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Everything posted by RecipeForDisaster

  1. I take 60mg 3 times daily and it does help, just not dramatically. I am considering trying higher doses, with a doctors' permission, because I haven’t had side effects.
  2. I take adderall for my Dysautonomia and super fatigue (lack of sleep, due to illness and sleep apnea, too), and it helps me to feel more alive and awake, with a slightly better BP. I have no issues from taking it, and I even skip a day every week to be sure I can function without it. I only take 2.5mg most days which is ridiculously tiny. If I don’t sleep at all, I take 5mg which is what was prescribed. It’s more to help me perfuse than anything. I don’t have ADD/ADHD. I do have trouble thinking the more sick I am, but I think that’s purely perfusion related and distraction from feeli
  3. For me, even room temp is far too cold. It’s still about 30+ degrees colder than body temp... I find it makes me freezing, even though I I run my fluids slowly. Most people don’t realize that and figure as long as it isn’t "cold" (stored in the car in the winter!) it’s fine. I try to leave my fluids near my pellet stove for a while before I use them, but half the time it’s a surprise. In that case, I put a portable heating pad against the bag in an insulated pouch I made from a silver bubble wrap envelope. It helps a little. Cold fluids are only intentionally used for hyperthermia,
  4. It’s not likely safe enough for me to get a PICC or port due to clotting issues, so I receive my saline peripherally, too. I generally don’t get fluids unless I am crashing or already down, so my veins are staying okay. I’ve gotten fluids as often as 2.5L every other day. During that experiment, I felt as good as I can imagine... but we also found that my IVs don’t last a week like we planned they would. Needing a new one every other day at best isn’t sustainable for me. It doesn’t matter how much salt and fluid I take in by mouth - no medication or other intervention helps as muc
  5. It drops my BP but I’m usually okay if I only take 5mg and get right in bed. I take maybe a tablet twice a year.
  6. I’m allergic to NSAIDs and Tylenol does nothing for me, so I’m in a particularly bad place when it comes to pain. I use a TENS often and that does help... I use hot packs when I can tolerate them (they can worsen my low BP), Lidocaine patches, and distraction. It’s not great! Tramadol makes my Dysautonomia much worse and I was told to avoid it without even mentioning that.
  7. My insurance doesn't require a referral, but the specialists always do. I'm told "sometimes ANAs are just positive for no reason and it doesn't mean anything". Mine wasn't ever until a few years ago and it is consistently now... the lowest it's been is 1:80 but usually 1:160. I can't find anyone to see who has a decent reputation, anyway. I guess there are a lot of bad ones around. i keep bringing it up to my doctors, saying I really think there's something worth checking out here, but I don't have anyone to see. I don't have a lot of joint pains, but I am tender in a lot of places
  8. I saw a highly regarded hospital's rheumatologist who was the most dismissive, abrupt, unhelpful person ever. He started with "this is a dead end". I don't think any of my doctors will send me to another one - they barely wanted to send me to him, and then they were justified He didn't touch me and barely looked at paperwork or talked to me. My pattern is homogenous and nothing else, other than immunofluorescence, comes up positive. I feel sick all the time, though...
  9. I'm barely functional. I collapse, wobble, black out, or pass out often. This while I'm on tons of meds and interventions... 15gm salt, 3-4L water, compression stockings, tVNS, sequential compression devices, etc. I really haven't had a lot of definitively helpful or positive results, other than my renin being high, a positive ANA, loss of weight, bone spurs and arthritis on my neck and back MRIs, my HR being high, etc. I haven't gotten to try lactated ringers yet, and now the only MD who might help with that "no longer works there", yikes! Doctors say it's not important or worthwhile to
  10. I keep going until I can't. I used to get to 170 or so from walking. Now it depends on how I'm doing, but metoprolol has tempered it somewhat.
