bellajulz

Is your blood pressure high? This was happening to me too, but one doc suggested it was my bp being high upon waking, as my bp fluctuates between high and low.

We need RSVP'S for Saturday, April 9th @ 1:30 at 83rd ave / bell restaurant in Peoria. Please reply asap if you are able to attend.

I thought we could meet at Cheese cake Factory?

Viviana

So does April 9 th work for everyone? In Glendale at 83ave/ Bell? At 1:00?

Im happy your feeling better Issie... im in for meeting, count me in... :-)

I can't drive that far either but can hitch a ride also.. early evening works best for me... maybe at a nice restuarant? Im coming from Surprise, but def worth the drive .. how's April 9th?

How does something in early April on a Saturday in phoenix sound? Before weather gets too hot..

I am definatley up for a get together!

Avais1,

Just curious what does work for you?

Momdi,

Im using a company referred by my LTD from work... they are out of state but so far very pleasant. Number is 781-246-8975

Hi Dani,

What kind of treatment does he have you on ?

Looking for Phoenix area pots patients to compare doctor information... Does anyone have a good doc that is worth referring? How familiar is your doctor with treating pots? Any other information that is pertinent to the phoenix area.

Thanks ahead of time!

Futurehope,

I agree because it was obviously too much for me and actually set me back a few months.. though now im beginning to have a few good days and will try exercising slowly...

Thanks for sharing video it is definitely encouraging to hear. My cardio found out about the sucess rate of this study and started me on cardiac rehab back in august 2010... I did 5 minutes on 3 different sit down machines with constant monitoring of my bp and hr... after a few weeks I was unable to continue due to my fainting after each session ... though now I am stable enough to where I am doing light exercises at home. I definitely believe there is alot of potential in exercising to get somewhat more functional.

How are you doing today? I will be praying for you... I know when I am feeling especially down I have Gods grace to get me through another day... which I know you do too. This illness does strip us of the lives we may have wanted, but what works for me is taking it one day at a time and doing my best for the moment everything else will eventually work its way out.

V

I have been told b12 may help.. though I have yet to try it.. I am pretty much like you in the fatigue area and would love some energy.. best of luck!

Thank you.. apreciate it.. as the days pass I am realizing that if this is an issue I may have its more of a secondary .. as I do not have breathing issues prior to fainting its immediately after. I do not feel like an anxious person, but im sure I probably have some traits free everything I've gone through.. I will check out the article and post again when I see a new Nuerologist on tues. Who is supposed to advised 1st doc if he agrees with new diagnosis.

Thanks for your input... I don't hyperventilate or have breathing issues prior to fainting only after. I just feel frustrated, though my family is happy at the possibility if my not having pots. I really don't buy it, but am so tired of being sick. This appointment was my last shot at conventional medicine... just needed to get some input.

Thanks ladies for your replies... I have had 2 ttt one in dec. 08 and jan. 09 at mayo both were positive within 10 minutes because of vitals and I passed out in one. The doc yesterday said it was because of stress of having testing done. As far as meds I was passing out daily and midodrine has helped to where

I have been able to control fainting better, I've called it my lifeline. The other meds I do see improvement though my health isnt the greatest, Im not sure if I should go forward with this doc???

I was diagnosed with pots in Dec. 08.' Which I pretty much have classic symptoms, I am a fainter which led to a quick diagnosis for me of only 2 months. I went to a new neurologist today who gave me his diagnosis of 'Hyperventilation Syndrome '. Which pretty much has same symptoms as pots, he wants me to stop all meds and start anxiety med. He said to think it over and see him next week.

Has anyone been given this diagnosis? Any and all input would help as I feel so lost right now.

I take both 10mg midodrine 3x's day and florinef .01 once a day... I haven't had any issues. I am curious as to what side effects your doctor mentioned, as my doctor didn't mention any.

I completely agree and tried to look this info up myself. Yesterday I came across a youtube channel with a Doctor who has pots and is working on starting a non-profit in California. Here is a link to a news segment on her and Pots also if you look at her channel she has video on her progress to start a non-profit. Her name is Margaret Aranda-Ferrante.

My cardio wants to start me on cardia rehab based on a new study that was found to have helped pots patients... here is the link, it seems promising.

http://content.onlinejacc.org/cgi/content/short/55/25/2858

I was bedridden for about 8 or so months and on and off since I was diagnosed in Dec. 08'. I can now on a good day walk around a store w/o a wheelchair for about 45 mins to an hour and sit up for 3-4 hours at a time. I have improved greatly, I believe it was beause even on my worse days I would push myself to walk around the house for a few minutes at a time, and increase it as much as I could. Keep in mind I am a fainter so at times this could mean just to the bathroom and back. My will to not give up and allow pots overtake me compltelly has given me the fight to keep pushing. I can now drive around town and do the simple things I once missed. I make sure to take my meds, stretch when I have the stamina and eat properly and drink lots of water. I still have days that I can't do very much, but when I have even a pea drop of energy I use it to be up and movin . This has worked for me, not sure your exact circumstance or health condition but for me it's been half mental battle. My faith in God has kept me going! Hope this helps.

I'm in the west valley of Phoenix, I am definatley interested.

I too am very sensitive too meds so I relate to your concerns, but I am able to do both the propranolol along w/ xanax. I take 20mg 2x a day and my xanax is 0.5 and I do half as it does make me sleepy. (I also take Midodrine) This combo works very well for me... hope this helps!