Jump to content


  • Posts

  • Joined

  • Last visited

Everything posted by toomanyproblems

  1. If I were you and you decide to go back, after one stick and they don't get it, ask for someone else. It sounds like they had someone either not very good at drawing blood, or very inexperienced since it sounds like it's never been a problem before. Or better yet, call ahead and make sure you have the best person draw you because of the problems you had. People do that all the time for difficult sticks.
  2. As someone who worked in a clinical lab for many years and drew blood on the hospital floor as part of those jobs, the amount of blood they draw is very, very minimal wrt your total blood volume. There are many reasons you might have had the problems you did with the blood draw. Many people get stressed when it doesn't go smoothly and many get stressed even when it does. But the amount of blood even in many vials is not nearly as much as it looks like. Compared even to just donating a unit of blood, the amount of blood taken in a blood draw is very small and shouldn't cause any problems even in your situation. I do have low blood volume and polycythemia that is almost certainly a relative polycythemia (what appears to be too many red blood cells due to a low plasma volume). Taking a unit of blood off to lower the red cell count has even been tried and it did not affect me as you describe. BUT I do have what you describe due to overstimulation or stress in a ridiculous number of normal situations. I think some of the responders here are describing this problem in many situations, some common, and some specific to the individual for various reasons. In short, most people do not like to have blood drawn and it stresses many people out even when things go smoothly but blood loss is not an issue. I mean, maybe if you were a chihuahua...Calculating how much blood can safely be drawn wrt total blood volume is done in small animals and babies but is not an issue in adults even though it can look like a lot of blood in the tubes.
  3. I have hyper POTS and I got the first Moderna shot Feb 5th and the second March 3rd. I had a sore arm for the first one but didn't notice much else. The second one my arm swelled a bit more and I might've felt a little worse than normal for a day but that was it. Since no one around me is vaccinated I'm glad I got it early. I'll get a booster the first chance I get. But I have no way of knowing how well I responded since I'm immunosuppressed so I still wear a well fitted N95 mask inside when I go out and will continue to do so until I feel like it's safe.
  4. Pistol -- I'm so sorry your family went through all this. Please take extra good care of yourself.
  5. The blood sugar increase you see makes sense with high adrenaline since that stimulates your adrenal glands to produce more cortisol (your natural steroid), which in turn can increase your blood sugar. Since I have Addison's and all the steroid in my body comes from oral ingestion or injection (when I'm not absorbing properly due to gastroparesis) I can control how much is in my body at any given time. So although the increased adrenaline causes increased cortisol production causes increases blood glucose thing is an explanation, that mechanism isn't what's causing the high blood glucoses in me. It's interesting when I'm having a problem proposed to be linked to increased cortisol from stimulation of the adrenal glands because I know that's not the cause for me since I control those steroid levels myself.
  6. I get these really bad at times. It goes from jerks to rarely whole body convulsions. I was doing some reading about this a few years ago when I had it bad but I didn't find out much except antihistamines like Benadryl usually make them worse. That was a huge find for me. Nine times out of 10 Benadryl will cause it with me to some extent. Now I avoid it if possible. I have no idea what the mechanism for this is but then I've mostly stopped trying to figure out why things like this just come and happen to me seemingly unrelated to what's going on to my body externally. I'm very sorry this is happening to you. I hate the jerking worse than pain. It's like electrical current builds up in my muscles and then releases with a jerk. I hate the feeling of the build up worse than the jerk. It's like having an EMG all night long. And sometimes during the day.
  7. I have Addison's and it did cause low blood sugars before I was on steroid replacement, like in the 40s at any time, and often, but not only post prandially. Hypoglycemia certainly is a symptom but one endocrinologist told me it actually wasn't a common one. Also, I *never* had high glucoses at that time pre-steroid replacement, only normal or low. Addison's might be a rule out but I would think it unusual in this cause especially since both the reactive hypoglycemia and hyperglycemia is a now being discovered as a POTS thing. Similar to what the OP is describing. That "guarding your carbs" thing is very useful. Fat, fiber or protein before carbs keeps a rush of insulin from hitting your system because of the carbs going straight into your system basically "undiluted." Even complex carbohydrates are better than simple ones because it takes longer for them to break down and get into your blood stream.
  8. I should have noted that hypoglycemia accompanying glucose intolerance is known in POTS patients, but not well studied yet either. It's discussed in the video I posted above.
