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Anyone else suffer from nocturia?

Discussion in 'General ME/CFS Discussion' started by littlebird6180, Oct 6, 2015.

  1. littlebird6180

    littlebird6180 Senior Member

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    Sometimes I wonder if the root of all my problems (well, not really the root but what keeps me from getting better) is that I am up on average 10 times a night to pee. I have a long history with kidney stones and my urologist really has no answers for me. But I don't think I've slept more than 3 hours straight for over 5 years (if not longer but that's when I got pregnant with my first daughter which exacerbated the problem).

    I just had an endocrinologist take my antidiuretic hormone profile so we'll see what those results are. I'm waiting on an appt with another urologist for a second opinion and to rule out chronic kidney disease.

    I take fludrocortisone and thermotabs for POTS (have been on them for about 6 weeks now after a 10 year break because they thought they were causing kidney stones. they don't seem to be working this time though) and my doc was hoping this would help with fluid retention at night but it's not made a difference.

    anyone else suffer from this? it's worse than when I had a newborn waking me all night!
     
  2. ukxmrv

    ukxmrv Senior Member

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    I go through years of peeing 5 plus times each night. So do most of my maternal aunties, mother and sisters.

    For me it doesn't make a huge difference to my ME symptoms but then I have this quirke of sometimes feeling better after a night of little sleep.

    5 years is a lot of broken nights though!

    My CFS doctor says he finds Diabetes Incipidus in his patients.
     
  3. littlebird6180

    littlebird6180 Senior Member

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    Yes, I'm looking into diabetes insipidus. I feel a bit bad for my CFS doc because I'm bringing a LONG list of questions to our next appt :)

    The reason why I think this is such a huge issue for me is because the rare nights I do sleep (and by sleep I mean I only get up 3 times which happens about once a month)...I feel remarkably better the next day. My ability to function is significantly higher and my stamina too. And the nights where it's so bad that it actually fully wakes me up for a couple of hours in the middle of the night...the following days are like a domino effect of bad symptoms. Migraines, extreme brain fog, body aches, low blood pressure. Everything gets worse.
     
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  4. msf

    msf Senior Member

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    Yup, according to KDM it´s from dysregulation of the HPA axis. Mine worsens when my other symptoms worsen - it all starts in the gut for me.
     
  5. PatJ

    PatJ far and free I gaze

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    I used to go at least 2-5 times during the night. After a couple on months on Freddd's treatment I was finally able to stop getting up at night. I have noticed that if I have a night with insomnia then I will have to get up multiple times to urinate. I may be atypical from the usual PWCFS because I have a spinal cord injury that has lead to frequent urination of small quantities (250ml every 1-2 hours during the day, based on 2L of electrolyte liquids with salt. Water goes right through me, and sometimes leads to urinating multiple times in a single hour. Electrolytes stay in longer.)

    My sleep quality improved somewhat as well, but I still wake many times during the night and feel almost exactly the same when I wake as I did when I went to sleep. Refreshing sleep just isn't a term that has applied to me for more than a decade.

    One approach that may help a little is to avoid drinking any liquids at least 2-3 hours before bed.
     
  6. littlebird6180

    littlebird6180 Senior Member

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    I'm sorry--I'm fairly new to all this. I'm going to need some translation :) who is KDM and what is the HPA axis? How do you know it starts int the gut? Is there anything you eat that you've directly linked to the night time urination?
     
  7. littlebird6180

    littlebird6180 Senior Member

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    I have tried cutting all liquids, unfortunately it makes no difference :(

    Can you explain what Freddd's treatment is?
     
  8. jess100

    jess100 Senior Member

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    Have you and your doc considered hyperparathryroid? Symptoms include stones and fatigue, headaches etc. Worth a look.
     
  9. littlebird6180

    littlebird6180 Senior Member

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    Yes, I had a full parathyroid work up and thought that was the issue but they ruled that out a couple years ago. Every time doctors think they've found an answer, I fall back into a medical gray area.
     
