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Thread: My Low Dose Naltrexone Journey (so far)

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    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..

    Best
    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?

    Thanks,
    Angela

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    Senior Member laser_cat's Avatar
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    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?

    Thanks,
    Angela
    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

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    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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    Quote Originally Posted by Momof View Post
    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.
    Momof, thank you for any advice or tips that you might have. I have been taking clonidine .2 mg three times a day for several months along with propranolol 40 mg three times a day. Two nights ago I decreased my LDN to 1.5 mg and today I had 20 minutes where I was in my house and did not have to use my handheld fan or spray bottle. Thatís a big deal because I usually have to use it 24 seven. Iím hoping to get to that sweet spot that I was at before I increased it up to 3 mg. I am also taking CBD capsules with a little bit of help. How many milligrams is five ML and 10 ML? Iím just curious of how much LDN you were taking. My condition starts with heat or touch then goes into flushing swelling and pain. Many times itís seven hours of horrible flushing burning swelling pain as if acid is being poured on my face. I liked that you said your face seems cooler and not burning as much. That is what Iím looking for. How are you taking amitriptyline and how much? Any side effects from it? Weightgain?

    I went to my regular doctor yesterday to go over bloodwork because Iím 52 and postmenopausal so I was checking my hormone levels etc. my TSH was 6 1/2 which it is never ever been. They increased my thyroid medication so hopefully that will bring it down but the main reason I bring that up is because I think that thyroid problems could also exacerbate the condition that I have. Maybe hormonal inbalance also can affect the condition because my progesterone and estradiol were very estrogen dominant so we adjusted those medications too. Hopefully that will help.

    Thanks again take care.
    Angela

  5. #465
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    Quote Originally Posted by Momof View Post
    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.
    That's great - I'm glad the LDN and amit. and clonidine are helping you.

    FWIW I was on plaquenil for 1-2 yrs and had no side effects (if anything, it helped with occasional joint pain and energy). I got regular vision checks and my optometrist said that they would catch anything bad before it can really be bad (something like that). [Unfortunately the plaq. didn't help me.] I know we are all different in terms of what drugs/side effects we tolerate or are willing to tolerate, but just passing that along.

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    Quote Originally Posted by laser_cat View Post
    That's great - I'm glad the LDN and amit. and clonidine are helping you.

    FWIW I was on plaquenil for 1-2 yrs and had no side effects (if anything, it helped with occasional joint pain and energy). I got regular vision checks and my optometrist said that they would catch anything bad before it can really be bad (something like that). [Unfortunately the plaq. didn't help me.] I know we are all different in terms of what drugs/side effects we tolerate or are willing to tolerate, but just passing that along.
    Lizzy, I have been meaning to get back to you......I started the supplement Palmitoylethanolamide and so far no problems with it. I also decreased my LDN down to 1.5 mg about 5 days ago and I have to say that I notice a bit of a change in the heat sensitivity indoors at least. Iím not having to run around with my handheld fan and spray bottle as much even in my 69 degrees Fahrenheit. I used to have to take it everywhere and gave it on at all times. I still get warmer in the evenings and flare a bit but Iím hopeful that the lower dose could help me. I think the next medicine I will add is gabapentin because Antwantsclear has said that it has helped with heat sensitivity for him.

    I am wondering if I truly have neurogenic rosacea or do I have subtype 1 or for Brady Barrows phenotype 1 I never have face pain first just horrible heat sensitivity then I get flushing and swelling and horrible pain upon a flare. My nose, chin and forehead are not affected but I can get an all over flush that includes my eyelids but never my nose really. I donít get those telang. Marks really either so Iím not sure. I will say that rarely I will get bumps either under the skin on the cheeks or again rarely broke open kind of like a pustule with clear fluid.

    I hear a lot of others talk about nerve pain. Again, I have horrible acid like pain but only after heat, flush, flare and swell and the skin gets shiny. Iíve heard others describe that shininess too.

    Just an observation I guess. I always feel that if I could conquer the heat problem then I could really keep this under control.

    Take Care
    Angela

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    Quote Originally Posted by Ange4 View Post
    Lizzy, I have been meaning to get back to you......I started the supplement Palmitoylethanolamide and so far no problems with it. I also decreased my LDN down to 1.5 mg about 5 days ago and I have to say that I notice a bit of a change in the heat sensitivity indoors at least. I’m not having to run around with my handheld fan and spray bottle as much even in my 69 degrees Fahrenheit. I used to have to take it everywhere and gave it on at all times. I still get warmer in the evenings and flare a bit but I’m hopeful that the lower dose could help me. I think the next medicine I will add is gabapentin because Antwantsclear has said that it has helped with heat sensitivity for him.

