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vemee

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Everything posted by vemee

  1. Unfortunately this is quite common, I've been through it almost to the extreme . A lot of doctor's (not all) do not believe their patients unless they can see results on their first round of tests. Most do not want to take the time to look deeper into the problem because the more patients they can see the more they get paid. If they have to spend time on one troublesome patient then they lose money. I have been dropped as a patient a couple of times because with all that is going on with me I am considered too complicated. It is easier just to tell the patient to go to a psychiatrist. I know of one woman that was trying to find out what was causing her to feel bad and she was committed for 2 weeks because the doctors did not believer anything was physically wrong with her and they said she was on drugs. It turned out she has lupus. People with chronic illnesses, especially those that look healthy get the psych diagnosis all the time.
  2. Chaos, that is really interesting information about surgery causing neuropathy; especially since you got it from a top notch source. I've had pots for most my life and neuropathy for 7 years; I guess I can add another symptom to my pots list (not that I wanted another one). I agree with you that if your problems were structural they would be a lot more consistent and frequent.
  3. I don't have an answer but In March of this year I had surgery for a paraesophageal hernia. That is when the stomach goes through a hole in the diaphram and ends up with the majority being in the chest cavity. The danger is that the stomach can be strangled by the diaphragm. After my surgery, food would get stuck in my throat and I would throw it up. I had a barium swallow done and it showed that even liquids get backed up in my throat. I had my throat ballooned but it only helped for a week. Another surgery found that the mesh used to cover the hole in the diaphragm had come undone and was pressing in my throat which they corrected. Afterwards I could swallow a lot better but food will occasionally get stuck in my throat. I can live with it but I did not have that problem before surgery. The reason I am posting this is because I have noticed that when I do have food get stuck in my throat I also feel that my body is not right in a pots type of way. I don't have trouble swallowing every time I feel potsy but it does seem like every time I have trouble swallowing I have some type of pots symptoms. I don't think it is a structure problem otherwise I would have a lot more occurrences than I do now. Also muscle relaxers have helped; so for some reason my throat is tightening on it's own. I guess autonomic dysfunction could very well be the cause of it but I can't figure out how the surgery caused the problem.
  4. My link There was a case a few years ago of a woman who went into cardiac arrest during an operation due to a takosubo. She was revived. The doctors believed that pots predisposed her to the condition. I guess it is your doctor that wrote the article.
  5. I am on kerlone which is the same thing. It is an old beta blocker and most cardiologists have not heard of it so I doubt there will be a lot of people on this board that are on it. I was told it worked by blocking the adrenalin from the heart. I have severe pooling to begin with so I was interested in the part about the blood vessels being relaxed. I just take 2.5 mg and that keeps my heart rate normal. I don't know if it made my pooling worse; I would think anything that slows the heart would cause less blood to be pushed through the system. At least in my case the heart is beating fast because it can't get enough blood throughout the body.
  6. I was diagnosed as insulin resistant after years of reactive hypoglycemia where the blood sugar dropped way below 60. I was prescribed metformin and have not really had a problem with low or bouncing blood sugar since.
  7. I have had pots forever and have had gerd for a long time but last year I started having severe upper abdominal pain and then in the summer bouts of diverticulitis. I had my gall bladder taken out because we all thought that was the problem but a few weeks after the operation the pain returned. It seems to be on a 2 to 3 week cycle where I will have severe pain in the upper center of the abdomen. Feels like gas but I am not particularly gaseous. I am having a endoscopy in Feb.
