Lukkychrm42

I would imagine that it makes sense for it to be safer than general anasthesia, although I believe it can be supervised by nurses rather than anasthesiologists, which might possibly mean trouble..I would advise them to have you on saline and oxygen during the procedure as well as really watching your HR and BP. Some people here have had unremarkable procedures with conscious sedation, and that's great! But I think you would want the docs and nurses still to be on alert in case your BP crashes, because then they have to wake you up, and demerol isn't always enough for a colonoscopy.

I'm allergic to erithromycin and codeine. I have environmental allergies like certain grasses and trees, pollens, mold and mildew, pet dander, dust, and Tide laundry detergent, lavender, biotone herbal massage cream (was a massage student and they used this). No food allergies discovered that I know of, though my sister and mom are both allergic to cucumbers, kiwi, and latex.

I'm thinking they sound like a good idea, too! I don't suppose they can get prescribed? Maybe it'll just be a good birthday present to myself! Let me know how it works for you, Maxine!

Well I've been on paxil/paroxetine for almost a year now- I know you're not supposed to stop suddenly, and I asked the doctors about it every day...at first they weren't going to give it to me because it can affect sodium level, and then- I don't know. I took it as soon as I left...their excuse for not starting by weaning me off it was that my dose was only 20 mg, so a fairly low dose anyway. Whatever, I took it this afternoon! (Oh yeah, they let me go home today! They were talking like they had no idea when I'd get out, and then they came to me and said my labs were looking ok enough that i could pretty much decide when to leave (umm asap!). The midodrine is the same chemicals as ProAmatine, the brand version, but some patients, myself included, report better results from the ProAmatine. Of course, I also realized, when signing my discharge papers, that they'd only been giving me 5 mg doses, not 10 mg! And now I'll be seeing dr. a. on monday morning.

Well, I'm now off the ddavp, although they had me on and off of it over the past week in conjunction with various dehydration tests and stuff... they won't give me labetalol, only lopressor, and only when I "meet the parameters" which means my HR has to be over 75 AND my bp over 100/60....and they're only giving me midodrine not pro amatine, and only every 5 hours... and they haven't given me my paxil the whole time. So, I'm not exactly happy with the way they're handling the whole 'expecting me to bounce back on my own' thing since symptoms fluctuate enough regardless of getting meds on a regular basis. Other than that, my BP has been low enough that being not flat is not fun, because it means my symptoms are that much worse at the moment... I have a team of nephrologists, endocrinologists, neurologists, and general practice docs...but no cardiologist has seen me here, which seems odd to me, although they have consulted with dr. abdallah since finding him with medic alert. Plus they're making my case their case study for next month. I guess my summer will be pretty unproductive, though, because I will not be allowed to drive anymore, nor will I be allowed to be alone- therefore the whole concept of working to save money for grad school is not going to happen- since I collapsed on day 4 of my job! LOL. Oh well- I will be going to visit my man in England sometime next month, sometime after seeing dr. abdallah to ask what now. Thanks guys! If you want to stop by I'm in Phillipsburg, NJ and bored!

Hey guys, long time no see! I was admitted through the ER last Wednesday from a grand mal seizure, and I just got moved into a regular room last night. I've been in long enough that I'm bored now! LOL That's a good sign, probably.

Hey Nina, I'm thinking of both of you, and hoping for the best for you both. Best wishes for a speedy recovery!

I don't know anything about it, but do they not have a treatment that involves the enzyme itself? Or maybe the form isn't conducive to treatment or something...I dunno, it just sounds rather odd.

Hey there, I've never tried actual pills for electrolytes, but I like the storebrand "On the Go" Performance Drink Mix that comes in a powder to be mixed with a bottle of water. There are other kinds out there, but the Kroger one has only 10 or so calories and 200 mg sodium with I don't remember how much potassium... i looked at other brands and forms but some seem to have maybe only 50 or 70 mg of sodium or have sugar.

Yeah, I'd think it's from all the available blood rushing to your gut and away from everything else, especially extremities. Maybe eating smaller meals more often might help?

I would definitely suggest trying it out earlier in the day rather than cutting it out altogether!!! Sometime when you have a little bit of time to lie back, rest with your feet up, drink some gatorade, and so on... I mean, I wouldn't think it'll ever be as symptom-free as for a "normal" person, but it doesn't make it completely joyless.

