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Everything posted by vemee

  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 and her pulse went down into the 40's. Dr. told her she was in excellent shape and then beat her down claiming that she fainted because she cut her finger before she passed out and fainted when she saw blood. This is all due to doctors not knowing anything or much of anything about our condition. If the ekg is fine and the heart is not blocked or functioning wrong then they blame the patient. They fail (at least in my experience) to consider the rest of the circulatory system. My main problem is that because of severe pooling my body acts like it is bleeding to death. It shunts off areas of the body (like the brain) in order to maintain blood pressure, eventually the system fails and the blood pressure drops. I have been banging my head against the wall trying to prove it. I go to the dr. office with records of how my bp will fall after 1 to 3 hours of normal uprightness. They give a stress test and say I am fine. The last nuclear stress I had showed I had a reversible blockage which meant the artery was clear when I laid down but had a blockage when I stood for the test. When they did the cath. it showed all was clear. I said this proves what I was saying about the bp falling because of pooling. It went right over their heads. Frustrating. Sorry if this is disjointed, brain fog is functioning fine.
  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 of a tick bite and is a fairly new condition in the US and doesn't seem to be pots related.
  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 dropped dramatically. He said that when I strain I have an autonomic reaction which drops my blood pressure which reduces the flow of blood to my heart. Yesterday I picked up a dog food bag and sure enough it felt like the life went right out of me. I was nauseas, some palpitations and just a little pressure, this lasted half a day. Other times I can do the same activity and have no problems.
  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; so the answer is there is no research in that field. I have had pots since my late teens (I am almost 60 now) and even though it was a hinderance and often caused embarasment due to brain fog, it was not a disability until I was in my late 40s and I developed autonomic neuropathy. After that started I could no longer work. So the disease either progressed or something else got added into the mix that made me worse. At the same time I also developed low thyroid. Now in regards to the original post: even though my memory is not as good as it was, I do not think I have developed any brain damage because there are a few times when my brain functions normaly.
  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 example of what happens when someone is bleeding out. One of the last signs to go on a person who has hypervolemic shock is the blood pressure. The body tries every trick it has to keep the bp going and when it can no longer keep up it crashes. They also get anxious due to the hormones the body is pumping out trying to maintain blood pressure.
  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 tilt table test and missed the 30 beats per minute over resting by just 2 beats and had normal blood pressure. The thing is at the time I was so dizzy I was staggering coming into the exam room and remained dizzy through out the test. Of course I was told I had anxiety and not pots. As far as pooling usually Allex74 said it. Usually the lowest part of your body starts to turn crimson or purple when you sit or stand still for a few minutes. Cleveland Clinic does a test where they can measure the amount of pooling. For example: they found I have severe pooling which causes a 44% drop in circulating blood volume when standing. Also just because a beta blocker slows the heart rate down does not mean you have improved. In many cases the heart is beating fast because it needs to pump the blood to the body and for some reason it can not supply the required amount at a normal speed. When the beta blocker slows the heart down pooling can be made worse because the pump has slowed down and is creating less pressure so the body has to divert blood from other places in order to keep the pressure up. Think of the body as a fire engine that is pumping water to a fire. When you open up a hose line the pump pressure drops so you have to increase the rpms of the pump engine to make up for the pressure loss. If you have too many hose lines open then the pump will lose pressure because the engine is at max rpms and can go no higher. In that case the only way to increase pressure is to shut down enough hose lines until you have a maintanable pressure. I hope this helps you and did not confuse you, brain fog started setting in after the first paragraph.
