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Questions about starting LDN

Discussion in 'General ME/CFS Discussion' started by perchance dreamer, Oct 9, 2017.

  1. perchance dreamer

    perchance dreamer Senior Member

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    Sorry to add yet another LDN thread, but I've been reading them a long time, and I'm still unclear about some things. I'm interested in trying LDN because I have a great deal of back and neck inflammation and a long-standing insomnia problem.

    People's reactions seem so mixed. For some, it's a big benefit, while others find that all they had were side effects and no benefits.

    1. My doctor's office prescribes transdermal LDN. Have any of you found this form to be more beneficial or result in fewer side effects than the other forms?

    2. Have any of you still had sleep disturbances at the beginning even if you start with a low dose such as .5 MG first thing in the morning? I think my doctor's office recommends morning doses if you are really sensitive to meds.

    3. If you start at a super low dose (@PatJ, I read you started at .125) could you still have side effects? I think it would be hard to have just side effects and no benefits while you are titrating.

    4. I know LDN helps some people with brain fog, but have any of you felt more spacey at first?

    5. For those who tried LDN, but stopped, what were the side effects you found intolerable?

    5. After going on LDN, have any of you discontinued other immune modulators you may have been taking? I take 700 MG of beta glucan a day. This is probably something I'll have to ask about at my doctor's office.

    6. If you already take sleep medicine, do you still take it and slowly taper off once you've been on LDN for while?

    Thanks for taking the time to read all this!
     
  2. PatJ

    PatJ far and free I gaze

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    I had sleep disturbances, but I've also always taken LDN at night (around midnight since I wake then anyway, then go back to sleep.) Some nights were worse than others. Even though I had sleep disruption, I often had better quality sleep overall meaning that sleep might be deeper than usual during one part of the night, but then absent later in the night.

    After roughly a month of inconsistent sleep (while titrating) my sleep became more consistent. I think sleep disruption (and other symptoms) is common when the dose changes so it makes sense that it will happen initially and when increasing the dose. Once my dose stabilized, so did my sleep.

    Dose time seems to vary based on individual. Some people find that LDN doesn't work as well when they take it in the morning, others find it doesn't work well if they take it at night.

    Keep in mind that side effects aren't necessarily a bad thing if they're tolerable. As long as they subside (usually within two weeks max after starting, or after a dose increase) then they're often a sign that the LDN is having some benefit and the body is adjusting.

    I did start at 0.125 mg/day. After a month I had reached 2.5 mg/day.

    I had side effects from the first dose but also benefits. Some people are so sensitive that they hit side effects even with 0.025 mg/day.

    I also had new side effects as the dose increased. At around 1.5 mg I started having abdominal pains (a known side effect), a thin film-like coating inside my mouth whenever I ate carbs, and episodes of feeling quite cold during some mornings. After a week or so these symptoms faded away. At 4 mg I started to experience anxiety. I eventually found that 2.5 mg was a good balance point between benefits and drawbacks.

    I don't think my brainfog increased but I did feel more tired at times during the day, which can reduce clarity of thought. After a couple of weeks I had less brainfog than before starting LDN.

    LDN helped to improve my sleep but I still have to take sleep supplements (as listed in the blog linked in my signature.) Everything I do to aid my sleep adds a certain amount of effectiveness, but overall they add up to a significant benefit and much better sleep than I used to get.

    This site has a lot of useful LDN information.
     
  3. perchance dreamer

    perchance dreamer Senior Member

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    Thanks so much, @PatJ. That's all really helpful.

    My IV nurse said that LDN helps her brain fog, but gives her weird dreams. I don't mind weird dreams as long as they aren't nightmares.

    I wonder how much weirder my dreams could get, anyway. The other night I dreamed big bears wearing dog masks were wandering the city. On another night recently, I had a dream within a dream. I actually get a big kick out of dreams.
     
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  4. PatJ

    PatJ far and free I gaze

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    I had one nightmare about two weeks after starting the LDN. Otherwise I had some normal but unusually vivid dreams.

    Probably something to do with all the talk of masquerades and subterfuge around here. Things are not what they seem. :)
     
  5. JES

    JES Senior Member

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    I have no experiences from transdermal LDN. Oral LDN is the one that has been studied in clinical trials, so there is potentially a risk that transdermal won't achieve the same concentration in the body. Regarding side effects, LDN caused me stomach issues in the first few weeks, and I heard it's pretty common. I'd imagine with transdermal there would be less if any stomach/bowel side effects.

    Basically no sleep disturbance except for maybe the first day, I also started with .5 MG. In the long run it improved my sleep slightly.

    Some people claim side effects from very low dosages. I'm a bit skeptical, I wouldn't notice anything from such a minimal dosage.

    Yeah perhaps a bit more for the first 3-5 days, but it definitely went away.

    Similar side effects as when I started, stomach/bowel related. LDN helps to reduce pain so I experience increased pain levels when I stop it.

