Peeing the bed at night while asleep

[Gamboa]

I never had a problem as a child with bed wetting but in the last six years, since my CSF has become worse, I sometimes pee the bed at night. This is apparently called Adult Nocturnal Enuresis. It used to happen maybe once every two months but this last week it happened three times! . I have also felt awful this week, more so than usual. I am having a crash after going away on vacation a few weeks ago and doing too much. Needless to say I am a bit concerned so went to my doctor.

My doctor, a new one since my previous GP retired, said "keep an eye on it for a few months" and that was about it. I mentioned the CSF and asked if this could be part of it and her she me a blank look and then continued typing on her computer. I shouldn't be surprised but it is somehow still upsetting when this happens.

Do any of you have this problem? I know it is part of MS and other neurological problems and I often wonder if I could have MS instead of CSF. I know there are a lot of common symptoms and that both can be difficult to diagnose. I had an MRI done three years ago in which I had some white spots in both frontal lobes but they were attributed to migraines, not that I had had many up to that point. I have had a lot since so I'm sure a new MRI would light up like a Christmas tree.

I know another cause of night time bed wetting is due to an endocrine problem with the hormone ADH. If it is too low you have high urine output at night. I wanted to have this tested but my GP didn't respond to this either when I mentioned it.

I am female and 48 years old. I had not taken any sleeping aids, drank alcohol or caffeine on the nights in question. My GP said I don't have a UTI so ruled that out as a possible cause.

Any one else out there with this problem?

 

[SpecialK82]

nuerological problems are also associated with ME/CFS. Do you have other autonomic nervous system problems?

I don't know if you have fibromyalgia too, but an urologist once told me that with fibro the bladder muscles may not work correctly in either of these two functions - won't relax correctly to urinate or contract efficiently to hold the urine.

 

[Calathea]

Interstitial Cystitis commonly occurs in women with ME, that's worth reading up about. I have it myself, but I don't have that particular symptom. I tend to be leaping up to go to the loo all night instead. I'm not sure of a source of info for IC in Canada, I talk to the COB Foundation myself. They might be a useful starting point, despite being abroad, as they're familiar with a range of bladder disorders and aware of the co-morbidity with ME.

Meanwhile, my sympathies, this sounds unpleasant and embarrassing. You can buy really nice cloth menstrual pads these days, some of which have stronger waterproofing than others, and that might be a comfortable solution. Prettily-patterned cotton is a lot less depressing than big white disposable pads to look at, not to mention more comfortable and economical.

 

[Esther12]

I did a quick google, and there was a possible association with sleep apnea, which also causes fatigue.

It looks like it could be difficult to find the cause, as it seems like another symptom with lots of possible causes. It could be totally unrelated to the fatigue though, as I'm not aware of any association with CFS. I hope things improve for you soon.

 

[SickOfSickness]

Get a new GP if you can? Does not sound good, not taking your problem seriously. If taken seriously, IMO you would have the ADH test results or something else to go on.

 

[Gamboa]

A new GP would be great but that is very hard to do here in Canada. Very few take new patients. The neurologist I see for headaches has a year long waiting list. My next appointment with him is in July. And that is a followup from my last appointment with him, last June!

I have had two sleep studies, a few years ago, both of which showed no sleep apnea or other problems.

I have read that people with CSF " drink like a fish and pee like a racehorse". This is true of me. I believe it is something to do with low blood volume. Our bodies are constantly trying to increase blood volume by taking in fluids but we then pee the fluid out instead of retaining it.