  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 daughter has pots and several ancestors down one family line had pots like symptoms. Had I been diagnosed earlier I don't think I would have been cured but I do think the treatment would have greatly improved my life. My daughter has responded very well to treatment. I on the other hand kept getting told that there was nothing physically wrong with me and that I was depressed. So I spent years going to a psychiatrist which did nothing to help my condition but in fact gave me new problems due to my sensitivity to medication. Finally 8 years ago something new happened and I started to have neuropathy all over my body. I went from being a brain fogged firefighter who could meet the physical requirements of the job to someone who had to rest between ax swings, The final blow came during a fire when I was so weak and could not breathe that I could not even pull the hose into the burning area. I don't know what caused this change. It could be a natural progression or I could have gotten into some bad chemicals during a fire (this sounds cooler even though I can't prove it). I had thought the autonomic neuropathy had run its course a couple of years ago. This summer I noticed that when the rest of me was sweating my legs were dry. Even though qsweat tests had told me that I was losing the ability to sweat I thought that it was only a minor loss. However, now it seems everything below my waist has stopped sweating or at least is not sweating as much. This could only be my perception but there is a difference. I have had a hard time getting the doctors to look for the cause. They just want to treat the symptoms. I should be happy that they are now dealing with my condition. I have to go out of town to pots specialists since the local doctors don't know much about the condition and often consider it as simple tachycardia. When I am upright I have a 44% loss of circulating blood volume and high norepinephrine.
  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 took myself to the hospital inspite of being told by the doctor I just had a muscle cramp in my calf. My father was not so lucky.
  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 something.
  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 the past but I did not look at what my pulse pressure was then so maybe it will help. I am trying to figure out what causes these spells. Usually it happens after I have been up and more active than usual.
  16. My edocronologist put me on metformin which helps. Also eating a high protien diet helps. I have heard and read about how reactive hypoglycemia does not exist but this is a case of doctors not beleiving the patient and just looking at what they see in the lab. My blood sugar does fall below 60 and can either stay that low until I eat or bounce back up on its own. There have been times where I have taken my blood sugar in a series of tests that are a minute a part and have found it jumping back and forth by as much as 40 to 60 points in a minute with symptoms. Katieindixie I hope they have something to tell you at Vanderbilt but they did not give me an answer when I wrote them. I don't think it is something they are aware of being a problem.
  17. I have tried to read this whole thread but I am too add at the moment to cover the whole thing; so I apologize if I start stating something already said. That said I think this is a marvelous thread. I have a feeling a lot of us suffer with the fight or flight symptoms and are afraid to bring them out because of fear of being thought of as having psych problems. That is my feeling anyway. Before I was diagnosed with pots I was sent to a psychiartrist because my symptoms were considered caused by depression. I did not feel depressed at the time. When I was given a tricyclic norepinephrine reuptake inhibitor I crashed big time into anxiety and then when I marked off work into depression. No connection was made that the desipermine they had given me could have been the cause of my problem. So I spent many years on antidepressants. Of course when my pots got worse, possibly due to a chemical exposure at a fire, it was again blamed on anxiety and depression. I was a firefighter and had to retire. Fortunately I went to Cleveland Clinic and got diagnosed and eventually I got away from the psych aspect. My daughter also has pots and her first symptoms were severe anxiety, crying and even a halucination. She was in eighth grade at the time and had to be taken out and have a teacher for homebound kids teach her that year. I gave her a poor man's tilt test and found she had pots but we didn't know if it was caused by the medication or by actual pots at the time. She was finally diagnosed when she was 18 and we found a great specialist. I also remember in college that I went through a couple of years where I did not seem as emotionally solid as I normally was. It was during this time that a lot of pots symptoms such as brain fog became worse. I went through Marine Officer Candidate School and on hot days I could not keep up but on cloudy or cooler days I had no problems. Brain fog got me into a lot of trouble there. I read an article about norepinephrine and aggression which seems to fit the bill for what I went through. The study suggests that high levels of norepinephrine lead to agression. Also significant changes in norepinephrine levels either up or down in a short time can also cause aggression. This is the fight part of the fight or flight syndrome. This link is a summary to the article. I am sure is much more information on the subject now.http://www.scitopics.com/Norepinephrine_and_Aggression.html. I was interested about the comment made about butchers broom. I did not know it raised norepinephrine levels; that is the last thing I need since my levels at Vanderbilt were 450 resting and over 2100 standing (499 being the upper reference limit). My doctor is great and an expert in the field but I wish he would give me something to reduce the norepinephrine. He feels that if the pooling can be gotten under control the levels will go down. It makes sense but nothing seems to work to control the pooling. I would love to go through a day feeling relaxed. When I was tested for a pheo at NIH my resting levels were 585. The high levels was because I had been put back on cymbalta. Vanderbilt was my natural levels drug free and while on a controled diet. For those who are going or who have a loved one going through the severe anxiety that is disabling like my daughter did; it does eventually get better and their bodies adjust to the changes pots causes. I does take time though. My daughter is about ready to graduate from college with almost a 4.0 average. This is a long way from the way she was when she first got pots and was in a horrible way.
