Last reply 1 week ago
Up all night!!

Just a question for all. Spent another!! sleepless night. For the last 6 months I have been waking in the night 3 or 4 times every night to use the loo checked for UTI all clear so is it the M.s. causing this anyone else got these problems my G.P. s response to most things is it,s probably the M.s.!!!anyone else getting this anything I can try??

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2 weeks ago

@dinnerlady , unfortunately, your GP has been too dismissive.

You should contact your MS Nurse to discuss these issues. You should then be referred to Continence Services, who should investigate the causes. Usually, it is urine retention, something which is quickly confirmed by an ultrasound.

You maybe offered anticholinergics, to calm your bladder down. You may also be offered Intermittent Self-Catheterisation (ISC).

ISC may sound an awful solution, but it guarantees an empty bladder, which may then allow an undisturbed night’s sleep!

2 weeks ago

I’ve literally just experienced this. My MS nurse had to do a scan on bladder to see if it was working properly and it turns out my brains telling it it’s empty when it’s still had full. Mine was a relapse so it’s best to call your MS nurse just in case!

2 weeks ago

Every time when I think I am done…I pause and ask myself, really? and after giving it a few seconds I get a second start. I have to remember to ask as my body says it is done…but it isn’t.

But at night I am waking every 2 hours…then have to go to the bathroom before I can get back to sleep. Frustrating but I don’t think I wake because I have to pee. I think it is spasms or spasticity.

Neuro understood this time that it really is an issue (I had also raised it last visit) and prescribed me to go to a sleep center to have it looked into. If you like You Tube stuff check out “Life of Seb” (the one about MS, not the other) and he recently found out he was having spasms at night and that was waking him…now he is taking an anti-spas med before bed and doing better. Maybe that is my deal…hopefully they help me figure it out 😉

2 weeks ago

BTW I have found that the Amantadine I was prescribed (on Ocrevus as a DMT) did not help with the Fatigue as hoped but does get rid of afternoon and evening spasms. I asked if I could also take at bed time and neuro said I could but if you take too much or too late it can cause hallucinations and I bet overnight could be dreaming…it is worth a shot and I’ll watch for that. Of course I also take some supplements like Mg and High Cap C that help. Thinking about magnesium spray before bedtime too…maybe it would help?

2 weeks ago

Sleep problems are surprisingly common. And worse, sleep problems can exacerbate other symptoms and problems and cause a downward spiral in health.

There are a variety of ways you can try to address sleep issues.

One great overview was done by Dr. Boster, an MS-specializing neurologist. He created an hour-long YouTube video of tips here:

That is definitely worth viewing.

2 weeks ago

I have had this problem since major surgery 6 years ago. It is MS but the surgery sparked it. I do take medication, but I find certain foods aggravate. Onions are a big culprit and make the difference between getting up 3 times and getting up
Every hour

2 weeks ago

I have these issues, was refered to the continence clinic by the MS specialist, was put on Loporimide for the bowels, and currently under investigation with the Urologist and have a cysostocopy later in the month, (this follows bladder surgery back in 2012, which may have been the start of my MS but not picked up on from last year…. So as said above, go via the MS nurses or MS specialist not the GP. Take care

2 weeks ago

Oh big time , I wake every 2 hours to use the loo , was on amytripline but GP took me off because of possible falling so I just long for a good nights sleep 💤

2 weeks ago

Oh yes I do, but not every night though.
Probably 2 nights a week tbf.
It’s annoying and you feel like **** the next day!


2 weeks ago

Me too, every 2 hours seems to be the norm doesn’t it?
I keep a pee bottle by the bed as I couldn’t make it to the loo, legs are pretty bad these days.
I tend to agree that its probably the spasms and various associated pains that wake me up and the urge to pee is secondary once I wake.

1 week ago

@dinnerlady most likely MS related. Ideally your MS team (forget the GP) can get you seen by uro-neurolgy who can do a number of investigations to find out exactly what your bladder is doing, or not doing. Thereafter there are a few medications they can prescribe which may manage this for you. These are measures that can be done before other things such as Botox and/or Intermittant catheterisation.
Oh yes, and you will be advised to avoid caffeine and fizzy drinks.

good luck

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