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Delta

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Everything posted by Delta

  1. 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!!
  2. @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.! 😝
  3. 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!
  4. 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.
  5. 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*!!
  6. @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!
  7. @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.
  8. 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.
  9. @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.*
  10. 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.
  11. Hi, @Knellie, I do "puttering" things that are nonetheless useful. Things I can do slowly if I need to. I like being outdoors but I can't do the heat any more so, when it's not too hot and humid out, I go out with my "stick grabber" - one of those hand-held stick things that has pincers on the end that pick something up when you squeeze the handle - walk about the property and pick up sticks and limbs that have fallen from trees (we live on ten acres, so there's almost always something to pick up). I place them in a small wheelbarrow and wheel them to a pile that my husband will eventually burn when the pile gets big enough. The "grabber" is helpful not only as a back saver, but also because the POTS doc told me not to bend down and get up too fast, which is exactly what I would otherwise do when picking up the sticks (and what I was actually doing when my more alarming symptoms first appeared and I landed in the ER). On a nice, cool, breezy day, it's a very pleasant and relaxing thing to do (did it today, in fact) and there is no rush or pressure involved; I can stop whenever I feel I need to; plus, I get exercise! Maybe not intense, aerobic exercise, but I am on my feet and moving about, and breathing fresh air. I also like to play the guitar and sing, and walk our dogs. And I have a favorite newspaper from my home state that gets delivered daily; I like to read that and it also has some fun word games I like to do.
  12. @HCD77, If you haven't already planned for this, get someone to go with you, a trusted friend or family member. Because as @KiminOrlando said, a lot *is* going to come at you at once. The friend will be able to pick up on things you may miss and maybe even ask some questions on the spot that you won't think of. The doc may also choose their words a bit more carefully when they see you have an advocate there. And both of you take copious notes. GOOD LUCK!!
  13. @Derek1987 I'm not sure if this is what caused your reaction, but it sounds as if it *may* have contributed - whenever you or anyone else flushes or rinses your ears, use water at room temperature - not hot *or* cold. A few years ago I was having my ears cleaned by a PA and she used cold water and I became very dizzy, like room spinning dizzy while she was doing it. This seemed odd to me because I remember having had it done when I was in my teens and I didn't get the slightest bit dizzy. I later learned that she should have used room temperature water. This was a few years before I was diagnosed with POTS or had any full-on POTS symptoms. Good luck with the tonsils!!
  14. @HCD77, Smart move to just rest for a day - I have learned to not underestimate the value of simply resting! And don't confuse "resting" with "sleeping" - sometimes all it takes is just relaxing, not doing a lot of activity and, most importantly, let your mind rest and be free of worry (I know, easier said than done). Getting in touch with your limitations can be a challenge because they often vary from day to day! But you do get to know your body after a while and what it's trying to tell you - listen. I hope you are feeling well today!
  15. @HCD77, Are the symptoms you describe typical POTS/dysautonomia symptoms for you? Because prolonged sitting can definitely cause POTS/dys symptoms to flare up. If I sit for too long, say, at the computer or in a doctor's waiting room, or even out at a restaurant sitting at the table, sometimes that brings on tachy, palpitations and/or lightheadedness. So I try to get up and walk around, pump my legs, etc., for a few minutes if I'm sitting longer than 30-40 minutes. Before my symptoms came full-on and I was diagnosed, I used to wonder why I would start feeling light-headed after sitting at the table for a while, doing things like going through the mail and writing bills. It was so subtle and fleeting that I almost wondered if I could be imagining it, but I knew I wasn't. I now know that was early POTS/dys. Note that I do not *always* get these symptoms if I've been sitting for a while. But sometimes I do. I hope you get to the bottom of your symptoms soon!
  16. @Hippopotsamus, Mine went away (knock wood!!!) once I started taking the beta blocker (propranolol) I was prescribed. I felt buzzing in my stomack, as if I had swallowed a cellphone that started vibrating, and even in my head. I hope yours goes away soon!!
  17. @HCD77, I've wondered about this myself - the best I could come up with, assuming that one does not have any infections or other causative issues going on, is that the body sometimes gets tired from fighting/working against something *that isn't natural to it*, such as dysautonomia. Also, if you're not getting enough sleep or worrying a lot - both of these, separately as well as together, can truly wear a person down in terms of fatigue. In fact, I can tell you from experience that worry will absolutely lay a person out if they don't get a handle on it. I'm sorry you're dealing with this and I hope it takes its leave of you soon!
