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Delta

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About Delta

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    Female
  • Location
    USA
  • Interests
    Dogs; music; hockey

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  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. @FileTrekker - I'm sorry to hear you're having these annoying symptoms after eating! I used to have awful symptoms appear after I ate. I'm just guessing here based on my own experiences, but I'm thinking that eating (and all it entails - digestion, etc.) has been the thing most strenuous to your autonomic nervous system that you've been doing since you started taking the reduced dose propranolol yesterday, and that reduced dose isn't enough to cover it. 5 mg really is a tiny dose. In fact, my doc wanted to start me at 20 and I asked if I could start at 10 and go higher if that didn't help. So far I'm still on the 10. Good luck with the 10 mg tomorrow and I hope you will let us know how you make out! Try not to fret too much because more anxiety isn't going to be helpful and, remember, this is just the first step!
  3. Hi, @FileTrekker! Re: This is after taking only half of the dose your doc recommended, is that right? You could try the entire 10 mg. tomorrow, being as it seems the half-dose was helpful. (Edited to add - check with your doc or pharmacist before taking a different dose than what you started on. If you only took that half dose the one time, I'm not thinking it would cause a problem but your doctor or pharmacist will know for sure.) Also - this is something I do that I think has been helpful to me - I take my 10 mg. dose before I get out of bed and start my day. At least half an hour before but sometimes longer, depending on when I wake up. I keep a glass of water and my pill at bedside before I turn in for the night. This way, the propranolol has a chance to really get on board before I start doing things to agitate my autonomic nervous system! I'm glad you tried it. Honestly, I had so much weird and scary stuff going on *before* I started taking it that I'm not sure I would have recognized if something was a side effect! Good luck and I hope you continue to see improvement!!
  4. 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!!
  5. Hi, @FileTrekker, I take 10 mg. of propranolol once daily and have been since July 2018. Prescribed by my neuro who has knowledge of POTS and treats others with POTS as well. It's made me functional again. You have no idea. At my first visit to this doc, they handed me this laundry list of symptoms and I can't even tell you how many I checked off and which I no longer have (knock wood, loud and hard!) since starting the propranolol. Speaking only for myself, propranolol has thus far been neither awful nor terrible. I wouldn't get too hung up on how other people have reacted to it, because the fact is that everyone is different and there are so many variables that don't come out in other people's stories. I was afraid to take it, too. I was at the ER one day because the palpitations and tachy were getting worse and I explained to the ER doc how I had recently been dx'd with POTS but was afraid to take anything more than a teeny tiny crumb of the pill. He said that was the equivalent of taking nothing and then he just said, "Don't you want to get better?" I realized I was never going to know if I never gave it a try. So the next day, because I was afraid of having some kind of weird reaction (and with POTS, you're already having a lot of weird stuff going on so it's easy to think anything else can happen), I had my husband drive me to the hospital parking lot, where I took my first pill and would be near the ER in case I had a bad reaction. Yes, I really did this. Don't be afraid. And if it doesn't help you, talk to your doc because there are other beta blockers and meds to try. But if you don't take the first step, you'll never know which direction to go in. I wish you the very best of luck and, whether or not you decide to give the Propranolol a try, I wish you good health.
  6. 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.
  7. @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!!
  8. 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!
  9. 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!
  10. 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!
  11. @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.
  12. 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.
  13. 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.
  14. 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.
  15. 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.
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