  8. It is natural for him to feel anger about what is happening to him but the confusion doesn't seem to fit into adrenalin surges. It could be a blood sugar problem. If his blood sugar drops below 60 then he could experience mood swings, become combative, confused and not recognize those around him or know where he is. Even though I have not read any official papers linking hypoglycemia to pots; I have found from personal experience and from posts on this board that seems to be a link in some people. The type of hypoglycemia some of us have on the board is called reactive or rebound hypoglycemia and is not related to diabetes. In most cases the person who has it is sensitive to changes in their blood sugar but it does not go below 60 in most people. Some doctors will tell you there is no such thing as reactive hypoglycemia but there are those of us who do have it and our blood sugar does drop below 60 which brings on symptoms. My blood sugar/glucose has dropped below 20 before. There have been times I have been extremely moody and ready to erupt into anger and have found it was my blood sugar. I would be depressed or angry and not know why. I have dealt with hypoglycemics as a firefighter and they vary in symptoms from passing out to not recognizing their spouses. Some become combative and have had to be pinned down to be given glucose. When their sugar goes back to normal they remember nothing about being combative. Talk to your doctor about getting a glucometer to test him when he is acting this way. Don't let them diagnose him as bipolar without looking into this matter fully. A lot of times hypoglycemics are diagnosed as bipolar because of the mood swings and they do not bother to look at blood sugar issues. There is medicine that can be given that helps even out the surges in blood sugar. Also when he is behaving this way give him something sweet to raise his sugar and then follow it up with protein. The sweet will quickly raise his blood sugar so that he will start acting normal and the protein will keep the sugar levels up over the long run whereas just giving him sugar will raise it for a little bit then it will crash again. If he responds to being given food then he definitely has a problem with blood sugar. I also need to add that some people go through depression due to the chemical changes in their body when they develop pots. My own opinion which is based only on personal experience is that it has something to do with the increase in norepinephrine levels
  9. I know some doctors do not believe that reactive hypoglycemia exists but I have proved to mine that I have it and that my blood sugar falls well below 60 and even below 20 which is the low limit of the meter. One way to catch it on the glucometer is to take a succession of readings every 1 or 2 minutes when you are feeling symptomatic. This might show jumps and drops of the blood sugar by as much as 40 to 60 points in just a couple of minutes. This yo-yoing is what you are feeling. Also try to take your blood sugar at intervals after eating a big meal and see if it drops below 60. Sometimes you can catch the drop before you feel the symptoms which usually occur when your body is reacting to raise your sugar. Also take your glucose if you are having any mood swings or not thinking right. The problem with this is that you will need a lot of strips which can be expensive. I was lucky that I went to an endocrinologist who gave me a prescription for the strips as well as a meter. I have dealt for years with hypoglycemia and the only support from doctors was to say "eat cheese crackers between meals". I finally got put on metformin which has helped even out my blood sugar and it has been a while since I have had a wild mood swinging event.
  10. Dr. Hasan Abdallah of the Children's Heart Institute in Reston, Virginia. Dr. Abdallah has worked with Dr. Grub and specializes in pots. While his office deals mostly with pediatric cardiology, he does see adult patients with pots. He has several locations and one may be in Manassas but Reston is not that far away. Telephone # is 1-866-645-4055.
  11. Last Christmas I ate candy not a whole lot but enough and I did not have any problems until the day I got back on my diet and cut the sweets out. I did not have a glucometer then because the doctors just told me to eat crackers between meals but I was in a rare altered mentality which just happened to change a few minutes after eating a hotdog on a bun. I knew then it was hypoglycemia and that the cheese crackers did not help a bit. Probably my body was use to producing enough insulin to handle the candy and did not adjust to the stopping of the candy. It seems that the prevailing idea out there is that it is very rare for people with reactive hypoglycemia to have their glucose levels drop below 60. In fact a lot a doctors say there is no such thing as reactive hypoglycemia and people are just overly sensitive to changes in their glucose levels. Even the psychiatrists have their opinion on the matter. Fortunately I do have the meter to show I have a real problem.
  12. The first time I was fasting it was because I had a colon bug so I just gave everything a rest for a couple of days. After the 48 hour mark I felt bad but thought it was from pots but I took my blood sugar anyway. It was 38; I got excited because I knew it wasn't suppose to do that unless I had an insulinoma but when I retook it it popped back to 77. I thought it might be a fluke so I hesitated mentioning it to my doctor but I did and then was put in the hospital for a 3 day fast. My glucometer matched the results of the venous draws everytime. Again sometime after 2 days I was feeling euphoric and after about 5 to 10 minutes I took my glucose which read "lo" my monitor won't read below 20. Again I got excited and called the nurse who was busy but came when she could. My sugar reading on her monitor was in the normal range and when I retook mine after her it matched her glucometer. I think a shot of adrenalin has something to do with my glucose being able to correct itself. At the end of the fast I was given a high carb breakfast and my glucose shot up past 200 (actually it did hit 300 and dropped down to just over 200 before the first official hour measurement. I was put on metformin which has helped under normal circumstances but if I go out to eat or eat sweets/a lot of carbs I bounce around and feel bad but so far I have not caught it going below 60. Without the med my glucose would bounce around above 60 but vary between 30 and 60 points within just a few minutes. It might jump 30 points and then drop 40 points 2 minutes later only to repeat the cycle for a half hour. My endo said that in order to go to NIH I am required to have a reading less than 60 from a venous sample which is hard to get when I self correct. The times where I have not self corrected I am in no mood to be around people and I am afraid, if alone, to drive to the dr.s office to get a draw.
  13. I have been diagnosed with insulin resistance and have had a problem with hypoglycemia for 30 some years. I remembered that the first real hypoglycemic attack that I know of happened the same year I can definitely point to my first physical pots symptoms. They may or may not be related. Usually my sugar drops and then can correct itself without food. Does anyone else do this? I can drop below 30 with symptoms and then pop back up to the normal level in minutes. I have even been fasting for a couple of days due to stomach bugs and my sugar has dropped and corrected itself. I have been tested for an insulinoma and one was not found. There is a NIH clinical study on hypoglycemia but my doctor told me that you have to have a documented glucose drop from a venous draw in order to qualify.
