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Thread: neurogenic rosacea -- my battle.

  1. #41
    Senior Member laser_cat's Avatar
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    Quote Originally Posted by Andrew P View Post
    How would you explain the timed flare? What are your symptoms before a flare?

    What's your current medications?

    Just curious.

    Sent from my WAS-LX1A using Tapatalk
    Timed flare - doesn't matter where I am, what I've eaten, etc. I think in the evening, it's just when the body naturally relaxes to go to bed so there is some natural vasodilation that happens in everyone. Also pain can also "naturally" be more pronounced at night. I don't know if anyone really knows why exactly, but I'm guessing in my case the small fibers (nerves) are damaged, which control the blood vessel constriction / dilation, and so sometimes the switch between sympathetic nervous system (when blood vessels are constricted) and parasympathetic (when blood vessels are dilated) is more exaggerated. Sorry I am not more helpful.

    I can be totally fine right before a flare, eg evening. However, usually there is always some sort of tingling / baseline nerve activity going on -- I would be able to live with this though, it's the insane pounding, burning, etc that is hard to cope with and makes me want to stop whatever Im doing to soothe it.

    Current medications - a bit of a moving target. I take cymbalta 80 mg and mirtazapine 22.5 mg at night. IVIG every month (to see if there is inflammatory contribution, so far not helpful). Botox every 3 months. Trying to find an oral sodium channel blocker (or combo) that works for me, since I do respond to lidocaine iv, and (positive) response to lidocaine iv (for neuropathic pain) strongly predicts (positive) response to oral sodium channel blockers. So I'm hoping to have an anti-arrhythmia sodium channel blocker + an anti-seizure sodium channel blocker in the future, but am currently playing around with dose / different ones. If I can't find an oral sodium channel blocker(s) I can tolerate + that works for me, then maybe periodic lidocaine iv's.

    HTH
    Last edited by laser_cat; 6th December 2018 at 05:02 PM.

  2. #42
    Senior Member ladycappuccino's Avatar
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    Lizzy,
    You are my hero. It is absolutely wonderful to follow your journey!
    I will start with LDN. If it doesn't help, I will try Lyrica.
    I hope that LDN will assist me in my battle against Hashimoto and - as a nice side effect - will knock this neuropathic face pain down.

    Take care and keep us posted!
    Lena

  3. #43
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    Quote Originally Posted by laser_cat View Post
    Timed flare - doesn't matter where I am, what I've eaten, etc. I think in the evening, it's just when the body naturally relaxes to go to bed so there is some natural vasodilation that happens in everyone. Also pain can also "naturally" be more pronounced at night. I don't know if anyone really knows why exactly, but I'm guessing in my case the small fibers (nerves) are damaged, which control the blood vessel constriction / dilation, and so sometimes the switch between sympathetic nervous system (when blood vessels are constricted) and parasympathetic (when blood vessels are dilated) is more exaggerated. Sorry I am not more helpful.

    I can be totally fine right before a flare, eg evening. However, usually there is always some sort of tingling / baseline nerve activity going on -- I would be able to live with this though, it's the insane pounding, burning, etc that is hard to cope with and makes me want to stop whatever Im doing to soothe it.

    Current medications - a bit of a moving target. I take cymbalta 80 mg and mirtazapine 22.5 mg at night. IVIG every month (to see if there is inflammatory contribution, so far not helpful). Botox every 3 months. Trying to find an oral sodium channel blocker (or combo) that works for me, since I do respond to lidocaine iv, and (positive) response to lidocaine iv (for neuropathic pain) strongly predicts (positive) response to oral sodium channel blockers. So I'm hoping to have an anti-arrhythmia sodium channel blocker + an anti-seizure sodium channel blocker in the future, but am currently playing around with dose / different ones. If I can't find an oral sodium channel blocker(s) I can tolerate + that works for me, then maybe periodic lidocaine iv's.

    HTH
    How do you react to heat, wind, stress, arousal etc? Also, can you have that trobbing even if you´re not that sigficnially red?

  4. #44
    Senior Member laser_cat's Avatar
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    Default update: mexiletine, opioids, etc.

    Been a while so thought I'd come back and share.