  11. I get really bad chills, crawling scalp, and "cold" chest pressure from midodrine, worse with higher doses. I don't have any side effects at 2.5mg but it's a pain taking it that often, and I'd certainly benefit from larger doses, even every hour. I never have high BP - I didn't as a teenager before I got sick, oddly. My BP is less than half what is was then. Yesterday it was 72/40 after all of my meds maxed out. DDAVP seems to help about 1/4-1/3 as much as a bag of saline. The beneficial effects are the same, it's just milder, and I can get headaches and and malaise which I don't get fro
  12. I'm not sure if it was me you're referring to, but I do take 2.5mg midodrine hourly a lot of the time. I don't have amazing results with it but then nothing is really super helpful for me except for IV fluids, and to some extent, DDAVP. I am allowed to take 60mg midodrine but I don't - I've only done that a couple of times and the side effects were too much. My BP is still quite low despite a lot of medications, salt, fluids, compression, SCDs... It's great that he can manage 7.5mg midodrine - if it were me, I think I'd ask if it's okay to take that much every 2 hours if that's ho
  13. Metoprolol is the only thing that has improved sleep much for me. It partially quiets the pounding tachycardia. I do sometimes use melatonin, theanine, or valerian root to "cover up the sick feelings" and make it easier to sleep despite them. Magnesium taurate or glycinate has seemed to help, too. I haven't tried clonidine although I am sure it would help - my BP is far too low for me to use it.
  14. I have two 15lb $30 ones. One is not baffled or quilted so the weight clumps up badly. The other is great... it's quilted, and is super soft. I really love them and feel they help my BP to be a little higher, plus I do think they help me to sleep. I actually layer both even though that's supposed to be too much weight for me. I got them at Christmas Tree Shop and Job Lot, respectively. The non-baffled CTS one could be quilted yourself... the price is right! Good luck!
  15. I have suspeted thoracic outlet syndrome, the neurological type and not necessarily the vascular type, which could explain this type of symptom. When I turn my head, I almost pass out. I get a lot of unexpected pins and needles, too.
  16. I have been told that beta blockers interfere with melatonin, so I was told to take a little (up to 1mg) melatonin with my metoprolol. In my case, metoprolol enables me to sleep, because it quiets down my overactive heart. My sleep is awful in the first place and has been for ages. I take magnesium taurate or glycinate before bed as those chelates have helpful compounds for sleeping.
  17. I have, and I have been ignored each time.
  18. My beta blocker dulls the feeling somewhat, and I am allowed to take more of it when the feeling is worse. I do take magnesium taurate for it as well, because it doesn't hurt. My heart is like a sledgehammer no matter the rate or situation. It would make it impossible to sleep if not for the beta blocker. I can easily see the impulse in several parts of my chest, neck, and abdomen. The weird thing is that my BP is low and I barely have a weak pulse in my wrist.
  19. It is incredibly disturbing not to have a diagnosis and to have meds thrown at you in hopes that they might help. It's better than not being allowed to try therapies that could work, but it's still very hard to swallow. I'm on just about every possible therapy for dysautonomia and low BP... I don't know if I'm that refractory, or all the doctors are on the wrong track. They don't know what my issue is, but the meds should still be helping more than they are, and my problems keep creeping so that I'm consistently, slowly getting worse over time. I'm grateful for the small benefit I
  20. I often wake up from this... it's very painful and throbs.
  21. I didn't have your luck with Florinef (more side effects than helpful effects for me), but have been on midodrine for years. I'm on a lot of other stuff with it. Nighttime is one of my worst problems, too. My BP is so low that I bet I could safely take midodrine before laying down, but I won't. What I do is take 2.5mg every 90 minutes when I need to. That dose gives me no side effects and I can keep a fairly steady level.... I am allowed to take up to 60mg a day but I wouldn't. The side effects from taking 10mg at a time are too much for me. Its too bad there isn't a sustained rele
  22. I have a CMS 3000 TENS and am very interested in getting an ear clip for this use. I would appreciate detailed information on which one you purchased and how you set it up. I could really use this kind of therapy! I'm a little afraid of doing it incorrectly, and not totally sure my TENS can run this way.
  23. I should've mentioned that I don't have ADHD, and adderall does increase my BP a little . I'll take all the help I can get!
  24. I take 2.5mg of Adderall most days - one day off per week, and sometimes 5mg if I haven't slept at all. It hasn't changed my HR at these doses, nor have I had other issues from it, and gives me a bit of energy and "aliveness". I feel like I have slept more than I have.
  25. Call me crazy, but if one can contract their own soleus muscles, wouldn't that have the same positive effect as this is supposed to cause? It says that it makes the soleus contract. I do find my sequential compression device to be helpful, but that actually squeezes blood up my leg in stages... the effect doesn't feel like anything I could accomplish with exercise. I'm going to try to actively work my soleus muscles whenever I think of it. It sure won't hurt!
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