  14. Unfortunately cymbalta like the other antidepressants does have side effects when withdrawing. You need to taper off slowly but you also need direction from your doctor and you might have to increase your klonipin while you are withdrawing but your doctor can help you with that. Cymbalta withdrawal can cause severe mood and personality changes in some people as well as physical symptoms. I had the severe mood disorders and believe me they were not pleasant and caused me a lot of grief.
  15. The trouble is that a lot of doctors look at pots as just simple sinus tachycardia. They fail to see that pots is a circulation problem and not always an electrical problem. The body for whatever reason is not getting the blood it needs even though the heart is fine. Your best bet is to find another doctor, even if you have to go out of your area. Some doctors can not get past their preconceived ideas.
  16. They did the glucagon test at the end of the fast. Initially I thought I felt a little dizzy but that passed quickly. My blood sugar only move up 10 points. 30 minutes after giving me the glucagon I had the mixed meal test where I ate a high carb breakfast. My blood sugar shot up to 300 then dropped to just over 200 within the first half hour. At the end of the test which was 3 hours after eating, my blood sugar was 126. I don't know how the glucagon affects the meal test so I don't know if the normal range for the meal test would be the same as for a glucose tolerance test. I think that if the reference range for the test I took is the same for glucose tolerance I have another issue to contend with. My morning blood sugar is always in the 80s.
  17. I just finished a 3 day fast at the hospital where I was being tested for an insulinoma. I was tested because in July when fasting trying to get rid of an intestinal bug I had an incident where my glucose dropped to 39 and then jumped back up to 77 on retest. The same thing happened in the hospital only more extreme. It was well over the 48 hour mark when I started feeling fuzzy headed and mildly euphoric, this lasted several minutes before I took my glucose on my own glucometer. My reading was "lo" which meant the glucose levels were below 20. I called the nurse and she came in after a minute or two and used the hospital monitor: her reading was 85. As the nurse left the room I took my glucose again thinking that if my glucometer was not working there would be a big difference between her reading and mine. My level was at 76. Right after that I went into dry heaves and a wave of heat ran up and down my body and I felt shaky for a half hour afterwards and just wrung out the rest of the day. With me dry heaves usually are related to a pots event (possibly due to a rise in norepinephrine levels) like standing too long. My blood sugar after the event was 85 so the dry heaves were not caused by another sugar drop. The most obvious suspect is that my glucometer does not work. However, I tested it with the in date testing solution and it passed. Also while in the hospital I always took my blood sugar when the lab drew venous blood and compared their readings with mine; I found that I was no more than 5 points higher than the lab. I have found that my blood sugar acts like a yo yo jumping and falling sometimes as much as 50 points in just a couple of minutes. I do have symptoms when this happens even though the values do not always fall below 60. During the fast my glucose was normal (except for the above mentioned drop)and only moved around smoothly in a range of 71-85. The doctor ruled out an insulinoma causing the drop because the glucose corrected itself without eating something and I went through the fast without going hypoglycemic. I also had a glucagon stimulation test which I think I passed; I won't know the results of all my tests for about 2 weeks. Carbs had nothing to do with this drop because I had fasted for over 2 days and in fact my last meal was eggs and turkey sausage which are less than 10 carbs so there were no carbs in my system to influence my glucose. The doctor did not know what could have caused the drop in glucose or the sudden rise. I forgot to ask the doctor that if the surprise of the low reading (I got excited that a cause might have been found) could have stimulated enough adrenalin to shoot the glucose back into the normal range. It is possible that the above events could be evidence (not proof) of 2 things: 1. reactive hypoglycemia is not caused by food even though it is definitely aggravated 100 times by what we eat. 2. There may be a link between reactive hypoglycemia and pots. Most of us already believe there is a link anyway. The doctor may come back in two weeks and be able to explain what happened but it isn't likely since the blood went back to normal before it could be drawn.
  18. I haven't had much help from proamitine but it has definitely helped my daughter. The only other drug that I think we can fall back on is mestinon but since it is not specifically designated for orthostatic hypotension some doctors may not want to prescribe it.