    *I've been ramping up very slowly on mexiletine, incrementing about 150 mg / mo. Now at 600 mg. This has been helpful for night flares and afternoon flares (maybe 70% with botox). It works by stabilizing the sensory nerve and I think minimizing neurogenic inflammation by preventing the spread of the vasodilation signal between local nerves. However, it's been a tricky drug to get right. If I ramp up too fast - I get intense stabbing pain in my face. Other times I get too cold (doc said a result of shutting down the thinnest heat-sensing nerve fibers, maybe leaving other populations of nerves (cold-sensing) to feel over-emphasized). None of my docs has an answer as to the stabbing pain though - I emailed a couple neurologists in small fiber neurology and they basically said it is hard to predict how patients will respond to which drugs, that in terms of anatomy, neurology is still in the 1800's and there are lots of unknowns. I've discovered that adding in vasodilators (anything - like magnesium, coq10, NAC, b12..) really help with the leftover stabbing pain though (I couldn't tolerate them without botox and/or mexiletine to already stabilize the sensory nerves though) I'm not thrilled about my patchwork solution but I think I could make it work if I had to (cymbalta, botox, mexiletine, low dose zonisamide, topical amitriptyline for ears, whatever vasodilators I need) - ie, "enough" improvement.

    The mexiletine also helps with social flaring although not as much as a beta blocker. My understanding is that it also stabilizes the sympathetic post-ganglion nerves, in addition to the sensory nerves. The sensory nerve signal goes through the sympathetic ganglion (stellate ganglion) and down sympathetic post-ganglion nerves to evoke a blood vessel response, in addition to sensory nerve - based neurogenic inflammation (my understanding). 1) Mexiletine could target sodium channels on sympathetic post-ganglion nerves themselves (the nerves that come out of the stellate ganglion), and 2) Prevent signals from even going into the sympathetic ganglion in the first place. So I think over time, mexiletine could help with exaggerated sympathetic outflow.

    https://www.google.com/imgres?imgurl...act=mrc&uact=8 (for illustration)

    I should say initially the mexiletine was vasodilating, but eventually it felt like it was helping some of the swelling, noticed it helped with inner nose burning, and eventually it felt like it wasn't vasodilating at all + I noticed I was going without nose flares, cooling me down, etc.

    *The best thing for my "time of day" flares has still been opioids (note: partial opioids like buprenorphine have a ceiling effect; one doctor even told me that low dose buprenorphine would have less cognitive side effects than gabapentin or topamax); I'm interested in trying a compounded topical version to limit systemic side effects. I've been reading a lot how to block the peripheral neurogenic inflammation process that is likely going amok in some rosacea patients. I think antihistamines, aprepitant (substance P blocker), Aimovig (anti-CGRP med, didn't really work out for me), topical baclofen/clonazepam (clonazepam mouthwash is used for burning mouth syndrome, and my pain doc thinks that GABA can calm peripheral nerves as well as working in the brain), local anesthetics (mexiletine), botox, possibly topical ketamine (made me worse) or amitriptyline, may all be non-opioid ways to help with the neurogenic inflammation but opioids have a pretty dramatic effect for me.

    https://medium.com/dr-ming-kao/small...y-151eab342652 has a good breakdown of neurogenic inflammation and possible treatment targets.

    Opioids don't help with the social flaring for me.

    "Topical opioids can target the opioid receptors present on nociceptive fibers and mast cells. Binding of opioid receptors
    can inhibit the release of the calcitonin gene-related peptide (CGRP) and substance P from nerves, thereby preventing the feedforward mechanism of pain that typically results in sensitization at the site of injury (primary hyperalgesia)."

    *My (very good) derm is recommending that I retry IVIG - for longer time frame and double dosage. He says, let's go with the evidence, which says you have nerve dropout (my blood tests and all other testing are normal), and when there's nerve dropout there is likely inflammatory processes trying to grow them back in a counter-productive way, or in an ongoing, painful way. He has written:

    "likely common pathway is terminal nerve twig dropout, which may be due to proximal inflammation, local factors, etc unknown driving factor. Nerve growth factors are likely contributing to symptoms."

