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mieux7

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Everything posted by mieux7

  1. What a great question and what helpful answers. No doctors believe the copious list of medications I've tried and have backfired. And supplements - forget about it. I even had a negative reaction to B-12 SHOTS! I know my liver detox is kind of messed up, but this is something worth checking into further. Also, I had Celiac Disease that went undiagnosed for 7 years, all the while I was whacking back bread, pasta, oatmeal, you name it. Contrary to what a lot of doctors think, even when you start eating gluten-free, it's not like the damage done to your intestines suddenly (or ever) goes away, especially when you add the GI symptoms of Dysautonomia to the whole mix. But maybe there's some hope for me. If you have this enzyme deficiency, is it correctible or does it just help you explain to the docs why you react the way you do? (which would be a good enough thing). Thanks!
  2. Lissy, I don't know if I have any resolution for you, but I've had these and they're no fun. It's not unusual that they leave you feeling weak, though I never got an actual headache with them. My brother has them too. In my case, mine started about 10 years ago and now I know they were due to gluten exposure (I have Celiac Disease that went undiagnosed for 7 years). Since eating gluten-free, I've only had one and that was due to inadvertent cross-contamination exposure. My brother's may or may not be related Celiac Disease, which is genetic. I suspect he has it, but he refuses to be tested. Have no idea if that might offer a clue in your case. I'm sure there are other causes. I know they're scary as all get out. Hang in there.
  3. Thanks, TXPOTS, for your insight and support. Most useful is the advice to go slow slow slow ... unfortunately, that ship has sailed. I think my original post may not have been clear (no wonder since benzo heck makes brain fog even more foggy). I never messed with my nightime dose of C-pam, thank goodness. Otherwise, I probably would've gotten into seizure territory. My withdrawal is related to my daytime dosage, which had consistently (for a year) been 1mg D-pam 2x a day. But I started taking C-pam "as needed" then like an idiot decided I didn't want to take it during the day and cut back waaaay too fast and inconsistently - some days I take it, some days not, some days a little, some days a lot. Now my problem is to get to a moderate daytime dosage without getting back to such a high and inconsistent dosage. I'd rather not take C-pam during the day. So I'm trying to get back to the 1mg D-pam 2x a day that worked well for me for so long. My body is both wanting more and not wanting any because it's so confused. At this point, I think the best thing - and I believe this is in line with your basic insights - is to CONSISTENTLY take that goal daytime dosage of D-pam and just tough it out. I don't want to "taper up" to any more than that, then have to "taper down" - that seems stupid. I think I'm just going to have to be patient and realize that these withdrawal efx are going to last for a while, only gradually settle down. Does that make sense? Any other ideas? For better or worse, the pharmaceuticals work better for me than herbals or supplements (long story). Everyone's body's different - some people love florinef, some people hate it. I know people who swear by Cymbalta and to me that's the nastiest med on the planet. Tomato, tomahto! Anyway, thanks again for your help and support. Just knowing I'm NOT crazy to be feeling this way (though I was crazy to get into this mess in the first place - well, really just more ignorant than anything else) is a big help.
  4. Thanks - you mind if I ask why you're doing the Klonopin withdrawal? I find it really helps me (at night). But definitely a strong drug. Before I started it, though, it was like something in my brain was constantly clanging and I always woke up in the middle of the night with terrible "hot flashes" (I'm way past menopause.) My (diagnosing) doc said I had a really really strong Sympathetic Nervous System. I think C-pam calms it down, puts it to sleep at night like it's supposed to. I just got into playing around with daytime dosages and messed myself up. I can't even imagine coming off C-pam! Good luck to you - if you're feeling anything like I am, my deepest support and sympathy!
  5. Wow have I got myself in a mess! I'd been having tummy troubles and in trying to figure out what was causing them (beyond the usual Dysautonomia IBS fun and games), I ended up radically lowering my daytime dosage of benzodiazpines waaaaaay too fast. I'd started out taking 1mg Diazepam 2x day, which worked for a long time. Then I went through a really stressful period (disability, almost homeless, moving, etc.) so started taking 1/2 mg Clonazepam (I take 2mg at night) whenever I felt stressed out. I didn't realize how high a daytime benzo dosage I was getting to - probably equivalent of 4-5mg Diazepam, but not consistent. Then I started messing with that, treating these drugs like aspirin ("take when needed"). Duh. They're not like that, are they? Given that messing around with them made me feel terrible, I blamed the meds and basically within 4-6 weeks cut all the way down to 1mg diazepam, then tried to go without any one day. Yikes!!! Finally looked up benzo withdrawal symptoms online and realized that's what had been going on all along. Too much, too fast. Needless to say, with Dysautonomia/POTS, I have no need to withdraw from benzos, and thank goodness never messed with my nightime dose of C-pam. But now I'm in between withdrawal "heck" and trying-to-add-back "heck" - my body's not liking either one. I'm (like almost all of us) incredibly sensitive to meds. My goal is to get back to my original 1mg Diazepam 2x day, but my body's screaming "Can I please have a little more?" A little more makes me feel awful. Too much, too fast. Anybody have any experience with this? My inclination at this point - since I'm already in withdrawal - is only to increase to the dosage I want to be at and tough it out. The last thing I want to do is force myself to a higher dosage, then have to taper back off. I don't feel good right now either way. But at least in the morning (on my "goal" dosage) I feel more stable and generally am beginning to be more functional. Boy do I feel like a dumb-dumb. Did this with my other meds too and you'd think by now I'd learned my lesson. These are not aspirin!! Thanks thanks thanks for any word of advice, insight or just support!
