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Everything posted by RecipeForDisaster

  1. 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.
  2. 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!
  3. 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.
  4. 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!
  5. 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.
  6. 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.
  7. 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.
  8. I have 3 clotting disorders, so even if he wants to do an invasive exercise test, I will not be doing it.
  9. 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.
  10. 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.
  11. 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.
  12. 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/
  13. 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?
  14. 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.
  15. 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
  16. 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.
  17. 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".
  18. 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?
  19. 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!
  20. 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"...
  21. Yep, I can be flushed and have an increased white count and tachycardia , but they won't consider that a fever.
  22. Absolutely. My temp is 97.2 or even lower at baseline, and I feel extremely feverish and flushed at 99. But it's always dismissed as "normal" when I'm sick. Then how is 97.2 normal?
  23. I love the fact that I don't have a smartphone. I actually only have an emergency bar phone - it's for calling for a tow truck or medical help only, I don't use it. I am free and disconnected...
  24. My CMP is always fine, too... potassium and sodium actually on the low side despite supplementation. I'd love to at least get the first liter LR and the rest NS... not like I want to run 6L LR weekly or anything. DDAVP isn't super common for this sort of thing... I know for me it was one of the last chance drugs, and most of my docs didn't want to prescribe it. No alternative was available - I can't ruin my veins nor can I always lug an IV pole around for 12 hours, and sometimes I'm too shocky to even get an IV.
  25. I'm hoping to try LR, too, but I have enough trouble getting saline myself. The doctor who writes my Rx for saline doesn't want to try LR for some reason and I'm grateful to have ANYthing, so.... I use DDAVP as a last ditch BP increaser because I am very low and not much helps it. I use it as little as possible and take 15gm salt daily. I haven't had my urine volume measured, but my sodium excretion was normal. I don't think I urinate more than I drink. I'm going to see a nephrologist next. Endocrinology was not interested. If not for saline and DDAVP, I'd be stuck on the floor at least one day a week these days.
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