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About ode_to_fantasy

  • Rank
    Advanced Member
  • Birthday 07/08/1983

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  • Location
    Gainesville, Florida
  • Interests
    reading, singing, body modification (scarification especially), industrial music, tarot...
  1. I've been taking it for years. I consider it my miracle drug. It works wonders =D It's pretty harsh on your stomach at first though...
  2. I'd definitely be concerned at starting at such a high dose. I take 60mg 3 times a day (after building up to it) and still the GI effects are pretty intense (though I'd never stop taking it, because it makes me able to walk!) I also think that the asthma affects that are written about in the side effects are probably for people with Myasthenia Gravis, since that's what the drug was made for, but definitely ask your dr. Best of luck!
  3. A lower dose and tapering up have been very useful to me. I'm up to 60mgs 3 times a day, but every time I taper up, I get the intense stomach cramps and such. But for me, the benefit of the medication far outweighs the bad effects.
  4. My wonderful doctor, Dr. Meador, is moving to Emory University (hospital) in Atlanta from here at the University of Florida and Shands in Gainesville, FL. I'm not sure what he's going to be doing there, but he's the first doctor I've ever had who took my Dysautonomia seriously (and because of him, others have started taking it seriously as well). He's a seizure specialist (Neuro), but I somehow got thrown into his group because someone thought that my constant NCS episodes were seizures. The first time I went to see him, and he saw my HR jump over 30 points and me faint just from standing up, he got so excited, and pulled other doctors in to see if they had any ideas what it was. Then he did lots of research, and came up with a game plan for treating me. If anyone who lives around there can get in to see him, I would seriously recommend it. He's definitely worth the trip, even if you have to go a few hours. I'm just devastated that he's leaving here.
  5. I never really made the connection...but I started having panic attacks when I first started taking Mestinon. I had never had them before, and my doctor didn't think they were actual panic attacks, just that my body was doing something weird and it was freaking me out. They've since gone away. But I still consider Mestinon my miracle drug, and would continue to take it even if I was still having panic attacks and horrible stomach pain :-p
  6. I can only drink coffee when I don't have to do anything that requires functionality that day, as I'll be passing out almost constantly after it, even on the Mestinon! :-p I miss it soooo much....but I'll drink it on a Saturday afternoon if I'm feeling particularly indulgent. :-D
  7. Levsin is an anti-spasmatic prescription that is specifically for GI cramping. It's not over the counter though
  8. Personally, I call Mestinon my "miracle drug". I used to pass out at least every 10 minutes, and since I've started it, I pass out maaaybe once every 2 weeks or so. :-D (it does cause some severe stomach problems at first though, but once I got used to it and started taking Levsin, it got better) :-D
  9. I work in the music industry, I do purchasing for a company that builds equipment for major production companies and concerts and such.
  10. So, we have a camera crew filming a reality show at my company. On one hand, I'm thinking, wow, this is great, this could be some good publicity for Dysautonomia, since I pass out all the time! But on the other hand, I'm thinking, dude, it's not cool to pass out in front of ANYONE, much less a national audience... I hope that, if this show airs, and I am passing out on it (cuz, let's face it, it's way more interesting to watch me pass out than actually do my job) at least Dysautonomia will get some good publicity!
  11. I'm a purchasing manager for an Audio/Visual company. I get to spend money for a living! :-p I sit at a desk in air conditioning all day, and can work from home if I need to.
  12. So tonight I got angry....like furiously angry, and my heartrate shot up to about 220. I'm almost certain that that's the highest it's ever been. It's calmed down a bit now, it's upper 100's, but it kinda scared me. Is this normal? I haven't really had any tachy problems in a while....
  13. I believe I was the most miserable I've ever been when taking beta blockers (toprol xl). I took it for 3 months, thinking that maybe it would get better. My blood pressure, which is usually average (115/70) dropped to the lowest it's ever been before or since. (50/20) and my organs started shutting down...It had gotten steadily worse. I slept the whole time, I could barely crawl out of bed to get the normal things done that I needed to accomplish. They kept changing my dosage thinking it would get better, but it never did. As soon as I stopped taking it, I got immediately better. Not good enough to walk yet, but much better than I had been before. All in all, it was a horrible experience, and I never want to repeat it. Hopefully you'll have a better reaction that I did!
  14. I know this seems a bit drastic to say, but I've been calling Mestinon my "miracle drug". I've tried probably 30-40 random medications to see if MAYBE they would help with my NCS/POTS and I'm allergic to most of them. Then finally, my neuro put me on Mestinon. I haven't blacked out in over a month, whereas before, I literally passed out like every 10-20 minutes! I can walk again, climb stairs, go places without assistance. I know it's different for everyone, but from my own experience, I'd definitely say to give it a try. It did screw with my stomach REALLY bad when I first started taking it. (really bad diarrhea) But after 2 weeks or so, my body adjusted, and I've never been more thankful for any medication, EVER. Best of luck!!
  15. So my doctor finally decided that it would be beneficial (or at least worth a try) for me to start taking Mestion 60mg twice a day. I can't believe it, I CAN WALK AGAIN!!!!!! I am so ecstatic! I haven't passed out in almost a week!! I really hope my body doesn't get used to this one really fast, like it has all the others, because I think I'm in love. <3
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