 

[hurtingallthetimet]

like the other posters said you probably need a second opinion but i understand how hard it is to find a doctor....but hopefully yours will help you or you can find antoher..

maybe you are sleeping really hard and not waking up? or maybe a medication is making you need to urinate more as a side effect? i wake up to pee several times and i hate it because i dont sleep well anyways...i always have though even before sick...not sure why just the way i am...its aggrivating but i always wake up so ive not been concerned...

i have really heavy periods sometimes and i put a heavy terry bath towel and sleep on it because i will soak the sheet..sorry i know its kinda gross but the towel is so soft it doesnt bother me and i dont even notice im sleeping on it....just an idea to help you in case you pee again and dont wake up if you havent already tried it..it works great for me..

hope you get help from your doctors

 

[Francelle]

Gamboa,

About two years ago I started to wet the bed at night. Certainly not every night but often three or four nights successively, then a few weeks of reprieve. It started a while after I commenced taking Lyrica so I assumed it was because the Lyrica caused me to sleep so well without waking....and this could possibly be the reason. However why doesn't it happen every night? It's as though I have vulnerable days compared to other days and it is unpredictable as to when it will happen.

Whatever......I have been badly affected throughout this M.E. process with neurological symptoms so maybe it has to do with that and nothing to do with Lyrica!! Another of this condition's enigmas.

 

[*GG*]

I had this issue at one time, I didn't read the drug reactions, and incontinence is one of them, not on that anymore, so not a problem anymore.

GG

PS It might have been Lyrica.

 

[Marco]

Hi Gamboa

I'm very sorry to hear that you have to deal with this along with everything else.

Lately I've been trying to put together some information that might suggest that ME/CFS involves or can result in a neurological deficit in filtering out noxious (but otherwise trivial) sensory information (a gating deficit).

As the strength of sensory gating varies in healthy individuals I also propose that people who go on to develop ME/CFS may have been 'weak gaters' from early childhood and that a gating deficit may refect a predisposing factor for developing ME/CFS or a range of other illnesses. I also predict that they might recall a range of pro-dromal symptoms including childhood enuresis (which I had almost forgotten I had for a few years pre-teen).

Here's a link to a paper on enuresis in ADHD children :

http://www.ncbi.nlm.nih.gov/pubmed/16813934

We replicated previous research findings that enuresis is associated with a brainstem deficit and investigated the impact of attention deficit hyperactivity disorder on this brainstem deficit in enuresis.

Gating deficits can be induced or exacerbated by oxidative stress leading to mitochondrial dysfunction. Interestingly at least one study has found that gating deficits can be reversed by administering the antioxidant/glutathione precursor N-acetylcysteine (NAC).

NAC can be bought over the counter as the cold remedy Mucomyst (as you dilute the crystals I wouldn't recommend it just before bedtime).

Maes found NAC supplementation helped with 'leaky gut' in ME/CFS patients. I've found the same for me personally.


Failing that, as I (barely) recall the non-pharmaceutical remedy for childhood enuresis (in the 1960's) was a rubber sheet and a moisture alarm which presumably over time served to gradually extinguish the act of urinating from any mild feelings of bladder discomfort.

It might be worth trying NAC first.

 

[Gamboa]

Thanks everyone. I'll look into the gating deficit problems, Marco. I just read the article you provided and it's interesting that they mention a problem with the brainstem. I really feel a large part of my CSF is neurological: just wish more (or any?) neurologists knew about our illness.

I haven't been taking any new meds and only occasionally take something for insomnia. The nights of peeing don't correspond to nights taking meds. All very strange.

 

[Enid]

Yep bladder problems (and bowel) too Gamboa I think to do with damaged controlling nerves. I'd be careful of surgery.

 

[maddietod]

Do you drink tea? A few years ago I noticed that drinking it makes it, um, hard to make it to the bathroom in time. This is apart from the caffeine issue; it's the same when the tea is decaf. Actually, this also happens with decaf coffee.

Madie

 

[Gamboa]

Do you drink tea? A few years ago I noticed that drinking it makes it, um, hard to make it to the bathroom in time. This is apart from the caffeine issue; it's the same when the tea is decaf. Actually, this also happens with decaf coffee.

Madie

Yes I do, both caf and decaf. I often have a decaf tea or green tea in the evening. I'll try to stop that and see if it helps.

 

[Calathea]

How late in the evening are you drinking liquid of any sort? I have to restrict liquids in the evening if I don't want to be running to the toilet all night. As it is, I still have to urinate several times a night, and this is with the Interstitial Cystitis currently in remission.