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Everything posted by Delta

  1. @Pistol, I am sorry to hear this and I hope you and your husband/family are on the way to a fast and full recovery!!
  2. Hello, all! I hope everyone is having a good day. I am thinking about getting inked on one of my upper arms. Do any of you have experience with tattoos - has anyone gotten inked after being dx'd with POTS/dysautonomia? I asked my POTS doc, who is a neuro, and he said that from a neurological standpoint, he saw no problems with it. I know to take precautions - stay hydrated, eat enough, and don't have it done if I'm flaring that day! But I'm wondering if the pain or even the ink might trigger some kind of autonomic response/flare. (Never done this before, in case that isn't obvious, LOL). Thank you for any thoughts, advice or experience you'd care to share!
  3. @MikeO, Mama and babies!! Great pics. What kind of apples?
  4. @MikeO, If it involves taters, which I love in any of their iterations, and green beans, I'm all in! Thanks for sharing! (Have you been rummaging around in my kitchen?! We have exactly one "Corelle Livingware" dinner plate in the house, and that is exactly what it looks like)!
  5. Hi,@Knellie, Pepto for me, as well. In the months before I was diagnosed and prescribed meds, I was nauseated Every. Single. Morning. Plus diarrhea. My motto at the time was, "Pepto Bismol - not just for breakfast anymore"! I hope you find something that will bring you relief soon.
  6. @Scout, I believe I have hyper POTS based on symptoms, although when I was diagnosed, the doc just said, "You have POTS". We didn't discuss various types. I debated the vaccine for a while myself; I also asked my POTS doc's opinion, who advised me to get it. But I still wasn't sure, and I just finally figured that if I got covid, whatever happened would likely be worse than side effects. My husband and I took the J&J . . . we know a lot of people for whom the side effects of the two-jab regimen sounded pretty unpleasant. The only side effect I saw that I woud relate to hyper POTS is that for about an hour right after getting the jab, my blood pressure was up. Like, too high up. 170-something over 80-something. After a while it came back down. The other side effects were pretty garden-variety and lasted for about a day - chills, low grade fever, fatigue, headache and body aches. But no POTS flare.
  7. @Sarah Tee @cmep37 Talk about attitude! When I was still making the rounds being referred to different doctors while they were trying to figure out what was wrong with me, I saw this one cardiologist, young guy, who had a really flip attitude about POTS. I first met him when he stopped by my room the morning after the hospital had kept me overnight, and he had recognized my name and was, like, I see you have an appointment with me next week, so I thought I'd stop by and see what's going on with you. I thought that was very cool; very proactive. But then when I saw him a few days later at the actual appointment, he started talking about POTS and he was, like, making fun of it, saying it was a "junk diagnosis" (yes, he did) and making fun of doctors telling people to eat more salt. Yeow. A few weeks later I was diagnosed with POTS by a neuro, whom I now see for POTS. So honestly, I think if you see a cardio who doesn't know much about POTS/dys but is *open to learning about it and to working with you on your treatment*, you are probably in good hands but, along the lines of what @Pistol commented, a good primary or other doc can be just as good if they know what they're doing and take you and your condition seriously (and don't have a sucky attitude)! @Sarah Tee I hope you are able to get to a physician who can help you find answers and relief soon!!
  8. 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!
  9. 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.
  10. 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 wondering if another BB might help you. Although I do have a question: What was your dose of propranolol? I ask because I've read that low doses of BBs are more effective at treating POTS/dys, whereas higher doses have been shown to be of little or no benefit. I'm wondering if you may have been prescribed a higher dose. That's all I take as far as pharmaceuticals. I also drink more water than I used to, as it's important to stay well-hydrated to keep your blood volume up, and try to get enough salt in my diet. What also helps me with blood flow is definitely exercise, even if it's just being up and walking. You don't have to be a gym rat or a runner! Just move about when you can. Also, I used to wake up with the worst brain fog so, with my doctor's approval, I sleep with the foot of my bed slightly elevated (we have an adjustable bed) to help blood flow to the brain, since when sleeping I'm in bed for hours and obviously not moving about. This happens to me from time to time - it happened more often before I was diagnosed and treated. I will wake up in the middle of the night feeling anxious, sweaty and heart racing, for no apparent reason! I can only assume it's the dysautonomia talking, because I felt just fine before going to bed! I'm sorry you have so much trouble getting some good sleep - I've discovered that not getting enough sleep can actually trigger flares for me, and I'm guessing it's not helping you. I hope you find relief from your symptoms soon - 17 years is a long time.
  11. 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)!!
  12. @Positivelyjenny, I get about six. I actually sleep better since being diagnosed with POTS than I did before all my weird symptoms showed up!! (??!)
  13. 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" who tote a water bottle everywhere!
  14. @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.
  15. 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 elevated (our bed is adjustable) when the brain fog was really bad, and the fog significantly cleared within a half hour. So now I sleep with the foot of the bed slightly elevated, with my doctor's approval. And I also take a low dose of a beta blocker - Propranolol - which has been very helpful, knock wood loudly! I did get a pair of the compression stockings before I was prescribed any meds - I got the panty-hose type - and, although I was professionally fitted, I never could get them completely on. They're sitting in my closet. I hope you find relief soon!!
