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  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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
  7. 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.
  8. 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:
  9. I have hyperPOTS and got the Moderna vaccine back in Feb and March. My arm was swollen, worse the second time. Maybe felt a little fluish but nothing that noticeable in the grand scheme of my problems. Nothing happened that lasted more than a day.
  10. I've been on immunoglobulin therapy off and on for nearly four years. Up until recently it was IVIg but because of covid I switched to subcutaneous Ig like p8d. It's very tough to get insurance to pay for it, but it's been the only thing that's helped my autoimmune problems. It doesn't help everything, but it makes most things much better.
  11. Actually, some docs do use increase in BP upon standing (along with greater than 30 BPM heart rate increase) as criteria for hyperPOTS. Like Pistol, I can have increase in both systolic and diastolic but more so with diastolic as my pulse pressure becomes more narrow. But I have also had what you describe on occasion -- a decrease in systolic and increase in diastolic. And sometimes I have classic postural hypotension, usually at night. I've also been surprised to find myself blacking out from a rapid drop in systolic upon standing and narrowing of pulse pressure even when the numbers are not in the hypotensive range. It seems like some experts don't like to classify this disorder into types because of variability. For myself, over the years, I seem to have gone from always having orthostatic hypotension to usually having a BP increase of some sort upon standing. And even now, my body likes to mix it up some just for fun So I'm not sure how neatly most POTS people fit into the distinct type boxes as defined at the moment.
  12. Really, it depends on the strain you use.
  13. I missed this when first posted but maybe you still check the board. Pistol covered most things so I'll just share my experience. I had subacute thyroiditis when I was 32 and started having joint pains and other non specific autoimmune problems. After three miscarriages I finally had a baby girl at 33. The entire time I was pregnant I felt great. About four months after, the dam broke loose similar to what happened to you except it was different autoimmune diseases. Your positive ANA points to an autoimmune cause. But the main thing I wanted to say is it's common for people with autoimmune disease to experience a remission during pregnancy. And it's also common to relapse around three or four months after the birth. The theory is your body suppresses response to "non-self" during the pregnancy so you don't reject the growing baby inside you. Since autoimmune disease is basically your body getting wires crossed and thinking "self" tissue is "non-self" it also suppresses this process also during pregnancy. This protection wanes after the birth. As to your question what happens afterward, when my baby was 13 months old, I entered a PhD program and was able to finish in good time. With meds that is. In my case prednisone. After the baby was born up until I entered the PhD program, I was able to work at my previous job. I was able to enjoy my daughter and I could function normally for a time. I went on to develop several autoimmune diseases but I am not the norm. In retrospect, I think pushed myself too hard during that PhD period and my not listening to my body contributed to my development of more problems. So, yes, you can recover but take care of yourself. Weigh your options on drugs to help and look at the cost benefit ratio.
  14. One thing I'd like to mention is I don't think POTS is a "forgotten disease." It's actually a new disease relatively speaking. It was only recognized as a syndrome in 1993. In the medical field, that's pretty new. Plus it's a very complex syndrome, causing a wide range of symptoms and appearing to have more than one cause. At this point even those subtypes aren't established. I know my doctors struggle with my symptoms. When AIDs was discovered it was such a big deal that a bunch of money went into research very quickly (at least in research time). This research, in turn, not only helped AIDs but advanced the field of immunology, which had been stuck with the same ideas for decades. I was in graduate school during this time so I witnessed first hand the surge of new information. As unfortunate as Covid has been, research into it and long hauler aftermath may advance medical science in ways we can't predict at this time. I only hope it unlocks some of the mysteries to POTS.
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