  18. @MomtoGiuliana@yogini @Scout@KiminOrlando @p8d@HCD77 @cmep37 @Pistol Hi, All, Thanks again for all of your comments and advice, because absolutely everything has been helpful. The comments have been all over the board, but every one of them makes perfect sense. I did finally hear back from my POTS doc's office (the CNP and not the Doc himself), and she said that she related my concerns to him and he said there should not be any problem in terms of a POTS flare with my getting the flu shot. But, after reading all of the comments, talking to others and listening to my gut feeling, I've decided, for the time being, anyway, against getting the shot. As I mentioned in my original post, I've never had a flu shot and the last time I had the flu was in Oct. 1996 and, before that, probably when I was a child. I am retired now but, in the almost 30 years before I retired, I rode either a commuter bus or van pool to and from work, packed full with people, and did not get the flu, except for that one time. Also often rode the subway downtown where I worked. Came in contact with a lot of people at work and did not get the flu. I'm hoping that because we are all now wearing masks, social distancing, washing our hands frequently and still not going out as much due to covid, that might even further lessen chances of the flu spreading. Thanks again to everyone and I wish all of you a healthy, flu-free and POTS-flare-free season!!
  19. @Ashc, Snowed in at home for a couple of days with my husband and the dogs, a hockey game(s) on TV, and something that smells good simmering on the stove or in the crock pot!
  20. @Pistol, @cmep37, @HCD77, @p8d, Thank you all for your responses, all of which are helpful and very much appreciated!! At this point I am inclined to not have the shot, although I am waiting to hear back from my POTS doc for his thoughts. I will post again once I've heard from him. Thank you again!!
  21. Hi, everyone, I've never had a flu shot before. I do not usually get the flu - the last time I had it was in 1996. But this year I am considering it, due to covid - I do not want to make myself more vulnerable to covid - as well as a potential POTS flare - by getting the flu (my doc told me to expect a flare if I got sick, as with a cold or the flu). However, can just getting the flu shot make me more vulnerable to a POTS flare, and then possibly covid because of the POTS flare, since it will stimulate my immune system as a cold or flu would? What do people here do as far as flu shots go, and is covid changing what you would normally do? Thank you for any input.
  22. Hi, @Sam4877, I am sorry you are dealing with gastroparesis and GI symptoms - it is pretty awful. I had the burping almost from Day One when it became very obvious that something was wrong (palpitations, lightheadedness, etc.) Because I had heard that some people experience indigestion as a heart attack symptom, and burping is part of indigestion, and I was having palpitations and tachycardia . . . you can see where I was going. Then came the full-on gastroparesis. As others on here have said, it's important to get your nutrition. I ate the small jars of baby food cus that way I could get stuff like meat and veggies, even if the portions were teeny tiny and mooshy. I ate canned (Pro gresso Home Style) chicken soup when I could - for some reason, I was craving chicken soup in the four months of craziness leading up to my diagnosis. I drank broth and stuff like Ensure and Carnation Breakfast drink. As much strawberry shake as I could handle. I had two separate episodes where I lost ten pounds in two weeks. By the time I got to the gastro, the neuro I had been referred to by another specialist had scheduled me for the tilt table test, as he strongly suspected I had POTS. The gastro diagnosed me with gastroparesis based on symptoms and told me to see what the TTT said - he said if it was POTS, the treatment would likely be helpful and if it wasn't, to come back and see him. So I was ultimately diagnosed with POTS and prescribed a small dose of a beta blocker which, knock wood, has been helpful. I got my ten pounds back, yay, and then ten more for good measure, thank you, strawberry shakes, ha!! Are you diagnosed with POTS or dysautonomia in general, and taking any meds? I hope this gets resolved for you soon.
  23. 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!
  24. 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.
  25. 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 can drive again; I'm not dizzy and light-headed 24/7 (I did have pre-syncope, although I never passed out). I can walk through my house without getting tachycardic. I can stand up in the shower and even wash my hair, and stand at the sink and wash the dishes!! I, too, had bouts of gastroparesis. My doc did tell me to get as much exercise as I could, as the deconditioning you keep hearing about is a real concern, and the beta blocker has made that possible. Before that, I couldn't push a grocery cart through the store or carry a 20-lb. bag of dog food without getting tachycardic and high blood pressure. If something scared or startled me, I would get tachycardic. I also drink more water, try to make sure there is enough salt in my diet, and try to eat frequent small meals because I've discovered that allowing myself to get hungry can bring on symptoms. The doc wrote me a prescription for compression stockings and, even though I was measured by a professional, I never could get the things on so they're sitting in my closet. One thing about the beta blocker, in case your wife tries one - I take mine while still in bed, an hour or two before I actually get up in the morning, so it will be fully on board by the time I get up and start doing things. Also - and this is speaking only from my personal experience - I found that when I slept with the head of my bed raised, the "brain fog" worsened. I have an adjustable bed and, with my doctor's OK, I sleep with the *foot* of my bed slightly elevated. Just a bit; it doesn't take much. I believe this helps blood circulation to my brain. I wish you both the best of luck and hope that a treatment will be found for your wife that will be effective. She is fortunate to have you in her corner!!
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