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Everything posted by RecipeForDisaster

  1. 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.
  2. 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 get from my treatments, of course. You are not alone!
  3. I often wake up from this... it's very painful and throbs.
  4. 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 release 8-12 hour version. You may need to talk to your doctor about something else to take at night or possibly something like licorice root to take the place of Florinef. That has been the best answer for me, including a beta blocker at bedtime. I am suspected to have low blood volume as well. Good luck!
  5. 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.
  6. 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!
  7. 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.
  8. 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!
  9. I also had extremely low B12 and neuropathy from that, plus low vitamin D and iron. None were found early... My mood is usually pretty good, but when I have really poor sleep, I'm a mess emotionally the next day. I think that's pretty natural.
  10. I've did have a home sleep study which did show mixed sleep apnea (no EEG), and I use an APAP every night. I think it reduced these episodes, which used to be pretty much continuous. Without a beta blocker, they'd be once a night, at least, and the "smoldering" would keep me from sleeping most of the night anyway. I'm not on anything that would exacerbate central apnea and I have no risk factors for obstructive. It's just there.
  11. I wish I could help, but I can only tell you I have similar problems... and the side effects from midodrine keep me at a 2.5mg dose every 2-3 hours, which works okay for me... no side effects and some good effects. At 5mg I get chills and crawling skin too severe to manage. At 10mg (recommended by my cardiologist because my BP runs so low) I got horrible cold chest pain and pressure. I depend on it, though, because it does bump the BP up. I wake up at 2-3am although this does seem better when I take the higher dose of metoprolol (37.5) . Pounding heart, sweating, hot, for absolutely no reason. It's nearly impossible to get back to sleep. I'm usually up for the day. Oddly, if I take the higher dose of metoprolol, I tend to get bad nightmares lately. Those will wake me up and I am often upset about the content. It's a rock and a hard place. If you can take a beta blocker, it might help.
  12. I have 3 clotting disorders, so even if he wants to do an invasive exercise test, I will not be doing it.
  13. I exercise often, but this is greatly beneficial when I'm too weak or otherwise in bed anyway. Exercise does not raise my BP, but this does.
  14. One of my doctors recommended this in desperation for something to increase my BP. I didn't think it'd help much, but I got a Circuflow 5150 and I definitely feel better when it's running, and maybe some time after. It increases my BP about 10 points, just by inflating and squeezing blood up my leg. Mine only came with one leg sleeve and they are quite expensive, so I am on the lookout for a deal on a second one. It comes halfway up my thigh. For now, I'm doing an hour on each leg while I read before bed. It's tough to do much of anything while it's running, but it feels good.
  15. I'm excited that I have an appt with Dr. Systrom in April. I've been on Mestinon 60mg TID for years without side effects, and with minor to moderate beneficial benefits.
  16. She's in Tarrytown, NY... I've been referred to her for potential autoimmune issues. I may be able to have phone visits with her but I'm willing to go to her if needed... it's only a few hours away . I was happy to find this page on her! https://www.ehlers-danlos.com/anne-maitland/
  17. Ha, yup, me too, I thought that it was my husband who was abnormal! Why do you need water? Why do you need a bathroom?
  18. I am never thirsty and don't enjoy drinking. I do it to be good. It doesn't matter how hot it is or that I eat 15gm sodium daily... I never understood why people craved liquids. No one seems interested in this at all.
  19. My feeling is that the stress and discomfort of the test increased my baseline BP (clearly documented - about 30 points higher diastolic than at home) so I don't come up positive when I'm there. I get blacked out vision and extreme lightheartedness when I stand, but not during a TTT. My BP doesn't dip low enough. I wish I could document anything but I'm very different in my natural environment
  20. My beta blocker doesn't cover the increased HR I get with any infection. I get a big increase in my resting and exertional HR despite it.
  21. Thanks. My dream is to be able to put other people inside my body for a day so THEY can feel what it's like, and try to figure it out, and see how difficult it is to "just live with it".
  22. They might if they seemed to have any interest in anything that's wrong with me! I don't know what it will take to make them care, unfortunately. Maybe if I lose another 5 lbs. They definitely believe all of my issues but I think they feel emasculated/frustrated by not being able to find the cause, so they tell me I need to adjust and live with everything . Obviously in many cases that isn't healthy. BP in the low 70s as a new baseline, passing out, not eating for days unless I force myself, plus much more... come on, how does one get used to that?
  23. I haven't had an appetite since March no matter how long I go without eating. I'm trying to tempt myself and sometimes force myself to keep taking in calories. Sometimes the smell of something good like pizza or Chinese food will help me to be interested in food, even without hunger. I have a lot of nausea too but I can take zofran to help with that. I try to make myself take in ice cream, cheese, nuts, etc. as concentrated sources of nutrition and calories, and I supplement with homemade shakes, too. I'm a huge foodie, though, so it's weird and disappointing to not want to eat. I usually feel worse after eating, even if it isn't much. I've lost 13 lbs and was thin to begin with... the doctors I've seen recently aren't concerned but everyone else is! I've never been this light as an adult. I think it's just secondary to my low BP and not doing well. My body doesn't seem to want the burden of digestion on top of fighting to keep sort of functioning!
  24. I don't even have anxiety or a label thereof, but I swear I could go in with a spear through my head, or a burst appendix, and would be told "it's perfectly normal ", "you just have to adjust to life this way", and "it won't last forever". I lost 13 lbs unintentionally, down to the lowest weight I've ever been, and was told "it would be normal for you to be depressed ". Oh, that's the MOST likely reason, huh? Not because I feel too sick to eat and worse after? Btw, if I were depressed I'd eat everything in sight, that's more my style. How does one get doctors who actually CARE? No diagnosis here either, just annoying stuff like "idiopathic hypotension", "positional dizziness"...
  25. Yep, I can be flushed and have an increased white count and tachycardia , but they won't consider that a fever.
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