  6. Thanks, Crow. Sorry it's taken so long to respond, had another major med crash, then was busy yesterday putting together (with much help) a birthday party for my best friend. I'm gonna check out your blog when I have the energy - to get more details. The special diet part has me concerned since I've got so many food sensitivities anyway (and have to eat gluten free - though I'm sure they can accommodate that). The other thing is stopping my meds. Though I understand why, messing with my meds, including stopping some of them, is what got me into this mess to begin with. Well, not entirely, it's been a stressful year and a half, but I've learned my lesson the hard way. Some of the meds (Clonidine, Florinef) have some pretty freaky SFX, but w/o Clonidine I have rebound hypertension and then get so disoriented I'm walking into walls. No Florinef and I got NO stand time whatsoever. So am trying to get back on them in the proper balance to minimize the SFX and maximize the good efx. Starting all over again scares the bejeebies outta me. ... Then again, maybe something else would be better altogether. Anyway, sorry to go on and on about that. As I said, I'll read your blog and see how you did. Otherwise, the reports about Vandy all seem to be positive overall. Take care, MStarr
  7. The ability to even respond to this thread in a meaningful way - even though I could vent for hours and the list would be endless. There's a guy next door to me, got to be 85 yrs old, who's painted the outside of his condo in 110 degree heat, without even looking tired. I marvel at people who can take their dogs for a walk or go on a picnic. I used to dance too. Michael J. Fox called Parkinson's the "gift that keeps on taking" - I love that as a description of chronic illness. You get the gifts of compassion, letting go of control (what choice do you have?), learning who your real friends are, never judging anybody till you've walked 15 mins. in their shoes. But the takings...oh boy they hurt at every level - how can using your brain (or what's left of it) for more than 15 mins. make your body feel like you've got the flu? My "plan" (HA!) has been to work through a great book called Chronic Illness and the 12 Steps - like AA but to help folks like us come to some "serenity" with our lot in life and appreciate the here and now. Haven't had the energy to start working on it yet. Still, for me, I wouldn't trade this journey for anything. There's a great song, the chorus goes "God bless the broken road that led me straight to You." I'll let each of you interpret or name who that "You" is in your life. For me, it's been a total healing and renewal of my devotion to God. Or in the words of another song, a "broken hallelujah." Hey, guess I did pretty good being coherent. Bless you all for being here and thanks so much for this thread. MStarr. P.S. I had to give up on the PhD. All of you still working, studying, having a family ... wow.
  8. Bev, Thanks so much for your input. I'd read good things about Vandy in the forum, but they were a year or so old. I'm with you - you got be as proactive as possible with this crazy disease, though I sometimes find that the more I try to "fix" myself the worse I get! Course I'm operating in the dark at this point. Still, even though we're dealing with different symptoms (aren't we all?), as far as I'm concerned anything that sounds remotely helpful and possible is worth a try. I gave up my "pride" a long time ago, so the worst that could happen is they say no. (Wouldn't be the first time a doctor dropped me like a sack of potatoes. Last one told me she wouldn't fill out the Arkansas "handicapped" form for my car tag because she didn't think I was disabled. This after the Social Security gods had already declared I was!! So doctors that listen and care are real high in my book.) Thanks again, and best of luck with the rest of your testing/treatment! MStarr
  9. Ok, I'm a newbie - not to POTS but both posting to the forum and this particular crash I'm in right now. Lucked out and got on SSDI my second try, so have a little income, but no medical insurance (checking to see if Medicaid will help, it'll be a while before I qualify for Medicare). Was originally diagnosed by Randy Thompson but now am living in the middle of rural Arkansas (long story) and NOBODY gets ANS diseases - especially given my multiple diagnoses which sort of cancel out all the usual treatment options. Meds I've been taking for almost two years are giving me fits and I've got no means to update my testing, see if they need to be changed, adjusted, what. If I can't get treatment any other way, I'm considering applying for Vandy's inpatient program. I know it's driven by research protocols. I also know I don't present as the typical POTS patient - too much of a complicated mess! - but then maybe that describes all of us. So my question is: has anybody had recent experience at Vandy? Is it worth a try for me? Got any other advice or support? It's getting to the point I'm almost non-functional and gotta admit it's a bit scary. I thought getting disability was going to be the hardest hurdle. Welcome to the real world of the Big D. Help!! Thanks to one and all ... and all the best/blessings as well. MStarr.
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