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Everything posted by RecipeForDisaster

  1. 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.
  2. 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.
  3. 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.
  4. IV fluids, Sequential Compression Devices, weighted blankets, transdermal vagal stimulation... broth, DDAVP. That’s all I can think of that is kind of uncharted.
  5. 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!
  6. 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.
  7. 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.
  8. 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!
  9. 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.
  10. 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.
  11. 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.
  12. 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.
  13. I feel totally abandoned and have fallen through the cracks even without being cleared by about 6 of them - I’m actively seeing them. However, I have had specialists clear me very prematurely without trying to help, from the first visit: rheumatology, endocrinology, etc. my issues have only continued to worsen. I feel for you!
  14. It needs to be regular licorice root, not DGL: De-glycyrrhizinated licorice (DGL) has been manufactured to avoid the side effects of licorice by removing the active compound glycyrrhizin . that can increase BP and fluid retention, so healthy people don’t want to take that component, but it’s important for us.
  15. My whole spine is bad. I looked at my still slightly painful heel when I got up this morning and it was red and hot. I’d like to get a photo when it’s really raging, which is when I’m half asleep and it’s totally dark.
  16. This really sounds like me!!! I hope there’s something that can be done about it. My ears definitely do this at night, too.
  17. Sigh. I cannot get a hold of the doctor promised he’ll write my IV fluids (since my other doctor got fired by the hospital). I have 2 emails and 4 calls in over the past month. None have been returned. I think they’re actually closed because of COVID. Their office is awful but he is wonderful. I have ONE day of therapy left and I’m saving it for a really bad time. It sucks!! One new doctor I have agrees I need the fluids but "we don’t prescribe them". Most of my others also refuse as a rule. I have unreturned phone calls to 2 others just in case. I’ve had PPs of 8 before.
  18. I wish someone would care about my pulse pressure or really anything else it drops further when I stand or even sit up. I can get PPs near 10 and it correlates well with how badly I feel. The licorice has definitely increased my volume a bit, as does DDAVP.
  19. I get this in any "small" body part touching the mattress - ear, elbow, heel, etc. I haven’t gotten any help with it and my doctors don’t seem interested. The pain wakes me often. I am wearing pillows wrapped around my feet... it helps them for now. Please update me if you get it figured out!
  20. I portion out 15gm salt which is my daily "prescription" and eat it throughout the day. I crave it so badly that I’ll just crunch on it... but I put it in water, make broth, put it on all foods including chocolate or ice cream, etc. It's never difficult for me to take in enough!
  21. I am currently searching for a PCP in R.I., so not too far away. I’m asking my specialists if they know anyone they’d recommend. Please share if you find someone! I think my PCP believes in it, but he is patronizing and just wants me to get used to everything. He also blames ridiculous stuff on my meds when it’s not possible (as in I was losing weight well before I started adderall, and now I take 2.5mg once weekly when I need it, down from daily, partly to make him shut up and partly because it's expensive. Come on!!!). Good luck! I know how frustrating it is.
  22. Yep, this is one of the most major discomforts for me, and it keeps me from sleeping. I keep needing increased doses of metoprolol to blunt it. IV fluids help it a lot, too, but not much else does.
  23. I have decent results from licorice, too. It’s almost as helpful as florinef was, but without the edema and migraines I got with florinef.
  24. I should add that I take in 15gm salt daily. I want to eat it plain! I am trying to avoid taking DDAVP every day - I just use it when I’m in really bad shape or I need to have a decent day.
  25. I use taurine, and I find it helpful although I haven’t pushed the dose yet. It sure hasn’t lowered BP for me - that would be bad. My mom found it a life changer!! She was going crazy from high HR and palpitations, PVCs, etc. and couldn’t tolerate a beta blocker or calcium channel blocker. She is thrilled with this stuff.
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