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Anyone else suffer from nocturia?

littlebird6180

Senior Member
Messages
119
Update:
I took advil last night before bedtime and lo and behold, I only got up twice! My body didn't know what to do with all that sleep so I woke up at 5:30 for the day. Obviously I can't take advil every night so I'm going to have to do some more research. If the problem is inflammation though, then perhaps the solution is the FODMAP diet--but being married to a chef, that's going to be challenging :)
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Update:
I took advil last night before bedtime and lo and behold, I only got up twice! My body didn't know what to do with all that sleep so I woke up at 5:30 for the day. Obviously I can't take advil every night so I'm going to have to do some more research. If the problem is inflammation though, then perhaps the solution is the FODMAP diet--but being married to a chef, that's going to be challenging :)

Glad you got some sleep! What some (a lot?) of us do is rotate sleep meds, but we often have to fix diet first. I rarely take the same drug more than four days in a row, and I have a system of different combinations. My sleep med routine goes something like this

2 paracetamol/acetaminophen (2 days)
5 mg melatonin and 1 paracetamol (2 days)
5 mg melatonin and 1 or 2 chlorphenamine (that one often doesn't work very well) (1 day)
5 mg melatonin and 25 mg diphenhydramine (2 days)
2 diphenhydramine (2 days)
about 12.5 mg promethazine (1 day)

and back to the start again.

If I need something extra during the night, if it's early I may take a cetirizine, or if it's late in the night I will probably take an extra paracetamol.

And I almost always need my trusty desmopressin.

Other people can recommend other things.

Don't chefs like challenges?
 

Daffodil

Senior Member
Messages
5,875
i wake up 2 - 3 times per night to "pass water". it does sometimes ruin my sleep but usually, i am able to go back to sleep
 

M Paine

Senior Member
Messages
341
Location
Auckland, New Zealand
Update:

I took advil last night before bedtime and lo and behold, I only got up twice! My body didn't know what to do with all that sleep so I woke up at 5:30 for the day. Obviously I can't take advil every night so I'm going to have to do some more research. If the problem is inflammation though, then perhaps the solution is the FODMAP diet--but being married to a chef, that's going to be challenging :)

That's great news. A good night sleep is an important thing, and a very positive result. I hope we can all share any other tips and experience we have going forward, because it sure is great to know that this is a problem which others are having as well.

I'm also married to a Chef, and changes in diet have been met with fierce resistance. Once I was diagnosed however, I think it became easier to convince her to try changes in diet. To be honest however, nothing I have tried so far in terms of eating has been of much help. I have tried eliminating caffeine, dairy, carbs, gluten, alcohol. I have not tried FODMAP. Magnesium, 5-HTP and a few other over the counter sleep supplements were largely ineffective.

Just a few of my own observations:
  • Drinking alcahol is especially aggravating to my nocturia, especially red wine (doh!). Too much alcahol and I sometimes sleep right through the night, but I regret it later (PEM)
  • I find that with Ibuprofen, it is possible to have a large drink of water right before bedtime, and still to get a good 5-6 hours of sleep.
  • Taking prolonged Ibuprofen I found created an odd sensation in my throat which made it feel odd to swallow, like someone was pulling gently on my neck. Upon visiting a doctor, this was found to be reflux

At the moment I'm taking a low dose tricyclic (amitriptyline 10mg), for which I am only on my third week. I was told that this may also help with the nocturia, however so far it has not been hugely noticeable and I still take Ibuprofen as required.
 

littlebird6180

Senior Member
Messages
119
That's great news. A good night sleep is an important thing, and a very positive result. I hope we can all share any other tips and experience we have going forward, because it sure is great to know that this is a problem which others are having as well.

I'm also married to a Chef, and changes in diet have been met with fierce resistance. Once I was diagnosed however, I think it became easier to convince her to try changes in diet. To be honest however, nothing I have tried so far in terms of eating has been of much help. I have tried eliminating caffeine, dairy, carbs, gluten, alcohol. I have not tried FODMAP. Magnesium, 5-HTP and a few other over the counter sleep supplements were largely ineffective.

Just a few of my own observations:
  • Drinking alcahol is especially aggravating to my nocturia, especially red wine (doh!). Too much alcahol and I sometimes sleep right through the night, but I regret it later (PEM)
  • I find that with Ibuprofen, it is possible to have a large drink of water right before bedtime, and still to get a good 5-6 hours of sleep.
  • Taking prolonged Ibuprofen I found created an odd sensation in my throat which made it feel odd to swallow, like someone was pulling gently on my neck. Upon visiting a doctor, this was found to be reflux

At the moment I'm taking a low dose tricyclic (amitriptyline 10mg), for which I am only on my third week. I was told that this may also help with the nocturia, however so far it has not been hugely noticeable and I still take Ibuprofen as required.

Thanks for this. And yes, my husband is also incredibly supportive and willing to try new diets to help me. He has some food allergies so have both had to be creative. I think it was more of a joke because the idea of cutting out garlic and onion seems impossible for any chef! (and for me, a true lover of both).

I've also tried a full elimination diet last year before I was even diagnosed and I didn't notice much of a difference. I did no grains, legumes, dairy, sugar, eggs for two months. It was hard. I've tried cutting alcohol and caffeine as well with little difference. I have been a tea drinker for 5 years and I barely drink a cup a day of black tea.

I'm going to take ibuprofen again tonight but probably won't do it a 3rd night because for me, I get leaky gut symptoms with too much.

Do you take naltrexone? If that works as it should and boosts immune function, could there be a secondary response of decreased inflammation?
 

M Paine

Senior Member
Messages
341
Location
Auckland, New Zealand
Yes, I think it's fair to say that the Nocturia probably has an immunological basis in our cases. I can reliably predict when it will flare up, it happens during PEM, and those PEM events are usually triggered by exertion or stress in various forms, not diet. Certainly diet has a role in managing the nocturia, however it seems unlikely to be the cause.

It's well known that people experience symptoms related to viral pathogen(s) which may, or may not be, the initiator of their illness. EBV for example causes mono like symptoms like swollen lymph in the neck during PEM. I do wonder if there may be some pathogen of the urinary tract at play here.

http://www.ncbi.nlm.nih.gov/pubmed/18519018

"viruses are increasingly recognized as the cause of lower UTI"