    I am wondering if I truly have neurogenic rosacea or do I have subtype 1 or for Brady Barrows phenotype 1 I never have face pain first just horrible heat sensitivity then I get flushing and swelling and horrible pain upon a flare. My nose, chin and forehead are not affected but I can get an all over flush that includes my eyelids but never my nose really. I don’t get those telang. Marks really either so I’m not sure. I will say that rarely I will get bumps either under the skin on the cheeks or again rarely broke open kind of like a pustule with clear fluid.

    I hear a lot of others talk about nerve pain. Again, I have horrible acid like pain but only after heat, flush, flare and swell and the skin gets shiny. I’ve heard others describe that shininess too.

    Just an observation I guess. I always feel that if I could conquer the heat problem then I could really keep this under control.

    Take Care
    Angela
    I hope it goes well with the gabapentin, + that's great you were able to find a good dose again with the LDN.

    Everyone is a little different I think but for me + I think others, we've learned about our condition mostly by what things we do respond to and do not respond to. Hopefully if you have a few data points in neuroleptic agents, and a few data points in vascular agents, and a few in anti-inflammatories you can maybe piece together what is going on for you. Unfortunately I have not found any single thing to JUST help + that's enough, period. I see myself being on a combination of neuroleptic agents.

    I get the shiny skin as well during flaring

    I am not sure how long it takes for a heat pain signal to register into someone's consciousness vs. how long it takes to locally induce a neurogenic inflammation response vs. how long it takes for the nerve signal to go through the sympathetic ganglion and back around for a norepinephrine-based blood vessel response. I think a lot of erythromelalgia folk can sympathize with feeling hot, flushing, burning in similar order. I'll ask my derm if I remember next time I see him about that. Over the yrs my symptoms have evolved a bit, moving from heat burning only to including cold pain as well, to feeling like I have foreign objects on one side of my face, for example. I think clonidine was the start of my cold pain + nose flaring - so that drug is a sore spot for me heh! Oh well. From the start though it always felt like my face would take forever to drain (esp. if I did not actively cool) - like my nerves just kept firing on and on and on once they started.

    Good luck on the gabapentin - but don't get discouraged if it doesn't work, there are other drugs out there. I forgot if you trialled antihistamines / high dose antihistamines? I trialled 2x zyrtec + 2x allegra + gastrocrom for a while - with no effect but i think that did provide my docs with information that it wasn't mast cell or histamine-based.

    Stay cool and take care
    Last edited by laser_cat; 27th August 2019 at 04:08 AM.

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    [QUOTE=laser_cat;350630]I hope it goes well with the gabapentin, + that's great you were able to find a good dose again with the LDN.

    Everyone is a little different I think but for me + I think others, we've learned about our condition mostly by what things we do respond to and do not respond to. Hopefully if you have a few data points in neuroleptic agents, and a few data points in vascular agents, and a few in anti-inflammatories you can maybe piece together what is going on for you. Unfortunately I have not found any single thing to JUST help + that's enough, period. I see myself being on a combination of neuroleptic agents.

    I get the shiny skin as well during flaring

    I am not sure how long it takes for a heat pain signal to register into someone's consciousness vs. how long it takes to locally induce a neurogenic inflammation response vs. how long it takes for the nerve signal to go through the sympathetic ganglion and back around for a norepinephrine-based blood vessel response. I think a lot of erythromelalgia folk can sympathize with feeling hot, flushing, burning in similar order. I'll ask my derm if I remember next time I see him about that. Over the yrs my symptoms have evolved a bit, moving from heat burning only to including cold pain as well, to feeling like I have foreign objects on one side of my face, for example. I think clonidine was the start of my cold pain + nose flaring - so that drug is a sore spot for me heh! Oh well. From the start though it always felt like my face would take forever to drain (esp. if I did not actively cool) - like my nerves just kept firing on and on and on once they started.

    Good luck on the gabapentin - but don't get discouraged if it doesn't work, there are other drugs out there. I forgot if you trialled antihistamines / high dose antihistamines? I trialled 2x zyrtec + 2x allegra + gastrocrom for a while - with no effect but i think that did provide my docs with information that it wasn't mast cell or histamine-based.

    Stay cool and take care[/QUOTE

    Lizzy, so I did more research on the gabapentin and found several people out there have horrible burning reactions that sometimes donít go away. I canít take even the smallest chance on that right now so I may instead start Plaquenil.

    I was wondering how did Palmitoylethanolamide help you? Did it help with heat sensitivity? How long before you noticed anything?

    One more thing..... did the stellgate ganglion thing work at all? Do you still do the lidocaine IVs? Are they helpful? How long do the benefits last.

    Thanks.
    Angela

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    [QUOTE=Ange4;350647]
    Quote Originally Posted by laser_cat View Post
    I hope it goes well with the gabapentin, + that's great you were able to find a good dose again with the LDN.

