cattale

I'm leaving home for Vanderbilt Autonomic clinic for my appt on Tuesday. I was initially diagnosed with Ehlers-Danlos III & POTS, but now it's looking like the POTS is only part of it. I'm in Pure Autonomic failure and going to see if they can help. Does anyone here know of anyone close to you who's had or has PAF? If so I would like to chat with you at your convienence. When I get on Wed., i'll let you know how it went. Thanks.

Hi everyone, thanks for the stories. Unfortunately, i'm afraid it's going to make sick as a dog. I'll try to be optimistic, though. Thanks for the links to check out, too. I'm going to buzz you Sunfish regarding the Vanderbilt trip.

I have a bad case of POTS and possible Autonomic FAilure. I have to travel to TN in October to the Vanderbilt Clinic, and i'm not sure how flying effects us. Can people with Autonomic Dysfunction fly safely, or is it dangerous?

Hi Dayna, i'm Catherine. Mine falls into a pattern as well. I have 3 bad weeks and one good week. My pattern has been that way for about 3 years now. I believe it to be related to estrogen levels changing in the body from menstruation. I'm asking my doctors to stop my cycle(no hysterectomy) to see if the symptoms aren't as bad. Foods are a big culprit, but when it's routine like this, it's looking to be hormonal related. They need to check your estrogen levels when your down, when your feeling good, and on the way down....so they can see the progression. Good luck, we both need it!

I was born with Chickenpox(VZV) and given HSV 2 in 1999. Since then I've had severe autonomic dysfunction, and believe it be progressing. I'm due to see an Autonomic Center in the fall, and was wondering if the Chickenpox started the autonomic dysfunction and the HSV 2 made it worse. I did read that the Herpes virus of any kind could cause Autonomic dysfunction. If this is the case, couldn't both of these infections of caused Pure Autonomic Failure? My symptoms are severe causing monthly UTI's, head&neck pains, POTS, sexual dysfunction, chronic weight loss, and the list goes on. Does anyone know more about this to maybe help me out? Thanks!

I was diagnosed with POTS in January 05', but now they see I was right when I said, it has been progressing with my years. My 3 children were born with this, as I and they are progressing as well. Does anyone here have PAF or know much about treatment if there is one? I go to the Mayo Clinic Thrusday to see my Neurologist and would like some ammo to take with me. Thanks! Catherine

I was wondering if this happens to anyone else here. I had a tremendously huge stressful week and yesterday was the clincher. Today I am soooo cold, with a migraine and can't hardly breath. I can't even eat, because I lose my breath. My hypersensitivities are so bad, I can barely eat when I can breath. Am I the only one?

What if we contacted Montel Williams show or Maury Povich? Something like that might help, ay?

Is there any kind of Annual Conference for anything like this? I"m interested in joing up if there is?

Jessica try Ward White and Associates in Tarpon Springs, Fl. I had no insurance and no help until I went to them. I am now permanent Disability and SSI, so insurance will never be a problem. I've been unable to work since 1999, and this was alot of pressure of me and the kids. Now my kids are getting the same thing, so we can go anywhere in the country for medical attention. You may want to consider this, plus you can still work and go to school.

I noticed I was much better during pregnancy, but really ill before and after. Has anyone tried any kind of hormone therapy to lessen symptoms? I'm going to ask them to stop my menstrual cycle, because it actually makes it much, much worse. If you have tried hormones, let me know how you did, or are doing. Thanks

Thank you for asking. We had power restored yesterday which was a beautiful thing. Little damage, alot of wind, minor flooding, but the no power for a day and half was awful in this heat. Thank you Power company workers, We Love you in Florida! We were very fortunate.....again. Third one, that's good odds.

HI everyone, i'm Cattale. I have many questions, but i'll start with a reader's digest version of our story. My 3 daughters and myself were all diagnosed with Ehlers-Danlos type III by a geneticist, but other things were happening to us that still was unclear. I am the sickest out of the bunch, but my middle daughter is a strong second. I'm going through testing now for POTS, but I would feel much better having this done by someone who is familiar with it. I already see University doctors, but they move like molassess here in Florida! In the last 7 years, the only way we have been surviving from our symptoms is a dairy, wheat, gluten free diet and lots of rest. My question to anyone out there is: Are your hypersensitivities so bad your allergic to almost everything? It's to the point, I cannot eat anything, smell anything, or be outside for a long duration. Please tell me the can lessen the hypersensitivities? I've been reading alot here, and it seems that I finally may have found people like us, if this is true? I couldn't be more relieved or happy. Thanks for your ears, everyone else thinks i'm nuts!