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

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  1. #1
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    Default Neurogenic rosacea treatment (for stinging)? - trying not to worsen my ocular rosacea

    Hi all,

    It has been a while since I have posted since I have been battling some serious depression along with my worsening rosacea. Whatís fun about these two conditions is that the treatments for depression have made my rosacea so much worse (Yay!). Anyway, I now experience strong stinging sensations all day long across my cheek bones and forehead. This is paired with other rosacea symptoms that Iím sure we are all familiar with but I donít feel like I need to get in to. I see myself with type 1 and ocular mainly with hypersensitive skin. I have read posts around about stinging but it appears that the medications noted all will affect my ocular rosacea (by drying out my eyes more). Has anyone with neurogenic rosacea stinging found relief that didnít cause worsening of other symptoms?

    Thoughts on treatment options
    -Low dose naltrexone?
    -Low dose accutane?

    Iíve tried propranolol (made me much more red, tired, dry eyes), clonidine (same experience) but nothing has helped the sting. I donít flush very badly although my skin does look horrible and red almost all of the time...itís just the constant stinging that I can not get over.

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    Quote Originally Posted by 24andred View Post
    Hi all,

    It has been a while since I have posted since I have been battling some serious depression along with my worsening rosacea. Whatís fun about these two conditions is that the treatments for depression have made my rosacea so much worse (Yay!). Anyway, I now experience strong stinging sensations all day long across my cheek bones and forehead. This is paired with other rosacea symptoms that Iím sure we are all familiar with but I donít feel like I need to get in to. I see myself with type 1 and ocular mainly with hypersensitive skin. I have read posts around about stinging but it appears that the medications noted all will affect my ocular rosacea (by drying out my eyes more). Has anyone with neurogenic rosacea stinging found relief that didnít cause worsening of other symptoms?

    Thoughts on treatment options
    -Low dose naltrexone?
    -Low dose accutane?

    Iíve tried propranolol (made me much more red, tired, dry eyes), clonidine (same experience) but nothing has helped the sting. I donít flush very badly although my skin does look horrible and red almost all of the time...itís just the constant stinging that I can not get over.
    I'm just wondering how much Propranolol did you take?

  3. #3
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    Quote Originally Posted by 24andred View Post
    Hi all,

    It has been a while since I have posted since I have been battling some serious depression along with my worsening rosacea. Whatís fun about these two conditions is that the treatments for depression have made my rosacea so much worse (Yay!). Anyway, I now experience strong stinging sensations all day long across my cheek bones and forehead. This is paired with other rosacea symptoms that Iím sure we are all familiar with but I donít feel like I need to get in to. I see myself with type 1 and ocular mainly with hypersensitive skin. I have read posts around about stinging but it appears that the medications noted all will affect my ocular rosacea (by drying out my eyes more). Has anyone with neurogenic rosacea stinging found relief that didnít cause worsening of other symptoms?

    Thoughts on treatment options
    -Low dose naltrexone?
    -Low dose accutane?

    Iíve tried propranolol (made me much more red, tired, dry eyes), clonidine (same experience) but nothing has helped the sting. I donít flush very badly although my skin does look horrible and red almost all of the time...itís just the constant stinging that I can not get over.
    Both LDN and low dose accutane could help, but the simplest thing to try would be Zhongzhou cream. It can help a lot with the burning and stinging sensations since these may well be the demodex mites - as long as I use this cream I don't get those sensations. Hydroxychloroquine and moxonodine would be more effective combination than the medicines you mention and do also reduce some of the sensations.

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    I was also wondering (along with antwantsclear) if you had already tried a treatment for demodex mites? Or perhaps just a treatment for ocular rosacea, and then you could possibly tolerate a medication better? I used Ocusoft Oust Demodex which is a foam for your eyelashes. It cleared up my symptoms in about a week (after multiple trips to eye doctors who gave me hydrating eye drops but never actually told me what was causing the problem.) If you have already attempted demodex treatments, my apologies. I know it's not the right solution for everyone, but I was starting to develop sores on my face/facial pain/ocular rosacea and that's when I realized I had a demodex problem. Good luck!

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    Quote Originally Posted by 24andred View Post
    Hi all,

    It has been a while since I have posted since I have been battling some serious depression along with my worsening rosacea. Whatís fun about these two conditions is that the treatments for depression have made my rosacea so much worse (Yay!). Anyway, I now experience strong stinging sensations all day long across my cheek bones and forehead. This is paired with other rosacea symptoms that Iím sure we are all familiar with but I donít feel like I need to get in to. I see myself with type 1 and ocular mainly with hypersensitive skin. I have read posts around about stinging but it appears that the medications noted all will affect my ocular rosacea (by drying out my eyes more). Has anyone with neurogenic rosacea stinging found relief that didnít cause worsening of other symptoms?

    Thoughts on treatment options
    -Low dose naltrexone?
    -Low dose accutane?

    Iíve tried propranolol (made me much more red, tired, dry eyes), clonidine (same experience) but nothing has helped the sting. I donít flush very badly although my skin does look horrible and red almost all of the time...itís just the constant stinging that I can not get over.
    LDN! LDN! LDN!

