Fiddlchik

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 POTS, or any other type of dysautonomia? Any help would be hugely appreciated. Thank you Alana.

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 him until late next week, although he said he wants to do a Gastric Emptying Test, and wait for the results from my abdominal ultrasound and the biopsies before proceding. So in the meantime, I have nexxium that doesn't work and a disgusting GI cocktail sitting on my counter. My question is this - has anybody with these problems had any relief using colonics/colon cleansing? I just feel like if I could get good and cleaned out, it might help put me on a good track, but perhaps that's wishful thinking, but I wanted to get some opinions before trying. Any advice or just relating your experiences would be really helpful. Oh, one more thing - did anybody else who had an endoscopy have trouble recovering? I usually bounce back pretty good but man, I've been a mess the two days since the procedure. Headaches and tummy aches and nausea and getting the spins - POTS stuff I have pretty in control before the procedure. And sooooooooo tired. Is it a POTSy reaction to the anethesia? They did put me completely under. Anyways, thanks so much guys. I hope you all have a really great day! alana.

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.

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.

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.

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 in the past). I have had an echo, several EKG's, worn the holter monitor, had a couple stress tests - all negative. I'm now scheduled for an angiogram, but my cardio has pretty much admitted that he doesn't know what's going on. I like him and all, and he seems competent - just has no idea. I'm not asking for dx from anyone out there, just if anyone has had a similar experience with these kinds of pains, and what they turned out to be. I like to proactive in my car (thank goodness, otherwise I'd still be taking epilepsy medication.. but that's another story..) so I'm doing all the research I can. BTW - I'm 25, and my only illness is POTS - aside from that, I'm apparently healthy as a horse. A horse with chest pain, that is. Thanks everyone, alana.

If you're salt loading to that extent, you need to make sure that you get some extra potassium, either through food or supplements!

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 helped me immensley. That being said, I can't tolerate beer at all anymore. Something about the wheat and sugar content I'm sure. I used to love the taste of it - my dad even brews his own - but no more. Also, if you're going to drink wine, be nice to yourself and indulge in a higher cost one - same for any sort of hard liquor. As a rule (though there are exceptions) the cheaper the alcohol, the less filtered it is, and therefore more impurities. Thats the reason why doing shots of well tequila will give you MUCH worse day after results than say, $12 a shot Patron. Same with wine. Also - to whomever said they miss their vices, chocolate included - try sugar free! There are actually some great tasting ones out there, and though they still have some caffeine content, the lack of sugar seems to help greatly. Same with low carb ice cream. etc. Mmmm.

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 rather heavily with the edge of the stage. Ow. So, yeah, you're not alone. I woke up this morning feeling like I ran a marathon yesterday. But I just try to smile through it - which works far less sometime than others. Here's to a less spasm-y New Year!

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 related to blood-pressure issues, is not considered life-threatening. Former understudy Sam Moran will replace Page as the Yellow Wiggle. Page, 34, was a founding member of the Wiggles and has been playing with the group for 15 years. "This emotional decision was one which was very difficult, as I have dedicated almost half my life to the Wiggles," he says. "With a question mark over my health, I feel that this is the right decision. I will miss The Wiggles and the other guys very much, as well as seeing all the children in the audiences that we perform in front of." Wiggles performances combine live action and audience participation, with the help from a variety of costumed characters. The band has sold more than 20 million videos worldwide and play more than 200 live shows annually. They also appear twice a day on the Disney Channel's Playhouse Disney programming block. Murray Cook, the Red Wiggle, expressed his sadness about his bandmate's departure. "We've been through many adventures together. We will miss Greg as a superb singer, performer and songwriter, but mostly we'll miss him on the road as a friend and ally. We wish him well in dealing with his illness and in future."

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).

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.

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 since I started on the far other end of the spectrum it evens me out nicely.

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.

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 effects are negative. Also, since you have already stared the Levin, what exactly is it for and how has it affected you? I assume you are with the Clinic too, given our RX similarities - they are great diagnosticians it seems but are so busy can be hard to get ahold of. Glad we can ask ?'s of each other! Thanks alana.

Hey everyone - I've had bad nausea on and off since getting sick in April. Got prescribed Phenergan, which doesn't seem to do much but act as a placebo, giving my mind something to hold onto until the nausea subsides. What I have found that works pretty well for me is the old stand-by of soda (seltzer water) and bitters. Bitters is an alcohol, which I know lots of us cannot tolerate, but the ratio is only a couple of drops of bitters (up to a teaspoon if you can tolerate) per full 12 to 14 oz glass of soda water. I find the relief from the nausea much greater than any discomfort from the bitters. You can pick it up at some grocery stores (with the alcohol mixers?) and at wine/booze shops. I'm not sure why this works, but it is not the only thing that gets me much relief - also helps very much with gas pains that cause nausea as well. Mind the burps, though! alana.