  19. I would shut down during heavy physical activity, I still get out of breath and near syncope just doing simple yard work. I think it goes back to pooling and low blood volume, As your available circulating blood volume decreases your body tries to make up the o2 deficit by breathing faster. As the body tries to manage the lack of perfusion it starts to take blood away from the parts of the body that can do without it for a while and send it to the vital organs that start to die if the blood flow is stopped. After a while the body can not keep up and eventually cuts off more blood from more organs. I like to think of it as similar to hypovolumic shock and think it is a valid comparison since a lot of the symptoms are similar to what pots patients go through. I was told by a dr. at Vanderbilt that there was no proof of that happening but my pots dr. said that my body can not keep up with what I am doing which goes along with my theory. If there is a big drop in circulating blood volume what is the difference between it dropping out of circulation in our veins and bleeding out except that it is easier to recover. I have forgotten the mechanics of hyperventilation except that our breathing is controlled by the level of carbon dioxide primarily and o2 levels secondarily so when we breathe fast we get rid of too much carbon dioxide and that somehow changes the chemistry in the body which causes the veins and arteries to constrict which causes the body to think it is not getting enough oxygen so it continues the fast breathing to bring in more oxygen. My question is that do those of us who have pooling really hyperventilate because we have blown off too much carbon dioxide by not controlling our breathing or is it just the body trying to make up for it not getting enough oxygen?
  20. This is my theory and has no medical backing so take it with a grain of salt. People who live at high altitudes have higher than normal hematocrit, this is to compensate for there being less oxygen available. The body produces more red blood cells to carry more oxygen instead of producing more blood. Some people with pots that have blood pooling also have perfusion problems because of the drop in circulating blood volume when vertical. The body reacts by producing more red blood cells to make up for what is lost to pooling. I also think that those with low ferritin levels might be in this group. The body uses iron to make red blood cells, ferritin is used to store iron in the cells until it is needed by the body to replace the circulating iron. Again this is just my opinion but if you think it sounds good you might ask your doctor.
  21. I mentioned in a post above about going on a fast due to an intestinal bug and that I had a quick drop in my glucose levels to 39 which rebounded back into the 70's. My doctor told me that the caffeine from the diet cokes and the tea would not affect me and she is going to put me in the hospital for an official 3 day fast. I don't plan on going until September but my wife wants me to go now. I figure that if I have anything then I have had it for at least 30 years so a few more weeks won't hurt. I hope they find something correctable.
  22. I have read a couple of articles that have said reactive hypoglycemia doesn't exist; it seems the medical community always is quick to push something off to the psychiatric community. I know I have reactive hypoglycemia and that it does dip below 60 and even in the 30's as well as the rebounding adrenalin caused spikes that are in the normal range. It is a pity that dr.s believe they know better than we what our symptoms are. I had a colon bug the past week and went on a 2.5 day fast. My blood sugar levels were pretty steady I thought until I did catch it down at 38 but it quickly rose again to 77. I wrote my doctor to tell her but I don't think it is from an insulinoma since it was just a blip. Yet I don't know how many times it had dipped down before and after that. I was only drinking diet coke, tea sweeten with a sugar substitute and water, no food. It had been a while since I had had a caffeine drink but before it those drinks had not bothered my sugar. Since the purpose of the fast was to get rid of the colon flu I was not concerned about the caffeine affecting my blood sugar, however, it is interesting that I still dipped without having any carbs or sugars for 2 days.
  23. Well this is an interesting possibility. My first thought would be that insulin mediated vasodialation would be constant and not just when standing. However, since all of the mechanisms that cause it are not known it could very well happen. I will have to ask my pots Dr. about this.
  24. While deconditioning might cause pots in some patients it is not a major cause. I have had pots since my teens and I was in great shape yet the brain fog was terrible as were the other symptoms. However, even though it was not disabling at the time it definitely hampered me. I use to run distance and lift weights and always scored first class in the Marine Corps fitness tests. I did not start having problems with doing physical tasks until a few years ago when I was in the fire department. 6 years ago I could barely swing an axe without taking a rest and throwing up between swings where just a few months before I was in full gear chopping a tree up that had fallen across the road and blocking our approach to a fire. I am not saying that I was all that; but I am trying to say that I was in good condition with resting pulse in the 40's and still had pots. As I felt worse my conditioning did go down and I put on over 60 pounds, the doctors then just said I was deconditioned and would not listen to me when I told them I was in shape when this mess started. Of Course if you can exercise it does help strengthen the legs which may help the pooling but it is not a cure.
  25. The way it was explained to me, reactive hypoglycemia happens when sugar and simple carbohydrates are digested quickly and sends a surge of blood sugar into the blood stream. Normal people have something that prevents this from happening, they are not sure what perhaps glucagon. When the surge happens the body over reacts and stops dumping sugar through the kidneys and pumping insulin into the blood. When the sugar levels drop the body over reacts again and starts trying to prevent hypoglycemia by infusing adrenalin into the blood to raise sugar levels thus giving some of the shaky symptoms. For some reason the body does not quickly start this process quick enough and the person can go into actual hypoglycemia. I would guess and this is just my layman's opinion, that since pots patients also use adrenalin surges to control blood pressure that they might also affect sugar levels. The research should be done on what we lack that prevents the control of our blood sugar.
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