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Neurogenic rosacea treatment (for stinging)? - trying not to worsen my ocular rosacea

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  • #16
    Originally posted by Mistica View Post
    I had my appointment with the immunologist today. He specialises in mast cell activation syndrome.

    I didn't really learn much more than I already know about my own particular syndrome.
    I have a bunch of tests to do.

    That aside, he had a spray that he uses on flushers... I was too scared to put it on my face, so he sprayed some on my hands and neck and it reduced the blotchiness.
    He said it contained menthol which I could smell.
    I told him ZZ cream is very popular with rosaceans and flushers and I find it helpful as well, although it does not fully shut down my type of flushing.
    So he googled the cream and looked at the ingredients and he confirmed my suspicions that the main benefit we get from this cream is likely due to nerve function modulation.
    Of course he couldn't comment on the secret ingredients, but it was interesting hearing what he had to say.

    I have always said ZZ cream targets more than demodex and people shouldn't assume they have demodex just because the cream helps them. It confuses the picture and doesn't enable analytical thinking. Rosacea, rosacea/flushing and flushing is so complex.

    The specialist also mentioned possible use of mast cell stabilisers or LDN.
    I didn't want to try those.
    He uses dietary approaches as well.

    I agree with Antwantsclear that you have to tackle these beasts from all directions.
    Studies independent of rosacea demonstrate that demodex mites are ubiquitous living on nearly all adults. The only question really is how much of a role they play in rosacea. They are also very difficult to fully remove, so a lot of people who think they've treated for them haven't really fully done so.

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    • #17
      I would try clonazepam, gabapentin, baclofen for stinging pain. Most things cause vasodilation for me so I can't tolerate gabapentin / baclofen but I think most people can. (Note: even LDN causes vasodilation for me.) I don't think there is any evidence for low dose accutane use in facial pain, although it can be anti-inflammatory in the skin.
      Baclofen was very promising for me in the beginning, for stinging and lowering the temperature of my skin to "normal". Clonazepam isn't as good for me, but doesn't cause me vasodilation.

      If you're desperate + tried some things, I would consider tramadol. Sometimes docs won't ever suggest (partial) opioids to rosacea pain - just because they have never put 2 and 2 together. patient has to initiate, if they want.

      good luck

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      • #18
        Hi, I had colossal flushing - deep red, blood filled - I looked like a blood blister. As awful as that was, the stinging bothered me more than anything. Painful stinging at moments - but also just a constant low-grade stinging and, as many rosacea can relate, an "awareness" of my skin.

        I've often told people that the 24/7 stinging is like someone tapping on your shoulder nonstop to get your attention. Always there. A lot of people understandably can't understand how much rosacea "hurts." They think we're most concerned about how we look.

        I echo antswantsclear here that you have to address rosacea symptoms at every angle. It's diet, medication, lifestyle, behaviors, etc.

        My stinging was greatly helped by low-dose antidepressants. I went on Zoloft. I did this after reading about people here who went on mirtzapine - but particularly after I read a post here by someone who said he was helped by celexa (think that was the name). You can find the post with the search function here. Think the guy who posted was Shoab??

        It took a few times of trial and error with the medication - with upping the dose gradually to see what worked.

        Also, I did have anxiety - and that anxiety worsened the stinging and flushing. Anything - emotions, inflammation, heat - that can affect your nervous system - can exacerbate stinging and flushing.

        I even tried Botox for flushing - as the doc explained that the Botox tells the nerves to tell the vessels not to flush.

        So all this is to say - consider talking to your doc about the AD. It may help you overall like it did me - in addition to stinging. Not many docs have heard of this - so come informed - noting that other patients mentioned their results. Also, note a doctor - Dr Chu in London. Most doc however understand the effects of ADs on nerve pain. Other ADs like tricyclic have been used for nerve pain - but don't let anyone put you on something like that. Zoloft and celexa and I think Wellbutrin have low risk for weight gain. I've never had that problem with Zoloft.

        Also try relaxed breathing, de-stressing things like exercise if you can. Anything to get the nerve endings in your skin to chillax.

        Hope all this rambling was helpful.

