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Delta

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Everything posted by Delta

  1. @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 in to that. For me, it was worth every penny. Wishing you best of luck, a comfortable bed and restful, refreshing sleep!
  2. 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 caution, especially if you've not already discussed these supplements with your doctor or even your pharmacist. If they're not widely used for POTS patients, your doctor or pharmacist may have ideas/knowledge of why. I wish you good health and continued improvement!!
  3. 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 help you communicate with the providers. This could be a friend or family member (parent, sibling? Your Dad, maybe, seeing as it seems from your post that the light bulb went on for him?) or anyone you trust. It could even be your doctor, or a PA, whomever you see who understands your condition. If you have been diagnosed with POTS/dysautonomia, get a letter from whoever diagnosed you explaining your condition and literally carry it around or have it on your phone. Show it to whoever cares for you if you wind up in the ER again. If you have been diagnosed with POTS/dysautonomia (POTS is a form of dysautonomia), can you talk with your doctor about regular IV saline therapy? You mentioned how much better you felt in the ER after receiving fluids and I know there are people on here who also receive this on a regular basis.
  4. @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 - I had been in the habit of always having something with me, a package of peanut butter crackers or a bottle of Ensure or Carnation, etc., and I kind of got out of that habit. Letting myself get hungry seems to cause me problems I didn't have before POTS. I think sometimes the med fools me into thinking I am back to my old self. Ha. I remember my doc did say when he diagnosed me that pretty much anything I did before POTS was off the table and it would be kind of like starting from scratch. I thought at the time he was referring more to activity and exercise but I think now he meant a lot of different things along with that, such as eating routines! @Peter Charlton - This was when I had the gastroparesis described above (although I did not go 42 hours with out eating anything; I ate very small amounts of baby food every so often). These days I can eat pretty well (as evidenced by the ten additional pounds I put on after putting back on the ten I lost when I had gastroparesis) but, as mentioned above, letting myself get hungry seems to affect me in a way it didn't before POTS. Thanks to you both for your comments!!
  5. 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 symptoms, I am at least functional these days (knock wood) and the compression tights are in the closet for now. When you stopped/re-started/reduced using the compression garment, did you first discuss with your doctor? If you've not already done this, I am wondering if it might help to adjust whatever med(s) you may be taking as you change the frequency you wear the garment. There may be trial and error and, of course, consult with your doctor before making any kind of changes. Best of luck and I hope your issue will be resolved soon!
  6. 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" if I'm in a situation where there's no food around. Does this happen to anyone else? I never noticed this "pre-POTS" so I'm guessing it could be related to POTS, and it seems like it's happened too many times now to be coincidental. If it makes any difference, I take 10 mg. of a beta blocker (Propranolol) once a day, in the early morning. Thanks for any thoughts/input!
  7. 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 during the second part of your day - this was me, too, and actually, from what I've been told and read, it's pretty common with POTS). I also developed gastroparesis on two different occasions within those four months, each lasting about two weeks, in which I lost ten lbs. each time because I could only eat teeny tiny bites of anything. I also started burping all the time, which at first made me think the problem might be my heart because I was also having the palpitations and I have read many times that symptoms of a heart attack could mimic indigestion! I also got what I believe were adrenaline rushes. Have you been tested for dysautonomia at all; i.e., tilt table test? Have you had the opportunity to discuss the POTS/dysautonomia possibility with a doctor? (I generally say POTS because my doc said to me, "You have POTS", but POTS is a form of dysautonomia). Did your symptoms appear shortly after you began taking any new medications? I've never taken an antidepressant and I wasn't taking any meds when the POTS showed up, but I had a few symptoms in the months and even years leading up to it that I had been blowing off and that I realize now were related. If I were in your shoes, I would do two things - first (and you may have already done this) - if you were taking any meds or supplements before your symptoms began, research the side effects. Our pharmacy gives out these handouts with every filled prescription that list possible side effects, and even those may not list every possibility. Don't change or stop taking any meds without first talking with your doc, but at least talk to the doc or even your pharmacist if you think there may be a possibility you are experiencing side effects. The second thing I would do is to be evaluated specifically for dysautonomia. In my case, I ran the gauntlet of doctors and specialists before an endocrinologist who ran many tests that turned up nothing referred me to a neurologist, who did in fact diagnose me. I went to a GI doc the second time I had the gastroparesis and by that time the neuro had already scheduled me for a tilt table test for POTS, so when I told the gastro that, he said, "See if it's POTS - if it is, your treatment will likely help this problem. If it's not POTS, come back and see me!" He knew that POTS affects the gut. So far, the treatment - the low-dose beta blocker - has been working. Knock wood!! I hope you feel better soon. Believe me, you will find that people here are very kind. There is a lot of good information on this forum and it was very helpful to me when I was stumbling around trying to find my way. In fact, it still is helpful to me! Wishing you all the best and happy and healthy days ahead! P.S. Edited - apology for length!! POTS has clearly not affected my ability to be long-winded!
