Dysautonomia In Children: Question Regarding Urinary Frequency

[gertie]

Did/do any of you have urinary frequency as a symptom? That was the first symptom I remember which started as a young adult & probably when I was a child. I'm just curious because I don't think I've heard anyone else mention this. Thanks.

[juliegee]

Yes, definately. My son goes constantly. His ANS doctor wasn't concerned as long as he was able to sleep through the night without going. He can, but while riding in the car, he literally has to go every 15 miutes.

[carinara]

When i have a bad POTS Episode (my last one was in 2007 and i was off work for 4 months). i have the same problem. I have to go to the toilet at least every 15 minutes. It`s a major problem for me then, because getting up in during them times is very very difficult for me because i get big time symptomatic. I never know what to do then because on one side i should drink as much as i can and on the other side, the constant getting up thing to use the toilet makes me so sick. One time when my partner drove me to the hospital which is about 2 hours away. We had to stop 10 times because i had to use the toilet. I was crying in the car because i wasnt really able to stand upright in the first place and then also had to find a toilet.

All the best carinara

[MelissaCrystal]

I had frequent urination as a child and I also wet the bed every night until I was ten. Around 6 I'd have trouble with shortness of breath, noticed especially when my mom would take me shopping for school clothes---I'd constantly have to eat snacks, drink water, and sit down for little breaks. Even then, I was always complaining that I couldn't breathe. Then when I was a pre-teen I was constantly fatigued after school and would sleep sometimes 13 hours a day. Also, extreme motion sickness every time I got in a car, no matter how short the ride was.

[ramakentesh]

Im a male and I go to the toilet constantly and Im constantly thirsty - the worse my symptoms are the worse both these symptoms are. Poeple often ask me whether I have been checked for diabetes if they notice me going all the time and dont know I have POTS.

As for symptom onset; As a kid I was pretty active and pretty healthy, but i always drank a lot and often felt unusually thirsty. But I didnt really start getting anything I can pinpoint as being dysautonomia-related until my last year of university, although I was unusually tired in my last year of high school.

My first dizzy period coincided with the sudden onset of visual problems (visual snow and HEAPS of floaters) but the docs had no idae what it was and it went away so I forgot about it.

It happened again and I also developed a sort of intolerance to caffiene out of the blue.

Then after a trip overseas, a big night on the beers and then some heavy exercising while still getting over a cold my symptoms just came on (yeah it was a big week and looking bcak Im not surprised it pushed my body too the limit). This was at age 26.

Had three major symptomatic episodes - this one which lasted 6-9 months, a second that last two months in 2005 and the current one im in now which has been probably as bad as the original one and im 2 months in.

[MelissaCrystal]

^Wow, you totally reminded me of the caffeine intolerance I had while I was a kid. Give me any small amount of soda or starbucks mocha, and I was a drug addict awaiting a devastating crash. It was never pretty.

[jump]

This was also my only symptom as a child.

Now, as an adult with POTS, I am desperately thirsty all the time and I absolutely have to go every hour and a half or so, night or day (which means I don't sleep well). I've learned to tolerate the feeling of "urgency" but, partly because I do actually drink a TON, I can't hold it for more than 1 1/2 hours really. Even when I 'm not drinking (like at night) this seems to be the case.

As a child, I always had to pee and my parents would actually get angry with me for it. They thought I had some kind of anxiety problem. Then my mom realized every time I went I really WENT (I was young enough that she accompanied me to public restrooms) -- if it had just been anxiety or nerves, they figured I wouldn't actually urinate bucketloads every hour. But, no one ever pursued it, and even now, even though it is by far my most upsetting and disruptive symptom (because I can't sleep) none of my doctors have been able to offer me any relief, nor have they even been particularly interested. They tested me for diabetes and kidney function, and then they just kind of said "well, live with it." So I do.

Now that I know polyuria is a symptom of POTS, I wonder if that's what was going on when I was younger even though I didn't have other POTS symptoms.

[kitchmill]

Wow, I had no idea that this could be a POTS symptom. I have a 5 year old boy that has been to the urologist a ton of times already for inability to hold his urine. He's in Kindergarten and needs to wear a timer watch to tell him when to go, and even then he still has accidents for no reason. He also still soaks his Pull-ups at night.

We've tried a bunch of things to help him, and the most recent is diet change. Not sure if it's helping or not, but we did notice that the day after he had a big cup of cranberry juice, he had a bunch of accidents. Sounds like we may need to look into some other medical avenues.

