gjensen

If I could actually get to sleep, I would get a sleep test. I can't get passed the transition. Sir Digby, good luck. I know how precious sleep is.

My heart rate seams restrained of late, but my blood pressure is especially bad upon standing. Like I am trading one for the other. Today, I am horribly dizzy. Bad enough where I cannot sit up. My lips are a purple shade. I keep getting the shakes. Can't decide if this is the new drug, or a new twist. I can't even get myself to the bathroom.

Trappeddat, your numbers does not show a failure. That is good. What I experience is a series of over reactions and over reactions to the over reaction. Eventually it levels out. Until I do something. LOL. A failure would be heading one way and no compensation. Like in Baroreflex failure. There is no response to bring it back in check. Or Autonomic failure where the blood pressure crashes, but there is no heart rate response to compensate upon standing. Definitely get in front of a subspecialist in these disorders. Keep reading through this website, and keep asking questions. This is new to me, but there is many helpful knowledgeable people on this site.

I do not have any tips. I get dizzy upon standing, and my brain fog comes with standing too long. When I stand for lengths of time, and push it, I pay for it with an assortment of "brain symptoms". This can last for a day or more. I do not get the itchiness, but if I stand too long I am more likely to have my hot flashes and they last. My blood pressure stay up with these hot flashes, and I am hot to the touch. My temperature is normal or low though.

I started on a beta blocker, and it did exaggerate my breathing problems. I dropped it. This started before the beta blocker, and has continued after. This breathing problem that I am describing here is something wrong with my system kicking in on rising CO2 levels. That is my theory anyways. I can't think of an explanation of the stuff that comes along with it. I wish it could be explained that easily. It would be easy to eliminate it.

Thank you very much DustBunni. I will gladly accept the hug. I will admit that it is scary. If I understood the process better, it would not bother me as much as it does.

DustBunni, I can relate. I cannot sleep on either side. Frustrating because that is how I want to sleep. First it was one side then both. Most of my issues are at the sleep transition. For whatever reason I struggle starting the automatic breathing. Along with that it seams I get an esophagus spasm. I wake up not breathing, heart racing, and I cannot get relief until I can manage a swallow. For whatever reason I cannot swallow when I wake up like this. Like something locks up. It takes me some real effort to get my lungs filled up, after the swallow. Might sound weird, but . . . . All I can do is describe how it feels. I do wake up with these issues at other times, but most of the problem is at the beginning. My teeth chattering is also part of this. My teeth chatter when I get relaxed enough. I can have the breathing problems from being tired and relaxing as well. I would love to get back on a reasonable sleep schedule. That would be a big step back towards some normalcy. I hate waking up and the boys are gone for the day.Some nights I just give up and stay awake so that I can see them off. I have went a few days with just a few hours of sleep.

I seam to remember reading something about bystolic and diabetes/blood sugar. I would look it up and see if that might contribute to your problem.

OK. The doctor's note is that we should wait for the rest of the labs to come in before we try to draw conclusions. Apparently some healthy people test positive. There are two ANA tests listed. One just shows that it is positive. The other is a panel and has more specific results. My result is 1:160. Antibody 1, Speckled.

Also, if it could be made specific.. . . this doctor will chase it until the road comes to a dead end. Probably more tests . . . lol.

Dave, I do not think they were specific. I have not discussed it with the doctor. The results were on my "Duke chart" (web page) when I got home today. There, may be a message from him concerning it now. They send you everything as it comes in. I never saw him about these labs. He asked if I could come by and get him when I was up there for something else. If there is not a message, I intend to ask. Have you had these tests?

If anyone wants a doctor do dig into why they have dysautonomia (be careful what you ask for), consider Duke. They have gotten an awful lot of work in, in the last five weeks. Two swallowing tests. A GI test. Skin Biopsy. Four orders of labs. The lab orders were extensive. Thought I was going to have to ask for Saline to help replace all of the blood. Somewhere around 4 dozen vials of blood.

I had the ANA tests come back positive today.

If you figure it out. Let me know. I cant get to sleep to wake up. If I do, I wake up not breathing and my heart is playing ping pong. Takes me a bit to get my lungs filled back up, and then . . .well, I try to go back to sleep. I slept one hour last night.

I appreciate all of the responses. This site has been helpful to me. I have not seen a sub specialist so it has been especially helpful. Just understanding what is happening helps. Was looking at my legs this morning while standing. I can see me veins getting a lot bigger than they used to. The first time I really looked and noticed. Is this pooling?

I agree 1000%.

That is part of my great hydration challenge. Swallowing and stomach emptying. I need to keep the calories coming in, and I only have so much room most days.

I hope that it never goes that far for you. My manometry results came in today. They were normal. My esophagus is working the way it should (I tried to tell them that). It is the start of the swallow that is awkward. I could handle that inconvenience if I could make the mucus go away. I think. I can't nor can anyone else make sense of that portion. Is your swallowing difficulty high or low?

Does anyone else have swallowing trouble? My swallowing is abnormal. "Frequent penetration. No Aspiration." My swallowing motion has become awkward. I have no trouble once the food is on it's way in the esophagus. Other than the abnormal motion starting out, mucus is my biggest issue. Out of all the doctors that I have seen, I cannot get anyone to understand what that is like. It gets thick, and the food gets caught up in it. It is not there until I start eating. The more I eat, the more of a hazard it becomes. It is like an allergy issue, but I cannot be allergic to everything. LOL. I have to figure this out, if I am going to get better.

Thank you BellGirl. I am excited that I have gained back 6 lbs. Went through a spell where everything was working a bit better, but had a little down turn the last couple days(nausea). Unfortunately, I have a swallowing issue along with this. That is how I lost my weight initially. Makes it double hard. What I would not do to be able to grill and eat a hamburger, lol. I want to start some exercises. Particularly work on leg muscles. I have lost some tone. I had said that I was going to get back to 170 first. I just do not how long that will take. Maybe I can get another four pounds in two weeks. And treatment. I am looking forward to a treatment plan. Any improvement would be improvement right now. You are right. You know where my hope is. I could not imagine going through a chronic illness without that hope. I could not imagine life in general without that hope. Ironicly, in some ways this illness has been good for me. Funny how what seams right can be wrong, and what seams wrong can be right. I think that you know what I am saying.

I so not have a treatment plan established. What seams to my most limiting problem, is a lack of blood flow to the brain. I can tolerate my HR etc. when it is not excessively bad. I cannot tolerate being up right for lengths of time because of my head symptoms. If I push it and go to long, I pay for it for days. I also get a lot of symptoms as a result of it. What can I do to improve the blood flow to my brain when I am upright?

Resting 65-75 Sitting 80-100 Standing 120-150 Mild exertion 130-180 This is without any treatment.

artluvr, I am getting all kinds of twitching. To include my eyes on occasion.

That was very thoughtful of you. If anything this disorder might do for me, is teach me how to use this computer. I will certainly review this and share with a person that I know is interested in this topic. I look forward to the reading.

That seams to be associated with a lot of people's brain fog. I get high blood pressure, but with my terrible brain symptoms, I have convinced myself that there is not enough blood getting to my brain. I have started to think that my orthostatic high blood pressure is from my body's effort to get the blood up there. If I spend any length of time standing my "head" symptoms get bad and can last for a day or more. One of my first clues that something was wrong was brain fog or what I call brain stutters. Where I would suddenly not be able to think. Then, I was always upright. Low blood pressure can certainly cause brain fog.