  8. @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 on with your allergies. Like @Pistol I, too, am affected by ragweed in the late summer/early fall.
  9. 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.
  10. 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.
  11. 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 from their Web site. The type I have won't help if I'm wanting to pick up, say, a can of soup that fell on the kitchen floor, because the grippers don't open wide enough and there's no place on a can you can grab on to, but they help for almost anything you can manage to get a grip on. And, as you said, they make heavier-duty ones, and ones with longer reach, etc. You will probably laugh at this, but I have also used long kitchen tongs with rubber grippers to pick up some things! They're not as long as the grabbers but, in some cases, they get the job done. Another thing that helps me when I'm working outside (when it's not hot and sunny) is one of those little rolling carts you sit on and move along as you do things like pull weeds, etc. I'm wondering if something like that might help you in your home; if the wheels wouldn't damage your floors, you could kind of roll from item to item to pick things up (have a li'l bag with you to put them in). And if you're able, use your feet - I did this pre-POTS anyway just for fun - pick up soft stuff like clothes or grocery bags with your feet or even a broom handle or similar. I'm sorry you're going through all of this frustration with such a houseful - I thought I had a fullish house with a husband and several dogs! I hope things improve for you soon.
  12. Hi, @Yhoun, I'm not sure if this is the same thing, but I've had buzzing sensations where it felt as if there were a phone vibrating in my stomack! A while back, I even felt buzzing in my head. And I have felt it in my legs/feet. These greatly improved (knock wood!!) after I was diagnosed and started on meds. I'm guessing it's POTS-related.
  13. Hi @Ervé Joseph, I have had vibrations in my midsection, as if a vibrating phone were in my stomack! I don't recall any cramping. These improved after I was actually diagnosed with POTS and started on meds. A while back, I actually felt vibrations in my head!! Are you diagnosed with POTS or dysautonomia in general?
  14. Hi, @lieze! Last year, I had a health aide come to my house weekdays for about six weeks. My insurance didn't cover it and I'm not on Medicare - we paid out-of-pocket. However, we were able to deduct the costs as one of our medical expenses (and we had a mess of 'em) on our income taxes - depending on your situation, you may be able to do this, too. Wishing you good luck!!
  15. Hi, @ljfoster, I've never gotten very thirsty myself. (This is all pre-POTS). There have been hot summer days when I craved a lemonade or something but in general, I have to remind myself to drink. I've had kidney stones, which the docs say is in part because I don't drink enough water, but they also tell me they are familial and my older sis has had them. When I mentioned to one doc that I don't drink when I'm not thirsty, she told me that the fact that one is thirsty actually means that they already should have been drinking. In other words, I'm *supposed* to be drinking when I'm not thirsty! I'm not so sure I believe that but I've had kidney stones three times and that was three times too many, so I try to keep on top of the water thing. But, as another poster said, I don't particularly enjoy it!
  16. Hi, @Derek1987, I haven't been through this process but what I do know is that if I had to go through it, I would hire an attorney who specializes in handling SSDI cases. They will know, among other things, how to obtain proper documentation. You could meet with the attorney and decide if you're comfortable with hiring them; you could also try doing the first application on your own and if that is rejected, consult with the attorney then. If I were in your shoes, I would start with the attorney mainly because the anxiety thing is too easy for people to latch onto as a reason to deny the claim, but you may do well without one. However you decide to proceed, good luck!!
  17. This happened to me when I rolled over too fast before I was diagnosed and on meds. Other rapid motions would cause tachy, too, such as pulling off a pullover over my head in one fast move. Then it would calm down after a short while.
