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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, @Fujitsu, In addition to having a little at a time, you could try to have some food in your stomach when you drink, as that will help slow the absorption of the alcohol. My doc said I could try to have a drink and see how I did, but he didn't recommend it. So far, I've been reluctant to try anything more than a few sips after having eaten not long before, and no problems. But one of these days I will get up the nerve to try an entire glass of wine, which I, too, enjoy! Good luck!
  2. Good morning, @WBuffett! Good question! My understanding of beta blockers is that ones labeled "selective" work on one's heart rate, and "non-selective" ones, which is what mine is, work on the entire autonomic nervous system. Which seems to be what I needed, because my entire ANS was going haywire. What I'm wondering is if a non-selective beta blocker alone might help your wife - obviously that needs to be discussed in detail with her docs but if the Midodrine isn't helping to begin with, it may be worth looking into.
  3. Hi, @WBuffett, I am so sorry that you and your wife are dealing with this. You mentioned your wife had not tried a beta blocker - I am hoping that she will be able to at least try one, under her doctor's supervision. A small daily dose of a non-selective beta blocker (propranolol in my case, but there are many others) made me functional again. I know that a beta blocker doesn't work for everyone and that not everyone can take them but, knock wood, it has thus far worked for me. It doesn't take away every symptom and I still have flares, but it gets me pretty close to what I was before. I
  4. @POTSius, For me, definitely getting enough sleep and not waiting too long between meals, even if they're just small meals.
  5. @Alice Jean - I have a King Koil mattress on an adjustable base. With my doctor's approval, I sleep with my *feet/legs* slightly elevated, and not my head. Speaking only for myself, I discovered that when I slept with my head elevated, especially when I was very symptomatic but not yet diagnosed and on meds, the brain fog was much worse when I woke up. Knock wood, I sleep great on this bed; better than I did even before POTS showed up. Most of the bed places around here will let you try out a new bed in your home for a certain period of time, say, 30 days, 90 days, etc., so you might check
  6. Hi, @green, I'm glad you've been feeling better! I have never heard of racetams . . . what helped my brain fog (before I started taking Propranolol) was when I figured out that it was caused by poor blood flow to the brain, and started laying down for 20-30 minutes with my legs elevated. When I got up, the brain fog was significantly improved. My brain fog was the worst in the morning, which I eventually figured out was because I had been laying flat all night. Even now I sleep with my legs slightly elevated, with my POTS doc's OK. I echo @Zofie's sentiment about proceeding with cautio
  7. Hi, @Jwarrior77, I am so sorry to hear what you have been going through and I admire your strength!! I second what @jeff_jefferson2 asked - are you seeing any kind of doctor for this; do you have a diagnosis and are you taking any meds? Whether or not you are, what you need is an advocate. As strong and self-sufficient a person as you seem to be, you need someone in your corner. You need someone to accompany you to any doctor or hospital visits (I realize this may be difficult, since ER visits are generally not planned in advance . . . !) and who understands your condition and can h
  8. @Random-Symptom Man - This was me after my symptoms began in earnest but before I received a diagnosis and was taking any meds. I had gastroparesis twice in the four months leading up to my diagnosis (each time lasted about two weeks and I lost ten lbs. both times) and was reduced to eating small bites of baby food just to get some nutrition on board. When I could eat, I had all kinds of other issues. I am much closer to normal now - knock wood!! since taking the beta blocker and I absolutely agree that regular eating is much better for me. I also think you are right about the snacks
  9. Hi, @GasconAlex, I am sorry to hear you are going through this - do you take any meds at all that help? I am impressed that you can even get the compression garment on because I never could. I was sized by a professional and, based on the measurements he took and the sizing guide, he ordered me the correct size (these were compression tights) and strength as prescribed by my doctor (he actually gave me a written prescription for them), and I could never get them to even go up to my knees. This was before I was taking any meds - the med helps and so, even though I still have some symptom
  10. Hello, all. I hope everyone is feeling good today. I have a question relating to the possible effects of getting hungry as relates to POTS. Previously (pre-POTS), if I waited too long to eat and started to get really hungry, I would eat as soon as I could and then feel fine afterwards. Since being diagnosed with POTS, I've noticed that if I wait too long to eat - to the point where I am really hungry - I get exhausted and after I eat get even more exhausted! It's as if being hungry takes energy out of me or something. I usually eat small frequent meals so it's easy to get out of that "mode"
  11. Hi, @judyinthesky! I'm sorry you are going through this . . . I don't know if there is any type of dysautonomia that affects *only* the gut, but what I can tell you is that once my POTS showed up full-on, every single day from that day on I had gut issues, until I was diagnosed about four months later and started taking a low dose of a beta blocker. I had diarrhea and nausea almost every single morning. I made light of it by saying, "Pepto-Bismol, not just for breakfast anymore!" but it was annoying. Like you, my GI issues were stronger in the morning. (You also mentioned feeling better
  12. @WanderWonder I absolutely get more symptomatic when I have not had enough sleep or have been stressing/worrying about something. I take a beta blocker daily that helps (knock wood!!) but some things bring on "breakthrough" symptoms, and one of them is definitely if I didn't sleep well. I've heard the same thing - that people with POTS generally don't sleep well but, honestly, I think I sleep better with POTS than before I had it! At least since I've been on meds. When I was first diagnosed, my POTS doc did tell me to expect a flare if I got sick, such as a cold, so that could be what's going
  13. Before I was diagnosed with POTS and taking any meds, I occasionally had what I can only describe as "stomach palpitations" - it felt like heart palpitations, but they were in my stomack! Not sure if that's what you're feeling. It had gotten to where I was dizzy and lightheaded day in and day out so it's hard to tell if they coincided with any of those feelings. Sorry you're having to deal with this.
  14. I get the "whooshing pulse" sound in my ears. In fact, I'm getting it now. I'm guessing it's related to the POTS, because I don't recall hearing this before. I do recall hearing straight-out "whooshing" from the time I was little and if I was in a quiet place, but the pulsing is a new thing.
  15. Hi,@lieze, in my case, it's the getting upright again *after* bending over! One of the things my doc advised when I was first dx'd was, "Don't bend over and get up too quickly!" Funny thing is that when my symptoms first hit, I actually was doing stuff in which I was repeatedly bending over and returning upright. (Do you become symptomatic while you're bending over the first time, or after you have bent over, gotten up, and then bent over again to pick something else up)? The grabber absolutely helps. If you have a Harbor Freight near you, they have them for $2-$3, or you can order them f
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