    There are some anti-NGF meds in development. NGF binds to the sensory nerves, + mast cells, triggering neurogenic inflammation. Nerve growth factor really likes to sensitize TRPV1 (heat sensing) channels on sensory nerves (though it also sensitizes sodium channels and other channels). I think my doctor's theory is right. I also think that might be why vitamin D - which promotes NGF - might cause many to flare. (It causes me to massively flare, not just vasodilation but like the nerves are actually more susceptible to firing). The vit D thing is just a random thought though (I also think that's why LLLT can trigger some people - for me it angers nerves/flushing the next couple days - it shouldn't heat the skin directly, but it does create more cytokines and growth factors including nerve growth factor at red / infra wavelengths like a "pseudo-wound".. supposedly while it does things like create more collagen, try to regenerate nerves, etc)

    Circling back around again to the peripheral GABA I mentioned above: Here's an explanation of how baclofen and peripheral GABA can help with sensitized TRPV1, including NGF-sensitized TRPV1: https://www.painresearchforum.org/ne...persensitivity I know lidocaine and its derivatives actually activate TRPV1 channels, although in theory over enough time they will shut down nerve signals to CNS so it doesn't matter. But I think this is interesting, maybe baclofen/topical clonazepam can be a good complementary treatment to lidocaine / mexiletine etc. I know some derms prefer topical baclofen for vulvodynia eg (over topical lido) bc it does not have the potential to burn like topical lidocaine can. Another more in depth link on how GABA can ameliorate overly sensitized TRPV1 https://www.cell.com/cell/pdf/S0092-8674(15)00065-3.pdf.


    I also notice that one thing the mexiletine (+ botox etc) is not really helping me with, is post-exercise flaring. I'm talking about exercise that causes me to pant - the next day I have increased baseline burning + afternoon flare. It's possible higher dose could help. I am curious if IVIG or baclofen could help with this issue (if inflammation or NGF is irritating the nerves post-exertion in recovery).

    *Still waiting for my insurance to cover whole exome sequencing - which would be analyzed by my Genetics hospital dept. I applied to Undiagnosed Disease Network (in US) and they sent me there as a first step (to spread out the cost since they are research-based). I don't know of anyone who went to UDN and got results - but it's worth a shot. My pain doc said I should definitely qualify with this, even though I have a diagnosis - since it is rare, not understood, and symptoms-based diagnosis likely to be an umbrella of patient pathophysiologies.

    Edited to include buprenorphine night flaring (basically 0..) vs "regular" night flaring.
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    Last edited by laser_cat; 3rd February 2020 at 07:29 PM.

  5. #45
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    Quote Originally Posted by laser_cat View Post
    Been a while so thought I'd come back and share.

    *I've been ramping up very slowly on mexiletine, incrementing about 150 mg / mo. Now at 600 mg. This has been helpful for night flares and afternoon flares (maybe 70% with botox). It works by stabilizing the sensory nerve and I think minimizing neurogenic inflammation by preventing the spread of the vasodilation signal between local nerves. However, it's been a tricky drug to get right. If I ramp up too fast - I get intense stabbing pain in my face. Other times I get too cold (doc said a result of shutting down the thinnest heat-sensing nerve fibers, maybe leaving other populations of nerves (cold-sensing) to feel over-emphasized). None of my docs has an answer as to the stabbing pain though - I've even emailed a couple neurologists in small fiber neurology and they basically said it is hard to predict how patients will respond to which drugs, that in terms of anatomy, neurology is still in the 1800's and there are lots of unknowns. I've discovered that adding amlodipine (L type calcium channel blocker) back in really helps with the stabbing pain though. So my guess is mexiletine might be increasing intracellular calcium somehow in the nerves, which can be blunted with the amlodipine. I'm not thrilled about this patchwork solution but I think I could make it work if I had to (cymbalta, botox, mexiletine, amlodipine, 100 mg zonisamide which helps ears specifically).

    The mexiletine also helps with social flaring although not as much as a beta blocker. My understanding is that it also stabilizes the sympathetic nerves, in addition to the sensory nerves.

    I should say initially the mexiletine was vasodilating, but eventually it felt like it was helping some of the swelling, noticed it helped with inner nose burning, and eventually it felt like it wasn't vasodilating at all + I noticed I was going without nose flares.

    *The best thing for my "time of day" flares has still been opioids; I'm interested in trying a compounded version to limit systemic side effects. I've been reading a lot how to block the peripheral neurogenic inflammation process that is likely going amok in some rosacea patients. I think antihistamines, apprepitant (substance P blocker), Aimovig (that didn't really work out for me), topical baclofen/clonazepam (clonazepam mouthwash is used for burning mouth syndrome, and my pain doc thinks that GABA can calm peripheral nerves as well as working in the brain), local anesthetics (mexiletine), botox, possibly topical ketamine (made me worse) or amitriptyline, may all be ways to help with the neurogenic inflammation but opioids have a pretty dramatic effect for me.

    Opioids don't help with the social flaring.

