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LDN - how's it working for you?

Discussion in 'General Treatment' started by jace, May 26, 2010.

?

I've been on LDN for...

  1. Less than a month - it seems good

    12.3%
  2. Less than a month - it's not nice

    14.2%
  3. 1 - 3 months - feeling much better

    6.2%
  4. 1 - 3 months - some good, some bad

    6.8%
  5. 1 - 3 months - feeling worse but hanging in there

    3.1%
  6. 3 - 12 months - it's great

    9.9%
  7. 3 - 12 months - not sure it's working for me

    9.3%
  8. 1 year and more - this stuff works for me

    13.6%
  9. 1 year and more - not sure it's worth it

    3.1%
  10. I used to take it but I gave up

    21.6%
  1. Manganus

    Manganus Senior Member

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    What kind of alternatives are you thinking of?

    Since no-one understands its mechanism of action, it may be a bit hard to find some medication that works the same way.
    ...and it would be similarly hard to judge if the alternative treatments had similar unwanted side effects.
    ;)
     
  2. flitza

    flitza Senior Member

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    Another thought: What is the filler in your LDN. Many compounders use avicel which can cause issues in some people. I've even heard more folks with tree allergies react to it.

    This is all not to deny that you might be allergic to the LDN itself. Just a thought.
     
    Learner1 likes this.
  3. Manganus

    Manganus Senior Member

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    I'm most definitely not thinking of allergies. (Although I've no other theory either. I prefer not to guess.)
     
  4. Webdog

    Webdog Senior Member

    An update.

    Two weeks ago, I decreased my nightly LDN dosage from 9mg to 6mg. My sleep has improved modestly. In particular, when I wake up, I tend to fall back to sleep more easily.

    My current doctor has no clue about LDN, so I'm testing this dose change on my own. If the sleep improvements hold, I'll stay at 6mg.
     
    Sancar and flitza like this.
  5. bombsh3ll

    bombsh3ll Senior Member

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    I took LDN for the first time last time at 1.5mg and had the night from hell. Never. Again. !!

    Although I am not on any opiate medication, I had "withdrawal" symptoms worthy of Trainspotting, starting soon after taking it around 10.30. I was awake all night with nausea, pounding rapid heart rate, palpitations, BP rocketed, sweating, extreme anxiety, headache, chills. I was taking this hoping to boost my own endorphins, thinking they were probably very low.

    I had high hopes for it, being an opioid responder when I do take pain meds. To add insult to injury I bought 2 bottles of 30 tabs each as the postage was pricey, and thought I'd give it at least a month, probably going up to 3mg.

    Another thing to try crossed off I guess!
     
    pattismith and sb4 like this.
  6. Diwi9

    Diwi9 Senior Member

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    Ouch, sorry about that horrid experience you had. I was started on 1.5mg and also had horrible side effects. They did pass, but it was difficult to get through. A friend of mine recently started LDN and her doctor started her at 0.5mg and is increasing very slowly. She has not experienced side effects.
     
    pattismith likes this.
  7. bombsh3ll

    bombsh3ll Senior Member

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    Have either of you had any positive effects from it? I don't think I could touch it again at any dose.
     
  8. Marc_NL

    Marc_NL Senior Member

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    I once started 0.5 mg and also had this "night from hell", after that three of the best days I had in a long time.
    After that the effect faded away.
    Every time I increased the dose I felt something similar but never as strong as with the 0.5 mg
    I stopped after being at 4.5 mg for a while.

    Still planning to try it again sometime.
     
    pattismith likes this.
  9. lyran

    lyran

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    I take LDN 3.0 mg every other night (3 times a week). If I take it every night, it loses it's effectiveness. It helps with my fatigue but not with other symptoms.
     
    sb4 and hamsterman like this.
  10. hamsterman

    hamsterman Senior Member

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    Hmmm.. This is interesting to me. When you take it 3 times a week, are the positive effects consistent everyday? or are the benefits less on the days that you don't take it?
     
  11. perchance dreamer

    perchance dreamer Senior Member

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    Did any of you start LDN while still taking sleep medicine? Is it advised not to take sleep medicine while on it?
     
  12. Hugo

    Hugo Senior Member

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    It is? I didnt know that.. I dont take sleep meds now but I have earlier in the treatment. Aha sorry I saw it was a question.. read it to fast.
     
  13. flitza

    flitza Senior Member

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    I never heard that there is a drug interaction with sleep meds, just opioids I thought. I personally take Xyrem and Melatonin with no issues.
     
  14. perchance dreamer

    perchance dreamer Senior Member

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    @flitza, I confirmed it with the pharmacist, and he said that opioids are the only contraindication for LDN. I'm glad I don't have to worry about taking it with sleep medicine.
     
    flitza likes this.
  15. hamsterman

    hamsterman Senior Member

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    ok, once again (for the 4rth time)... I notice the benefits are extraordinary for the first week, Moderate by the 2nd week... Now by the 3rd week... its a very mild... ( but sleeping benefits are constant.) Increasing the dose doesn't seem to help. I am considering doing another week off... and starting again.... or maybe doing 3 times a week. Im not sure really. Anyone have similar experiences, and or strategies?
     
    sb4 likes this.
  16. lyran

    lyran

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    The benefits are less on the days that I don't take it.
     
  17. Diwi9

    Diwi9 Senior Member

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    Sorry @bombsh3ll, I missed this post by you. Yes, it has helped us both. I got worse each time I titrated up, and it lasted about a week each time. I've been on LDN for a few months and my doctor now has me now taking 4.5mg at night and another 4.5mg in the morning (which is completely different from the normal protocol). It's interesting that this latest boost had no negative side effects, I was surprised because starting on the medication in the beginning was so difficult.
     
    Aroa likes this.
  18. Aroa

    Aroa

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    Thanks so much for sharing your experiences !!!!

    Dr. Jarred Younger suggested that higher erythrocyte sedimentation rate (ESR) was related with higher response to LDN.

    Could anyone comment on this ?
     
    Isaiah 58:11 and pattismith like this.
  19. pattismith

    pattismith Senior Member

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    that's interesting!
     
  20. EsetIsadore

    EsetIsadore

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    It took me ages to be convinced to try LDN. In June I finally agreed. Following my doctor’s directive, I started at 1.5 for two weeks, then increased to 3mg for a week, and then up to 4.5mg. I had not only horrific insomnia, but also terrible constipation with fecal impaction (absolutely not a normal pattern for me). A doctor at the Stanford ME/CFS Clinic is insisting I go back on it. I agreed to try - at .5mg. I did not appreciate, however, that he insisted it was impossible for LDN to cause constipation. Our understanding of the mechanisms of any drug much less the mysteries of the human body are always limited.
     
    sb4, Aroa and pattismith like this.

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