JulieS

I think it's possible to have reactions that aren't listed as side effects. My son got a rash that looked like a severe chemical burn on his legs. (bright red and very painful.) This was from the antibiotic Zythromax. The drs. said it would not cause this type of rash. But it got worse after the 2nd dose, so we had to assume this was the cause. I also have had many reactions not listed as side effects. So, I don't think you are overreacting. I Hope all is well with you. Julie S.

I get this pain too. It feels like someone is cutting me. The family dr. keeps telling me it's Fibromalgia. But it is definitely related to the blood pooling. I have noticed it being much worse when I had my worst spells. (which for me have been when I reacted to medications. ) What is EDS? Julie

The tilt table test for me was very hard. My blood pressure dropped and I passed out in 4 minutes. But before I passed out, I was crying and begging her to stop it, and saying that I couldn't take it anymore. I think it was just as bad as childbirth for me. And I hope I never have to get another one. Julie

Nina, Yes, it is Dr. Goodkin that I see. I actually just had my first visit with him on Feb. 10. But he seems wonderful. Did he do anything that helped you? Jackie The dr. told me the cranial osteopathy is a form of manipulation ( but different that what a chiropracter would do.) Some people with POTS have brain stem compression into the spine.(or something like that), and if this is the case the cranial osteopathy would help to "fix this." I am hoping it helps me. I will keep you posted. I have been having a lot of neck pain, especially on days that I have to do alot to take care of my kids. Then my neck hurts so bad for a few days and I sometimes feel like I can't hold my head up. The dr. I'm going to see is a D.O. Like Nina said, this is not a proven treatment for POTs, but none of the other treatments have helped me so far. Florinef, Midodrine, and SSRIs have made me worse.. So, I'm very hopeful that this will help me. Julie

Hi, I am new here. I was diagnosed with POTS in Oct. and have responded poorly to all medications they have tried. Florinef, Midodrine, beta blockers, Paxil, Prozac. All these medications made me feel much worse. So, my cardiologist wants my to try cranial osteopathy. He said this is actually where he has seen the most success with his POTS patients. His daughter actually recovered from POTs with the cranial osteopathy. Has anyone ever heard of this? thanks Julie

Hi Jackie, I just wanted to tell you what a wonderful dr. said to me about this anxiety thing. I was admitted to the hospital back in Sept. when this whole thing started, and I saw all kinds of doctors. Then they sent the psychiatric dr. in and she was telling me that it was anxiety. I didn't believe her because I know how real this whole horrible thing is, but what could I do. Then the cardioligist came in and saw how bad my arrhythmia and tachycardia were. And he said there is something physically wrong with you. The heart would not do this with anxiety. Then in Oct., a cardioligist diagnosed me with Orthostatic Hypotension and Tachycardia. And he sat down with me and explained that I am not crazy. This is a very real physical condition, and it is not from anxiety. I hadn't even told him what the other dr.s had said. But I guess he knew that people with this are often told that it is anxiety. Anyway, I am so thankful that he took the time to tell me this. I find sometimes when I am standing up too long, is when I have these "panic attacks. " , and I think it's because my brain isn't getting enough oxygen. I hope you feel better soon. Julie