  18. Hi, @Cinereous! I'm sorry you are not feeling well. Following is something I posted to someone else who was experiencing GI symptoms. The first thing I will tell you is - DON'T PANIC. I had this (early satiety, no appetite) last year . . . in my case, this was due to gastroparesis and I'm sure any anxiety I was feeling wasn't helping. It happened to me two distinct times last year when I was still being worked up by different specialists and not yet officially diagnosed with POTS or on any meds. It turned around on its own both times. Both times, I lost ten lbs. in two weeks. I'm not overweight so it was scary but, honestly, I think it's scary no matter what someone's weight situation is. Anyway, here's what helped me - I drank broth, Pedialyte, Gatorade, Ensure, Carnation Breakfast drinks (in a bottle, kind of like Ensure), milk, and of course water. And my personal favorite, strawberry milk shakes when I could put more in! I had just baby-small portions of actual food - I literally bought jars of baby food and ate what I could so I would at least have some balance in what I ate - meat, veggies, etc. I could only take a couple of bites and I would feel full. I also ate what soup and broth I could. Don't ask me why, but I had a very frequent craving for chicken soup when my symptoms were intense and I wasn't yet diagnosed. If there is *any* kind of food you really like, that is easy for you to eat, now's the time to eat that, even if you can only take a couple of bites. The second time it happened, I went to a GI specialist . . . he said it sounded like gastroparesis and when I told him I was scheduled to be tested for POTS (TTT), he said it could very well be POTS-related, so go do the test, if it's POTS get treated, and if that didn't help or if it turned out to not be POTS, to come back and see him. I remember he told me I should be getting 1700 calories a day and I was, like, I can barely do 500. It hasn't happened (knock wood!!) since I've been diagnosed and placed on a low dose of a beta blocker. Have you been diagnosed with anything yet, POTS, dysautonomia, anything? Are you taking any meds? As I said, try not to panic because that will only make you feel worse. I know that is easier said than done . . . I know how scary it can be when your symptoms are out of control. I hope you will feel better soon!!
  19. Hi, @potsiebarbie, Are you staying stationary the entire time? Or does the HR go up when you start moving? (Does this mean it will read 50-something for an hour)? When I first got one of those things last year, I could be sitting down and have a normalish reading but as soon as I got up and started walking, it went up into the 120s. Your heart rate can actually fluctuate quite a bit according to whatever activity you may be doing, even if it's just very minor activity. In fact, it can go up significantly even if you're just sitting there and something startles or scares you, or if you're reading or thinking about something and it makes you anxious. And it can come down just as quickly as it went up. I'm not sure if that is what's happening with you, but that has definitely been my experience!
  20. Hi, @Derek1987! Sorry to hear about this latest bout of dizziness. It really is awful. Just to clarify, did you check your BP right before you drank the Coke, and then re-check it after you finished? Or is there any chance the number was already that low before you drank it? I'm also wondering if the lower-than-usual BP number may have been from something physical you may have done right before checking it after drinking the Coke, such as getting up quickly. Did you eat anything with the Coke? Before I was diagnosed and on meds, my HR would go up after eating, but my BP would go down. Did you drink the Coke "in stages", or did you slam it? If you slammed it, your BP may have reacted as mine did when I ate, and dropped. Re: dizziness and lightheadedness - a lot of people (including, I have discovered, some medical professionals) seem to use the two terms interchangeably but, for me, anyway, they are most definitely two different things. I have had both separately, and both in unison. I experienced some dizziness when this first came on and my BP would go a little high (such as top number in the 150s, which had previously been unheard-of for me). That dizziness was pretty transient. But as the weeks went on, I started getting serious dizziness (although not vertigo-type where the room spins) that would often last all day, *with BP being normal*. Same with light-headedness. And the brain fog; don't get me started on that! I was obviously slow on the uptake, because it took me a while to figure out that these may be caused by hypoperfusion (Thank you, DINET posters . . . ) So I tried laying down on the bed (we have an adjustable bed) with my legs slightly raised, and also tried sitting for a minute or so with my head between my legs. Both brought improvement. Once I started on my beta blocker, the improvement was more consistent. Not sure if that might be the case with you. There are so many individual variables with this thing. Re: the hot baths - seriously, just don't do those until you get your meds adjusted and things settle down. I love hot baths and had to forgo them before I was diagnosed and on meds and even now, although I can stand them hotter, I still don't take them as hot as I used to. I do drink coffee again. I was afraid to even come near it for the longest time after all this started, but I tried a little earlier this year after I had been on meds for a few months and did OK (by doing OK I mean no palpitations, tachy or other weird symptoms that I could tell) then a little more, and then a little more. I will now take maybe 1/2-1/3 of a cup at a time, totaling no more and 1 to 1-1/2 cups per day. SFSG, knock wood. I hope you are feeling better!
