1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The Mighty Egg: New Life Springs Forth Despite ME/CFS
Jody Smith finds that even with ME/CFS, new life as symbolized by the mighty egg, can still spring forth ...
Discuss the article on the Forums.

Vasopressin for OI

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by heapsreal, Sep 11, 2013.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    6,910
    Likes:
    4,012
    australia (brisbane)
    Just spoke to a cfs friend who told me his cfs daughter uses the hormone vasopressin nasal spray. She would go to the toilet all the time and the nasal spray has helped alot.

    Seems like it could be very helpful for pots/oi. electrolytes have there place but if we keep peeing it out we are just chasing our tails, literally.

    It seems more direct then other sodium retention type hormone treatments.

    Also another thing i havent heard anyone mention is glycerol. i remember years ago reading how athletes were using this to help maintain hydration as it help them to keep fuid balance in their favour and reduce chances of dehydration.

    cheers!!
    Sparrowhawk likes this.
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    6,910
    Likes:
    4,012
    australia (brisbane)
    morning bp supine was under 120/- , standing was 121/- so i dont think it leaves alot of room for error especially if upright for any length of time. but what i did was drink 500ml electrolyte drink first thing in the morning on empty stomache and this increased my bp to 140/- and a slight drop in pulse rate. Im a big guy so i think a bp of about 130/- which was normal for me pre cfs but think 140-150/- makes me feel better and leaves room for error so if upright for long periods. I think bps < 120/- is when i get brain fog and headaches. Im also using salt tablets as well.

    Im looking forward to using vasopressin as it can stop me from peeing so much which will make a difference too.
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    6,910
    Likes:
    4,012
    australia (brisbane)
    anyone used the tablet version and can compare it to the nasal spray of vasopressin?

    There is a definate increase in pulse rate from lying versus standing of 20 beats per minute. Electrolyte drinks have definately helped with brain fog and headaches.

    cheers!!!
  4. August59

    August59 Daughters High School Graduation

    Messages:
    1,479
    Likes:
    397
    Upstate SC, USA
    Are you sure it wasn't desmopressin? Someone on here takes it? "Dannybex" or "CBS". I've seen it pop up in some of the online pharmacies lately. It was developed for diabetes insipidus I believe.
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    6,910
    Likes:
    4,012
    australia (brisbane)
    Yes i suppose im using vasopressin interchangably with desmopressin, so any experience with either would be good.
    I think many of us may have a form of diabetes insipidus??
    SOC likes this.
  6. August59

    August59 Daughters High School Graduation

    Messages:
    1,479
    Likes:
    397
    Upstate SC, USA
    heapsreal likes this.
  7. xks201

    xks201 Senior Member

    Messages:
    600
    Likes:
    177
    This is going to sound ridiculous (but I have verified this finding with others with diabetes insipidus), but the nasal spray nor the oral pills when swallowed work for me. The only thing that works is putting two .100mcg desmopressin pills under my tongue twice per day for sublingual absorption. I don't know why this is - if this drug is particularly finicky in absorption in some of us but it seems to be. Great for OI. If you measure your pee and you are peeing more than you are taking in consistently then it's basically time to diagnose yourself with at least partial diabetes insipidus because the lab tests for partial D.I. (especially stemming from a central DI which is a lack of AVP) are wholly inadequate.
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    6,910
    Likes:
    4,012
    australia (brisbane)
    Well, i did order it from there but i think im going to hold off using it until i see my doc and get some tests done first. Im doing ok on the electrolyte drinks for now.
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    6,910
    Likes:
    4,012
    australia (brisbane)
    When i see my doc next i will talk to him about it more and get my ADH tested as well as cortisol again. I think i saw a sublingual version sold here but prescription required, so looks like a trial and error thing to work out which is helpful. I have thought of measuring 24hrs urine output, so i might do this too.

    cheers!!

See more popular forum discussions.

Share This Page