under his care until he moved to the Rochester Mayo Clinic in the end of 2008. I have searched through all the lists of doctors I have been able to find and there is no reference to a doctor in Utah. Is there anyone out there who sees a POTS doctor in Utah? I have not been able to find one on my own.

Thank you for your help in advance.

[Guest tearose]

Welcome to our world! Do not feel your are alone. You can learn a lot here and find support.

Denial is an early form of holding onto hope that you will "get all better" and this POTS stuff will have just been a blip on the screen of your life. For some, they do get better. Keep hoping for better and meanwhile, try to tweak whatever treatment plan you have.

[potsgirl]

Greetings blhorn~

We're glad you found our forum, and you're most welcome to join us in discussion, ask questions, share information, and just be a part of our group. I'm in Arizona, and I also started the process of diagnosis at the Mayo Clinic in Scottsdale with a doctor who ended up moving to Rochester before my testing was complete. I ended up going to Rochester to finish my testing with the same doctor. Hmmm, wonder if it was the same one? Initials Dr. BG?

You may be interested to hear that Mayo has changed their definition of 'POTS' as not including those who have major drops in BP when they stand. Their ultimate definition is an increase in HR of 30+ points, or at least hitting 120, without a major drop in BP. That means that your BP would stay within about 15 points when you stand, either going up or down. If you have a major BP drop like you write in your post, you may be more likely to have another form of dysautonomia called orthostatic intolerance/ortho hypotension, which is what I have. I'm also a fainter. How about you before your meds?

Anyway, we're looking forward to your posts and getting to know you better!

Cheers,

Jana

[blhorn]

Thanks for the welcome Tearose and Potsgirl.

Potsgirl,

It was definitely Dr. BG...The last time I saw him he was growing a beard...I thought that was odd for the heat of Phoenix but... Then I call one month later and hear he's moved to Rochester and all I could think is "He knew he was leaving and didn't tell me...How Rude!"

To answer your question before meds I was fine one day and then on my husband?s birthday in July 2006 I got this terrible headache (no history of migraines) and my lips started this weird burning. The lip thing went away within in a day or two but the headache remained. Initially I had no increase in heart rate.

For the first week or two it was just the headache all day every day, then my BP started to tank, I would get light-headed, I fell in the shower like 3 times (never actually fainted), was bloated (I had already been Dx?ed with gastroparesis), I was very fatigued, and I found I had the ?brain fog?. The ?brain fog? was especially not good because I?m a Registered Nurse.

I went to a million docs and by the time I went to the Mayo in Phoenix a year later my BP was holding steady at 100/70?s but then orthostatic tachycardia started. With my tilt table test my HR went from 75 to 115, my BP stayed basically the same. That is when the neurologist at the Mayo clinic that I was seeing said I had to see Dr. BG. When I got in to see him, 2 months later (I live in Utah?long drive), he Dx?ed me with POTS, I also saw the headache specialist there and he Dx?ed me with ?new daily persistent headache? which is sort of similar to a migraine but never goes away.

Now on the meds, salt and H2O I?m still dizzy but not nearly as bad, still very fatigued, very cloudy thinking, chest pain, and still have the headache. I try to keep a good attitude but it has been hard lately since I just realized (stupid) I?m not getting better like I thought I would.

Sorry for the novel,

blhorn

[Noreen]

Welcome Blhorn-

This is one terrific group and I am happy you found it.

I am looking forward to your posts and hope you can educate me on how to deal with heat and sun intolerance. Or, perhaps, we will all learn together.

Hope you have a joy filled weekend,

Noreen