Lukkychrm42

Yes- it's not fun at all! I'm sorry you're experiencing it! I've had knee pain for a couple years now that was chalked up to chronic tendonitis (from.. ahem... snowboarding and using the darn elliptical trainer every day back when I could)... the hip and other joint pain for me has only joined in since August or so... I don't know what causes it, but there are many of us with it. Let us know what you find out! The med that works the best for me is ibuprofen, as it is anti-inflammatory. Good luck!

Actually it's more like Powerade, because all the Lucozade I've seen is caffeinated. I like Powerade when I'm desperate, but it's like ?0.80 for a bottle, so not worth it. I'd just as soon drink some apple juice with salt added. For me, beta blockers work pretty well. Not the greatest, and they leave me with a very blah feeling. I don't remember the last time I actually had any energy (and the CFIDS/ME doesn't help, either). Hopefully that and the midodrine will get me through next spring... if I can't get midodrine in Italy either, then I will be put on DDAVP which had pretty awesome test results back in August for general symptoms, but I might need the BB as well.... a next course of action is procrit. No matter how much salt I've been eating, water and everything else go right through me. I've still got the dark sunken eyes of a sick person, which I heard was related to dehydration. Protonix was wonderful, and right now, milk of magnesia/zantac isn't working at all. Last night I woke up with acid burning a hole in my chest and tried to fall asleep in my desk chair. For my GI problems, papaya enzymes sometimes help, but that's about it. I guess it's about finding your own favorite cocktail!

Oh man.. I've got nausea now, but nothing like when I was on Florinef. I'm sorry you're having to go through that! When i got really desperate at work (waiting tables- haha) I would make gingerale from the bar with bitters... because the wristbands didn't work, swigging anti-nausea meds didn't work, and I haven't been through the GI workup stuff yet (on the table when I get back to the states). I know people with POTS who are on Zofran... is that the same thing? It gives them relief enough to be able to eat a little bit. Good luck!

I agree- it sounds like your symptoms fit with POTS, and while the TTT isn't perfect, it's pretty much the gold standard in diagnosing it. If I were you, I'd want one for security, especially if your doctor is prescribing meds for you. On the other hand, if your doc is one of the few well-versed specialists, he could probably tell a dysautonomiac from a mile away... I've never been fond of having to take medicine.. but I've been doing it all my life. Amoxicillin was a staple in our refrigerator from when I was 2 weeks old (doctor's orders for my incessant ear infections). You'll find a lot of us here on Midodrine or Pro-Amatine (brand name). It's possible that your doctor prescribed it for you to counter the effects of a BB on your BP. I have low BP except when I stand up sometimes, then it goes high. I'm not saying that medicine is the way to go, for some of us it's not. But for me, BBs are amazing. Good luck!

Yup- I've got GERD, too, and t'ain't fun! If you're desperate, OTC meds might help for a while. Pepcid, Zantac, Gaviscon all help me a little bit.. but Tums, Rolaids, and those don't do anything. It can cause lasting damage to the esophagus, but they have an easy way of checking it with a little camera (endoscopy? I don't remember). It might be worth it to go to a Patient First kinda thing if you have those, so it's not an ER, or I'm sure you could get checked out by another doctor...but they should be able to write you a prescription if you need it. (Protonix was ambrosia to me, just so you know.) There aren't foods that cause it in me, per se, but there are some that exacerbate it if it's happening already. Including ginger- for me, the spiciness of ginger, including ginger tea, hurt. If you want to go on a date and have GERD, I suggest going to the pub where your date can drink beer and burp, so you won't look quite so unladylike when you burp, too! (LOL I'm teasing....) Oh and in my recent experience, if it's gallbladder related, you might have back pain from it. GERD can be linked to dysautonomia. That doesn't mean that anyone with GERD has dysautonomia, but it's likely that if you have dysautonomia and GERD that they're related. It can also be caused by Mast Cell Activation Disorder, and who knows what else. Hope you get some relief soon!!!

