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Is Anyone on LDN for pain?

Discussion in 'Alternative Therapies' started by Misfit Toy, Jun 15, 2015.

  1. Misfit Toy

    Misfit Toy Senior Member

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    I am thinking in the next couple weeks of trying LDN. As many know, I have Sjogren's syndrome, fibromyalgia and a lot of pain. The last time I tried LDN in 2008, I could not sleep. I do not know the dosage I was on.

    My doc wants me to start at .5 mg and he says that you can only take it at night. That it only works at night.

    Does anyone else here take it for chronic pain?

    Also, not sleeping is my biggest symptom with this condition. Does anyone else take it during the day and is it okay to do so?

    I seriously can't afford to not sleep. I don't sleep well as it is.

    I am wondering if I should start it at a smaller dose?

    I'm desperate for pain relief and can't take the meds for Sjogrens.

    I will have to stop my pain meds which freaks me out. When my pain is through the roof, I need tramadol. My doc says if I have pain, take the pain med and skip the LDN for that day. Has anyone else given up your pain meds for LDN?

    Any advisement I would welcome.

    I have read many threads on here about LDN, but I'm not sure if anyone is on it for pain. I am seeing that you can have a Herxheimer reaction with this as well. Great!
     
  2. minkeygirl

    minkeygirl But I Look So Good.

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    There are people who take it in the morning because of the problems with sleep. I know there is a morning endorphin Rush that it uses but I don't know when it is.

    If you look on some MS boards and even here tbere are people who take it in the morning. The MS boards also talk about pain relief

    I could not sleep at all with it at night. I stopped after about 8 months. No real benefit but I can't be sure it was from am dosing
     
    Misfit Toy likes this.
  3. Misfit Toy

    Misfit Toy Senior Member

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    @minkeygirl -yes, thank you. Yes, that's what my doc had said is that people can't really benefit from it if they take it in the AM. Something about the immune system needing it at night.

    I saw my chiropractor today who has Crohn's Disease. he is in pretty good health. He told me he didn't sleep a wink on any dose with it.

    That's what worries me. I am already too sleep deprived.
     
  4. Amaya2014

    Amaya2014 Senior Member

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    I've been on it several months now and consider it a Godsend for the fibro pain.

    I was on another post about AM use. Thought I'd give it a try today and it went bad. I also take Provigil and Gabapentin so not sure of this was a bad combo.

    It slowed me down to the point I had to lay down for several hours and lost half of the day. It really ramped up my neurological issues. I don't plan on doing it again. Going back to night time dosing and try to find other ways to improve sleep.
     
    Misfit Toy likes this.
  5. minkeygirl

    minkeygirl But I Look So Good.

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    When I took it in the morning I slept fine.

    You don't have anything to lose by trying it, night or morning.

    Some people who take it at night have crazy dreams. I wish.

    You've been trying so much for pain, just go for it.

    Start really low. Like .5 mgs. Or less since you're really sensitive.

    Also check out skip's pharmacy. Lots of people here get there stuff from him and there's info in his site.
     
    Misfit Toy likes this.
  6. natasa778

    natasa778 Senior Member

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    Just curious (and sorry cos off LDN topic) but have you tried high CBD hemp oil for pain?
     
  7. lnester7

    lnester7 Seven

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    They put me on it for pain, the 4.5mg did not do it, they increased me to 4.X2 pills now and she told me to go up until pain is stable. I am wondering if my pain is coming from big breast or Latic acid, My major problem is my spine pain now, the rest of body more under control.
     
  8. Misfit Toy

    Misfit Toy Senior Member

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    Wow, @Inester7-that's a high dose! Do you sleep?
     
  9. lnester7

    lnester7 Seven

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    Yes, I do take trazadone for sleep I do not go to stage 4, but that was before LDN, By the way I take LDN in the morning first thing.
     
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  10. Misfit Toy

    Misfit Toy Senior Member

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    Interesting. I will try it at night but if I can't sleep, it will have to be stopped or taken in the AM.
     