  21. @whoami Oh dear, they are impossibly cute!!! Thank you for sharing those and for the smiles!! Their colors are gorgeous . . . I second @Pistol's question - do they interact with one another in a friendly way? Do you ever take them outdoors? I tried but could not guess which is the most spoiled, as they all look as if they are living the good life!!
  22. @whoami Knock wood, definitely better than before I was diagnosed. I mean, it got to the point that I wasn't functional as far as doing everyday things - I couldn't drive when I was having brain fog, dizziness and/or lightheadedness. Pushing a cart of dog food to my car from the pet store, I became tachycardic and my blood pressure also jumped. I had to go back into the store and sit for a while and it took over an hour for things to settle down. It wasn't even that much stuff, maybe 20-30 lbs. of dog food, if that, that I was pushing in a shopping cart. I still have symptoms, and flares, but I can function closer to normal now than I was able to before I was dx'd. I definitely think the med has helped and I am grateful. Part of the nature of this, at least in my case, is that you get an exaggerated autonomic response, which can include feeling nervous physically even when your brain says you're not. This could be why your nerves are getting so shot. Honestly, if your cardiac tests came back normal, I would take great comfort in that, if you can - I am no cardiologist, but it seems to me that if your heart were going to stop from all of this activity, it would have already done that! Try not to let the worry affect the quality of your life any more than the physical symptoms already have. Do things you enjoy, if you are able, and try to distract yourself from those thoughts. You've got this. I am keeping my fingers crossed that you will get in soon to see the neuro who is well-versed in dysautonomia because, as I said earlier, I think this will go a long way towards putting your mind at ease. You mentioned nausea - that can be another symptom of POTS. Before I was diagnosed, there was a stretch where I was nauseous almost every single morning. One of my mottoes at that time was, "Pepto-Bismol - not just for breakfast anymore!"
  23. @whoami Would love to see whatever you care to share - I really like the names you have picked out. We have dogs, a cat, chickens and goats, but have never had a reptile! Unless you count the small black snake 🐍who visited our side porch a couple of weeks ago!!
  24. @whoami, I am so sorry about your Mom, and I hope you find much comfort in happy memories of her. Your questions are very good. I can tell you that in the month leading up to my first intense symptoms, I was under some of the worst stress and worry of my life. Looking back, I had other things going on for a couple of years before that I couldn't explain but just kind of blew off, such as intolerance to heat when heat didn't used to bother me. In my case, it's hard to think that the worry didn't play some part in bringing it on "full on". I don't know much about RSD but I do know that dysautonomia can be familial.
  25. Hi @whoami! I'm sorry you are going through this - it is really awful. The first thing I will tell you is - DON'T PANIC. In my case, this was gastroparesis and I'm sure any anxiety I was feeling wasn't helping. It happened to me two distinct times last year when I was still being worked up by different specialists and not yet officially diagnosed with POTS or on any meds. It turned around on its own both times. Both times, I lost ten lbs. in two weeks. I'm not overweight so it was scary but, honestly, I think it's scary no matter what someone's weight situation is. Anyway, here's what helped me - I drank broth, Pedialyte, Gatorade, Ensure, Carnation Breakfast drinks (in a bottle, kind of like Ensure), milk, and of course water. I had just baby-small portions of actual food - I literally bought jars of baby food and ate what I could so I would at least have some balance in what I ate - meat, veggies, etc. I could only take a couple of bites and I would feel full. I also ate what soup and broth I could. Don't ask me why, but I had a very frequent craving for chicken soup when my symptoms were intense and I wasn't yet diagnosed. If there is *any* kind of food you really like, that is easy for you to eat, now's the time to eat that, even if you can only take a couple of bites. The second time it happened, I went to a GI specialist . . . he said it sounded like gastroparesis and when I told him I was scheduled to be tested for POTS (TTT), he said it could very well be POTS-related, so go do the test, if it's POTS get treated, and if that didn't help or if it turned out to not be POTS, to come back and see him. I remember he told me I should be getting 1700 calories a day and I was, like, I can barely do 500. It hasn't happened (knock wood!!) since I've been diagnosed and placed on a low dose of a beta blocker. Have you been diagnosed with anything yet - are you taking any meds? As I said, try not to panic because that will only make you feel worse and further decrease your appetite. I know that is easier said than done . . . I know how scary it can be when your symptoms are out of control. If at all possible, try to get seen by someone familiar with autonomic dysfunction, even if you have to pay out-of-pocket . . . having someone "on your case" will do wonders for your peace of mind, even if you don't get all the answers at once. And I am sure you will also get much helpful advice from others here. Sending positive thoughts and good vibes your way!!
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