worknonjoy

Oh, it's so nice to talk to people who understand you! On the days that I have overdone it, there is no way I will sleep very much that night. I get my best sleep when I have basically rested most of the day. If I have done a lot, I really try to take a nap (in my case a couple of hours) so that I can sleep at night. My family thinks I'm nuts and I sort of thought it was weird as well!

Gee, you have so much of your spine that is problematic. I have much the same thing - don't know why, it's been that way since my 20's. I've tried almost everything and no pain medicine helped in the long run. I had anemia from the Celebrex causing bleeding in my stomach. Ultram is somewhat helpful. I can't take muscle relaxers as I will be unable to get out of bed for two days. Stronger pain meds only work for awhile and actually made the pain worse.

I recently had a procedure which I can't remember the name of since my brain fog is so bad. I can find out if anyone is interested. It was Radiofrequency on the nerves that come out of the spine. Radiofrequency is like burning I think. The nerves go to your muscles and that's what caused the pain my doctor told me. So this shuts them off in a way. I had it done a couple of months ago and was surprised how much it helped me. The nerves do regenerate and you have to go back a time or two. Eventually it lasts for a long time.

They put you under "twilight" anesthesia, probably some valium, but not heavy stuff. It doesn't take but 15 - 30 minutes and it doesn't hurt. Really reccomend it to those who have severe back pain and can't find good solutions.

I have POTS, OH, and I'm still trying to figure out which other things I was diagnosed with are actually true! An antibody was found in my blood that antagonizes m2 muscarinic receptors. Basically this antibody messes up the process of the brain sending messages to my heart, lungs, veins, and other smooth muscle tissue in my body. We found this in a study done at Johns Hopkins. M2 receptors are a fairly new discovery, I guess. I asked my neurologist about them because I was trying to do more research. She seemed kind of embarrassed that I knew as much about them as she did. It must be rare to have an antibody to m2 receptors because there is very little info on them online and I've never found anyone else with this antibody.

Rachel

So interesting! I have so many things wrong with my physical being (mentally I'm pretty good! ) I keep thinking that there must be something that has triggered all my problems. I'd love to go to someplace like Johns Hopkins and have them check everything out!

I'm curious what is the cause of everyone posting here for your POTS or OH or whatever (is there something else?) Is there one thing that is most common? My cardiologist said I had OH and then said it went with Mitral Valve Prolapse (which I have). I have CFIDS, so I know it goes with that. My neurologist though wants to find out exactly what caused it. What is everyone else's experience?

Thanks for the welcome and the info Lady Light & QS! Maybe it's a chicken or the egg deal, they somehow affect each other. I'll do some research and share what I can come up with.

Is there any connection between OH & Sleep Apnea? My lowest saturated oxygen level was 68 during my study, and I'm trying to get an answer why it was so low. Also my heart rate low was 26. I'd love to connect the dots somehow.

I'm not a doctor but you sound like you may have POTS and possibly orthostatic intolerant (depending on symptoms upon vital changes) but not necessarily Orthostatic hypotension. It's really hard to say based on the small amount of info that you gave us.

POTS

http://www.ndrf.org/PDF%20Files/pots_raj.pdf

O.H.

http://www.aafp.org/afp/20031215/2393.html

both

http://www.cfids.org/about-cfids/orthostatic-intolerance.asp

Orthostatic intolerance

http://www.nymc.edu/fhp/centers/syncope/or...intolerance.htm

http://www.mc.vanderbilt.edu/root/vumc.php...dc&doc=4788

Everyone is going to have a different opinion, even the experts to some degree.

I recommend research and reading, you will become your own best expert

Thanks so much for the articles. VERY helpful! I have CFIDS (16 years) and never knew that I might have OI like many PWC's until I have been close to fainting several times this year. Only by sitting down was I able to stay concious and that got me to look at my BP.

It's comical that you can get a diagnosis of orthostatic hypotension when your pressure drops to 100/80. During one doctor's appointment, mine started at about 100/60 sitting and dropped to "only" 85 for the top number. The doctor (an endocrinologist and a total idiot) told me that the systolic number has to drop 20 points to be OH, and mine dropped only 15, so therefore I wasn't sick.

Your pulse increase is large enough to be POTS, but your blood pressure goes from "prehypertension" to a reasonably normal value. So even though you do not technically have hypotension when you are standing up, you qualify for the diagnosis of orthostatic hypotension. So therefore you have OH, not POTS. I had genuine hypotension when I stood up, but I supposedly did not have orthostatic hypotension. And they think that they are smarter than I am, and thay maybe my problem is that I'm nuts?

I'm pretty sure I've had the same disease all along, and yet sometimes I have qualified for the diagnosis of OH (such as the day my standing blood pressure was 48 over undetectable) and most of the time lately I have qualified for a POTS diagnosis. So in my case, arguing about OH vs POTS is like the blind men arguing about the nature of the elephant. "The elephant is like a snake! No, it's like a spear! No, it's like a leaf! No, it's like a wall! No, it's like a tree! No, it's like a rope! No, it's soft and mushy!"

Have you had your blood volume tested? Your relatively high blood pressure readings may be a way of compensating for hypovolemia.

Thanks for the response. The weird thing is that I have high blood pressure. I have to take medication to control it. For instance this last time I was at the doctors, laying down my blood pressure was 175/85 and pulse 65. Sitting upit was 135/ 80 and standing it was 100/80, pulse 110.

I am having a hard time taking care of the high blood pressure without making my standing levels putting me on the floor.

When I get my regular bloodwork done, do they test the blood volume? Can one have hypovolemia for a long period of time?

Hi everyone! I'm new to the board and have a bunch of questions. First - what is the difference between POTS and Orthostatic Hypotension? I have been diagnosed with OH. My symptoms are that my blood pressure may be about 135/80 and heart rate 65 when sitting down. But when I stand up my blood pressure drops to about 100/80 and heart rate goes up to about 105. Thanks!