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About Fiddlchik

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  1. Hey all - I live in Las Vegas, was diagnosed about 3 years ago with POTS (at the Cleveland Clinic). It was horrible at first, but has gotten steadily better, finally relaxing into a fairly bearable pattern of my "new normal" most days and then a flare up of spells here and there. That is, until about a month ago... It's gotten really brutal again, and I really need to see a specialist. THe problem is that it's really hard from me to get out of Vegas right now, plus I really need ongoing care from a single, knowledgable physician. Does anyone know of any doctors in LV that treat or know about
  2. Hello everyone! I've been having increasing tummy problems lately, and finally got a GI doc last week. My symptoms: stomach discomfort/cramping, pretty much constant nausea on a varying scale, early fullness when eating that lasts for hours, vomitting (try to avoid, because if i start gagging it's hard to stop), alternating bouts of constipation and then diahrrea then back again, belching a lot including burping up bits of food hours after I eat, etc etc etc.... I went for an endoscopy on monday, he did some biopsies and said my stomach is inflamed (Gastritis). I don't have another apt with hi
  3. Though doctorquest may be right, and the cold water sensation is unrelated to dys., I will say that I get those cold water running down my leg sort of sensations too, and it's only been since the onset of POTS. It's a strange feeling, isn't it? really like ice cubes dripping down your legs - I also notice that with me, when it happens (randomly) touching my legs will set off a new wave of sensations. Like, if I have jeans on and am walking, everytime the hem brushes my ankle I get waves of cold running down my feet.
  4. Yeah, happens to me, esp "that time of the month", although slightly backwards from what you're describing. A few days ago, right before I was to begin my quarterly (thanks to seasonique!) period, I got those lovely sensations. Burning hot cheeks, freezing hands. I think it has to be the result of a hormone rush and then the resulting POTS effects. It's annoying. A find I have to have a fan on me alot these days. My average temp has risen almost 2 degrees since getting sick!! That amazes me. I also get that on-the-edge-of-panic feeling. Thats the most uncomfortable part of it definitely.
  5. Maybe it's just me (and I "only" have POTS, no lyme or anything) but when I had pharyngitis last month, I actually felt a little better the week I was on antibiotics. I took the Z-pak - I think that's arithromyacin? but I'm not sure. alana.
  6. Hey all - Long story as short as I can make it... dx with POTS last June, have been doing better in that I can work and function pretty well, though I still have bad days, as we all do. Lately (as in the past few monts_, I've had a big increase is chest pain. It feels like pinching right over my heart - left breast area, you get the idea. Sort of like a mild charley horse in my chest, then a residual ache. It doesn't seem to happen when I'm active - I can do yoga without it flaring up, but then sometimes I'm just sitting there or driving and OW!! It doesnt' feel like heartburn (I've had that i
  7. If you're salt loading to that extent, you need to make sure that you get some extra potassium, either through food or supplements!
  8. A couple thoughts - When first diagnose, I went "dry" for three or four months. Couldn't stomach the thought or taste of any kind of alcohol. I can now tolerate wine, and on a rare occasion, vodka and diet soda, of if caffeine is bothering me, citron vodka and soda water. I ALWAYS alternate a drink with a full glass of water, and make sure I'm eating as well. That said, I'm a cheap date these days, as a glass or two of wine has me grinning ear to ear in no time! I have discovered that since POTS onset, I cannot tolerate sugar or most carbs. I follow an Atkins sort of diet approach, which has
  9. Hello maxine! I have the same problem. I was at work last night (I'm a musician, still able to work most of the time after the initial rough patch - big party last night of course) and I don't know what set me off, me set off I was. My muscles start spasming - first I get the head nods, then wrists and hands (pretty annoying for a violinist, I must say) then the legs, which as I'm sure you know is reeeeeeeeeally fun when you're trying to walk. At one point I was attempting to get on stage (stairs are bad, don't you know) and my left leg kicked out so hard on its own that my shin connected rath
  10. Thought this was interesting, and wanted to share: from http://people.aol.com/people/article/0,26334,1564284,00.html Popular Wiggles Singer Quits Due to Health Woes WEDNESDAY NOVEMBER 29, 2006 07:30PM EST By Tim Nudd and Mark Dagostino Photo by: Derek Storm / FilmMagic Greg Page, who performs as the Yellow Wiggle in the hugely successful Australian preschool band The Wiggles, is leaving the group due to a chronic health condition. Page suffers from Orthostatic Intolerance, a condition that affects balance, breathing and coordination, the band says in a press release. The condition, which is
  11. How much does it end up costing you? I don't know if it would be covered by Anthem, but I think it would still be worth it. Now I just need to find a Vegas doctor who believes in POTS (my dx-ing doc is back in Cleveland).
  12. Is anybody out there using oxygen on a regular (home use) basis? I'm doing better these days, but the biggest problem I'm having is episodes of panting/SOB that leave me pretty weak and definitely uncomfortable. I can technically get air in, but it's not enough to get over the light headed feeling. I keep thinking that if I had some Ox around to take at the beginning of those spells, I could head them off at the pass so to speak. Any thoughts? Thanks, alana.
  13. Coffee does in fact help with constipation, esp. on an empty or near empty stomach. Caffeine stimulates digestion. Hence some cultures traditions of coffee at the end of meals...? Now that I can tolerate caffeine again I've started drinking one cup first thing in the morning and it starts my day of much better. And it helps with the aforementioned condition. Also, I've gone low carb (can't tolerate anything heavy like pasta or bread, and NO sugar!!) and the addition of sugar alcohols as found in low carb ice cream in the like helps too. I guess in "regular" people it can cause diarrhea, but si
  14. Since gettin POTS, I've notice lots of changes in my bathroom habits. Don't think the beta blockers help either. Anyways, using the "wet wipes" available in the bathroom tissue section of the store seems to help with sensitive skin vs. tp issues. Wow. So less embarassing to talk about these things in a room full of people who may have similar problems.
  15. Just read your post re: lopressor Just started on that same dose - 12.5 2x daily similar time frame, and they are also talking about putting me on levsin. So far I have notice a lowering and some consistency in my HR, but not so much of a change in how I feel. In fact, I had a good four or five days in a row before Lopressor RX finally came through, and felt a little worse upon taking it (had a couple spells, etc). Now I am more fatigued, and have notice a lot of "bowel" issues - urgency, etc. Are you having any similar problems with the Levsin? I see no point in continuing it if the only eff
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