  18. I see him also and I am 55. He is very innovative and is always trying different combos of meds and other types of treatment. He is also very caring and listens. Best doctor I have found in Virginia.
  19. This is a topic that is near and dear to me since hypoglycemia almost got me put in jail and I was misdiagnosed as bipolar. I took the 72 hour fast and was told that I was normal except that I was insulin resistant. However, during the fast there was a time when I felt euphoric and took my glucose with my glucometer. It read low. I called the nurse but she could not come right away and by the time she arrived it was back in the normal range. The reason I was taking the test is because the same thing had happend on a 2 day fast previously. I was fasting to get rid of a stomach bug and caught a glucose drop during the second day. I have thought that perhaps adrenalin raises the blood sugar because there have been times when I was hypoglycemic that a sudden surprise would start me thinking properly. For example I got excited in the hospital when I saw that my sugar was low and that they might find the cause of the problem. I have been thinking that the excitement raised my levels. I had not thought about norepinephrine being involved. My levels of norepinephrine are high especially standing which was measured over 2100. I recently asked Vanderbilt if they had ever studied the relationship between pots and hypoglycemia. No response to that question. Does anyone know if any studies have been done on this matter? In response to the main question of the thread. I am on kerlone which is a beta blocker. It keeps my heart rate down but does not help the hypoglycemia. Metformin has helped immensley as well as a high protein diet.
  20. I just got a letter from Vanderbilt asking if I wanted to come back for a study on hypovolemia. I would like to go but this year doesn't look promising with too many things going on.
  21. I was a paid firefighter and had problems with pots before but it became disabling during a fire. I could not breath, did not have the strength to move the hose forward toward the seat of the fire. I had to actually leave the floor. After that I had no confidence that my body would perform when I needed it. The final straw came when I was helping another fire station with some construction. It was a hot day and I was soaked from sweat, throwing up and heart skipping. Even though my job was just to fetch tools I was completely exhausted and knew if we caught a fire that night I wouldn't be able to hold up. I marked off work and that was the end of a 13 year career. The worst part was being told by several doctors that all I had was anxiety. It took a while to get a real diagnosis.
  22. The high protein diet and metformin helped me immensley. I've found that even eating a fruit in the morning gives me trouble.
  23. It would be good to have it checked out. Last year I started having abdominal pain and thought it was just another pots symptom. I fooled around with it for 8 months and finally went to the er where I was told it was gallstones. The trouble is that wasn't the cause and the problem continued after my gallbladder was removed. I still put off going back to the doctor until I had to go back to the emergency room 2 more times because of the pain. The emergency room misdiagnosed me both times but the follow up found I had a paraesophageal hernia which is when the stomach pushes through a hole in the diaphragm and is part in the chest and is in danger of being strangled by the diaphragm. I was lucky because each time the stomach was being strangled it eventually released but if it had not I would have died. The point is that even though we are sick of going to the doctors and being made to feel like hypochondriacs we need to have our symptoms checked out in case it is something serious.
  24. From what I have seen; pots can cause severe depression in some people when it first appears or even later on if the condition worsens. My daughter suddenly became severely depressed when she first got pots. At the time we didn't know if the increase of the standing heart rate was due to the meds she was on or to pots. We had to wait a couple of years before we could get her diagnosed with pots. I went through a less severe episode the year I first started showing pots symptoms.
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