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  10. PatJ

    PatJ far and free I gaze

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    Freddd is a user here on Phoenix Rising. His treatment uses 4 main supplements and several additional supplements to treat (not cure) a variety of health conditions. Some people find that it makes them worse, others find no benefit, I had mixed results, and some have had amazing results.

    It's important to take time to understand the treatment before attempting it. One aspect of the treatment is that it often causes unusually high demand for potassium. If you consider trying Freddd's treatment then make sure you have a good supply of potassium pills or powder (potassium gluconate) on hand, and quick access to more if you need it. I had to take 3.5 grams of extra potassium per day to avoid potassium deficiency symptoms. Low potassium can be extremely unpleasant, very painful, or even fatal.

    The second important thing to understand about his treatment is use of L-Carnitine Fumarate. This is a supplement that should be started very slowly (some people use the amount that sits on the end of a toothpick.) Too much at once can sometimes cause extreme anxiety. Others can take a full capsule and not notice any effect, so the experience varies. It's usually the introduction of l-carnitine that causes the increased need for potassium.

    These links from ahmo's signature provide more information:
    Freddd's Protocol guide1, guide2, 3, 4
     
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  11. Apple

    Apple Senior Member

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    I have the same problem but much milder. Mine is caused by a generally crappy bladder, although I don't why I have that. I wake 2-3x a night and have difficulty getting back to sleep each time. Disrupted sleep has such an impact on your overall health. I can't imagine how you feel waking up 10 times! Yikes.

    I presume you've tried lots of overactive bladder meds. Have you considered botox to the bladder?
     
  12. msf

    msf Senior Member

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    Sorry, Littlebird60, I wasn´t very specific, I try not to lecture people unless they ask me too!

    My understanding of how it all works is partial at best, but I think I have some of the pieces in place, at least in my case.

    Inflammatory diet=gut inflammation=increased gut permeability=increased translocation of LPS (from bacteria in the gut into the blood)=increased production of Il-6 (a cytokine)=dysregulation of the HPA (hypothalmic-pituitary-adrenal axis).

    The HPA axis is very complicated, but one of the hormones it regulates is ADH (antidiuretic hormone). If this decreases the body retains less water and you urinate more.
     
  13. msf

    msf Senior Member

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    I find that when I stick to the FODMAP diet my gut symptoms are reduced, and this seems to alleviate my other symptoms, such as waking up at night to urinate.
     
  14. *GG*

    *GG* Senior Member

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    How about something natural for kidney stones?

    I know that Milk Thistle is good for the liver, would think something is good for the kidenys?

    GG
     
  15. Juzey

    Juzey

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    I have this a bit, I would say I wake up twice per night on average.
     
  16. littlebird6180

    littlebird6180 Senior Member

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    Thank you for explaining. Do you follow the FODMAP diet or is there a better anti-inflammatory diet that you recommend?
     
  17. littlebird6180

    littlebird6180 Senior Member

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    To be honest, I have not tried the medications. I have to admit, I've gone from someone who wasn't on any medication to being someone who is now taking 20 pills a day and am overwhelmed by it all. I'm very prone to side effects so am scared of most medications. But I am committed right now to trying new things. My grandmother had terrible side effects with bladder medications. I'm curious about botox though--do you know anyone who has had success with it?
     
  18. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Oh yes. It varies. I have two types of polyuria/nocturia. One is almost pure water, thus almost-certainly due to lack of vasopressin, and responds to desmopressin, but I also have a solute/osmotic diuresis which doesn't. When I get that bad I can be out of bed every ten minutes for 3-4 hours, which is hell. I think that the solute diuresis comes as part of PEM, but I can't be sure until I finally find the time to type up my health diaries. Losing solutes is quite likely to be a cause of some of my symptoms, as I must end up deficient. Hence the similarity between PEM and hangovers, which are also largely due to dehydration and mineral deficiency, I think.

    Convincing doctors that I have polyuria has been a long struggle, and even now I have to buy my own top-up desmopressin as I am afraid to ask the doctor for more in case he stops it altogether, as another doctor did.
     
  19. Eeyore

    Eeyore Senior Member

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    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).
     
  20. msf

    msf Senior Member

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    Yes, I follow the FODMAP diet, and it works really well for me.
     

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