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Delta

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About Delta

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    Advanced Member

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  • Gender
    Female
  • Location
    USA
  • Interests
    Dogs; music; hockey

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  1. Hi, @racingheart77, Is there any chance that what you feel is muscle twitching ("fasciculations") rather than palpitations? I know that sometimes they can feel like a pulse. Either way, I hope you get relief soon!
  2. Best of luck with your endo - I hope you get some useful answers!! This is a good point! I personally keep a tumbler of water bedside not only so I can sip during the night, but also because I take my med very early in the morning, before I get up for the day, so it will be "on board" when I do get up.
  3. I take 10 mg. of Propranolol, a non-selective beta blocker, once a day. My POTS doc, who is a neurologist, actually wanted to start me on 20 per day and I asked if I could start with 10 and move up if need be, and he was fine with that. I started with the 10 almost three years ago and so far, so good. I saw where you were taking that but it didn't seem to help you, but you'll find by reading the posts on here that the same beta blockers (and other meds) do not work for everyone, and some people have to try out different BBs or other meds before they find the right one/combination. I'm wonderin
  4. Hi, @Teodor, I do not have EDS, but this was certainly the case with me, and I think it's actually pretty common in people with POTS/dysautonomia. My symptoms were always worse in the morning and then, by evening, it often was almost as if there were nothing wrong. My understanding is that this happens because being "up and moving around" all day (basically exercise), to the extent that one is able, improves blood flow vs. laying in bed all night, and blood flow issues cause a lot of the symptoms. Once I was diagnosed and prescribed meds, my symptoms improved greatly (knock wood)!!
  5. @Positivelyjenny, I get about six. I actually sleep better since being diagnosed with POTS than I did before all my weird symptoms showed up!! (??!)
  6. This is the story of my life. I was never a fan of drinking a lot, especially water (Boring)! But then a few years ago I had kidney stones (OUCH), and the doc said that I needed to drink more water so I wouldn't keep getting them (I had them three times). I said that I wasn't often thirsty and only drank when I was really thirsty. The doc's reply was interesting: She said that we're *supposed* to drink when we're not thirsty because if you get to where you actually feel thirst, that means you're already in a deficit situation. (!!) So between that and POTS, I've become one of "those people" wh
  7. @merkat30 It's called "livedo reticularis" (you can go on line and see all kinds of pics) - I've read it can be caused by a number of conditions that affect blood vessels, so that would include POTS . . . I remember having it all over my legs after sitting outside in the sun on a warm day in long jeans = roasting. This was, like, 20 years ago, before I had any (known) symptoms of POTS. Eventually it went away and I don't get it on a regular basis.
  8. Hi, @Zach Martin I am so sorry you are dealing with this - I had awful brain fog when my POTS symptoms first started showing up. I did also get dizzy and light-headed, but that came on in earnest weeks after the brain fog. Like @Sarah Tee, the brain fog did improve in the evenings, so I figured out that when I was up and moving about all day, at least to some degree, that was improving blood flow to my brain and that's why it felt better. I did try sleeping with the head of the bed elevated, and that seemed to make it worse. So then I tried laying down with the *foot* of the bed elevat
  9. Hi, @CallieAndToby22, What's helpful to me with the shaving is waxing, cus then I don't have to worry about hair for a while! If it's safe for you to go out and get a wax and you are able and your skin will tolerate it, it's worth it. If not, you could try Veet from the drug store, which are these strips that have wax. It's just nice not having to worry about it for days! I feel for you with the bath thing . . . before I was diagnosed and prescribed meds, I was afraid to even sit for a bath (and I love baths!) because I was afraid I was going to pass out in the tub! I had to take ba
  10. @Knellie, I hope you're feeling good today. I've gotten these a few times, not often and very subtly, in the past few years. I suspected it was POTS-related due to the timing, but yeh, I've also heard/read that this can be part of a migraine's "aura". I don't get migraines, at least, not so far (knock wood!!), but I looked it up and they're called something like "olfactory hallucinations", "phantom smells", etc. Hopefully you won't start smelling stuff like rotten trash, dead fish, etc.! 😝
  11. Hi, @TKH, and welcome! Yes, I definitely get more "fuzzy-headed" on days when it's cloudy/rainy (= low pressure). Not every time, but I've noticed it enough that I think it's more than a coincidence. I think that happens to a lot of us on here. I hope you're feeling well today!
  12. This used to happen to me before I was diagnosed with POTS and prescribed a low dose of a beta blocker. Or when I made a sudden quick move, such as pulling off a sweater over my head in a quick sweep.
  13. I actually am taking Propranolol! It's a very low dose - 10 mg. The doc actually wanted to start me on 20 and I asked if I could start with 10 and go up if need be, and he was fine with that. Were you taking a higher dose of the Propranolol? I ask because I have read quite a few times that, for some reason, Propranolol works best on POTS at small doses and I'm wondering if maybe you were taking a higher dose so it wasn't much help to you. You may have to try different BBs before you find the one that works best for you. I feel for you, not taking any meds for the dys., because before I was dia
  14. @Knellie, Hi, and I'm sorry you're dealing with the gastro stuff - it is pretty awful. My POTS treatment has helped mine. Are you taking any meds for dysautonomia, such as a beta blocker or other? I had two two-week episodes of it in the months leading up to my POTS diagnosis; in both of those, I lost ten pounds in two weeks. I was diagnosed with gastroparesis by a gastro based on my symptoms; I didn't have the gastric emptying, eggs, etc. test. I had been making the rounds of doctors and specialists, trying to find out what was going on, and had by then been referred to the neu
  15. @CallieAndToby22 This is bizarre. How can they determine that without even seeing you, either in person or even just via a phone or on-line consultation?! It's so bizarre, I almost wonder if they got your records mixed up with someone else's. Can you contact the cardiologist who referred you, explain what happened and ask them to either 1) Intervene; or 2) refer you to another dys specialist? I am sorry you are having to deal with that.
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