    I have neuropathic rosacea and ocular rosacea!

    Both under control now with LDN!!

    Good luck!
    SUFFER FROM NEUROPATHIC ROSACEA & OCULAR ROSACEA SINCE 2002.


    *Vit D3,Theratears Omega 3.



    *LDN since October 2018.

    *REN skincare range. TARTE cosmetics.

    *Tried Clonidine, Moxonidine & Atenolol (None being taken at present ).

    *Yearly IPL treatments until 2009.

    * RLT Journey!" (Sept 09) **Using Britebox Revive..(Stopped ).



    History of Hyperthyroidism (Graves) Lichen Planus (oral)
    PROUD TO BE DIFFERENT






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    Thanks for the responses! So I have tried soolantra for about 3 months. It didnít seem to do anything but irritate my skin. I find anything I put on my face irritates it without exception. Ive also tried a ton of stuff for my ocular symptoms (restasis, xiidra, warm compresses, cold compresses, steroid drops, regular wetting drops without preservative (which is crazy that they make things worse) doxycycline, fish oil) Again, everything Iíve tried makes them more red, stinging and inflamed. Iíve moved away from trying to use creams to help considering all of this. In response to the propranolol, I really donít remember. I do remember it made me much worse so I stopped. Iíll look into the hydro whatever, LDN, low dose accutane and maybe some other things to help with the stinging...at this point Iíve given up on trying to keep my face from destroying itself....just need the pain to stop. I donít flush too often. Iím just consistently red and stinging from the a.m to the p.m

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    Quote Originally Posted by 24andred View Post
    Thanks for the responses! So I have tried soolantra for about 3 months. It didnít seem to do anything but irritate my skin. I find anything I put on my face irritates it without exception. Ive also tried a ton of stuff for my ocular symptoms (restasis, xiidra, warm compresses, cold compresses, steroid drops, regular wetting drops without preservative (which is crazy that they make things worse) doxycycline, fish oil) Again, everything Iíve tried makes them more red, stinging and inflamed. Iíve moved away from trying to use creams to help considering all of this. In response to the propranolol, I really donít remember. I do remember it made me much worse so I stopped. Iíll look into the hydro whatever, LDN, low dose accutane and maybe some other things to help with the stinging...at this point Iíve given up on trying to keep my face from destroying itself....just need the pain to stop. I donít flush too often. Iím just consistently red and stinging from the a.m to the p.m
    So most of the medications you mentioned for the ocular symptoms treat the symptoms, not eliminate the cause. If demodex mites are the culprit, your eye symptoms would respond in a week or so to a simple tea tree eyelash solution like Oust. I know you said you've moved away from trying creams, and I understand your frustration, but humor me and try the Ocusoft Oust demodex cleaner eye wash for a week. I bought mine on Amazon for $10. If you kill the demodex mites, your eyes will heal. Then you can start working on your skin. Here's an article on demodex and the misdiagnosis of so many rosacea/ocular rosacea cases due to doctors underestimating the prevalence and severity of demodex mites: https://www.reviewofoptometry.com/ar...e-mitey-menace. I know you tried Soolantra without much luck, which I hear from a lot of people. I've given ZZ cream to 4 people now who said Soolantra didn't do anything, and all four have had unbelievable success with ZZ cream. It doesn't even sound realistic, but these are people who've had rosacea for 10+ years, and I had it for 20 years with no relief. I'm not trying to steer you in the wrong direction, but if I stayed silent I would always wonder if you could have been helped the way I was helped. Here are my before and after pics from using ZZ cream: red2.jpgred.jpgred6.jpgred4.jpg. You should also see RedRecluse's post with pics. I know it's not the solution for everyone, but it has helped a ton of rosaceans who were misdiagnosed for many years. Keep us posted!

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    so what you are saying is people with Neurogenic rosacea might suffer from demodex too or are misdiagnosed? Or does the ZZ cream maybe help with more than just demodex

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    Quote Originally Posted by opare View Post
    so what you are saying is people with Neurogenic rosacea might suffer from demodex too or are misdiagnosed? Or does the ZZ cream maybe help with more than just demodex
    I think it's important we remember nearly every adult has demodex mites (95% according to studies), so the only question is the extent to which they impact on your rosacea. The most credible research on rosacea (e.g. by Professor Frank Powell in Dublin) suggests an important role for them in both type 1 and type 2 rosacea. Even if you have other causes of rosacea (such as issues with digestion and the gut), which is very likely, this does not mean that demodex mites are not part of the puzzle too. In my experience it's best to treat rosacea on all levels, not just one, so: medicines; digestion/nutrition/supplements; topical; and, psychology. If anyone has a serious issue with rosacea and/or flushing, I'm not sure why they wouldn't want to tackle all sources rather than only one or two of these.

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    Quote Originally Posted by opare View Post
    so what you are saying is people with Neurogenic rosacea might suffer from demodex too or are misdiagnosed? Or does the ZZ cream maybe help with more than just demodex
    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.
    Previous Numerous IPL.
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