A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
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Polyuria Only Before Sleep

Discussion in 'Gastrointestinal and Urinary' started by dreampop, Nov 10, 2017.

  1. dreampop

    dreampop Senior Member

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    Okay, I have a very specific problem that no doctor has been able to help with, and I have not been able to help myself with, so I'll take a chance here. It's embarrassing, but it's problematic enough that I don't really care anymore.

    It's quite a simple problem - when going to sleep, and only when going to sleep, I have to pee frequently, every 2-10 minutes, sometimes for half hour to an hour. This can be 10x a night. The urgency is high, and it feels like my body is trying to expel all fluid in order to sleep.

    • My ADH levels are normal during the day, and at morning
    • Desmopressin reduces quantity, but not the problem, duration or urgency
    • The amount of liquid I drink at night before bed can be quite small, maybe an ounce or 2 and yet I will put far, far more out than what i drank in the previous 4-6 hours
    • I do not wake up to pee, bed wet
    • I do have POTS, the problem existed before I was on any medication for it (midodrine) and medication doesn't seem to help
    • Seems to be a problem regardless what time I try to sleep, and is only initiated by the act of going to sleep.
    • Elevating bed, and standing upright don't seem to matter as long as I'm my body is preparing to sleep
    • I would say I have polyuria during the day, in part driven by excessive thirst & POTS, however it is nothing like before bed.
    • I do not have sleep anxiety, and I do not worry about the problem in anticipation of it.
    It's an incredibly depressing problem, and internet searches have shown a few people looking for advice and not finding answers (example 1, example 2). Any advice appreciated.
     
    Last edited: Nov 10, 2017
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  2. Diwi9

    Diwi9 Senior Member

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    @dreampop - I have the same problem as you, everything you wrote sounds familiar. The worst part is that I get super thirsty at night, but every sip of liquid sends me back to the toilet.

    Did you mean ADH instead of ACTH? I'm also on desmopressin. How often do you take it? I take my regular dose in the morning and a half dose at night. It helps me a bit. I can't increase my evening dose because I wake up with facial swelling and a horrible headache.
     
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  3. dreampop

    dreampop Senior Member

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    Yeah, my bad.
     
  4. Dechi

    Dechi Senior Member

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    Have you tried oestrogen or testosterone to help strenghten the bladder muscles ?
     
  5. dreampop

    dreampop Senior Member

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    I haven't @Dechi, but my testosterone was on the high side of normal, estrogen was normal. Looking back on what I've tried, and after reading the other thread on this issue, attenuating bladder spasm is one thing I haven't tried.

    @Diwi9 Yeah, exactly right about the thirst at night, and even while I try to sleep. That, in part, is why I think it may be tangentially related to POTS or autonomic function.
     
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  6. dreampop

    dreampop Senior Member

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    Also, one thing I'm keen to know, is what is the period where you lie down awake, and try to go to sleep called. First stage of sleep is NREM stage I - and you are asleep (very lightly). But this polyuria happens while I am awake, in the 10 or so minutes before I would enter NREM stage I if I wasn't dealing with the polyuria.

    I want to see the homeostatic, electric, autonomic, neurological etc.. changes that occur then so maybe I can start figuring this thing out.
     
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Id ask your dr to trial desmopressin. Its not always about abnormal tests but also looking at the patient and treating symptoms.
     
  8. Rlman

    Rlman Senior Member

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    i have the same issue too, except now i also have polyuria/increased thirst during the day. but the pre-sleep frequent urination started a few years before the polyuria/thirst. have you ever had a cystoscopy @dreampop?
     
    Last edited: Jan 2, 2018

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