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Anyone else suffer from nocturia?

Eeyore

Senior Member
Messages
595
I should add - polyuria / nocturia can be indicative of a serious problem, and you should be thoroughly evaluated for it. In particular, renal function should be measured (serum creatinine / BUN - the former being more important), and urine should be analyzed. It could be centrally mediated (ADH / brain), but it may not be, and you don't want to miss anything.
 

Debbie23

Senior Member
Messages
137
I get this a lot. It doesn't matter if I limit liquid or whatever because I frequently wake up feeling like I'm desperate to go even when I can't/ don't need to. I also get this a lot, this feeling I really need to go, when I'm needing to stand up and down/ transfer a lot usually it's just a feeling and I don't actually need to go at all. I've tried sleeping with the head of the bed propped up for quite some time, it helps with breathing and palpitations etc. but I'm not sure it helps with this because I still get it a lot.

Possibly a TMI question but does anyone like me get the opposite too? Like you've lost the sensation to your bladder so you get very, very little warning that you need to go at times too?
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
For people wanting to test for POTS associated blood volume, Sodium 24hr urine test is relatively easy to source from a good lab.

Eeyore timely mentioned the renin-angiotensin-aldosterone system. In POTS this is reversed, so you get a 'paradoxical' reaction often. This could be useful for patients who get blocked (especially in the UK) from having a TILT test. Perhaps if you could get this test done first and show a doctor if its abnormal, that might help.

Here's a paper on that:

Renin-Aldosterone Paradox and Perturbed Blood Volume Regulation Underlying Postural Tachycardia Syndrome.

http://www.ncbi.nlm.nih.gov/pubmed/15781744

Patients with POTS have paradoxically unchanged plasma renin activity and low aldosterone given their marked reduction in plasma volume. These patients also have a significant red blood cell volume deficit, which is regulated by the renal hormone erythropoietin. These abnormalities suggest that the kidney may play a key role in the pathophysiology of POTS.


I also think I remember correctly that position (supine vs standing), makes a difference in the values of Aldosterone? Maybe that was blood though and not 24hr urine?

I'd add that sadly, peeing at night is a sign of autonomic dysfunction which can have many cause, and we won't all have the 'same' cause. Likely with an ME or CFS diagnosis, but not always.

If you're worried about your kidney output if you only pee at night and hardly during the day, a simple test is a creatine clearance estimation/GFR estimation. Also remember if you pee a lot at night, you'll be dehydrated a lot in the day and that's why you don't pee so much as well.
 

Eeyore

Senior Member
Messages
595
I haven't experienced what you describe @Debbie23. This in general is more common in women. It could be neurogenic (which is treatable with meds) and it could be IC (also treatable, but not as readily so, and more mysterious). I'd suggest you talk to a urologist about it. There are treatments that might help.
 

Debbie23

Senior Member
Messages
137
I haven't what you describe @Debbie23. This in general is more common in women. It could be neurogenic (which is treatable with meds) and it could be IC (also treatable, but not as readily so, and more mysterious). I'd suggest you talk to a urologist about it. There are treatments that might help.
That's interesting, thank you, Eeyore! I will definitely Ask my doctor about it then! I also have endometriosis and I seem to remember something in that regard last time I had a surgery, so it could well be that maybe. The reason I wondered whether it could be ME related is because this seems to happen more during a relapse, but I will definitely ask my GP if they can dig out the surgery report and have a chat about it. :)
 

Eeyore

Senior Member
Messages
595
It could also be a complication of surgery - so that's yet another thing to consider. I think it merits a workup by a urologist if it's new, worsening, or just if it bothers you.
 

littlebird6180

Senior Member
Messages
119
Low ADH is common in ME. I have low ADH and hypovolemia. However, I almost never get up at night to use the bathroom - maybe once per 6 months?

You might consider using florinef and/or desmopressin on the advice of your endo. You can also ask that he/she examine the renin-angiotensin-aldosterone system. Florinef is probably safer in terms of preventing

Some evidence in ME suggests that we don't have true diabetes insipidus (aka SIADH). We do make ADH and secrete it, and sometimes the levels are normal (normal is a wide range) - however, the levels are not appropriate given serum osmolality. i.e. With elevated osmolality, ADH should be up, and it's not - it's on the very low end. I think you have to show a blunted response to changes in serum osmolality.