  9. I'm having glucose intolerance. Check out this recent thread:
  10. This is very good up-to-date and welcome information for those it applies to. Well worth the read. Thank you for posting.
  11. Hi Echo. A sense of impending doom is actually a classic POTS symptom. Not everybody has it but it's been a consistent problem for me from the beginning of when I recognized that I had POTS. It's now taken on two forms. One is just an overall feeling of doom -- like something bad is going to happen to me or the world. Like a cloud of doom hanging over me all the time. The second is a wave of horror and dread as though someone just told me my daughter had died or something that significant. The waves will often happen in the middle of the night and wake me up or as I'm trying to go to sleep as you describe. They certainly disrupt any normal activity for me and make it hard to get back to some kind of baseline. I feel for you because this symptom is very upsetting, especially on top of everything else that makes us feel bad with POTS. The last month in particular has been very difficult for me and I'm having a hard time clawing my way back to better ground. The bottom line is this symptom is not anxiety like non POTS people experience. It's part of the disease.
  12. There is nothing wrong with the current vaccine. It's the best technology we're ever had. Crazy misinformation is being spread and scaring people. I am not some sheep that will to follow advice with no questions. I'm a scientist from a similar field who is well versed the field. I have no motive to want people hurt, only to help if can. The vaccines, tho not perfect, are the best we can do now. I also do not get flu vaccine but had no trouble with the covid vaccine. I hope you can see your way to get it because the disease it protects you from is really bad. Especially this delta variant. Good luck.
  13. I'm not saying don't do what works for you Rexie because you obviously got this from a doc but as someone who's pretty well versed in the use of steroids both through experience and education hydrocortisone is not a typical med to take for low BP. So please others be aware it's not a go to med for low BP. It will raise your BP but there are a lot of problems with using steroid in this manner. Some of them long lasting. As in it can suppress your adrenal function and cause secondary adrenal insufficiency, which may cause you to have to take replacement steroid for the rest of your life. Not a good thing, speaking as someone with primary adrenal insufficiency (Addison's) who's been on it 30 plus years. It also causes immunosuppression. And more. It's not to be taken lightly.
  14. I took both Plaquenil and Imuran for years for other autoimmune problems. During that time I began to feel almost normal for a while. Unfortunately, because of another trauma I then got hit with a barrage of new problems, some old problems got worse and I decided to discontinuous both about six or seven years ago because I didn't feel they were helping enough overall at the time to justify the risk. All along I'd had liver problems off and on from the Imuran that caused me to have to discontinue or lower dose until my liver enzymes came back into normal range. I had to have blood work drawn every month for the Imuran and an eye exam every year for the Plaquenil. I began IVIG four years ago and switched to subcu IG that I could infuse myself last year after a break from it because of covid. From the beginning the IVIG helped me even after the first loading dose. I would say it's kept me going and smashed things down better than anything I've tried for dysautonomia. However, I'm still pretty sick and my health is going steadily downhill. I know without the IG therapy that I would be even worse because I was off of it for several months because of covid and I really crashed back in the fall. I plan to ask my rheumatologist if I can go back on the Plaquenil when I see him next month. And possibly even the Imuran if he'll let me do all these things together. I'm getting pretty desperate to slow my decline. I've never done plasmapheresis. But I've done the other things you've mentioned and they all helped me. I've had adverse effects from them though but I didn't care as long as I had an overall gain in my quality of life. It's hard to get IVIG covered by insurance and it can take a while to see the full effect. But it can help significantly with autonomic problems in my experience. It can take longer for the SCIG to build up enough to help but it's worth it IMO.
  15. Are you talking about heart rate or BP? If BP you mean systolic 180-225?
  16. Wow. Thanks for this. My reading comprehension is very poor these days but I got the gist of it. I'm gong to schedule time on my recumbent bike everyday after reading this. I'm willing to do anything to help. The low diastolic pressure finding is very interesting. I mean, in my case, you can't have chronic dizziness and intermittent passing out from lack of blood flow to the brain when standing for years and not expect that it will eventually affect your brain.