    "Topical opioids can target the opioid receptors present on nociceptive fibers and mast cells. Binding of opioid receptors
    can inhibit the release of the calcitonin gene-related peptide (CGRP) and substance P from nerves, thereby preventing the feedforward mechanism of pain that typically results in sensitization at the site of injury (primary hyperalgesia)."

    *My (very good) derm is recommending that I retry IVIG - for longer time frame and double dosage. He says, let's go with the evidence, which says you have nerve dropout, and when there's nerve dropout there is likely inflammatory processes trying to grow them back in a counter-productive way, or in an ongoing, painful way. He has written:

    "likely common pathway is terminal nerve twig dropout, which may be due to proximal inflammation, local factors, etc unknown driving factor. Nerve growth factors are likely contributing to symptoms."

    There are some anti-NGF meds in development. NGF binds to the sensory nerves, + mast cells, triggering neurogenic inflammation. I think my doctor's theory is right. I also think that might be why vitamin D - which promotes NGF - might cause many to flare. (It causes me to massively flare). The vit D thing is just a random thought Anyway, local anesthetics inhibit activity of NGF's binding site, which is interesting. IVIG should have some NGF antibodies as well.

    I also notice that one thing the mexiletine (+ botox, + amlodipine) is not really helping me with, is post-exercise flaring. I'm talking about exercise that causes me to pant - the next day I have increased baseline burning + afternoon flare. It's possible higher dose could help. I am curious if IVIG could help with this issue (if inflammation or NGF is irritating the nerves post-exertion in recovery).

    *Still waiting for my insurance to cover whole exome seq - which would be analyzed by my Genetics hospital dept. I applied to Undiagnosed Disease Network (in US) and they sent me there as a first step (to spread out the cost since they are research-based). I don't know of anyone who went to UDN and got results - but it's worth a shot.
    I'm about to start Mexeletine, so interesting to read your experience with this. How have you found the gastro effects of mexeletine, as this often seems to be the reason people stop the drug, rather than necessarily that it doesn't help with flushing.

    For post-exercise or hot-day flushes, I've found gabapentin quite helpful - it's a lot harder to have a really severe flush when taking it I find.

  6. #46
    Senior Member laser_cat's Avatar
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    Quote Originally Posted by antwantsclear View Post
    I'm about to start Mexeletine, so interesting to read your experience with this. How have you found the gastro effects of mexeletine, as this often seems to be the reason people stop the drug, rather than necessarily that it doesn't help with flushing.

    For post-exercise or hot-day flushes, I've found gabapentin quite helpful - it's a lot harder to have a really severe flush when taking it I find.
    That's great you find gabapentin helpful. I might retry it. I have tried it in the past and it caused increased blood pooling for me. But possibly I could handle it better now. Even though I didn't respond, my sense is that it does help most people with neuro rosacea.

    I didn't really have any bad side effects from mex. - which I attribute to my super slow rampup. Don't take a pill right before laying down though - that would give nasty heartburn! (I wait an hr after my last pill)

    Good luck.

  7. #47
    Senior Member laser_cat's Avatar
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    Quote Originally Posted by r0bbs View Post
    How do you react to heat, wind, stress, arousal etc? Also, can you have that trobbing even if you´re not that sigficnially red?
    I flare (a pulsing style flushing, swelling, burning) or if I'm already flaring have increased flaring. I think my sensory nerves are overly activated (heat, "time of day" flaring) as well as sympathetic nerves (talking to anyone for example, thinking critically instead of passively reading).
    For wind I don't flare immediately, but will flare on rebound as I warm up.
    If I am throbbing, I am sure to be red or about to get red. HTH

  8. #48
    Senior Member laser_cat's Avatar
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    Default Anti-inflammatory / immunosuppressive route

    Had an interesting derm appt, would like to share. (some of this is repetitive)

    I asked: If SFN is driving my bad face, why don't my symptoms start/be more severe in the feet?

    He said (summarized): Unknown, but in diabetic neuropathy - the most common type of neuropathy - the feet can get numb, but the itch can be everywhere/generalized. So where the itch small fiber nerves are affected, is actually different from where the small fiber pain nerves are affected. And so the same cause of neuropathy can have anatomically different sensations at different sites. The specific families of nerves have yet to be mapped. But I can see pain (being length dependent), itch (being driven by other factors not yet understood), and the burning heat sensation you feel in your face each being mediated by different nerve subtypes. I see sodium channel blockers typically working much better for feet than faces, but right now that's a "black box." [note: Na channel blockers work much better for my ears than face]

    Since I've tried all available neuropathic and vasoactive drugs, and nothing "quite" helps (if it helps one aspect, but makes another worse..), he thinks a chance we're not addressing the root of the problem (for me). Which he tends to think would be "inflammation" (details unknown) irritating the nerves, causing the small fiber sensory nerves to dump out their "gunk" (neurogenic inflammation like vasodilating substance p). The "inflammation" would also be preventing the small fibers from growing back. The hope, is that once the inflammation is removed, the small fibers can grow back.