My own ADH has been low normal, but also sometimes undetectable.

Florinef is probably safer in maintaining sodium in normal range (it works by retaining sodium in the kidneys), although desmopressin is more of a direct replacement for AVP (aka arginine vasopressin, ADH, or vasopressin - many terms for the same thing). This is the advice an endo gave me long ago (this last paragraph).

isn't florinef the same as fludrocortisone?

i've tried midodrine in the past too but it caused this horrible tingling sensation in my scalp. i've heard about an ADH nasal spray. Wonder if anyone here has had luck with that
 

Debbie23

Senior Member
Messages
137
I could be totally misremembering, entirely possible with my brain! But I seem to remember the letter for my endo surgery mentioning my ureter, the surgeon wasn't very nice Tbh and I never got a follow up appointment so it kind of was left at the time. I don't know what happened with my letter about it but it will be in my medial file so I will ask my GP if they can look into it in case this could have caused this issue. I really cannot remember if this happened before this surgery or not!
 

Eeyore

Senior Member
Messages
595
isn't florinef the same as fludrocortisone?

i've tried midodrine in the past too but it caused this horrible tingling sensation in my scalp. i've heard about an ADH nasal spray. Wonder if anyone here has had luck with that


Yes, florinef is the old brand name (no longer made) for fludrocortisone (the generic). It's faster to type. =P

Midodrine can help people with low plasma volume but works very differently (through adrenergic receptor agonism). Florinef increases the retention of salt and fluid by the kidneys (it's a synthetic analog of aldosterone).

The scalp tingling is a common issue with midodrine. I haven't tried midodrine, but I've definitely read about that side effect. Not harmful as far as I know, but it drives some patients nuts. Not sure if it goes away with time.

The nasal spray is desmopressin. Actual AVP has too short a half life to use. Desmopressin is used to replace AVP in patients who cannot make it endogenously.
 

M Paine

Senior Member
Messages
341
Location
Auckland, New Zealand
>" Anyone else suffer from nocturia?"

Yes, I certainly do.

In fact, I always assumed that the Nocturia was the cause of my other CFS/ME symptoms. I went down the track of seeing Urologists and having very exhaustive testing performed (Ultrasound, Cystoscopy, Blood, Urine, Flow etc... etc).

I now understand that Nocturia is being aggravated by the inflammatory aspects of CFS/ME. I can prevent my Nocturia by taking a NSAID (400mg Ibuprofen) before bed. If I do this during PEM, I can sleep for 5 - 6 hours before the NSAID effects wear off and I need to pee and re-dose.

If I wake up during the night now, I pee once, wait 30 minutes and if I can't sleep and need to pee again, I take another 400mg of Ibuprofen with some food and water. Works like a charm, in 30 minutes I'll be back asleep.

My non-scientific reasoning in my case is that the nerve which sending the message that the bladder needs to empty is being triggered by pro-inflammatory cytokines.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,232
Location
Cornwall, UK
Some evidence in ME suggests that we don't have true diabetes insipidus (aka SIADH). We do make ADH and secrete it, and sometimes the levels are normal (normal is a wide range) - however, the levels are not appropriate given serum osmolality. i.e. With elevated osmolality, ADH should be up, and it's not - it's on the very low end. I think you have to show a blunted response to changes in serum osmolality.

My own ADH has been low normal, but also sometimes undetectable.

Surely SIADH is the opposite to diabetes insipidus - SIADH involves secreting too much vasopressin/ADH, whereas DI involves secreting too little.

See here:
SIADH
Syndrome of inappropriate antidiuretic hormone secretion. A condition characterised by increased vasopressin/ADH secretion (despite low plasma osmolarity), water retention and dilutional hyponatraemia

EDIT

And isn't it low urine osmolality that should lead to higher ADH secretion? Low osmo means low concentration, so more ADH is needed to concentrate it.

ANOTHER EDIT

Sorry - struggling with foggy brain still - I see now that you said low plasma osmolarity, not urine, so you are correct on that second point!