  16. 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 baths when my husband was around . . . believe me, at that time, a bath was the least of my worries, ha ha! So sometimes it was like . . . days. Much less washing my hair. I was so gross. Are you able to sit in the shower with a shower chair? That helped me immensely. If you don't already have one, get a shower head attachment with an extra-long hose - most hoses are about 5'; the longer ones are at least 6'. They will reach everywhere, if you get my drift, even when you're sitting in the shower chair. Re: the deodorant thing - my husband and I use deodorant, not anti-perspirant, for different reasons, and we have found some good stuff you may be able to use. My husband has sensitive skin and anti-perspirants and deodorants always gave him a rash under his arms . . . a few years ago we found this deodorant (*not* anti-perspirant) cream in a little jar called "Yodora" . . . it is awesome stuff. It works for my husband, even if he's been out working in the yard on hot, humid day, and it works for me. It has a very light and pleasant smell. It does not irritate my husband's skin in the slightest. I use it because, being a deodorant and not an anti-perspirant, it does not contain aluminum. What's amazing about it is that a little goes a very long way - the 2-oz. jar lasts at least a year, even with daily use. I've also recently been using a deodorant made of citrus extracts called "Waleda" - found on the "C. O. Bigelow" Web site. Good stuff. It's a liquid spray in a bottle that has a light lemony scent; made in Switzerland. I also have to say that Johnson's corn starch (no talc) baby powder works really well as a deodorant. I'm guessing straight corn starch may work just as well. Sending you good vibes!!
  17. @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.! 😝
  18. 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!
  19. 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.
  20. 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 diagnosed, I was a mess and it seemed as if it was getting worse every day. I hope you find relief *soon*!!
  21. @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 neuro who told me he strongly suspected POTS and gave me a referral for the TTT. So by the time I got to the gastro and told him that I was scheduled for a TTT, he said that the POTS was likely causing the gastroparesis, so go have the TTT and if it turns out you have POTS, see if whatever treatment that is prescribed will help. If it wasn't POTS or if the treatment didn't help, come back and see him. Knock wood, the treatment prescribed by the neuro after the TTT - a low dose of a beta blocker - helped, and I haven't had any gastroparesis episodes since then. That was a little over two years ago. I have had what I think are minor episodes compared to what I used to have, and they have been tolerable. So what helped me when I had the severe episodes was drinking stuff like Ensure and Carnation breakfast drinks; Gatorade; drinking broth and eating what soup I could handle (for some reason, I was craving chicken soup when this was going on); and as much strawberry shake as I could handle. Drinking water is good, but you need the calories and nutrition on board. If you can handle even a part of a shake, that will be helpful. Also - I bought the small jars of various types of baby food! They were kind of short on flavor, but they enabled me to get some meat and veggies on board. Even if they were teeny-tiny pureed helpings (sometimes I couldn't even finish a jar), it was better than nothing. I had nausea just about every morning - two words - "Pepto Bismol". It may be worth a try if you've not already tried it - it helped my nausea. I've said on here before that at that time, my motto was, "Pepto Bismol - not just for breakfast anymore!" because the nausea was just Every. Morning. I hope your gastroparesis and other GI issues get resolved soon. Wishing you good health in the New Year!
  22. @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.
  23. The "D" in front of the "NP" means she has her doctorate in nursing, and the "C" after "FNP" means she is a *certified* family nurse practitioner. The "C" is the same credential as in "CNP" - certified. I've never been through this process but, honestly, I can't imagine that either an NP or an CNP would not be considered a qualified medical professional, as they are permitted to not only diagnose conditions, but also to write prescriptions, including for controlled substances. I also can't imagine that you would be the first person to have asked your practitioner to fill out such a form, and I'd guess she would have told you if only an MD/DO could fill it out. Unless she was very, very new to practicing and simply had not had the experience.
  24. @Derek1987 Is she an NP or a CNP? It may make a difference. I found this on line . . . NP (Nurse Practitioner)An NP is an RN who has completed either a master’s or doctoral degree program, plus clinical training. NPs provide a full range of primary, acute, and specialty care services with an emphasis on the health and wellbeing of the whole person. NPs can practice autonomously in many states, but some still require the oversight of a physician.CNP (Certified Nurse Practitioner)A CNP is an RN who has additional education and training in a specialty area, such as family practice or pediatrics. CNPs have a master's degree in nursing and board certification in their specialty. For example, a pediatric CNP has advanced education, skills, and training in caring for infants, children, and teens. *CNPs are authorized to diagnose illnesses, treat conditions, and provide evidence-based health education to their patients.*
  25. I have had similar occurrences; they have calmed down (knock wood, hard and loud!!) since being diagnosed with POTS and prescribed the beta blocker. One instance that I recall in particular is when we had a thunder storm that led to hail falling. The sound of the hail falling on the roof (our house is one story) startled me so much that my heart rate went way up. A few days later, we had more storms coming in and the weather people on TV were saying that more hail was coming with it. So would you believe, I actually got in my car and drove into town and went into one of those convenience-type stores they have at gas stations nowadays, and waited out the storm there because I was pretty sure I wouldn't hear any hail on the store roof and I didn't want to get startled like that again. In another particularly unpleasant instance, I was sitting at one of the little tables at the front of the grocery store, sipping water and reading my paper. I had just dropped off one of our dogs at the groomer's and was waiting for her to call me when he was ready. As I recall, I had had what I believe was an adrenaline surge that morning (I am not diagnosed with *hyper*-type POTS, just "POTS", but that's the type I believe I have). My newspaper has these word games I like to do; in one of them, you have to find a specific number of smaller words inside a longer word. So I'm already trying to be calm because I was jittery from the adrenaline surge; I'm daily trying not to freak out because I don't know how serious what I have is (still at that point undiagnosed and unmedicated); I open my paper to the word game page and here's the word: MORIBUND. Yeh. Right. I could feel my heart rate going up: I put on the pulse ox thing and literally watched it go up to 136 just sitting there. I threw the paper in the trash.
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