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sophia

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About sophia

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  1. Yep! Me too. Hits like a freight train. Mine usually lasts until I wake up the next morning though. Such a bummer!
  2. Fatigue is by far the toughest part of my illness and I so wish I could get a handle on it. It's the symptom that makes me feel like the world is existing without me. That being said, I have a few tricks up my sleeve that tend to work for me. I hit a wall - fast + hard - every day by about 6pm. If I start to feel really tired throughout the day, usually exasperated by working on my computer and being sedentary for a couple hours, I try to force myself to get up, go for a walk, do some cleaning, etc. Seems to by me a little more time. After 6pm or so, this isn't really an option. If I have to do something in the evening and can't wriggle out of it, I use provigil (aka nuvigil) a wakefulness promoting med that really helps, though there is a price pay... in my case it results in an increase in muscle tension pain, and some irritability. Smoking marijuana also helps, though it too tends to make my pain worse, and obviously the high isn't conducive to most situations. Otherwise, I usually spend about 15 hours/day in bed, and even though I hate it, when I'm super fatigued, there's no place else I'd rather be. Thanks for posting this... hoping to hear more from other folks.
  3. Do you think your 5pm crash is related to POTS/NMH? Do you have pain as well? I've also been diagnosed w/ fibromyalgia/chronic fatigue. Most of my tests over the years have come back normal - save for low vit d + iron, which I've treated and seems to be under control. It's so clear to me that something is wrong and felt kinda elated that my ttt came back positive as I hoped treating my NMH would be the key that cracked this code. I think I'm now discovering that it's gonna be more complicated than I had initially thought.
  4. So, do you all think it's fair to say that if I haven't started feeling better after 3 weeks on the cortef + beta blocker that they are not appropriate treatment options? I have no idea how they're suppose to take to "kick in." Thanks so much!
  5. Thanks FriedBrain. Interesting. It sounds like we have some commonalities here. I too have the progesterone-IUD, and although it has been my magic bullet for endometriosis pain, having some suspicions that it was causing/exasperating my symptoms, I too had it removed. However, I didn't feel any better and 3 months later I had it replaced. That was almost 4 month ago. Now I wonder, is 4 months long enough?? About a year ago I tried the hypoglycemic diet - religiously for 1 month - but didn't really notice a difference. I felt pretty deprived and couldn't really justify continuing it. Now I wonder, is one month long enough? I've only been taking cortef for 3 weeks (5 mg at noon). Do you recall when you started to notice its benefits? I don't know if I'm adrenal insufficient. I'm pretty sure that my cortisol tests came back normal, but that my fibro doc experiments w/ cortef regardless. Very curious....
  6. I too was eager to try D-Ribose and have been taking Corvalen's (w/ Magnesium & Malate) 3x/day for two months now. I have noticed no impact. None. It's $50/month so after I've used what I have, I don't intend to replace it. Sadly another disappointment.
  7. Thank you so much in advance to reading this post and for whatever information you are willing to share. I feel so fortunate that I have found this community, as I'm really struggling with my health and am eager to find solutions. I had a tilt table test that came back positive for NMH Nov.24, though I have been struggling w/ fibromyalgia + chronic fatigue symptoms for nearly 4 years. I am learning that there is a relationship between the two. I am wondering if anyone can relate to my symptoms, as they seem somewhat uncharacteristic of NMH. I typically feel well enough to do most things from about 10 am - 5pm, though I do have pain + fatigue. Predictably though every early evening I experience a crash that happens rather suddenly and leaves me bedridden with debilitating fatigue, dizziness, + flu-like symptoms. Sometime it is so severe I have to lay in darkness + silence for hours. Ironically I typically don't sleep during this time, though about the time it starts to ease up a little, it is time for me to fall asleep. Does this sound like NMH? Perhaps an accumulation of symptoms from compensating throughout the day? Can anyone relate? My next questions have to do w/ treatment. I have been experimenting with all the conservative treatments - consuming up to 2 liters of h20/day + salt, compression garments and i just elevated my bed about 4". I have also been prescribed a low dose of hydrocortisone (5mg/day), a beta blocker (pindolol 5mg 2/day), lots of vitamins/supplements including licorice root (1 cap 2/day). Granted it has been a relatively short period of time, 3 weeks, I have noticed no impact at all on my energy crash. In your experiences, how long did it take before you noticed a difference? Based on my experience, does it sound like my fibro/fatigue symptoms are related to my NMH? Thanks again. sophia
  8. A few years ago my catecholamines levels were abnormal and my endocrinologist suspected that I may have had Pheochromocytoma. I had 2 MRIs to try to detect a tumor, but both of them came back negative. Ultimately, he settled on a belief that my abnormal test was an artifact caused by a medication that I take (Parnate - and MAO Inhibitor). It was a pretty disappointing experience because nothing was ever determined to be the cause of my symptoms - until a couple weeks ago when my ttt tested positive for NMH.
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