dakota

On behalf of my daughter (age 15) who is the one in the family with POTS:

1. Very large pupils, almost no iris showing

2. Feels like there is a lot of pressure in her head

3. Hand is darker and mottled, slightly colder and tingling

I am just back from the CVS where I picked them up for $7.69. They had to be special ordered, though, as they don't regularly stock them.

I found this in an article by Grubb:

http://www.circ.ahajournals.org/cgi/content/full/117/21/2814

"Although it is difficult to determine the true prevalence of POTS, current estimates suggest that at least 500 000 patients are

affected by the disorder in the United States alone. Of this total, 25% are disabled and unable to work."

He is citing another article that I have not read yet (as I have to head off to work):

Goldstein D, Robertson D, Esler M, Straus S, Eisenhofer G. Dysautonomias: clinical disorders of the autonomic nervous System.

Ann Intern Med. 2002;137:753?763

Hugs for you, KeXia!!

You are not alone out there. You have a whole group of people here who understand what you are going through and are here for you to talk with. I'm very sorry to hear all that has happened to you. It can't be easy. Your plans are not far fetched. They may not be easy to attain, but they are goals that you can reach toward. Living with dysautonomia is not easy, but you have made it through a lot of years of this already and you can make it through this.

Know that there are lots of people out there wishing you well and sending you strength and positive energy!!

I've been a vegetarian for 37 years. My kids are vegetarian. The one who is the healthy eater has POTS, the other one does not. Go figure.

Thank you for this, Nina. This may also be helpful to bring along when applying for disability.

I'm brining nachos and a large rainbow.

I hope your appointment went well and that the doc had some ideas for you.

Is your POTS specialist a cardiologist? I would think he would want to check into the palpitations to rule out any other possible causes of that. I have pretty much constant palpitations, too, and am currently on a beta blocker. I have ventricular ectopic beat. The beta blocker doesn't eliminate the problem, but it definitely helps a lot.

I am not a Georgia peach yet, but I hope to be one soon!

One of my main concerns is finding a doctor for my daughter and making sure that our insurance will transfer or that the insurance I will get will cover her. Moving is a lot harder when you factor in those considerations.

Maisie, do let us know how your appointment with Dr. Leon goes. I had thought that there must be someone at Emory who deals with dysautonomia and hopefully you have found someone who does.

That was great, Tachy. I am impressed every day with the talent, humor, brainpower and compassion of the people on these boards.

Ramakentesh, I love your "Beware of Gravity" avatar!

I once asked my daughter (who has POTS and cannot attend school) if her friends knew anything about POTS or even knew what she had. She said most of them just think that she is lazy. That really made me feel bad. She said they don't want to hear about her health and I think she doesn't want to sound whiny or be thought of as disabled. So she does what she can with them when she is able, and keeps in touch over the internet and phone. I think a lot of teenagers, well, not only teenagers, everybody, are rather self absorbed and have a hard time realizing that other people might have health issues when they appear to look just fine.

Erik,

Thank you so much for those links. From there, I searched for related articles and now I have my work cut out for me in reading all of them. They are most helpful. I am still trying to find a cardiologist who says more than "there is nothing else we can do for your daughter" and reading this material helps me know a lot more than what the doctors are telling me. I'm thinking perhaps I ought to send the links to them! Many thanks. It so nice to find a place where so many people share information.

~ dakota

Thanks for the website, thankful. I just looked there. Do you (or does anyone else) have a brand preference? I see the prices vary greatly and I wasn't sure if one brand was better than another.

~ dakota

I am by no means medically inclined, but the blood in your urine and back and abdominal pain are some of the symptoms of kidney stones, but I'm sure they have checked you for that. I don't have any other ideas than that, but I hope that you can find out soon what is going on!

I am so sorry to hear that you have come down with H1N1! I don't really have any good information, but I have heard that Tamiflu can really help if you get it soon enough. And hopefully the antibiotics that you are now on will ward off any further infections that the flu can cause like pneumonia. Good luck to you and I hope you feel better soon!!

~dakota

My daughter is on propranolol and midodrine. She started first on propranolol, increasing to her current dosage of 120/day. Then they added midrodine and increased the dosage until it's current state of 10 mg/3 times a day. She has had good luck with both of these meds and doesn't seem to have any problems with the two combined.

I found this doctor's name on a Physician Specialty listing of the American Autonomic Society.

http://www.mc.vanderbilt.edu/gcrc/aas/AAS_...by_state.htm#MB

I don't know whether or not he could help you, but perhaps he could direct you to someone who could. Good luck in your doctor search!

Dr. Kountouris Dimitrios

Michalakopoulou 45

Athens 11528

Greece

Phone: 0030-1-7257613

Fax: 0030-1-7252694

E-mail: dkount@otenet.gr

Multiple System Atrophy (Shy-Drager Syndrome)

Aren't you sweet! May your kindness come back to you tenfold!

My daughter is on propranolol and midodrine, and I often wonder the same thing! She started on just propranolol and the midodrine was added later. I agree, it is nice when you don't start them both at once, so that you can see the effect that each one is having on it's own. They do both help in different ways and end up working well together, although I think there could still be a little adjustment in my daughter's case. She has not had a TTT but is seeing a new cardiologist in 3 weeks, and I think the fact that she is on these meds will no doubt have a major affect on the TTT. I am hoping that if nothing else, it will help to tell us how we can adjust the meds. It's too bad that you couldn't get the TTT before you started the meds, on the other hand, I don't know if I'd wait before starting them if your symptoms are really bad.

My daughter lasted less than a week before we had to take her off it.

I also think the brain games are a great idea.

My daughter who has POTS is also very bright and was an avid reader. Now she says when she tries to read, she sometimes finds herself just staring at the page. She is still in school (or would be if she could attend -- she has a teacher come to the house), so she needs to read books for school. I plan on trying books on tape for her, when the ones she needs become available. If you enjoyed books and can't read, maybe you can at least listen to some on tape. It's not the same as reading, but would still require some concentration, just not quite as much, I don't think.

Best of luck to you!