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Everything posted by bjbens

  1. For me, it varies so much. Lately, it's been hot and crazy humid in Minnesota and that type of weather is a huge trigger for me. I've been struggling with nausea, heartburn, lightheadedness, tinnitus, occasional dizziness, fatigue, tachycardia, palpitations, feeling of weakness, and difficulty exercising. In contrast to this, when all the stars align (I.e. cool weather, enough sleep, average stress level, etc.) I have days when I feel almost "normal". Hope this helps.
  2. Can I ask what symptoms you're having that have caused you to suspect MCAD? It's something I've wondered about as well, but haven't moved forward on. And congratulations on connecting with an astute and very kind medical professional!!
  3. Thanks, Chaos, I'll check out that website. I wish I could travel to see Dr. afrin, but that's out of the question at this point.
  4. Thanks for the info, CHRISTYD. I'm glad your son got such good relief for his nausea with the MCAS treatment. I live in MN and have not discovered anyone here who even tests for this. Guess I'll keep looking.
  5. I'd like to hear from people who have been diagnosed with MCAD. What were the symptoms that caused you to follow that diagnostic route? What type of doctor diagnosed you? Is MCAD more common in people with dysautonomia? Can you distinguish between a dysautonomia flare-up and a MCAD flare-up? I have a doctor's appt. next week and am really vacillating on whether or not to even bring this up with her.
  6. What a remarkable story. Very encouraging - thanks for sharing!
  7. The muscle relaxant I take (as needed) is cyclobenzaprine.
  8. Oh, didn't think it would bleep out that word - it wasn't that bad.
  9. And Nina, I'm sorry last year was so difficult for you. As the son of my friend who died told me, "Death *****." I agree.
  10. Thank you so much for the kind replies and words of wisdom. I'm still fairly new to all of this and was surprised at the intensity of my symptom flare-up. What you each say makes sense and I see a theme of helping one's body calm/relax after an emotional blow. I do workout when I can and I pray, but I may look into local yoga classes to round out my regimen. Thanks again!
  11. I lost a dear friend and neighbor of 20 years this week. My dysautonomia symptoms have hit hard - the weakness, fatigue, dizziness, lightheadedness, tinnitus, nausea, etc. I'm trying to make sure I'm mindful of the basics: lots of salt, salty fluid, rest, exercise, wearing abdominal binder... This morning I'm really dragging and didn't exercise at all - feel too weak and lightheaded. Have other people experienced this? Any tips?
  12. I experience this, too. Mostly neck spasms, but also lots of foot and leg cramps. They seem to increase when my electrolytes get out of whack. I was prescribed a muscle relaxant after it became apparent that physical therapy and chiropractic treatments were not going to resolve the issue. I hope you get some relief!
  13. I'm so sorry you're having to deal with - first of all, this illness! - and second of all unsupportive, name-calling family members. I often feel guilty , too. I think it's a common "side effect" of chronic illness and one of the reasons we need forums like this to remind each other that we did not choose autonomic issues and we are neither lazy nor crazy. Blessings to you.
  14. I can so relate to your experience!! This week has been horrible due to heat intolerance. I did some gardening work for a friend in need - in the muggy, hot sun - earlier in the week and have paid for it ever since with the same symptoms you describe. I feel for you! It can be debilitating. Do you have supportive people around you who "understand" and encourage you to care for yourself? I, too, take a potassium supplement (along with iron, calcium, etc) and get foot and leg cramps, nausea, and aching bones/muscles when it gets low, but can't say I've ever experienced paralysis. I hope the megadose of K+ helps and you're feeling better soon! Stay cool!
  15. hholmes13 - nice to meet another Minnesotan! Yeah, the constant 100 (or higher) degree temps of CA would not be enjoyable!
  16. Thank you so much for the ideas and encouragement. @hholmes13 - I'm not on any meds for the dysautonomia as yet. I was just diagnosed last year (though, as many have experienced in this forum, it had been going on for years with lots of misdiagnoses) If things do not improve with daily exercise, "tilt training" (AKA standing practice) and lots of salt and fluid, my MD at the Univ. of MN says we will consider adding a med this summer. Not thrilled to do that because I already feel so puffy with all the salt and fluid... And E Soskis, I live in Minnesota!! I really feel for you living in the southern heat and humidity! I did stick a couple of bottles of Propel in the freezer earlier and am keeping well-hydrated.
  17. Hi, I'm pretty new to this forum, but am so thrilled to have found it! I'm really curious how other people deal with their heat intolerance. For instance, this morning I took the dogs out for a short walk and it was hot and muggy. By the time I got home I just needed to lie down due to the dizziness, nausea, etc... I wasn't feeling that great to begin with, but now I feel like I've really screwed up my Saturday and am kicking myself! Are there things you do when you have a "flare up" that helps to shorten the duration of it?
  18. As with so many others, I have some caffeine every day, but some days if I have too much I pay for it with extreme fatigue, tachy HR, nausea, and dizziness. I guess the moral of the story is that you need to know your own limits and continually listen to your body.
  19. I feel for you, Hope! I struggled with vertigo last week. It was really bad for about 2 days and now has subsided except for the usual dizziness I feel on and off. Hang in there! It will improve eventually!
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