Hehe when I go to see the doctor in Milan, I'll push the site for his English-speaking patients. )

Seems a little strange to me.. It starts off talking mostly about familial dysautonomia, and then goes into Parkinson's, general autonomic dysfunction, and finally OI? Yes they all relate to the ANS, but they're very different... Excuse me if I'm skeptical that some enzymes will make our ANSs work (especially on those who have genetic forms). (and diagnose AND treat???) Hmmmmm..

I don't doubt that they're very busy, and I am not trying to take up his time (I definitely appreciate how valuable it is!), but he said to keep in contact, so I feel obligated! I COULD call, but it's very expensive, and I'd have to get up at about 3 am to do it. I've just e-mailed a few times and never gotten a response, though he does seem to be great with the phone calls. I'm just trying to be a responsible patient!

Hi, As far as medications and alcohol, I know there are some that you shouldn't take with alcohol, but I'm not sure if they're POTS specific. Other than that, I can think of a very good reason your BAC might have been higher than you were expecting: low blood volume. Obviously we all have differences in the amount of blood we have, but if you've got POTS, it's also likely that you've got some degree of low blood volume. I drink alcohol.. not nearly as much as my friends.. I'll have 1-2 drinks during the week (more if I've got a date and we're going to a club or pub where I usually have 1 and then fanta or something), and then I might go out one night during the weekend and have a few. It's still more than I should, but I'm definitely safe about it. (Like drinking loads of water.) And I'm in the NW of England, what else is there to do? especially in winter! Anyway, I hope it works out for you!

Are any of you in contact with Dr. Robertson? I can't call during his 'office hours,' and he doesn't seem to be responding to e-mail.. Do any of you e-mail with him?

Evie- what meds do for you depends on what's going on in your body. If you have POTS that is secondary to another problem, for example, if it's due to hypovolemia, then your HR might increase because your body is working so hard to pump what little blood there is around your body. Florinef helps to build up blood volume, which therefore *should* increase the blood pressure, which *should* in turn lower your heart rate. We're all extremely different- some of us have low BP, some have high, some have low resting HR, some have high. Some us our HRs go up 40 bpm, some go up more than 100 bpm, and I think most of us vary along these lines, so that the truth of "there is no normal POTS case" really bears out in practice. So there's definitely correlation between HR and BP, but it's so different for everyone, I don't think they've figured it out yet exactly. And also why POTS diagnosis doesn't reflect BP. My "normal" BP when sitting and lying down OFF meds is about 75/49-95/65, and on Midodrine is more likely to be in the 90/60s range. When I stand up, BP goes to 110/70- 130/85 unless I've been moving about or stressed (physically), and it might be as high as 160/100. Thus why I get really annoyed going to unfamiliar doctors who comment on why my BP is high when they've taken it once. I even had a doctor who just doubled my Toprol after taking it once. (Before diagnosis). Isn't POTS fun??

Hey that's weird- and I get them after eating and things, too! i've tried to explain to doctors that it's different from a beat being too fast of out of place, but being too strong, and they never seem to take it into account.

I'm always thirsty.. and I drink a lot. Darn beta-blockers! With meds, my average resting heartrate is about 50 (45-55) and when I get 'tachy' I'll jump up to 120 or so. (I know- I'm really weird (so they say)... they think it's just because I USED to work out so much, but whatever). Without meds, my resting HR is still low- when I'm weaning OFF meds, it's about 65-70, and then it settles down at 55-60 later. Then I don't know exactly how high up I go, but it's been measured at 175. Not in the 200s or anything, but it's still a jump of 120 bpm. Before I was diagnosed and could still exercise, going at a RPE of 8 or 8.5 meant I might have a HR of 132, but sometimes it was 170-180, and I never understood why, and this was when I was already on beta-blockers because my "heart beat too fast sometimes." Then a cardiologist told me that most patients on beta-blockers couldn't get their HR above 100.. I knew 132 wasn't unhealthy, but I was a bit confused.

