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scarfgirl

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About scarfgirl

  • Rank
    Advanced Member
  • Birthday 07/08/1978

Contact Methods

  • MSN
    stacy.lindsey@gmail.com
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Profile Information

  • Gender
    Female
  • Location
    Nowhere, Georgia
  • Interests
    Anything and Everything (well almost). Right now I really want to learn how to crochet hats, am considering seriously practising Buddhism as a religion, and am reading psychology books to decide if maybe I want to go into that field if I ever get healthy.

Recent Profile Visitors

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  1. What does the sweat test determine? I mean, I'm guessing it'll say you sweat too much, but of what significance is that in figuring out what type of POTS you have?
  2. Salt never did anything for me. Neither did fluids. I finally quit the salt/fluid thing as it didn't help the wooziness, and woozy people can't get up to pee 20 times a day!
  3. Thanks for the input guys. I can't believe some people found 5mg to be too much when sometimes after 20mg I've fallen right back asleep! We're each so different. KayJay - I don't have the hyper type of POTS. A lot of doctors won't prescribe Ritalin to adults. I had to see a psychiatrist to get on it. Apparently regular docs take a lot of grief for prescribing it.
  4. I don't have thyroid problems, but I believe Dr. Watkins at the Birmingham clinic said it was probably only a matter of time before I did. He was talking about my thyroid shutting down though, so I don't know if what you're going through is the same thing he was talking about or not. I've never had a scan, but I'm supposed to get a blood test done every six months to check it.
  5. Caffeine helps my energy and concentration big time. I drink two cups first thing in the morning. I don't drink it if I wake up tachycardic, and I don't drink it every day b/c I can build up a tolerance fast. I also make sure not to drink any past noon as it will keep me up. I often use it to replace my morning Ritalin dose.
  6. I'm meeting my psychiatrist tomorrow to discuss more treatment options for me. Currently, I take Ritalin, and it helps my energy, if not my concentration. I take the 4 hour, up to 4 times a day. My dosage is 10mg. It's a pain b/c Medicaid doesn't want to pay for it, but it gets me moving around more than anything....basically works for me the way Midodrine USED to. I tried Adderall years ago, but it made me crazy/suicidal. No such problems with Ritalin. I wanted to know who else on here takes Ritalin, and how they take it. Extended release or short term, what dosage, etc? Do you take it by the clock, or as needed. What benefits do you get from it, and do you have any major side effects on it? Also, if you've had success with a similar drug, what is it?
  7. I've tried the word of mouth thing (that actually worked in Seattle), and the calling around thing, but I haven't found anyone in GA who treats POTS. There's a few doctors who will diagnose, sure, but that's not the same as treating at all. And when it comes to a PCP, there's only two doctors in this podunk town, and both are perfectly happy treating sinus infections and diabetes all day long. I wanna go some place where I spend a whole day having tests of all sorts run on me. If I could narrow down the type of POTS I have, and get a clue as to what causes it, I think I'd be able to find a treatment that works. Beta blockers and florinef are not my answer, but that's the only suggestion I'm ever given. My 'specialist' scoffed at Midodrine and said he was glad it was being taken off the market, even after I explained that it was the only drug that ever made a real difference in my activity levels. Friday7, sorry to hear you're in the same post, but it makes me feel better to know I'm not the only one with this problem. Thanks for sharing
  8. I'm tired of a local GP who can only say "You need to speak to your specialist about that." , and a specialist that I have to travel six hours to visit only to spend 15 minutes with him while he totally ignores my questions and just reads from some dysautonomia script. I still have no clue what might be causing any of my symptoms and no one wants to run any tests on me. I haven't seen any real improvement and I've been sick for a decade now. I want a good doctor, damnit. I'm limited though, in that my insurance is Medicaid and Medicare. Medicaid can only be used in the state of GA, so I'm pretty sure any place I eventually find will only take my Medicare, which doesn't cover a whole lot and isn't accepted at a lot of places. Still, if I have a pretty good guarantee that I'll get some results from my visit, I'm willing to risk the debt. Anyone have any suggestions? I'm in South Georgia.
  9. I'm skeptical of the Candida bit. If you go that route, make sure you have a PCP test you, not a nutritionist from a health store. The Neti pot is WONDERFUL! I had to have my sinuses scraped, and after that I still have to go on antibiotics more than I like, but that's probably because I don't use the Neti pot as regularly as I should. Someone on this board told me to use it as hot and salty as I could tolerate. Great advice!
  10. I had horrible pain, bloating, and constipation for a long time. I didn't think I'd ever find relief. Antibiotics and, oddly enough, Immodium Advanced (if that's the right name) finally got me back on track. An earlier doctor once recommended fiber supplements + stool softeners, but I don't recall that doing much for me. Laxatives helped, but only short term.
  11. How much do you take, and when do you take it? What does this drug do for you. What, specifically, does it help with and what symptoms are alleviated most? The reason I'm asking: My Dr. keeps pushing it on me, despite the fact that I can't really tell it's doing anything, might be adding to my fatigue, and he never really clearly explained how it should help me in the first place. I only know some vague 'it resets your autonomic system somehow'.
  12. I hope it's ok to post this. I made friends with someone I think I met here and we stayed in touch via Facebook for a while. She gave me her gmail address b/c she was leaving Facebook, but when she closed her Facebook acct, I lost access to that info. So if anyone on here is Anna Besse, please PM me with your gmail again. Or if anyone knows who I'm talking about, please let her know I'm looking for her. Thanks. Stacy Lindsey
  13. I didn't want to digress too much from friday7's post about volunteering, but I saw all the posts about reclining wheelchairs. I never knew such a thing existed and now I'm kind of excited. Do they also make ones where you can put your feet up, instead of having to have them hang down? And does anyone own a wheelchair like that? I swore I'd never own a wheelchair, but I might change my mind if there's so many options. With something like that I could go anywhere. If nothing else, I could use it as a really expensive gaming chair, instead of making everyone rearrange the family furniture just so I can play XBOX. One last question: Will Medicaid/Medicare help pay for one?
  14. Asking for help is the hardest part. I'm looking both for volunteer work and/or paying job right now. Sometimes people are helpful, sometimes I'm treated like I'm trying to scam the system (why would someone applying for a job be a scammer? I don't get that). Sometimes people don't call back, or they pass the buck by giving you someone else's number, who gives you another number, etc. The Disabled person's program is a good idea. Heck, I'd contact any Disability Awareness/Assistance type places and see if they could use. Also, talk to your therapist. She might can use your help, or know of a place that does.
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