BTW, by coincidence Physician's First Watch had a long article about intravenous fluids, electrolyte imbalances, ADH, etc. yesterday - here it is.
 
Last edited:

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,232
Location
Cornwall, UK
>" Anyone else suffer from nocturia?"

Yes, I certainly do.

In fact, I always assumed that the Nocturia was the cause of my other CFS/ME symptoms. I went down the track of seeing Urologists and having very exhaustive testing performed (Ultrasound, Cystoscopy, Blood, Urine, Flow etc... etc).

I now understand that Nocturia is being aggravated by the inflammatory aspects of CFS/ME. I can prevent my Nocturia by taking a NSAID (400mg Ibuprofen) before bed. If I do this during PEM, I can sleep for 5 - 6 hours before the NSAID effects wear off and I need to pee and re-dose.

If I wake up during the night now, I pee once, wait 30 minutes and if I can't sleep and need to pee again, I take another 400mg of Ibuprofen with some food and water. Works like a charm, in 30 minutes I'll be back asleep.

My non-scientific reasoning in my case is that the nerve which sending the message that the bladder needs to empty is being triggered by pro-inflammatory cytokines.

I tried to fix my solute diuresis with natural anti-inflammatories, without success. I blogged about it here, here and here.
 

Eeyore

Senior Member
Messages
595
Surely SIADH is the opposite to diabetes insipidus - SIADH involves secreting too much vasopressin/ADH, whereas DI involves secreting too little.

Yes, you are correct - thanks for pointing that out. That is an error, we are talking about DI (diabetes insipidus) NOT SIADH. They would have opposite effects and ME patients tend to have a mild version of the former.


And isn't it low urine osmolality that should lead to higher ADH secretion? Low osmo means low concentration, so more ADH is needed to concentrate it.

Yes, you need to check the blood - urine osmolality should vary to keep blood constant, but in and of itself doesn't really matter. The (very old) test for DI was water deprivation for 12 hrs overnight and then looking at whether the urine was concentrated - it's not a bad place to start, as ME patients don't do that as well.

I don't have any of the nocturia symptoms at all really. I often don't sleep through the night, even with lots of pills for it, but I won't actually get up - it has nothing to do with urination, my brain just sucks at sleeping for long periods straight. It prefers to sleep whenever I need it to do something useful... I have had some really low ADH readings.

Too many NSAIDS can be bad for the kidneys btw - so watch out for that. They act by inhibiting cyclooxygenase, so prostaglandins are reduced - but prostaglandins have key roles in many systems in the body, including the kidneys and stomach. Nephrologists as a rule hate NSAIDS and tell their patients to never take them. Tylenol won't hurt kidneys, but it will screw up your liver... Not that these are always unsafe drugs, but as everything, in moderation. For kidneys, an aspirin a day doesn't seem to be a problem - although it anticoagulates you, so that's another risk (or benefit, depending on the circumstances).
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,232
Location
Cornwall, UK
Yes, you are correct - thanks for pointing that out. That is an error, we are talking about DI (diabetes insipidus) NOT SIADH. They would have opposite effects and ME patients tend to have a mild version of the former.

Yes, you need to check the blood - urine osmolality should vary to keep blood constant, but in and of itself doesn't really matter. The (very old) test for DI was water deprivation for 12 hrs overnight and then looking at whether the urine was concentrated - it's not a bad place to start, as ME patients don't do that as well.

I don't have any of the nocturia symptoms at all really. I often don't sleep through the night, even with lots of pills for it, but I won't actually get up - it has nothing to do with urination, my brain just sucks at sleeping for long periods straight. It prefers to sleep whenever I need it to do something useful... I have had some really low ADH readings.

Too many NSAIDS can be bad for the kidneys btw - so watch out for that. They act by inhibiting cyclooxygenase, so prostaglandins are reduced - but prostaglandins have key roles in many systems in the body, including the kidneys and stomach. Nephrologists as a rule hate NSAIDS and tell their patients to never take them. Tylenol won't hurt kidneys, but it will screw up your liver... Not that these are always unsafe drugs, but as everything, in moderation. For kidneys, an aspirin a day doesn't seem to be a problem - although it anticoagulates you, so that's another risk (or benefit, depending on the circumstances).
My docs were rubbish at determining the cause of my severe hyponatraemia, which seems almost certain to have been due to an ACE inhibitor on top of long-term (maybe lifelong) cerebral salt wasting. I figured it out in the end, but not before suffering significant damage and two emergencies.