  17. Thank you p8d. I know you understand how hard this is for me. I found out today that the neurologist who was very smart about my POTS has moved away so the proper testing to get a vascular dementia diagnosis, if that's what it is, seems out of reach right now. The lack of common medical knowledge about POTS is so frustrating. Over the last few days I've had some bad experiences that are pretty obviously the result of my cognitive impairment diagnosis and being on Namenda. As in I was having a conversation that was abruptly terminated as soon as the other person reviewed my med list (pharmacist who actually called me about something) or my list of diagnoses (a nurse at an appointment who I was asking a question). My questions were reasonable but after they saw the cognitive impairment stuff, they just stopped engaging with me without even trying to be subtle. I can see their side, I guess, they don't know how far along I am, but it's going to be really hard for me for people to not even try to take me seriously or listen to me or answer my questions. I don't even know how to handle this new stuff. I've had so many medical problems over the years but this is a whole new challenge and it may be the worst one yet.
  18. Thank you. I'll report anything useful I find. One problem I'm having is not being able to understand what I'm reading after a few sentences. This has been pretty hard on me. I can't do much physically. Now I can't even read and study.
  19. I know this is an old thread but I wanted to comment. I've been diagnosed with mild cognitive impairment. I'm 67 and have had POTS for at least 14 years. I suspect that this is vascular dementia caused by POTS. I'm looking into having it diagnosed properly so it can be treated/managed properly. It's a fairly rare form of dementia but it totally makes sense in a POTS patient. I'm currently on Namenda.
  20. I'm not on a beta blocker FWIW. My fasting glucoses are high too, but that's probably because they aren't really fasting. My stomach empties too slowly. Other lab values are also indicate that fasting times for me are not fasting times for normal people. I also see values around 200 after a carb heavy meal. That is just not normal. Renal threshold is different in different people but you would probably start spilling glucose in your urine when it gets over around 140. And that is definitely not normal. This research is so new I wouldn't expect it to make its way to clinical medicine any time soon. But I'm thinking this may be a new POTS related type of glucose intolerance that doesn't fit in the current two (type 1 and type 2) known types. Time will tell.
  21. I have had one incident that might be described as a hallucination. It was maybe three years ago. It was around lambing time and I looked out my kitchen window and very clearly saw a ewe with a newborn lamb trying to nurse. It was about 50 yards or less from my window so it wasn't hard to see or far enough away to normally imagine something was there that wasn't. It was too early for any lambs so I blinked and looked very carefully for a decent amount of time. I was certain I saw it. So I went outside and no lamb, just the ewe. I'm 67, have had sheep for nearly 30 years and have never had anything like this happen before or since -- with sheep or anything else. I have to say it really rattled me. Like the OP this was no fleeting glance, it was something that really seemed to exist. I don't specifically remember whether I was having a flare at the time but I did use to pass out a lot. Maybe the visual center of my brain was messed up from hypoxia or something. I've not been diagnosed with any mental health conditions and I'm not on any meds that would cause this.
  22. Glucose intolerance is also being found in lean POTS patients. They found 50% of lean POTS patients have glucose intolerance in a small study. This is happening to me right now with post prandial glucoses right at 200 on multiple occasions. It should never be above 140. I have zero family history of either type of diabetes. My quick notes on this video: -- Basically, if a patient is demonstrating increased sympathetic activity, it can increase blood glucose. This is similar to the increase in sympathetic activity obese patients have. --Pots patients tend to have normal fasting glucose levels versus obese patients developing type 2 diabetes. However they do have impaired glucose tolerance when challenged with a high glucose meal. It sounds like because of this, the A1C, while useful, may not indicate the degree of glucose intolerance the pots patient is experiencing. A standard glucose tolerance test is the best way to test these patients. --Time frame of development of glucose intolerance is shorter in a lean patient with pots compared to an obese person who does not have pots. --About 50% of lean pots patients have impaired glucose tolerance. Here's the video: https://vimeo.com/485528506
  23. I feel like I'd like to start a new topic on this. The glucose intolerance isn't something that seems to be known. I've been experiencing it since at least the end of last summer when I for some reason decided to check my blood glucose. I used to have glucoses in the range of 45 all the time. It was considered at the time to be from my adrenal insufficiency. Now my gastroparesis keeps my sugars up for prolonged times post prandial. I really don't know if I ever drop too low anymore because my emptying time is so random.
  24. Hypoglycemia after meals is known in POTS patients: https://www.endocrine-abstracts.org/ea/0041/ea0041ep235 Glucose intolerance is also being found in lean POTS patients. They found 50% of lean POTS patients have glucose intolerance in a small study. This is happening to me right now. I have zero family history of either types of diabetes with a zillion relatives (for example, I have 50 first cousins). It must be the POTS:
  • Create New...