    Amaya2014 likes this.
  11. voner

    voner Senior Member

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    misfit,

    your doctor is not up-to-date with the current thinking about how LDN works.

    if you Google "Jared younger" and naltrexone on this site or just the Internet, you'll find plenty of information about the current thinking that LDN may be a microglia inhibitor, which, I think, invalidates the "only take this at night" prescription, which was based upon the possibility that the naltrexone was blocking your endogenous opiates during the evening, thus causing a upswing in your endogenous opiates during the daytime and providing pain relief. in fact, if low-dose naltrexone is a microglia inhibitor, perhaps it might be better to take it during the day and night both. I don't think anybody really knows right now, but the evidence is mounting on the side of Low dose naltrexone being at microglia inhibitor.

    Think carefully about this decision. If you need to go off your "pain meds", that probably indicates that you are on some sort of opiate. you will have to go through the withdrawal process for the opiate before use take LDN, and you better make sure that all the Opiates are flushed out of your system completely before you start taking LDN.

    i've gone through that withdrawal process and have tried LDN trials twice for at least 4 months each time and found no pain relief. Other people it helps....

    I had no sleep problems.

    you might try working on your sleep problems first???? wish I could help more. good luck.
     
    Last edited: Jun 15, 2015
    Misfit Toy likes this.
  12. *GG*

    *GG* Senior Member

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    Was almost expecting the Wow, to be about big breast. LOL

    I know a friend of a friends who had big breast reduced because they were causing her back pain!

    GG
     
  13. Misfit Toy

    Misfit Toy Senior Member

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    @voner -I will look into it. I'm not on opiates daily and can go weeks without. My sleep problems are coming from pain and this disease.

    The only thing that knocks me out is anesthesia...there is no working on the sleep although I keep trying!

    And yes, opiates...tramadol and sometimes Percocet. Joint pain and Fibro.
     
  14. Misfit Toy

    Misfit Toy Senior Member

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    Hey, I wanted to post something I just found out....you can take tramadol on LDN. On an LDN website. It's not a narcotic in the true sense so people do well on LDN and Ultram.
     
  15. alice111

    alice111 Senior Member

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    I have a had HUGE success with pain this last four months taking "Phoenix tears"aka Rick Simpson oil.

    I used to take tramadol as it was the only thing that helped, but the oil has been miraculous! It is NOT the same as CBC oil, so be careful when u buy.
     
    natasa778 likes this.
  16. Misfit Toy

    Misfit Toy Senior Member

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    @alice111 -will look it up. Tried CBD oil and was high as a kite and had a major allergy to it. Thanks for the info! Will look it up.

    Just looked up. It has THC in it which gets you high....yeah, I'm already brain fogged. That's the problem with that.
     
    Last edited: Jun 16, 2015
  17. voner

    voner Senior Member

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    I had nightly sleep problems from pain and the disease also. Sometimes I still do, but taking a small amount of amitriptyline a bedtime helps quite a bit for me. hope you can find something for you. LDN is certainly worth a try if you're willing to cut out opiates. nobody can tell you how your body is going to react. Start low and go slow slow.

    good luck.
     
    Amaya2014 likes this.
  18. SB_1108

    SB_1108 Senior Member

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    I just wanted to share my experience with LDN...

    I started 1.0mg in May and didn't notice any changes so after about two weeks I moved up to 2mg. Well that was WAY WAY WAY too much. But everyone says "stick it out, the side effects will pass!" So I stayed at 2mg for 3 weeks - and all that time I dealt with major side effects.

    Unfortunately for me, the LDN sent me into a crash. I've been off the meds for a week and I'm still recovering from the crash.

    I plan to restart in another month (after I've had time to adjust back to my "normal") but this time I will start at 0.1mg perhaps every other day?

    In general I'm very sensitive to supplements and medications. I can only tolerate tiny dosages of everything... so I'm not surprised that the LDN had such a negative effect. But I'd love to hear theories about why this happens for some and why others can start at 4.5mg and be totally fine!

    My point is... If you are sensitive, start SUPER LOW!!!
     
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  19. Misfit Toy

    Misfit Toy Senior Member

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    This may be a stupid question.....0.1mg is lower than .5....correct?
     
  20. SB_1108

    SB_1108 Senior Member

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    Yes - I thought about trying 0.5mg but based on my experience at 1mg... I think I need the smallest dose possible.
     

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