[MelissaCrystal]

Wow, I had no idea that this could be a POTS symptom. I have a 5 year old boy that has been to the urologist a ton of times already for inability to hold his urine. He's in Kindergarten and needs to wear a timer watch to tell him when to go, and even then he still has accidents for no reason. He also still soaks his Pull-ups at night.

We've tried a bunch of things to help him, and the most recent is diet change. Not sure if it's helping or not, but we did notice that the day after he had a big cup of cranberry juice, he had a bunch of accidents. Sounds like we may need to look into some other medical avenues.

That was definitely me as a kid, all the way until 10. My parents tried SO much stuff---even this little panty-liner that beeped at me when it got wet. My parents would hear it beeping at night but I'd always sleep through it. I tried bladder training, timing, controlling liquid intake. Nothing was "normal" with me, so my parents eventually gave up and figured I'd grow out of it. They assumed I was just a heavy sleeper with a small bladder.

I slowly grew out of it----this is how it progressed: At nights, I'd still wet my pull-ups, but eventually I started noticing right before I'd pee and I'd wake up and usually stop it. But since I had my pull-ups on, I'd just continue and go back to sleep---it was very familiar to me and I was sleepy/lazy and I never remembered peeing once I woke up in the morning, so I thought nothing had changed. Eventually I decided enough was enough so I wore panties to bed for the first time ever. I'd wake up and stop right as I was about to urinate, and then I'd realize I was wearing panties and I knew how uncomfortable it'd be if I wet them, so I went to the bathroom instead. That's how I stopped wetting the bed. It was annoying going to the bathroom 3-4 times a night, but I was angry with myself that I didn't realize all I had to do was switch to panties. Took me quite a few years to realize that I actually could wake up before I peed at night, but I'm glad I finally realized it and put a pair of underwear on to keep myself from lazy-wetting.

[kitchmill]

Melissa, thank you for your information! My son is definitely a really heavy sleeper too, which is what we've attributed the nighttime wetting to. The pediatrician told us it is hereditary, and my DH apparently had similar issues as a child. He says he once fell out of the top bunk of a bunk bed and kept on sleeping! So we figured that like DH, our son would eventually grow out of it.

But it's really the daytime wetting that bothers me. When he has an accident, he swears he doesn't even notice it. I'm at a loss. I mentioned this post to my DH last night and said that maybe he has some other dysautonomia symptoms that we don't know about. I explained to him that as a child, I didn't know any different so I never said anything to anyone about my symptoms.

[momofsara]

All this sounds waaaay too familiar. Sara had the same problems growing up. She has been diagnosed with interstitial cystitis also. Just wondering if this is an offshoot of the dys. HMMMMM.... Susan

[MelissaCrystal]

Melissa, thank you for your information! My son is definitely a really heavy sleeper too, which is what we've attributed the nighttime wetting to. The pediatrician told us it is hereditary, and my DH apparently had similar issues as a child. He says he once fell out of the top bunk of a bunk bed and kept on sleeping! So we figured that like DH, our son would eventually grow out of it.

But it's really the daytime wetting that bothers me. When he has an accident, he swears he doesn't even notice it. I'm at a loss. I mentioned this post to my DH last night and said that maybe he has some other dysautonomia symptoms that we don't know about. I explained to him that as a child, I didn't know any different so I never said anything to anyone about my symptoms.

I wonder if his nervous system isn't activating that muscle spasm that holds the urine? Sometimes mine doesn't work right and I have to use all my focused energy to tighten that muscle during an urge to urinate. Maybe his isn't working right? I hope you guys can solve this mystery. It definitely sounds out of the ordinary, like something to do with his nervous system.

[Heiferly]

I have frequent need to urinate as well. On top of that, sometimes when I go to get up to get to the bathroom, I get hit by a wave of dizziness/nausea or I start to gray out and have to sit back down. This has caused me to have accidents sometimes either because the muscles let go while I'm graying out, or because I couldn't get to the bathroom in time because I kept having to sit back down. Loading up on so much extra fluids like the docs want me to doesn't help. (Despite the salt and fludrocortisone, I'm not retaining it--it always shows a fluid deficit when my ins/outs are measured.)

Urinary frequency is a listed symptom of dysautonomia. I don't know what can be done to help it though?