skyblu

Not really. It can get to me more when I'm having a lot of bad days a row. Or when it's beautiful out side and I'm feelig too sick to enjoy it. As for meds...I'm only on Ativan for sleep. I've been on it for many years and I'd eventually like to get off of it. I was on Florinef for a few years and I think I felt better while on it. Unfortunately, I was getting too many BP spikes and had to stop taking it.

LOL..you can say that again, Maxine Anyhow...I agree...neurologists should have a basic understanding regarding problems of the ANS. I haven't found one yet who does. Erika....do you also have medicare?

Thanks for the link.

Thanks for your replies. And thank you Flop for the explanation. It helps to undertand why this pain keeps happening. I lay down for a while and noticed the pain went away. LOL...I loved your reply Sara...."a doctor who isn't afraid to google" How rare is that?

Does anyone else experience "coat hanger pain"... it's the reallly bad pain that goes up your shoulder, the back of your neck and head. I've seen some websites which say it can be related to dysautonomia and OI. I assumed there might be some other causes like disk herniation or muscle spasms. Anyhow....I went to a neurologist last week who claimed she doesn't deal with neck pain, the brain, dysautonomia etc...... Don't ask what she does deal with ....cause it sure ain't much. She proved herself to be totally useless. So, I still have no clue as to what's causing my pain which I now have all the time and I can't seem to find any relief from it. Including using heat wraps. Has anyone found anything that helps with this kind of pain? Thanks

Yes..I think it's better to have BP and HR stable even if it's on the low side. My BP and HR have become more erratic over the last few years and I'm sure that's why I feel worse then I did several years ago.

Yes.....for some reason I was symptom free or pretty close to it on Saturday. First time in months where I spent a whole day actually feeling pretty good. And I have no clue as to why. My BP and HR were running very low all day and yet I felt OK. I'm thinking perhaps it was because my BP and HR stayed low...no spikes and crashes or erratic readings. Anyhow it was nice while it lasted. I'm back to feeling crappy again.

Has she been checked for seizures?

I can go through phases where my BP runs on the high side. That recently happened to me after I got a virus. My BP ran high during the virus and for about 3 months after I recovered. I'd get readings like 140/96 when my BP is normally 90/65 or 80/50. I stopped taking in extra salt and then out of nowhere my BP started running more on the low side again. I didn't feel any better when my BP ran high, in fact I might have even felt worse. I don't understand it all.

Maxine, I feel for you...I need to have a colonoscopy as wlll and keep putting it off. I tried to do one last yeer and didn't even make it to the prep. I was so weak from just the liquid fast . I found a place here that does the Virtual Colonoscopy...they agreed I can do the regular colonoscopy prep but...there was contrast thing I'd have to drink as well. Anyhow...I wish they'd come up with less invasive test that didn't require fasting or a prep.. ...or a scope.

Me too.

For years having one glass of wine before dinner made me feel better. It kind of cut the edge off of things and just made me feel "good". I got a nasty virus for 6 weeks over the holidays and after that I didn't seem to do too well with my glass of wine. One night, several months ago I got very tachy after drinking less than half of a glass and I haven't had any since.