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About vemee

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  1. I asked my pots doctor several years ago and he told me that this is a pots symptom. He said pots used to be called something like high and low pulse syndrome. I can't remember the exact title he used. My resting pulse is in the upper 50's but I am on a beta blocker. Before I knew I had pots there were times I would go to a check up and my pulse would be 44 and one time even 42. The doctor said I was fine but I felt weak and run down. The doctor was wrong. I know of another person who passed at and cut her finger because she was using a saw at the time. She was given a tilt table test
  2. I am no drug authority but since these drugs are designed to increase blood pressure it is possible that they are not good for someone with severe heart disease. Some people get very high blood pressure from midodrine when lying down. Your doctor should investigate and not just tell you he doesn't know.
  3. I can understand how you feel. I was a firefighter/emt and had the same problem and still do. Adderal helps a little but I still have the problem several of you have mentioned; reading is like forcing information through a brick wall. As far as work goes the Adrenalin surge of an emergency situation helped a lot and kept me out of trouble. I finally had to retire and go on disability when I could not keep my blood pressure from dropping after being upright for an hour or two or under heavy physical stress.
  4. Blue: I use to be allergic to the usual pollens and stuff like that. Now I have a whole list of food that I am allergic to which was not allergic to before. They say that the meat allergy is spreading and probably affect a fourth of the population in 5-10 years. People who are outdoors a lot will get hit the hardest.
  5. Yeah, those of us over 50 really don't have pots anymore, it just that we have gone senile and think we still have it. I really shouldn't joke like that because I suspect someone will be told that in all seriousness by their doctor. I am 58 and have had pots since my late teens. I am male. The condition still keeps changing; my latest new symptom is frequent Anaphylactic reactions (17 so far this year). I have tested negative for high tryptase during these reactions so mcad is not being considered. They have found that I am allergic to meat except for fish and fowl. This is the result o
  6. It increases norepinephrine levels. I would like to know if it would do those of us any good who already have very high norepinephrine levels. I don't think it will help those with hyper pots.
  7. I often get chest pains when working on something especially when lifting. These are substernal and last long after I stop the activity. I know that they are not sore muscles. In January during one of these episodes I thought I was having a heart attack. Went to the doctor and was tested with a nuclear stress test and an echo stress test. Everything was normal. I had a catherization years ago and that was normal. When I went to my pots specialist I told him about the pains. He gave me an autonomic test where you blow into a tube (I forgot the name of it, maybe valvsalva ) and my bp dropp
  8. While on cymbalta my main problem was several daily instances of dry heaves due to the increased levels of norepinephrine. It didn't really help my pots symptoms. The worse part was coming off the drug: I became extremely moody and almost homicidal for a couple of days.
  9. I think the question can be extended to; can pots cause damage to other body systems. Or I guess the proper question is there a particular physical disease or condition that has the same symptoms as pots but is different from pots in that it can affect multiple systems? I blame my hypoglycemia on dysautonomia. Of course I have no evidence to base this on except that I have both conditions. I believe one of the board members asked one of the Dr. at Vanderbilt if they were doing research into a relationship between pots and hypoglycemia. If I remember right they just looked at him/her funny
  10. I used the analogy of hypervolemic shock once and the doctor told me I didn't have any proof to back it up. However, I still think it is a good analogy. In my case I eventually reach a point where I should stop doing what I am doing and go lie down. If I keep pushing it I find it hard to breath, get smothery and I start to black out from my blood pressure falling way too low. I use to do this to myself a lot and end up crawling back to the house yelling for someone to come help me. I guess I was trying to prove something although I don't know what. But what I describe above is a perfect e
  11. Seattle Rain gave a good answer. If the body is having problems getting blood to all parts of the body then it shuts off sections of the body that it considers to be nonesential. This way it can maintain blood pressure and get blood to organs that are vital. For example it can reduce blood flow to the skin thus giving a pale look. As far as the brain goes I can only say from personal experience that this seems to happen with the brain. A researcher may tare that statement to pieces but I have found that I can have a normal blood pressure and be confused, dizzy and in a daze. I took one t
  12. I have had pots since I was in my teens. I was not diagnosed until my late 40's (I am 56 now) when my condition became disabling and I could no longer work. When I was younger I didn't even know how to take my pulse, but looking back I had all of the symptoms. The brain fog was the worst part. Also I would always do worse on hot days. Unfortunately, the careers I chose were not the best for my condition. I was a Marine officer and later a firefighter (I am a male). I was in good shape and reject the idea that deconditioning was the cause. The type of pots I have has to be genetic; my d
  13. I have factor V Leiden and excess factor 8. I was diagnosed after a pulmonary embolism (pe). A hematologist is the one who diagnosed me but my primary care is the one who manages my care. I have not seen the hematologist since I was diagnosed. The treatment is to put you on blood thinners like warfarin for life, however, I have been told that they will not do this until after you have a clot. Many people go through life with these factors and have no problems but the trick is surviving the problem when you get one. I was lucky because I was familiar with some of the symptoms of a pe. and
  14. I believe the brain has the same ability as the rest of the body to shunt blood flow from less vital areas to keep the vital functions of the brain going. I can't remember where I read that so I can't state this as anything other than my opinion. I have a high iq but with this condition I rarely function at that level. I can be just sitting and I feel like a drain has been opened at the base of my skull and I feel the life drain out of me. It just happened a minute ago. Afterwards I have memory problems, and am in a daze. Speach problems are also a problems as well as trying to write so
  15. Usually a pulse pressure below 20 is considered low. It means the heart is not perfusing the body properly. People with chronic heart failure often have low pulse pressure. In our case our hearts are fine but not enough blood is returning to the heart to ensure adequate circulation. In my case it is due to severe pooling. Low blood volume can also cause it. I have the same thing where I get days or a set of days where I just can't seem to get off the bed ; my pulse pressure would be below 12. My doctor started me on Florinef to help with this. Florinef didn't really help me with pots in
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