The trouble with solute diuresis is that the urine can be quite concentrated, because a large proportion of the solutes lost in urine is salt.

In the UK they were still doing the (daytime) fluid deprivation test in in the 2000s, as it's what I had. They were incredibly sloppy - there was no opportunity to wash before urinating, the urine was left uncovered in a cardboard bedpan, so there was ample opportunity for additional osmotic particles to get into it, and I was made to keep very still, with the consequence that my lymph flow appears to have almost stopped, and I ended up with my clothes so tight that I had quite a bad backache, as I couldn't shift my excess fluid.

Anyone who's losing a lot of fluid - as opposed to simple frequency - get your electrolytes checked to see if you need to supplement.

I have heard anecdotally that sodium bicarbonate can help (some people) with interstitial cystitis.
 

littlebird6180

Senior Member
Messages
119
>" Anyone else suffer from nocturia?"

Yes, I certainly do.

In fact, I always assumed that the Nocturia was the cause of my other CFS/ME symptoms. I went down the track of seeing Urologists and having very exhaustive testing performed (Ultrasound, Cystoscopy, Blood, Urine, Flow etc... etc).

I now understand that Nocturia is being aggravated by the inflammatory aspects of CFS/ME. I can prevent my Nocturia by taking a NSAID (400mg Ibuprofen) before bed. If I do this during PEM, I can sleep for 5 - 6 hours before the NSAID effects wear off and I need to pee and re-dose.

If I wake up during the night now, I pee once, wait 30 minutes and if I can't sleep and need to pee again, I take another 400mg of Ibuprofen with some food and water. Works like a charm, in 30 minutes I'll be back asleep.

My non-scientific reasoning in my case is that the nerve which sending the message that the bladder needs to empty is being triggered by pro-inflammatory cytokines.


this is really interesting to me because i took advil the other night at bed time and only got up 3 times that night and felt much better rested but never would have made that connection. I'm going to try again tonight.

You guys all blow me away with your medical knowledge. I'm so impressed--everyone here's knowledge is so vast. I feel like I know nothing.
 

M Paine

Senior Member
Messages
341
Location
Auckland, New Zealand
this is really interesting to me because i took advil the other night at bed time and only got up 3 times that night and felt much better rested but never would have made that connection. I'm going to try again tonight.


Best of luck with this, I hope that you see some positive results. Please report back with how you go.

Even a single Ibuprofen pill (usually 200mg) has the desired effect when my symptoms are mild. I personally think that the benefits of having a good sleep are massive, beyond description. It was the single most positive step I have taken apart from avoiding PEM in the first place.

Being able to get sleep while in severe PEM has reduced the severity of my other symptoms. Particularly the effects on mood and anxiety. I used to get very moody and angry after a night of constant toilet visits and sleeplessness, I'm sure people can relate to the pure anger and frustration one experiences in not being able to sleep when extremely tired with important things to do the next day.

One does not think to try painkillers in that situation, because pain is not usually prevalent.
 
Messages
73
Yes! I did not have this problem at all until my symptoms worsened. Now I get up several times a night, sometimes I don't even have anything to pee out. But the urge is there. It can be quite frustrating. Often in the morning hours, I am up every half hour. I went to a urologist and had a scope exam done (which was quite painful!). No issues. He wanted to put me on medication, but I refused. I always assumed this is part of my CFS.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,232
Location
Cornwall, UK
this is really interesting to me because i took advil the other night at bed time and only got up 3 times that night and felt much better rested but never would have made that connection. I'm going to try again tonight.

You guys all blow me away with your medical knowledge. I'm so impressed--everyone here's knowledge is so vast. I feel like I know nothing.
Learning is good! I think we are all still learning from each other, which is great. Learning something each day is one of my three goals for a good day, the others being to achieve something and to look forward to something.