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!

I also have lesions on my brain, and like you, my doctors haven't quite figured out why. I'm SO glad yours aren't caused by MS, though -- that's really good news. I hope that they can figure out what's going on soon, and let us know if they do!

Sending prayers to Amy and positive thoughts to her doctors and nurses, that they may figure this out and treat her compassionately and correctly.

Like Meg, this isn't quite the same because I wasn't married before, but I met my husband AFTER getting really sick. He knew exactly what he'd have to deal with in terms of my health, and he still eagerly dove into it. He's been and continues to be the most wonderful and supportive man I could ever imagine, and makes me feel so good about myself, not like I'm a burden because I'm sick. There are amazing guys out there -- ones who see your personality, not everything else. They fall in love with who you are, not what you have, and nothing can scare them away. They ARE out there, and I know that you'll find someone. To be honest, I found my husband at a time when the LAST thing in the world I was looking for or caring about was love, and when tons of friends and a very serious boyfriend had abandoned me due to my illnesses. Sometimes you find exactly what you need when you stop looking. Life is wonderful that way.

Haha my alarm is my pump beeping to tell me my overnight infusion is done! It actually works pretty well, since the beeps start with a lot of space between them and then get faster as it runs out... But before that I used a music alarm (always set to something very gentle and soothing) that gradually got louder. It worked really well -- usually I woke up because I thought I was hearing music in my dreams, and then realized it was the alarm. But I would have to caution you against those vibrating alarms that you put under your pillow. My roommate had one during my freshman year of college, and *I* could hear it when it went off, despite the fact that it was under her pillow on the other side of the room! It also used to startle her to death, and she was perfectly healthy, so I definitely wouldn't recommend it for anyone with Dysaut!

Yep, all of my doctors have said that when my husband and I have kids, if we decide to do so via pregnancy, I'll have to have all of them teaming up with a specific high-risk OB/GYN. They're even concerned enough about my ability to sustain a pregnancy that they've suggested surrogacy. Although that's partly due to other health issues I have in addition to the autonomic stuff.

I'd actually only ever heard of long-term Florinef use causing slight hair LOSS, so I would imagine it's a result of the PCOS, since I've heard that happens quite a lot with that condition. Good luck, though, and definitely bring it up with your doctor if it's bothering you! Kate

I have a Medic Alert charm (with the attached services of listing all of your conditions, meds, allergies, doctors, and contacts) on a Lauren's Hope chain, which I love. Haha my husband practically insists on it because he gets so nervous that I'll pass out or have a seizure somewhere and no one will know what to do with me! The bracelet itself just says "Dysautonomia; PICC line; see wallet insert," which has a copy of all of the info on the Medic Alert website. The best thing about getting a really inexpensive medic alert charm and then attaching it to the bracelet is that it only costs about $10 to order a replacement charm when the info changes. For example, I'm about to have my PICC switched to a port, so we've just ordered the new charm as well. I would really recommend having one! Kate

That is so great that you're staying so positive on a bad day, and that you're trying to see everyone and have some fun; I know from experience that doing so can really help you physically as well! Good luck, and I hope you have a GREAT time!!

I'm also anemic, as are a bunch of my other dysaut. friends, so I'm guessing it's related or at least common for us! Good luck!

I'm so sorry your family is going through this, and I'll definitely keep you all in my thoughts! I hope everything goes well!