    Could be wise to ask, but LDN works very differently from other immune modulators like beta glucans, which are more like immune stimulators. LDN can be used in autoimmune diseases because it doesn't overstimulate the immune system in similar way as many natural supplements such as beta glucan.
     
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  6. Wishful

    Wishful Senior Member

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    Might as well add that I had no noticeable side effects from LDN, and I started at 4.5 mg. It just very noticeably reduced my aches. The day after my first dose, I forced myself to go for a 'hike for exercise', and instead of turning back at the base of a steep hill as expected, I continued up, and realized that my legs didn't hurt. I kept walking for a few more km's, marvelling at how my legs didn't hurt the way they had for so long.

    I had no side effects from going off it either (aside from not having the benefit).

    No feedback on lower doses; for me it stops working below 2.0 mg. I think I tried a tiny amount once, but didn't notice any effect.
     
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  7. perchance dreamer

    perchance dreamer Senior Member

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    Thanks for the input, guys! It's really helpful reading about other people's experiences with it.
     
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  8. CedarHome

    CedarHome

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    I started at 1.5 mg at night a couple weeks ago. Sleep improved immediately. Couple days of malaise (immune system kicking in?) which then resolved.

    Good sleep *mostly* still here. Dreams are VIVID and INTERESTING but not disturbing.

    I'm not WELL or RECOVERED yet but.... It is great to sleep better.

    I'm sleeping a really long time every night which makes me think that maybe my body is finally able to work on healing.

    Good luck.
     
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  9. perchance dreamer

    perchance dreamer Senior Member

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    That's great to hear, @CedarHome. Hope I get some sleep improvement, too!
     
  10. PatJ

    PatJ far and free I gaze

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    Sometimes LDN needs to be stopped for a few days, or a week, and then restarted to regain or maintain effectiveness. Some people also notice better results by pulsing it -- ie. take it one day, then skip the next.
     
  11. juniemarie

    juniemarie Senior Member

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    I took LDN for about 6 yrs. Started at 0.5 mg and increased by 0.5 each time, staying at a new dose for about a week.
    For the first month had a little sleep disturbance, increased vivid dreams, queasy stomach, but it was tolerable and short lived.....and extremely well worth it.

    For the most part my dose was 3.5 but occasionally dropped to 3
    The most noticeable, surprising and wonderful positive thing it did for me was to pretty much get rid of all my allergies.

    I dont have food allergies but severe allergies to all animals and moderate dust, pollen, grass.....the kind that give you sneezing fits and itchy eyes in spring/fall.

    In regard to animal allergy......I live with animals and always have and just put up with my allergic reactions. I lived on allergy meds, so when I realized LDN had resolved the allergic reaction to animals I was so surprised and over th moon with happiness.
    I never had an allergic reaction to any pollen or grass during the entire time I was on LDN

    I also think it really helped decrease my sensitivity to stuff like perfumes, cleaning supplies etc.

    Unfortunately last Xmas I caught the first flu I have had in many many years and it made me so sick I thought I would die. It was 6 mos. before I stopped having flu symptoms every few days.

    Turned my world and all my supplement protocols upside down. I stopped everything it had taken years to put in place including LDN.

    Just in the past 2 mos I’m beginning to be able to start re introducing the supplements but have not gotten up to doses I was on before that flu.......now the flu season is upon us again and I’m nervous.

    I have tried taking LDN several times at different doses over the past 8 mos but didnt feel it was doing anything.

    All of my allergies are back with a vengeance now

    The other thing that was important especially during first couple of yrs. on LDN was belonging to a LDN message board/forum
     
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  12. perchance dreamer

    perchance dreamer Senior Member

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    That's interesting, @PatJ. I find this same thing to be true for the sleep medicine I take. I take Belsomra one night and Trazodone the next because if I take either of these medicines every night they lose effectiveness.

    @junemarie, I'll look for an LDN forum. How awful that it was helping you so much, and then you had to stop. I hope your health gets better and that you get to a place where you can get good effects from LDN again.
     
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  13. Wishful

    Wishful Senior Member

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    Perchance dreamer used the phrase 'other immune modulators'. I asked for LDN because it was recommended as a safe immunosuppressant, and at the time I thought I had some rare form of chronic neuroinflammation. The fact that LDN only affected one symptom--perceived muscle aches--makes me believe that it's not working as an immune modulator, but rather as an endorphin-response modulator. As I understand it, the aches aren't real, as meaning muscle damage and signals travelling to the brain. Instead the problem is in the way the brain processes the signals from nerves and turns it into 'this muscle group hurts' perception. LDN does something with the endorphin processing to reduce the perception of aches. Acupuncture--which also involves triggering endorphin production--had the same effect on my muscle aches, which supports the endorphin-modulating hypothesis.

    Since some of you do seem to have immune systems affected by LDN, I guess it can have both types of effects. It's probably useful to know whether you have one, the other, or both types of responses working.
     

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