I think adrenaline surges are different from seizures. I've got hyperadrenergic POTS, so pretty much: something sets me off, my HR goes up, BP goes up, shaking (but not seizing, it's more like shivering, which includes teeth chattering), growing very warm, clammy, sweaty, and then when it settles down eventually- 10 minutes- an hour or two, I also get cold.. lying down helps but doesn't stop the shaking for a while. So- some things that set me off besides standing up: noises (telephones, doorbells, alarms, something breaking, shouting, door slamming, etc.) stress (i.e. nervousness, excitement, fear- like fighting with a good friend or parent, breaking up with someone or being broken up with, oral exams, someone thinking it's funny to lean over and tickle me when I've dozed off, horror movies- though I love them!, and anything very sad) Umm those are the major ones, though sometimes bright flashing lights, crowds, and large groups do the trick, too. (Sitting in a pub with lots of friends with 10 conversations going on, I cannot handle- so many people probably think I'm antisocial!) The only way it's been explained to me is that as part of the dysautonomia, when something upsets you, the hormones and neurotransmitters (specifically the catecholamines) get set off fighting their way around your body, so that's what causes the shaking. Sound familiar??

Hey Perse- I get the first one, but not the anoxic seizures... Whenever I wake up, my HR just skyrockets- and then it settles down usually until I stand up, but sometimes if I wake up in the middle of the night (which happens all the time), I have to take more propranolol just to be able to get my HR calmed down enough to sleep again. It's frustrating! Dunno about the seizures though.. hope you find out what's going on soon, though!

Hi! I always feel worse when I'm shopping- I think all the walking plus carrying things, and being in noisy atmospheres with lots of fluorescent lighting and varied smells aggravates it. I'm sorry you're having such a tough time, and I hope you figure something out that works for you! Megan

Wow- I can't account for weight loss- any chance it's due to stomach issues- like not being able to eat, nausea, or something like that? Hmm I have put lots of weight ON since a year ago. About 10-15 pounds before that, and I believe a lot of it is also due to my birth control. (When I was younger and fully grown, before I lost weight, I was a C cup. Now I am DD.) Grr. I'm always hungry, and I can't exercise like I used to, so it's a vicious cycle. Luckily, I've been pretty steady since I was diagnosed- I'd gained most of it by Christmas and maybe a bit more until February or so. I lost maybe 5 pounds total this summer.. and I've probably gained them back since being here in England... It's kind of a roller-coaster!

Yeah- lots of us have trouble breathing but it's not asthma. When I'm on form and do a peak flow test, they are usually impressed with the results as I have huge lungs, but I definitely don't have asthma.

That sounds like a pretty cool doctor.. always nice when their egos don't get in the way of treating their patients! I'm sorry they haven't figured out the face pain, yet, and I hope they do soon! The pupil thing is pretty cool. Sometimes I can't stand lights. Dr. Biaggioni commented on my pupils to his interns when I was at Vandy- he was staring at my eyes, and I had no idea what he was looking at, so I was probably looking at him funny when he told them to look at my eyes and what did they see. Anyway take care everybody!

In my 'REAL life' I don't have spare time... school full-time, work full-time, sleeping the rest of the time with outings to the mountains as often as I can manage it physically (student in Boulder, Colorado). Now I have some playtime because the only thing I have to do right now is school- 3 classes. They're each more work than SOME classes in the States, but it's also less to juggle. I'm not allowed to work, and I'm thrilled! When I'm not studying or freaking out about how behind I am in Italian since they bumped me up an extra level, I listen to music incessantly, love reading (19th centure British literature, specifically), hanging out with my crazy young English friends, sleeping when the dorm hall isn't too noisy (too little unfortunately), cooking yummy food (as simple as possible, though!), and miss snowboarding. I like shopping when I have a bit of money to spare, which isn't often, I e-mail with my parents, daydream, and want to try to figure out my next direction (after college/university). Anyway- I guess if I'm not doing something I feel like I'm not accomplishing anything, and that really bothers me, so I'm usually pretty busy doing whatever.

