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Thread: My Low Dose Naltrexone Journey (so far)

  1. #461
    Senior Member
    Join Date
    Apr 2019
    Country: United States


    Quote Originally Posted by laser_cat View Post
    I'm so sorry you are struggling, Angela. I don't think the PEA supp will make or break anything for you unfortunately if the CBD did not help at all. They are comparable in mechanism. The PEA helps me minimally but enough where I notice if I go without.

    One thing maybe - if you can't find your sweet spot again w/ LDN, is to come off LDN and slowly titrate back up.

    I did go back and try the LDN again myself but after a few days even 0.5 mg made me hotter. arg.

    I hope you keep trying things. Man, that heat sounds brutal. Though I'm optimistic you'll find your working LDN dose again at some pt..

    Lizzy, thank you for that suggestion of the LDN. That sounds like a plan if I canít find relief going down to the 1.5 mg.

    Do you still do the synthetic THC? Is it helpful and if so how is it helpful?


  2. #462
    Senior Member laser_cat's Avatar
    Join Date
    Jan 2017
    Country: United States


    Quote Originally Posted by Ange4 View Post
    Lizzy, thank you for that suggestion of the LDN. That sounds like a plan if I can’t find relief going down to the 1.5 mg.

    Do you still do the synthetic THC? Is it helpful and if so how is it helpful?

    Hey Angela,

    I'm not taking THC currently (when I did, it actually wasn't synthetic .. but I don't think that matters.) I am not taking it because of cognitive side effects.

    When I took it, I do think it was helpful for heat pain + cold pain but not with my "time of day" flares. I am not sure about flushing (honestly, I'm not looking in mirrors all that often, lol). However, it is pretty vasodilatory and will likely cause you to flare initially. If you try, I would titrate up super slowly. Like 1 mg THC at night or something. My derm told me to try 5-10 mg THC at night for 3 wks - that that would be a sufficient trial. I did 5 mg and in hindsight - should have just inched up super slowly. I do not recommend taking 5 mg THC at once unless you are committed to 3 wks (eventually, i did seem to acclimate to the vasodilatory effects of the THC so i didn't flare when taking it). I do think in any case a 1 time trial would not be sufficient. Like any anti-seizure med it takes time for its effect.

    I do still think that gabapentin (or lyrica..), cymbalta (or amitriptyline or effexor ..) are the big guns in terms of neurogenic rosacea. Gabapentin is a safe drug and sometimes even helps with flaring itself in addition to pain. I could not tolerate it because it was too vasodilatory (I might be extreme though .. i cannot even tolerate any LDN!). Antwantsclear I think takes it with some success. Cymbalta helps me in between the "time of day" flares. Without it I was pretty much bed-bound (bc anything, even little movements just made things worse) It helps with pain some and provides some vasoconstriction for me.

    I'll be keeping my fingers crossed for you. I sure wish I had the answer for all this! x

  3. #463
    Junior Member
    Join Date
    Nov 2018

    Default Amitriptyline and LDN

    Hi all,
    Just to come in on the amitriptyline conversation. I am still taking 10mg amitriptyline and am up to 5ml of LDN. The amitriptyline has, I think, helped with calming down the excited nerves in my face. This is what low dose amitriptyline is used for i.e. neuropathic pain. I believe the LDN is also doing this in the background by slowly calming my nervous system and inhibiting activation of the nerveís sensory fibres.
    My doctor suggested gradually increasing up as far as 10ml if needed so that is what I am doing.
    My nerve pain has decreased dramatically and my face is cool most of the time. That burning pain is gone. I am still, however, swollen ( residual fluid I assume) and every few days I can feel my blood vessels inflamed and my face gets a little more swollen.

    So the amitriptyline and LDN definitely help with the nerve pain but not so much with the expansion of the blood vessels when they decide to expand for whatever reason.
    I am still on a very low dose of Clonidine in the morning but I donít think it does a lot. It did help with the overwhelming flushing that I had a few months ago ( the type that just washes over me and my face would just swell hugely). 0.5 micrograms x3 times daily stopped that so maybe try that Angela?

    I am going to continue increasing my LDN, possibly up to 10ml, until I knock this nerve pain out and then I need to think about something to stop the blood vessels from swelling. I believe plaquenil is great for that but Iím saving that as my ďmagic bulletĒ because of the potential side effects with vision.
    I should add that I tried Lyrica for 2 weeks and did not like it all-I couldnít sleep and my eyes were twitching, either from the lack of sleep or the drug itself.

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