joiedevivre516

I'm on prophylactic abx for recurrent UTIs, and I've actually had great success with them. I've only had the very vague beginnings of a few UTIs since I started them about a year ago, which is awesome considering that prior to that I was getting them like every two weeks, basically every time we stopped the abx. I hope they work as well for you as they have for me!

I was also told that Dysautonomia and hypoglycemia are definitely related -- when my Dysaut is acting up I have a lot more hypoglycemic episodes, which always respond to getting a little bit of food or some sugar. I hope you find a way to deal with it!

I have those episodes (loss or partial loss of vision, vision distortion, and balance issues) SO frequently -- my neuro figures it's migraine-related, even though I don't always get the headache afterwards. But hopefully his doc will have some insight! Good luck!

Yep, this is basically an all-the-time thing that you just have to learn to live with. It's not dangerous, and it's manageable.

I'm hypoglycemic anyways, so from the beginning my doctor has had me eat a small meal (or at least a snack) right after taking it, which always seems to stem the effects. The only time I really notice it is when I'm too ill to eat. I'm glad you figured it out on your own -- those little preventive measures can truly make the difference with Dysaut!

Ugh I am 5'6" and my weight fluctuates from 95-100, which I can't stand. NOTHING I do helps me gain weight, and my doctors get so concerned. I'm eating as much as I possibly can, but when I try to eat the Boost or Ensure things, I just get sick. Doctors in ERs who don't know my history just assume I'm anorexic, when I've never had an eating disorder in my life. It just doesn't make sense to me!

I know exactly how you feel -- I constantly feel like I need to go to sleep. I try my hardest to fight it and only sleep at night (I need about 11-12 hours) by getting up, moving around, and just forcing myself do sit up if at all possible (sometimes obviously there's just no way and I'll pass out immediately), but I've found that my body has finally figured out the difference between being really "sleepy" and really actually being exhausted and physically needing to sleep. Basically it just requires a lot of listening to your body! Good luck! Oh, by the way, I find that I do better with the sleep thing if I have things I've planned to do during the day, like a schedule. I'm getting my Bachelor's degree online because physically going to college became impossible for me, and when I've specifically planned or scheduled class time or study time, I seem to not sleep as much during the day because I'm so focused on getting things done. Yes, I'm more exhausted that night and usually need a little more nighttime sleep to compensate, but I definitely like that better than sleeping a lot during the day!

I can completely relate to what you're feeling! I got my Dysaut dx two years ago, and on the way home after the hospitalization that resulted in the diagnosis, I remember my mom and I both just crying so hard -- out of a combination of relief and sadness. In the long run, I just realize how much better things are now that I (and my doctors) know what's going on with me and have at least some semblance of an idea how to treat it, but of course I wish it weren't an issue in the first place, and that all of my health issues had turned out to be some short-lived, transient flu or something. I wish you the best of luck with dealing with all of this, and know that we've all been there!!

I had a really bad case of Pertussis when I was 17-18, despite having been vaccinated. I ended up in the hospital for a couple months, and at home on bed-rest and being closely monitored with O2, etc., for months after that. It was a very scary time, and I'd recommend doing whatever possible to avoid it, as the autonomic issues really exacerbate it and vice-versa. My parents were put on prophylactic antibiotics as well, and they never got sick. I'm sort of surprised that your doctor's not willing to do even a cursory bout of prophylactic antibiotics, but I'm sure that things will be ok -- you probably would have developed it already if you were going to. I really hope that things work out for your granddaughter -- it sounds like she's being very well taken care of!

Low Magnesium is another one that causes muscle cramps -- definitely check that out! Good luck! I have major troubles with cramps in my extremities, and it's always been attributed to electrolyte imbalances.

That is absolutely fascinating -- I'd never heard about doing that before! I love how new treatments are popping up all the time. And I'm thrilled it's helping you -- keep us updated!

My legs are crossed almost constantly -- even when I'm lying down! They're also always moving/fidgeting, and I change their position every few minutes, mainly because my symptoms get considerably worse when I don't. My husband says I even do this when I'm sleeping, and when I don't I sometimes even breathe too shallowly. I talked to my doctor about this, and he said the two are definitely connected because of how much the movement or lack thereof affects your circulation. I didn't know it could cause blood clots, but I have a Von Willebrand factor deficiency, so I'm not too worried lol.

Oh and I forgot to mention -- I do isometric exercises (like with therabands, etc.) while lying in bed or sitting totally supported. That REALLY helps!

The ONLY type of exercise that I can tolerate and that my doctor will authorize is swimming, and even then he insists on it being limited to once a week WITH a physical therapist. I had three PICC lines continuously for the past 1.5 years, so I had to take a break from it entirely, but I just had my last PICC line pulled and was switched to a port, and I'll be de-accessed for about six hours once a week, so I'm going to start back up with it ASAP. I've also heard that some POTS people have had success with recumbent stationary bicycles. For me my bones and joints are just too fragile for it without being supported. I hope you find something that works for you, though!!

I've tried acupuncture for dysaut symptoms (including dysmotility and abdominal issues) several times with different practitioners, and each time it just made me a hundred times worse. My body tends to overreact to everything, so I think maybe it just didn't know how to handle it. I finally gave up on it, but I have heard of people who've used a combo of acupuncture and biofeedback with encouraging results. I really think it just varies a lot from person to person, so it's always worth a shot!