Ernie

Hi,

I have been wearing mine for ten years and they help a lot. It give me twice the standing time.

Hi,

Blood volume test.

I had 13 TTTs. The biggest changes are: HR from 60 to 229 with syncope.

BP from 120-80 to 210-170 to flatline and syncope.

Hi, I have it too. When I use my CPAP I am better.

Hi,

fainting, paralysis, diarrhea.

Hi,

I am the 11th of 12 children and only 9 have POTS.

Hi,

Do you have a depression?

Hi,

When I was fainting every time I was standing up I started to wear a helmet because I was having concussions. Now I only wear it when I am on a bad day or when I have to stop my meds for testing.

Hi, I live in a metropol but my disorder is genetic. I am at least the 4th generation. The first generation lived in the countryside.

I have to push myself, and then I ache everywhere. I have to sleep more to recuperate but my muscle are stronger, I can stand longer, I have better balance and I walk faster.

Hi Persephone,

I find also that as I get older my symptoms worsten and it take longer to recover.

Hi,

I avoid surgery because I get worse all the time.

Hi,

Get a second opinion with someone who is familiar with POTS.

Hi,

It's something like Shy-Dager.

I started to faint at 5 years old.

30 years

Hi,

Many of my doctors suggest it and I do exercise. I am afraid but I still do it.

Hi Corina,

I am so happy for you and your family that your are doing so much better. What a victory!

Hi Nina, Thanks. It took me a year of hard work to get there.

Hi Corina,

It's nice to see your face. You look young. It did not imagine you like that. It's funny our we think of someone and when we see them we have a nice surprise.

I hope you are doing well.

Hi,

I believe it is normal for us because our hormones have greater swings than non dysautonomia population.

Hi,

That's very encouraging to see that your son is progressing.

Hi,

Dr Stewart offered a follow up treatment to my son because we can't find any pediatrician in Montreal. His hypothesis is that our form of POTS is inflammatory because when he gave an antiinflammatory to my son his body behave better. He prescribed an antiinflammatory, nadol, procrit, compression hoses and cymbalta. We have to try each treatment one at a time so that we can see if it is working. He already gave the script for the BB.

So now we have to find a doctor that is willing to work with him and prescribed the medication that Dr Stewart suggested.

I will be seeing a new PCP for the whole family so maybe he will be willing.

Hi my friends,

We are just back from seeing Dr Julian Stewart at the New York Medical College for a week of autonomic testing with my son.

We are more than satisfied with that Stewart and his team. We got the diagnosis written black on white, school recommendation, treatment plan and much more.

It was really worth the money, the time and the energy to go and see him.

This week we are meeting with the school director and nurse to organize my son's accomodation (now that we have the documents that prove he has POTS).

Dr Stewart is very kind and knowledgeable.

Thanks for your support

:D :D

Hi,

Choose a day that you are menstruated.