    Everyone is a little different I think but for me + I think others, we've learned about our condition mostly by what things we do respond to and do not respond to. Hopefully if you have a few data points in neuroleptic agents, and a few data points in vascular agents, and a few in anti-inflammatories you can maybe piece together what is going on for you. Unfortunately I have not found any single thing to JUST help + that's enough, period. I see myself being on a combination of neuroleptic agents.

    I get the shiny skin as well during flaring

    I am not sure how long it takes for a heat pain signal to register into someone's consciousness vs. how long it takes to locally induce a neurogenic inflammation response vs. how long it takes for the nerve signal to go through the sympathetic ganglion and back around for a norepinephrine-based blood vessel response. I think a lot of erythromelalgia folk can sympathize with feeling hot, flushing, burning in similar order. I'll ask my derm if I remember next time I see him about that. Over the yrs my symptoms have evolved a bit, moving from heat burning only to including cold pain as well, to feeling like I have foreign objects on one side of my face, for example. I think clonidine was the start of my cold pain + nose flaring - so that drug is a sore spot for me heh! Oh well. From the start though it always felt like my face would take forever to drain (esp. if I did not actively cool) - like my nerves just kept firing on and on and on once they started.

    Good luck on the gabapentin - but don't get discouraged if it doesn't work, there are other drugs out there. I forgot if you trialled antihistamines / high dose antihistamines? I trialled 2x zyrtec + 2x allegra + gastrocrom for a while - with no effect but i think that did provide my docs with information that it wasn't mast cell or histamine-based.

    Stay cool and take care[/QUOTE

    Lizzy, so I did more research on the gabapentin and found several people out there have horrible burning reactions that sometimes donít go away. I canít take even the smallest chance on that right now so I may instead start Plaquenil.

    I was wondering how did Palmitoylethanolamide help you? Did it help with heat sensitivity? How long before you noticed anything?

    One more thing..... did the stellgate ganglion thing work at all? Do you still do the lidocaine IVs? Are they helpful? How long do the benefits last.

    Thanks.
    Angela

    Lizzy, somehow the reply with quote messed up and Iíve been waiting for you to reply. Iím resending this to see if it goes through properly. Please read through this because thereís another message above this most recent post that I had questions for you. Thank you hope all is well.
    Angela

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    Senior Member laser_cat's Avatar
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    [quote=Ange4;350719]
    Quote Originally Posted by Ange4 View Post


    Lizzy, somehow the reply with quote messed up and I’ve been waiting for you to reply. I’m resending this to see if it goes through properly. Please read through this because there’s another message above this most recent post that I had questions for you. Thank you hope all is well.
    Angela
    Hi Angela - Sorry about that!

    The PEA helps me with baseline burning only like 10%. Certainly within 2 wks.

    I did 3 SG blocks, and none of them were helpful beyond maybe 8 hrs (and they only do one side at a time). The last one I had a small amount of steroid (in addition to local anesthetic) put into the nerve bundle - the hope was that it would decrease any inflammation in the SG and prolong the block. But, that too wasn't helpful. The night of that block, I remember I couldn't wait to put on the buprenorphine patch that I was going to trial at the time, because I had night flaring all the same. I think pain docs recommend it maybe because it is an "easy" thing to recommend. I believe at least in my case it did not target my out-of-control neurogenic inflammation. However, I am glad I tried it.

    I stopped the lidocaine iv's because I was focusing on moving up slowly on mexiletine (which is oral lidocaine) over the summer. While also on mexiletine, the lidocaine iv felt fantastic during the hr but then ... teetered on "too cold", causing me to burn. My derm hypothesized that it was shutting down one population of nerves (heat sensing) but not the cold sensing (something like that). I never had this experience with lido iv when I wasn't on mexiletine. My gut said it would be best if I tried to get a daily, consistent dose of "lidocaine' in my system so I now take 600 mg mexiletine daily. Honestly, I find mexiletine a very tricky drug ... too much / too fast and it feels like it is activating all the nerves in my face. But I feel for me as a whole, it gives me less burning (assuming slow rampup), so I continue to take it: helps w/ night/afternoon burning + flushing, social burning/flushing, heat - rare for something to impact all 3.

    When I wasn't on mexiletine, lidocaine iv's benefits for me would last 3 days. Sometimes people with facial symptoms get no benefit, sometimes it lasts ~6wks.

    Something interesting I tried a while back was compounded topical benzocaine 20% / lidocaine 8% / tetracaine 4%. I put a little next to my ears and it diffuses across my cheeks like a wave of coolness. However, it only lasts 3 hrs max. They use it to take off whole layers of skin in dermatology world, so it's pretty strong numbing agent (unlike OTC topical lidocaine). I use it when things are bad.

    Antidepressants (cymbalta) have been the best oral drug for my heat tolerance but I understand everyone is different. I do understand anxiety how something might make you permanently worse <3

    SOrry again about the delayed response! Good luck on the plaquenil!
    Last edited by laser_cat; 2nd September 2019 at 10:09 PM.

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