Hi guys, thanks for responding. I went to the doctor yesterday, and she asked me what I was studying, told me to hop onto the bed, and she felt my abdomen. I got down, she wrote out a prescription (for a new antacid), said it was probably just dietary changes or the water.. and then I left. She didn't ask me what the pain was like, how long it'd been here, if I had had abdominal pain with GERD before, if my current GERD med seemed to be working, how long I'd been in the country, IF I had had any dietary changes, or mention anything about the diarrhea I'd told the nurse about. I haven't had any dietary changes, since I'm vegan and this is Britain (as opposed to India or Brazil or someplace) I eat the same stuff, and moreover I've been here for nearly 3 months so I should be over any dietary issues already. The nurse I saw in the Nurses' Unit (separate from the Health Centre) asked about gallbladder stuff, and thought that the doctor would at least to an ultrasound... I guess they don't want to waste tests on people if they're not visibly in danger. So I guess my plan of action is that if gets really bad any time soon, I'll go back to the 24-hour Nurses' Unit and they'll decide if I need to go to the hospital or whatever. Grrr... OH well- the pain is tolerable, anyway.

ndrf.org also lists studies that are going on.

yeah- I actually do blame myself. I've had symptoms of ANS dysfunction for as long as I can remember, so I think that I was predisposed to POTS.. but then I started having issues with food and my weight.. and so on and so forth, and I developed an eating disorder. I still have issues, but I've been OK with it for a few years now, and my POTS has gotten worse in the last year. It's kind of ironic, because when I was 17 I lost about 40 pounds, going from being actually overweight to a healthy 120 lbs on my very muscular frame.. now, I haven't been able to exercise regularly and have gained most of it back just in the past year and few months. I hate my body, but I'm healthy enough to know that I can't do anything dumb, so I feel stuck in limbo and am just waiting until I feel well enough to go for long walks or start even going to the gym again. Anyway, that's my story and why I feel completely responsible. You can hate me now, but I didn't do it on purpose. At any rate, last spring when I was definitely getting worse, I blame that on the fact that I was taking 6 classes and working full-time. That's why I got worse over the summer.

Radha, and all you others, I'm sorry you're in such pain!!!! *hugs* My pain is only minor and is in my joints (and stomach right now- but that's on the GERD post). Ibuprofen seems to help 'enough' for now, though I limp a lot, favoring whichever joint decides to hurt at that particular moment. I'm sure there are some people on campus who are quite convinced that I'm either crazy or faking it... Anyway, the only major pain meds I've been on recently are vicodin and tylenol with codeine (bad if you're intolerant of codeine!!) after getting my wisdom teeth removed, and it didn't really work much. My history prof has a Doonesbury cartoon on his door that's about a patient's husband wanting his wife in pain to get more pain medicine, and the doctor says 'sorry, the last time that doctors had control over how much medicine patients get was in 1914.. (and something to the effect of) so congress is the reason that nursing homes are full of patients in pain... blah blah blah' sorry I'm having too much brain fog to remember it clearly. Nevertheless, I hope you all find something that helps! whether pharmacological or something else. Having gone to massage school, I can say that people with pain due to fibromyalgia often benefit from massage therapy. my sister had massages prescribed for a long time... just a thought- I know they have to be checked out carefully since they're not regulated, but there are a lot of alternative methods to dealing with pain, so if you're not getting relief from the meds, it might be worth looking at them. *more hugs*

Hi babyboy, I get the burping with sour taste and the trapped wind, and for me at least that's part of the GERD/IBS mess.. but my chest pain with tachycardia is at my heart, and the heartburn is in the center of my chest. For a lot of people, GERD gets worse with lying down or after eating- for me it's often when I haven't eaten anything and am standing.. Anyway, i hope you get some answers!! Good luck with the doctor.