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Everything posted by RecipeForDisaster

  1. I don’t have hyper POTS and have very low BP - "better" for me is higher, towards 80/60 if I can! I don’t find much effect on my HR from adderall. Maybe it’s a little lower if I’m doing better, but I’m on a beta blocker anyway. So, when I take a dose of Adderall, I’m less orthostatic, better able to exercise, and my BP is higher/healthier.
  2. No, but I only took mine 6 days per week, and I now take it as needed. I have quite a bit on hand from when I realized I wouldn’t pay to take it daily.
  3. I can’t get a prior authorization which is why I don’t take it regularly - I have a script but it’s too expensive without it.
  4. I feel somewhat better when I take as little as 2.5mg adderall. 5mg is better. I have better BP readings and exercise tolerance and definitely am less orthostatic.
  5. There are legitimate versions available... but these were a lot cheaper! I stitched the edges of the pillows together, but I tried just using Velcro straps at first. Thanks, though! I love to "invent"!
  6. Thanks. Pillows strapped to my feet help, and oddly, so have supplements.
  7. For me, it does not seem to relate to the sun. Anything that has pressure on it at night becomes red, hot, and painful, but my ears seem to do this for no reason as well.
  8. I seem to have erythromelalgia, too. It affects my ears, as well as my heels and elbows at night...
  9. Can you take a bath instead of showering? It helps me to be laying down and have the pressure of the water around me. You’d probably like weighted blankets like I do - to me they are the sleeping equivalent of compression stockings. I also use sequential compression devices for a hour or so each evening. That machine doesn’t want to go into the shower, though. I have a really hard time getting my 30-40mmHg stockings on, so I use a mixture of these interventions. The stockings are definitely hot in the summer. I try to keep splashing myself with water...
  10. Just slippage while adjusting myself - if one isn’t in good contact, the other feels like a shock - the same happens with regular TENS use. Ouch!
  11. Ooooh that could hurt! Be sure both clips are in good contact, too. Ask me how I know!
  12. I bought mine from a PT office, too. I agree, it’s crazy how cheap these have gotten! Good luck! I’m super cautious and careful - I think it took me a year to get up the guts to put this together and try it. I find that the ear clips ache after an hour or so, so that’s how long I leave them on. If they could be a bit more loose, I would use them for longer.
  13. This is what I use: https://www.tenspros.com/black-ear-clip-electrodes-EAE01.html it would hurt a lot if you put regular electrodes there, I think. There are papers where you can see what settings work well. My doctors are really impressed with this therapy (they knew nothing about it but liked the idea), even if it was my research that got me here. It is a little DIY, but since the approved device isn’t available here and is expensive... it does the trick.
  14. Do what you feel comfortable with, then. I did months of research and was supremely careful when setting this up. I have continuous HR monitoring but I’ve never had an issue with low HR. I'd never put the usual TENS electrodes above the neck. The ear clips and use of specific Hz and pulse width makes this a totally different animal. I’ve been using it for a long with no ill effects, just positive ones. The TENS needs to stay at a particular frequency no matter what you’re using it for, unless you’re doing some odd variable therapy I’ve never heard of. I did not alter the device one bit - I am using TENS ear clips. Just trying to help - I got most of my information to start with right here and I was very grateful for it.
  15. Sleep! Not much helps as much as sleep does, but I rarely get nearly enough. For me, I do better when I don’t eat, unless I’m really hungry, which is not common. If I’m hungry, I’d better eat, but if not, I will usually regret it.
  16. I made my own using a TENS device and an ear clip! There are tutorials online or I can help. It’s similar to the one you can’t get in the US. Oh, and exercise is a definite - I forgot that one. It helps some things and hurts others, but I wouldn’t be without it.
  17. IV fluids, Sequential Compression Devices, weighted blankets, transdermal vagal stimulation... broth, DDAVP. That’s all I can think of that is kind of uncharted.
  18. I can’t hold the bag up for very long at all to even go up or down the stairs - I thought about getting a pole for each level of the house. It rolls really poorly in my house anyway and I carry it most everywhere. I do hang it in the bathroom when I’m in there, but I would really like to go out on little car trips (it doesn’t work - the bag can’t be hung high enough) and even walk. We are looking at using a pressure infuser bag to mimic gravity inside a backpack. I hope it will work!
  19. When I use IV fluids, I’m hooked for many hours. I have 3 levels in my house, uneven ground outside, and a lot of trouble managing trying to keep the pole rolling all over the place through my entire waking time. I can’t get a pump from my infusion company because I don’t use the fluids consistently enough. I don’t really blame them - the pump is quite expensive. So, I have to have the bag above my arm and upright. I have not found a reasonably priced and decent looking solution online. There was a kid who designed a backpack - looks like I could possibly make my own. It would have a half pole sticking up from it and somehow it would be stabilized. If I could leave the house, go for walks, etc., I would absolutely use the fluids more often. I can’t hold my arm up for very long, or I’d just hold the bag up with my other hand. How it is now, I only use fluids if I can stay indoors and home for my entire day and evening - that isn’t that often. I would love to hear any creative solutions! I'm also trying to play with running the fluids overnight, but it wouldn’t be enough hours - my ideal run is 2L over 17 hours or so. We start when I wake and remove it when I go to bed. When I’ve tried it overnight before, I’ve had a lot of soreness that kept me awake, and I was afraid to move too much and dislodge the catheter.
  20. I sure have a bad taste in my mouth - they messed up everything about my referral, had me do a short, bland survey (they refused to take any medical records, results, or letters from doctors who wanted me seen there) and then declined to take me. They were not doing telemedicine when COVID was in full swing, either. They told me I’d have to travel. Irresponsible if you ask me. They seem to love that chronic fatigue clinic. That’s not when I’d be going there for! I have a lot going on that’s mostly undiagnosed-abnormal labs, very low BP that is hard to treat, connective tissue abnormalities, etc. I was pretty disgruntled that they didn’t want to see me before they had much of any information on me. I’m looking at NIH and hope to do that remotely.
  21. I know that weather definitely affects me, too. My major point is about how frowned upon fluids still are in mainstream medicine. It’s like you’re asking for morphine with most doctors. It makes no sense to me - they don’t offer alternatives, and no one ENJOYS getting IV fluids!
  22. It has made a big difference in my ability to sleep. My HR doesn’t go much below 55 on it, which seems to be fine. I was athletic enough that it was around there before I got sicker.
  23. I’ve been helped quite a bit by metoprolol. I started with 12.5mg at bedtime and I sometimes take up to 50mg at bedtime now.
  24. It’s actually been very helpful for my low BP and fluid volume. You just have to be really careful not to drink too much unsalted water. I wouldn’t think it could increase other med' s activity on its own, but the brain changes could certainly make you feel weird. I just feel off, get a headache, and nausea if I’m starting to get hyponatremic.
  25. I use DDAVP and all I can think of is sodium depletion. That could make you drowsy. Mine is a different formulation, and I take it during the day to raise my BP, but I have gotten close to that when taking doses near the max I’m allowed.
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