1. Patients launch $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!
Join the National PR Campaign for ME: Power to the Patient (P2tP)
Have you had enough of all the neglect and abuse of ME/CFS patients? Gabby Klein says now is the time for a National PR Campaign for ME/CFS to impress a change. Join the Patient Revolution to restore power to ME patients ...
Discuss the article on the Forums.

Starting LDN tonight, any suggestions?

Discussion in 'General Treatment' started by minkeygirl, Jan 11, 2014.

  1. minkeygirl

    minkeygirl Narcissism = lack of self awareness

    Messages:
    2,337
    Likes:
    1,523
    Left Coast
    I think it was in 2007, a doctor started me on LDN. I knew very little about it and he should have known better, but he started me off on 4 mgs right off the bat. Needless to say I didn't sleep and never went back to it.

    Now I have .5 mgs and I'll stay with that for 2 weeks and then go again in 2 more weeks. I've been through a bad spell with sleep lately and I'm not looking forward to the possibility of not sleeping again. I've read some people here said they went really slowly and took a long time to get to the full dose they can tolerate so I'm wondering if I should have gotten .25 mgs. But if I have to I can always open these and do it that way.

    I know I have to take it at night. Can someone tell me when, with food? I turn off the lights at 10 pm.

    Thanks for the help.
     
  2. jstefl

    jstefl Senior Member

    Messages:
    167
    Likes:
    75
    Brookfield, Wisconsin
    We are all different, but I have the best results taking it in the morning. I have been on it for over three years now, and still limit my dose to 1.5 mg.

    I would suggest taking your dose every other day for a week or so to see how it goes. LDN has never helped my sleep much, in fact it keeps me awake, and that is why I take it mornings. It is quite possible that I am not taking a large enough dose to help with sleep, but the 1.5 mg dose seems to help a little, and any higher dose makes me feel worse, so I don't push it.

    I needed to back off the dose when I started to .2 mg every other day. I very slowly worked my way up to where I am today over the course of several months. It is amazing to me that the normal dose of Naltrexone is 50 mg. To me, that dose sounds lethal! I have found that you can't force it, that the best approach is to start very slowly, and work your way up to a dose that you can handle.

    I realize that that is not much of an answer, but the dosage really needs to be determined by each individual user, and what works for one won't work for the next.

    John
     
  3. minkeygirl

    minkeygirl Narcissism = lack of self awareness

    Messages:
    2,337
    Likes:
    1,523
    Left Coast
    @jstefl I appreciate the information. I know we are all different. I wanted other's experiences to gauge what I want to do.

    I have heard from a lot of people that it messes up sleep. I just wonder why they say take it at night?

    I think I'm going to wait until tomorrow morning. I just can't deal with not sleeping again after almost a week of only 3 hours a night. I'd rather be miserable during the day.

    Thanks

    What I'm reading is that you have to take it with one of the 2 endorphin peaks. A.m. or P.m. Some people are saying (on MS forums) that if they are up 15 minutes after taking it they start to have lucid dreams.

    If I take it at 9 pm. and am up til about 10:30, maybe I'll be ok. Maybe I'll try that. Hmm.
     
    Last edited: Jan 11, 2014
  4. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Messages:
    4,123
    Likes:
    976
    Concord, NH
    I believe it is because the rush in endorphins will make you feel worse, so it is better to sleep throught this. Try it during the day if you don't mind being miserable during the day.

    GG
     
  5. minkeygirl

    minkeygirl Narcissism = lack of self awareness

    Messages:
    2,337
    Likes:
    1,523
    Left Coast
    I did some reading and you want to take it during one of the two endorphin peaks so it works better. ( don't ask me to repeat the science) The better one is at night.

    I think I'm going to suck it up and take it at 9 tonight and hope whatever happens happens early enough so that I can get to sleep. If not it only stays in you for 4 hours.

    Some said they liked the hallucinations from the endorphin rush. We shall see. I just know I'd rather feel like crap if I've had some sleep then not sleep and feel even worse.
     
  6. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,889
    Likes:
    975
    US
    .375 mg was too much for me. I suggest you try .25 mg.
     
  7. minkeygirl

    minkeygirl Narcissism = lack of self awareness

    Messages:
    2,337
    Likes:
    1,523
    Left Coast
    I don't feel like screwing around splitting capsules. I'll give .5 a shot. If that's too much then I'll see.

    When I took 4mgs yrs ago the only problem I remember having was not sleeping.

    Granted that was a long time ago but I'll know soon enough.
     
  8. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,889
    Likes:
    975
    US
    It builds for more than a day :( I had trouble sleeping the first night of .375 mg but it was nothing compared to the next night.
     
  9. minkeygirl

    minkeygirl Narcissism = lack of self awareness

    Messages:
    2,337
    Likes:
    1,523
    Left Coast
    As we know, we all react to meds differently.

    For me It takes feeling worse to start to feel better. Ive got nothing to do this week so I will try this and if its too much after a few days I'll contact my doc.
     
    SickOfSickness likes this.
  10. minkeygirl

    minkeygirl Narcissism = lack of self awareness

    Messages:
    2,337
    Likes:
    1,523
    Left Coast
    As it turns out, not sleeping was the least of my problems. I am nauseous and I have a headache that imitrex won't even touch.

    I need to find out what the filler is and try again.
     
  11. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Messages:
    4,123
    Likes:
    976
    Concord, NH
    I had an increase in headaches also, don't recall nausea though.

    GG
     
  12. minkeygirl

    minkeygirl Narcissism = lack of self awareness

    Messages:
    2,337
    Likes:
    1,523
    Left Coast
    This isn't just a headache. It's 4;30 and its still hanging on even after Imitrix. The nausea is gone thankfully.

    I need to find out what fillers were used because this isn't tolerable I hope that's it.
     

See more popular forum discussions.

Share This Page