Ernie

Hi,

Welcome aboard. I take BB and it is helping me. You might start with a tiny dose and see how it goes.

Hi,

It was more difficult for me to get used to a wheelchair because I had to be pushed and I hate to depend on other people. When I got my powerchair and scooter I felt much better because then I could go out on my own.

I don't care if people look at me strange because my freedom is more important than what others believe.

Hi,

I agree that you could schedule the other ANS doctor and keep Dr Grubb. So if you can't make it to Grubb you have someone else.

Dr Grubb helped me a lot because he and Dr Goldstein are the ones who build my meds combo.

Hi Candace,

Do you feel that the kind of sleep you had during your study is similar to what you have at home? If not, you could ask for a repeat study.

Hi,

I can certainly relate to your experience!

I think that many of us would become better Dysautonomia specialist than many of them.

Hi Babette,

It was very stressful to go to Mayo alone as I was paying everything myself and if ever I would have been sent to the ER it would have been extra useless cost. So I was extremelly cautious. When I was out of meds I asked to be escorted to the different testing sites.

I know that a TTT cost from 2,000 to 7,000$ depending on what they do during the test. I would guess that you have between 7,000 and 15,000 $ of tests scheduled. I think you can call ahead of time and asked them.

Thanks

Hi Babette,

I had the QSART a few weeks ago. You just have to lie down on the table. They put a few patches on your body as well as some chemical product to see if your perspire. There is a small burning sensation.

The blood volume test is not painful. Again you are lying on the table and they take blood samples, inject an isotrop and take some blood again.

I did not have the other tests except many TTTs.

Good luck with your testing.

Hi,

I have POTS and NCS.

Sorry, I don't know any of the doctors in California.

Hi,

I had them in 2002. They inflated them after I was very tachyardic and it blocked my blood in in feet and my BP went to over 250/180 and I thought my head was going to explode. I felt much better after they deflated it. He concluded that compression hoses were not for me! Funny thing I went to see another specialist who gave me compression hoses and they help a lot.

Hi,

Welcome aboard.

I have tried Paxil but it made me much worst. I had to stop after a few days.

Have you tries compression hose or Proamatine?

Hi,

You might have blood pooling issues.

Hi,

I improved with salt and Procrit. It took a while before we found a good combo. I still have problems but nothing compared to what it was before.

Hi,

For 30 years doctors were telling me it was all in my head so I kept pushing. I remember going to work downtown and having to actually lie down on the sidewalk every 5 minutes to avoid fainting. I had to take the metro (subway) and I had to get out at every stop to lie down on the bench and wait for the next train. Then when I go to work I had to lie down under my desk for 15 minutes. Now that I have my diagnosis I don't push mysself like that anymore. I stop when I feel presyncopal and lie down on the couch.

I have to take sitting showers, but I can only take one a week. The other days I sponge wash.

My husband helps me with preparing meals and with the grocery. I can't do the housecleaning.

Hi,

I wrote other for the reason of stopping to work but the reason is that I was fainting 10 x a day.

Hi,

Are you taking BB? If no, then you could ask your doc for a script. If yes, you could ask to increase the dosage.

Hi,

You could always buy the Procrit in Canada because it is cheaper here.

Hi,

Please don't be disappointed you don't have an appointment with Dr Low. He was my main doctor, the one who admitted me there and I only saw him twice for 5 minutes. All the interview was done through his fellow.

I checked the temperature on the internet and I got really warm clothes because it was about 15F when I was there.

If you can recline in your car seat that would help you.

Mayo is very well organised, polite and ready to help you.

Good luck

Hi,

I take a BB with midodrine and I have no side effect of either meds.

Hi,

What about coaching her for some bed exercises at first and see how she does.

Hi,

I am not a doctor but I can tell you what I think it means.

1.Positive tilt table test for vasodepressor type: Your BP goes down when you stand up

2.Increased beta adrenergic sensitivity: your adrenaline receptors are more sensitive than normal to adrenaline

3.Abnormal epinephrine response: You react more strongly than your body should to adrenaline (from #2 comment)

4.Decreased beta reflex sensitivity: Your heart does not compensate well when you stand up

5.Normal intrinsic heart rate: Normal HR

6.The epinephrine blood work is still pending

7.Decreased alpha sensitivity with normal activity.: These receptors don't react enough even without straining.

I hope it helps.

Hi,

Wow, that's a new one. 2 TTTs on the same day. I would not want to be in your shoes. One is hard enough.

Thanks for sharing.

Hi,

My doctor did not say it in those words but I did ask him how much time it takes to get deconditioned and I told him that I had danced 6 hours the day before I got disabled. He wrote in his report that I was deconditioned. So I guess he answered indirectly. He was Dr Low's fellow. Can you believe that?

Thanks Flop,

I will call Mayo when I get the result to have either Dr Low or his fellow call me back.

Hi,

Well according to the number 1 syncope specialist, besides having Munchaussen I got deconditioned overnight. The day before I was disabled I danced 6 hours with my husband, which I would do regularly and the next day I was fainting everytime I stood up.

I have to watch my limits and follow them otherwise I get really sick. If I stop my meds I am back to square 1. So in my case there is never a better time. It's permanent and only partly controlled by meds.

Hi,

I don't know if I will be able to discuss the results with a doctor on the phone. That would be nice as I am sure I will not understand everything they say.