I got my seat cane from the pharmacy counter for about $30. Definitely worth it! It is kinda annoying that so many people stare or make remarks about how they "need" one too, though!!

Hi there, my chronic diarrhea has been labeled IBS-diarrhea predominant, and is related to autonomic neuropathy of the large and small intestines, and chronic inflammation of the stomach... I have been on Lotronex which has helped a lot, but it's not for everybody. I had a lot of labs performed to check for any malnutrition and for food allergies and celiac disease. Then when nothing turned up they did the colonoscopy.

I'm glad you got it figured out- and hopefully it wears off quickly! So does the Cymbalta actually help your joint pain??

My brother worked at Brookstone and got an amazing deal on a tempur-pedic, and he loves it. It's very comfortable to lie on, but it definitely takes some time to get used to...Mom and I were at a Marriott in Missouri that had them, but I didn't realize until I jumped bellyflop style, which I often do on beds after a long day, and then reeled back from the pain! Just like a belly flop in the water! LOL- not the greatest bed in a hotel where people sleep for a night or a few... But it definitely provides the support, so I hope when you get used to it it helps a lot!

I don't have anything to share except love- I hope you're feeling better!!! It's true...sometimes meds can do STRANGE things that we may not even realize right away.

Most of my dental problems are related more to the EDS. When I was born I had a super narrow palate such that they put a palate widener in (I was about 4 when they took it out). Then I had another one when I was 14, accompanied by braces, to correct an overbite, and basically now my bite is way off and helps contribute to the jaw pain and instability! LOL As to cavities, I've never had any. When I was 16 or so the dentist put enamel fillings in my molars to help prevent wear on them.

Since my problem with swallowing was initiating the swallowing action, I've noticed that since i started on ddavp and my mouth is a bit less desert-like, I haven't had as much trouble with this. I hope those of you with this debilitating problem of choking and not being able to swallow food and liquid find some help soon.

Absolutely. Any sudden noise or sometimes movement or something, and I "jump" and it sets the heart off. I dunno why, other than supposing that since that part of the nervous system is overactive anyway, the body overreacts to every little thing. It stinks, especially if you're trying to sleep, study, work, or something. To calm things down quickly, I just take deep breaths and wait!

I had this pretty badly, too.. drinking a liter of water and then still being parched, with a mouth that hurt from being so dry. Showing it to my doctors, they agreed that it was really dry- but drinking as much as I could while on a high sodium diet didn't help it at all, and I had to constantly chew gum or suck on throat lozenges or hard candy to stimulate the salive production. While it's still mildly dry lately, I have noticed a dramatic improvement since starting on DDAVP. I don't know if it's because I'm retaining water throughout my body or what, but while I still get thirsty, I don't need to drink constantly in order to soothe it, just maybe waking up in the middle of the night.

While it definitely wiped me out, it wasn't the worst thing- I'm not convinced that the TTT wasn't worse. I basically ended up walking quickly on the treadmill for a little over 5 minutes, and then it was over.

That's wonderful! Congratulations!!! What do you teach?

Hmmm I guess i have days that are better and worse, and while there are occasionally some times during the day in which I'll be symptom free, it doesn't last long. Plus being without meds is rare and usually for testing purposes, and I'm usually staying as flat as possible during those miserable days.

That's definitely interesting, but that seems pretty much limited to post-viral dysautonomia. That's pretty cool that they have someone working for them... but while I know there's a lot of overlap in symptoms for CFS and dysaut, and many have both diagnoses, I didn't think that it necessarily followed that every patient with CFS had dysaut. They don't specify certain patients WITH the orthostatic stress may have this ventricular problem, although I don't know what sort of link there is between "left ventricular dysfunction" and our tachycardia. Plus, I've never been aware of any connection between a cardiomyopathy and dysautonomia, even post-viral. I need to read it more, but I gotta go.

I don't know about that particular generic, but I can't use the generic form of ProAmatine, (midodrine), because the ones I've tried (at least 2 manufacturers) are ineffective. Generics contain the same active ingredients, but because they're chemically "the same" they don't have to go through the same FDA testing (at least here in the states) that patented medications do, because in theory it's the same medicine. So basically they don't get tested to see that they actually work. OK I'm on some generics that are fine, but others that aren't. So I guess pros and cons.