    He says that neuros like to use IVIG (anti-inflammatory, non-immunosuppressive) and steroids. He does not like steroids for me because I am so vasodilated + steroids can cause flushing, making it hard to tell if there is a positive difference (and side effects, sustainability). Neuro's also use azathioprine and cellcept (immunosuppressives), but not so much the methotrexate (immunosuppresive) often rx'ed in dermatology.

    I asked: Why don't I just burn with the SFN, why is there a blood pooling component?

    his response: Small fiber (sympathetic) nerves can't adequately control blood vessels, as evidenced by tilt table test (blood pressure drop + blood pooling in your hands/feet).

    (adding to his response): There are small fibers with various purposes: some to control sweat, some to control vasomotor function (as he referenced), and some to sense heat/pain/inflammation.

    I asked: Can you explain to me again why you don't think a biopsy of face would be helpful? I understand there is no normative data for nerves in the face. What if you looked for connective tissue problems, mast cells, immune cells?

    his response: I have taken biopsies in patients like you and I haven't seen say, immune cells clumped around the nerves, or anything unusual like you mentioned. That would be interesting if I did, though. The biopsies I have all taken have all shown the same thing - perivascular inflammation - and have not been helpful in treatment strategy. The inflammation can be anywhere along the nerve pathway, too. For example I biopsied a patient with erythromelalgia on her feet where her pain was. No real inflammation, just neuropathy. I biopsied higher up in the sural nerve - lots of inflammation. I started her on steroids and her symptoms resolved.

    *Starting Imuran (azathioprine), still fighting for higher dosed IVIG
    Last edited by laser_cat; 20th February 2020 at 05:25 PM.

  9. #49
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    Anyone tried cod oil for this ?

  10. #50
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    Quote Originally Posted by laser_cat View Post
    Had an interesting derm appt, would like to share. (some of this is repetitive)

    I asked: If SFN is driving my bad face, why don't my symptoms start/be more severe in the feet?

    He said (summarized): Unknown, but in diabetic neuropathy - the most common type of neuropathy - the feet can get numb, but the itch can be everywhere/generalized. So where the itch small fiber nerves are affected, is actually different from where the small fiber pain nerves are affected. And so the same cause of neuropathy can have anatomically different sensations at different sites. The specific families of nerves have yet to be mapped. But I can see pain (being length dependent), itch (being driven by other factors not yet understood), and the burning heat sensation you feel in your face each being mediated by different nerve subtypes. I see sodium channel blockers typically working much better for feet than faces, but right now that's a "black box." [note: Na channel blockers work much better for my ears than face]

    Since I've tried all available neuropathic and vasoactive drugs, and nothing "quite" helps (if it helps one aspect, but makes another worse..), he thinks a chance we're not addressing the root of the problem (for me). Which he tends to think would be "inflammation" (details unknown) irritating the nerves, causing the small fiber sensory nerves to dump out their "gunk" (neurogenic inflammation like vasodilating substance p). The "inflammation" would also be preventing the small fibers from growing back. The hope, is that once the inflammation is removed, the small fibers can grow back.

    He says that neuros like to use IVIG and steroids. He does not like steroids for me because I am so vasodilated + steroids can cause flushing, making it hard to tell if there is a positive difference (and side effects, sustainability). Neuro's also use azathioprine and cellcept, but not so much the methotrexate often rx'ed in dermatology.

    I also asked: Why don't I just burn with the SFN, why is there a blood pooling component?

    his response: Small fiber (sympathetic) nerves can't adequately control blood vessels, as evidenced by tilt table test (blood pressure drop + blood pooling in your hands/feet).

    (adding to his response): There are small fibers with various purposes: some to control sweat, some to control vasomotor function (as he referenced), and some to sense heat/pain/inflammation.

    *Starting Imuran (azathioprine), still fighting for higher dosed IVIG
    Have you discussed any alternative sodium channel blockers to mexiletine? You said you got some benefit from this I think. In the UK mexiletine is very hard to obtain so interested what other options might be seen as comparable.

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