Well, they did the initial referral for the research program in October (I think) of last year and I had the appointment scheduled for January 22nd. However, once they started looking at my records and medications more, they decided I was not a good candidate for the research program and told me they would rather I come for a clinic visit. By this time it was already early January. So when they called to schedule the appointment, the first available appointment was October of this year!! I was so disappointed because I had already waited so long and I was ready to go! But then they went ahead and put me on the 'call list' in the event there was a cancellation. Thankfully, they had a cancellation not long after they made my appointment and they were able to move me up to March.

If I were you, I would try to get your referral going ASAP. It usually takes several months to get in at Vandy or any other facility like it. I would also really consider getting another physician involved if your's is not returning your calls promptly. That is just not good!

I know you are frustrated, I can't even begin to imagine. Do you not have any family or friends who could help you with your financial situation?? What state do you live in (you don't have to answer if you don't want to)??? Can you get any kind of government assistance??

Check out those sites I listed before. There are a lot of people who are in your exact situation and can give you a lot of advice. They come from all different states and there are lists of providers who have lots of experience with our condition and maybe someone can help you find a good provider near you who can help you until you can get into Vandy or a similar facility.

Good luck and let me know what I can do to help.

{{HUGS}}

I never thought of compression stockings but... I have bilateral frozen shoulders and suspected myasthenia gravis... my arms are so weak that I cannot even get on regular panty hose! I tried once to go to a party and it was a pathetic failure...
I get regular stress tests and EKGs and echocardiograms and halters on demand... but the TTT, no, but based on all this, I think I will push for it. A friend of mine who has been uncannily similar has had it and also passed out so I have been afraid.
So tired of doctors. Thanks for the sites. I will check them out. I am registered already at one as one of my cushing's buddies already told me about it a while ago. Thanks.

Hello. I have been diagnosed with dysautonomia about 1998 had fainted occasionally since the age of 7 yrs old chalked it up to stress but then got anorexia which damages the vagus nerve more and was fainted almost everyday sometimes 3-4 times a day. They said it was due to the anorexia and if I gained weight I would be fine. I went to treatment for the ED but kicked out since they thought I was cheating because i was fainting all the time still. Came home got sent to a cardiologist had a tilt table test and was diagnosed with neurocardiogenic syncope with bad bradicardia had to get a pacemaker in 99 then I stopped fainting for 2 months and it returned but not as often then the tachacardias showed up but only like 180 bpm at rest but when it hit 260 at rest the had to do an ablation so I still faint and may need another ablation. I am part of dreams and if you go to youtube POTS go to Sarah the marine who has had a bad case and she explains it very well. The vegus nerve does so much for the body everything seems to go out of whack like gastroparesis where your stomach is parlized. What helps me most is myspace and facebook because the have groups and people who understand. You cannot believe some of the ER doc etc that accuse you of faking when it is a fainting thing unbelievable esp when I have a tramatic brain injury from a faint down a flight of stairs. I am new here but came across it trying to find good articles to explain it to my friends who don't get it esp the tiredness after a faint etc.

I asked the cardiologist for a TTT and she said...NO. She said it would be positive. So why bother. LOL...
I do wear compression stockings from time to time but I am weak (some neuromuscular thing) and have a hard time getting them on - plus I have to wear above the knee ones... dang, they are hard.
I missed your post! Sorry...

Hi my name is gillyann,i read your story and wanted to reply as i too have severe low red blood cells and plasma..i am bedridden because of it due to pots syndrome..i am on fludrocortisone 0.2mg and have just started on epo injections 10,000 units for the red blood cells..you have been the only person that i have read to have low blood volume and just wanted to ask has anything helped you i have been bedridden for 5 years now

Hi wow i cant tell you guys how happy iam to have found neurotalk Im 17 and have been recently diagosed with neurocardiogenic syncope like you guys but nothing has worked for me im on florinef labeltol and have tried other medications midodrine and zoloft i also have compression stalking that dont work lol but im very interested in starting a chat!

Hi all, I had a tilt table test on Tuesday, 10-27-09 and passed out. Thus, I have Dysautonomia. What kind remains to be see.

Looking forward to having other people here to talk about this disease. I am worn out from battling it. But I am hoping that the docs can find some effective meds soon and I get some relief.

Keep this thread going--this is a difficult disease to live with and some of the cardiac problems can cause sudden death--nothing to mess with.

HUGS
lifesaver

Hey There,
I am 27 and have had POTS for many years and it has been quite debilitating. I have been out to Cleveland Clinic after years of being told it was "just stress" finally have some answers, but not much in the way of follow up. I also had nuclear tests, tilts, etc ... all revealing similar results to yours. I have low blood volume and low red blood cell counts, but after 2 months the Dr. has not addressed these results, just increased my beta blocker, I have no follow up visits scheduled, and that appears to be the only way I will get answers. My insurance has changed so it's not an option at this point. I have a 2 year old son that I need to be healthy for so I'm on here searching for answers. My iron levels are generally fine, so the red blood cell count thing (anemia) seems to be attributed to something else ...my PCP is not helpful either.

I was wondering what they have you doing to increase red blood cell levels and what their explanation for you is. Are they telling you are anemic but in some other "non-iron" related way? I am on a high salt diet, support stockings, etc. Knowing what they are doing to help you would be wonderful to hear. Since I have very similar findings and not alot of advice
Take Care!

I do not have POTS we do not think but they believe it is neurocardiogenic syncope. Still trying to figure out how to live with this. How is your husband?

I know that the first message wasn't for me but I wanted to say things about my life and share what I know about fainting. The first time that I remember fainting I was 8 years old (I am in my early 30s now). I just had a birthday party and had come home from the party and was opening my gifts. I used a pair of scissors to cut something and accidentally cut my finger. I went to the bathroom and the blood was coming out fast from my finger. I called my Aunt and she took care of my finger and dragged me to a chair in which I fainted.

Since then, I have fainted a numerous amount of times. It wasn't until I fainted in front of a boyfriend that I learned fainting wasn't normal. So, it took about a year after that to find out what I had. I have Neurocardiogenic Syncope or NCS. I had a tilt table test done. My bp dropped to 60/28. The doctors first put me on Metropolol which made my hair fall out. They always wanted to give me Meclizine for the dizziness. I finally found a great doctor in Brooklyn, NY at Lutheran Medical Center named Dr. Ngo. She had me see another cardiologist after finding an AV block when I was sleeping to see if I needed a pacemaker. I did an EPS study to check my heart and I never felt it beat that fast, plus they said my heart was healthy. So now I take a medication called Midodrine. I asked the pharmacist how high should my bp be when taking it and how high is too high. She said 140/90 is the highest it should be. So, we shall see how well this med works for me. So far so good...