        Sent from my BBE100-5 using Tapatalk

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        • #19
          I find it fascinating that what works for some people can make other people much worse. I have seen a direct effect of depression medications on my rosacea....and they make it much worse (much more red + dry skin, dry eyes, more prone to flushing. I am currently on lamotrigine and my rosacea / eyes are the worst they have ever been. I have tried the whole spectrum of SSRI's & SNRI's and this has been the case. I believe my rosacea and depression have a similar cause. The rosacea started after a couple months of severe depression. Kind of makes me sad because the brain is not well understood. I am definitely going to take into account everything everyone has said on here. Now I just need to find a dermatologist that doesn't say "I don't treat stinging, I treat skin" ("Rosacea Specialist" at UPenn )

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          • #20
            Also - Does anyone know how to go about getting LDN in the states? My doctors refuse to look outside of the box on anything. Are there specific types of doctors that would be more aware of this prescription? (I currently see a Psychiatrist, dermatologist and family doc)

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            • #21
              Originally posted by 24andred View Post
              I find it fascinating that what works for some people can make other people much worse. I have seen a direct effect of depression medications on my rosacea....and they make it much worse (much more red + dry skin, dry eyes, more prone to flushing. I am currently on lamotrigine and my rosacea / eyes are the worst they have ever been. I have tried the whole spectrum of SSRI's & SNRI's and this has been the case. I believe my rosacea and depression have a similar cause. The rosacea started after a couple months of severe depression. Kind of makes me sad because the brain is not well understood. I am definitely going to take into account everything everyone has said on here. Now I just need to find a dermatologist that doesn't say "I don't treat stinging, I treat skin" ("Rosacea Specialist" at UPenn )
              That's terrible about SSRI's, SNRI's worsening your rosacea. One thing is ketamine iv for depression - my experience is that it blows the traditional pills out of the water. It can be done for neuropathic pain too although it didn't help my rosacea pain long term. At my local teaching hospital they are also interested in studying transcranial magnetic stimulation (TMS) for depression. Psych says she has good results. Take care

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              • #22
                Originally posted by 24andred View Post
                Also - Does anyone know how to go about getting LDN in the states? My doctors refuse to look outside of the box on anything. Are there specific types of doctors that would be more aware of this prescription? (I currently see a Psychiatrist, dermatologist and family doc)
                We have one post about LDN that a poster (Andrea Bragg) reports getting it online. We have another more detailed post about LDN that may be helpful for you.
                Brady Barrows
                Blog - Join the RRDi


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                • #23
                  Originally posted by hg24 View Post
                  Hi, I had colossal flushing - deep red, blood filled - I looked like a blood blister. As awful as that was, the stinging bothered me more than anything. Painful stinging at moments - but also just a constant low-grade stinging and, as many rosacea can relate, an "awareness" of my skin.

                  I've often told people that the 24/7 stinging is like someone tapping on your shoulder nonstop to get your attention. Always there. A lot of people understandably can't understand how much rosacea "hurts." They think we're most concerned about how we look.

                  I echo antswantsclear here that you have to address rosacea symptoms at every angle. It's diet, medication, lifestyle, behaviors, etc.

                  My stinging was greatly helped by low-dose antidepressants. I went on Zoloft. I did this after reading about people here who went on mirtzapine - but particularly after I read a post here by someone who said he was helped by celexa (think that was the name). You can find the post with the search function here. Think the guy who posted was Shoab??

                  It took a few times of trial and error with the medication - with upping the dose gradually to see what worked.

                  Also, I did have anxiety - and that anxiety worsened the stinging and flushing. Anything - emotions, inflammation, heat - that can affect your nervous system - can exacerbate stinging and flushing.

                  I even tried Botox for flushing - as the doc explained that the Botox tells the nerves to tell the vessels not to flush.

                  So all this is to say - consider talking to your doc about the AD. It may help you overall like it did me - in addition to stinging. Not many docs have heard of this - so come informed - noting that other patients mentioned their results. Also, note a doctor - Dr Chu in London. Most doc however understand the effects of ADs on nerve pain. Other ADs like tricyclic have been used for nerve pain - but don't let anyone put you on something like that. Zoloft and celexa and I think Wellbutrin have low risk for weight gain. I've never had that problem with Zoloft.

                  Also try relaxed breathing, de-stressing things like exercise if you can. Anything to get the nerve endings in your skin to chillax.

                  Hope all this rambling was helpful.

                  Sent from my BBE100-5 using Tapatalk
                  Did botox work?

                  Comment

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