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About Pistol

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    gardening, my family, reading

    " And I think to myself - what a wonderful world!"
    Louis Armstrong

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  1. Hello @Viktor - this is a good question. I have HPOTS and I know that for a POTS diagnosis you need an increase of 30 BPM within the first 10 minutes of standing that is sustained, and for HPOTS your BP is supposed to go up as well. This was all the case for me. However - my sister has all of the symptoms you describe and that I share as well - HOWEVER she does not have an increase of HR upon standing. And her BP does not RELIABLY go up during TTT. She does have Hypertension though. So she has a diagnosis of autonomic dysfunction, and another time she was diagnosed with autonomic neuropathy, b
  2. I have passed out when sitting many times. It appears that once stuff hits the fan sitting is not enough to turn the ship around - I have to actually lie down. Just sitting will not necessarily stop the pooling - you are still upright. Lying down with my feet elevated helps me though.
  3. That is nonsense. GI issues pretty much always come with POTS, they are part of the package. And when I started with POTS symptoms I also started with generalized joint pains. Until recently I did not really know why they are listed as a symptoms of POTS but now I know that it has to do with autoinflammation. When I flare I also get the joint pains. NSAIDS do not seem to help me but a week of steroids completely stopped them ( except the tapering off caused a flare ). So there you have it - I agree with what @KaciCrochetssaid: he doesn't know jack! --- Sorry you are so bummed out, I know how t
  4. @MTRJ75 - yes, the video links will come out in mid November.
  5. @Derek1987 - since I have a history of seizure with flushing the ear my doc wants me to come to his office to have this done. I would have the ENT doc do it - they can actually remove the wax with a tool instead of flushing it out, I had that done and it did not cause an episode.
  6. I watched several of the sessions and they were very interesting. What excited me the most is that Dr Grubb eluded that earlier this year they were getting close to some new findings linking auto-inflammation ( vs auto-immune ) to dysautonomia, but due to COVID all studies and research had to stop. As soon as studies can restart he sounded hopeful that new information will come out. Sooooo awesome!!!! I love it when that happens 😀!
  7. @Derek1987 - the same thing happened to me, I too have HPOTS. I had a perforated eardrum and blood built up in the ear canal. Once the drum healed they flushed out my ear ( after using drops first ). While flushing I had a seizure (same mechanism as syncope), BP was high. I was told that differences in pressure in the ear or even the swooshing sound and the cold of the water hitting the drum can cause a sudden drop in BP - which in HPOTS will trigger the Sympathetic NS and the BP skyrockets. Best to avoid doing that 🙃!
  8. A great big THANK YOU to Chelsea Goldstein (who created the many wonderful articles under the "Living with Dysautonomia" tab. A wealth of valuable information that I wish I had when I first went through the trials of POTS and Life. Two thumbs up, Chelsea - this will help so many people!!! 👍
  9. Hello @Hippopotsamus - yes, I am extremely medication sensitive, this is a common problem with POTS. My specialist recommends to always start new meds with the lowest - or even half of the lowest - dose on the market. In some cases he even recommends pediatric dosages. -- I tale escitalopram 20 mg daily, but I started out at 1/2 a tablet. Wellbutrin I took Bupropion XL 150 mg - it really helped a lot and I took it in addition to the Lexapro but unfortunately developed a skin reaction and had to stop. Escitaloprma and Bupropion are the two SSRIs and SNRIs that Dr Grubb recommends and I found an
  10. @Hippopotsamushave you tried Bupropion ( formerly Wellbutrin )? It is an SNRI, therefore works on both Serotonin and Norepinephrine. It is often prescribed for POTS and has helped me.
  11. @brilliantlycrazy - yes, I am all better now. I ended up having to taper off more slowly - 10 mg for 3 days, 5 mg for 3 days, 2.5 mg for 3 says - then stop. The prednisone did help wonderfully for the inflammation and next time we will use it again but taper off slower. My doc said that 5 mg is still a therapeutic dose so you may want to ask your doc if it is OK to cut in in half and go dwon to 2.5 mg once you are finished with the 5 mg. Let me know how it goes - and good luck with the testing!!!!
  12. Hi Derek - wow, it sounds like it is overdue to get them out! -- I had many surgeries since I was diagnosed with POTS. Since you will be under general anesthesia you won't know what;s going on, but in order to keep you stable during the surgery they should give you at least one liter of Fluids pre-op, that's what helps me. There were times when my BP dropped dangerously low during the surgery ( not a problem, they have drugs for that ) and other when it got high, but if they use the fluids prior to and during the surgery my VS stay very stable. After the surgery you will probably be in pain, o
  13. @Derek1987 - just be honest. I had already lost my job due to POTS after over a year of trying to work in much limited fashion, even just sitting at a computer and using a wheel chair. I was turned down twice but when i had my hearing I simply described what it is like to live with POTS, how something as simple as the ringing of the phone can make me pass out or have a seizure, that I had to lie down in a filthy bathroom in a drug store or restaurant etc to avoid making a scene by passing out in public. I pretty much simply painted a picture of the reality of living with POTS and how it affect
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