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sue1234

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About sue1234

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  1. Issie, yes APS is what I was thinking of. p8d, thanks! I will watch it.
  2. Issie: Hey! What enzymes are you taking? B: I would guess I have somewhat low blood volume also, as I what I take in goes straight through me. My aldosterone over the years stays lowish, from 1-5. I've been hearing others have been found to have something autoimmune that tends to cause thicker blood, and offhand cannot remember what it is called. So kind of wondering if that might be an issue for me. I'll have to find the name before I head to the doctor in the future.
  3. I was re-reading this thread from three years ago, and since then, I have come to a different conclusion as to why I had felt clear-headed. I thought and thought as to what might be the connection, and I remembered the ONLY other time I went through that feeling was about 6 years earlier when I was in the hospital for three days doing a 72-hour fasting test to find out why I had chronic low blood sugar. On the first day, they gave me an injection of a blood thinner, because I was going to be lying in bed for those three days. When I went home, after eating, for about a week I told my husband my head is so clear! Now, I had to have that 3-day fast two more times, but those did not give me a clear head. But, those other two times they did NOT give me a blood thinner. So what I am saying is, the only two times I've had the clear mind feeling, the common denominator was the blood thinners. My goal this year is to go to a hematologist and present that to him.
  4. Before POTS, I would get that same weird reaction when drinking any sport's drink. It had absolutely nothing to do with the sugar content, because back then I used to drink a Coke or two a day, and had no reaction from it. I finally quit drinking them, and still do not drink them since having POTS. I don't know what the issue was with them and me. But it was interesting to see someone else with that issue!
  5. 🤗Hi Bombshell, I don't know if it is connected, but would love to find the culprit for the elevation, remove it, and see what gets better! I surprisingly do not have diarrhea, so very odd there. I guess that's why they have not offered Octreotide.
  6. I just want to update this thread again. Here it is five years later and my VIP levels have gone up to an astounding level of 1600 (<75)!!! I just had a very specialized scan to look for a Benedictine tumor (Gallium 65), and it was negative. So I have no clue why I have elevated levels.
  7. Thanks p8d! That sounds wonderful that your doctors advocated for you! I will keep my eyes and ears open to people mentioning if they have doctors that do the same, AND are closer to me(I live in the deep South). All the good places are a long way away.
  8. Wow, rereading this thread, and we still don't have but minimal new information 5 years later. And, still no new treatments. Does anyone know a good POTS doctor that focuses on the autoimmune component and actually does something about it???
  9. Firewatcher, so agree with your assessment of the medical system. When POTS hit, I was 46 years old. At that time, the doctors I went to seemed to want to get to the bottom of my health problem. As the years went by, especially now into my mid 50s, they seem to not want to delve deeply. As I mentioned, I quit going to any POTS doctors. This year I just started with a functional medicine MD, and hoping with time to make strides in the root of my issues. It may be a dead end, but I am trying that route. Looneymom, how is Tyler now? I haven't caught up with your story in years!
  10. Hey Firewatcher! I can attest that perimenopause makes everything worse. My POTS, which began 11 years ago, began while in the throes of perimenopause. In the middle of that 11 years, I finally reached menopause. I didn't notice any change in my hyper-symptoms at that time, but I can say a few years later, my lightheadedness is less. BUT, I've been couch-ridden for so long now, I am just soooooo unconditioned that I can't exercise for more than 3-5 minutes without being real short of breath. I cannot do the recumbent bike because of a hip replacement in 2016, and it causes the angle of hip movement uncomfortable. Honestly, when I joined here and read up as much as I could, I became hopeful that the POTS medical commnunity would come along with answers and help. I have not gone to a doctor for POTS in 2 years now. No one has helped in the past. I saw multiple cardiologists, multiple neurologist, etc. Some were "specialists" in dysautonomia, but they were not able to get me functioning. I am so let down with the medical community.
  11. I am writing in hopes to get a response from  Sue1234.... She/you posted several years ago about not getting goosebumps....As of about 2.5 years ago, I no longer get them either.... in a lot of research I too come up with Acetylcholine as a possible answer. I am no longer able to get aroused... I no longer feel tingles, I no longer feel the pleasures of a massage and even when my head is scratched/touched, I feel nothing! I have been to several neurologist and no one has an answer. The latest specialist tells me I have issues with my autonomic small nerve fibers and has suggested COQ12 and Vitamin B6 and 12. I have JUST started this so I don't know the results yet. 

    In the back of my head,I am stuck on Acetylcholine issues as Wiki says lack of this substance causes issues with arousal, memory and concentration.... I have all 3. 

    Anyway, before I go any further.. if you are still active on here, I would like to hear of your results or if the problem was ever fixed. PS... They have no diagnosis AT ALL... I have taken Cealis, and Mestinon. MS is ruled out even though I have 4 lesions on my brain, my spinal tap was negative..... PLEASE SOMEONE SHED SOME LIGHT !!! i AM 43 YEARS and took Mirapax for 15 years and stopped that a year ago when I quit smoking.... I also drank wine heavily daily....quit that 45 days ago..... Can anyone shed some light?

    Thank you.

    Elena

    1. elena194401

      elena194401

      I also do not gt ticklelish any longer...anyone can touch my feet and NADA, not a thing.

       

    2. sue1234

      sue1234

      Hi Elena,

      I still have no answers.  I still do  not make goosebumps and do not take any meds for anything.

      The only thing I am trying to do to see if it helps is get my gut in good working order, because that has been a huge issue for me. 

      If you get any clues, please let me know!

       

      Sue

  12. I'm not familiar with this, but would love for you to continue posting on any findings your doctor has, as in treatments and if they work. I love it when a doctor thinks outside the box!
  13. Wow! Glad you found THE doctor that put it all together! I sure do remember you. Can I ask why he thought of Adrenal Hyperplasia? I honestly thought, reading your story, when he said something was up with your adrenals, that the next sentence was going to say he thought it could be a pheochromocytoma! I have a slightly enlarged adrenal per CT scan, and a nodule on the other, and every couple of years a doctor tests me for a pheo and Cushing's disease. So, I am curious about the work-up he did for Adrenal Hyperplasia!
  14. Here I am 5 years later, and still addicted to black tea. Once again, feeling low for the first half of the day, and thinking about how I drink tea every morning. I drink about 40 ounces, in two 20 oz. servings a couple of hours apart. Then, water the rest of the day. Once again, I read an article about the nitric oxide properties of tea, and how it causes vasodilation. I think I read a long time ago that it lowers cortisol, too. SO, maybe I'm creating my awful days by just drinking my teas! I am going to switch to coffee beginning tomorrow, and I'll see if I notice any improvement in a month. I NEED to feel better. I have declined so much this year in my daily energy, that I feel like I can't even do my usual small amount of things that I normally do while pretty much housebound. I mostly sit in my chair, and I need to be able to cook and do things around the house. Not so much because they need to be done anyway, but because I NEED to feel like I can do some things in my limited life!
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