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

  1. #11
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    Quote Originally Posted by redvelvet View Post
    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: Attachment 5659Attachment 5660Attachment 5661Attachment 5662. 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!
    I agree Soolantra does not seem a very effective treatment for demodex mites compared to some alternatives. People who do reject demodex mites as a cause of their rosacea should remember both that they are actually very hard to eliminate, and also that you can expect some die off symptoms when you first try to treat them (e.g. for 2-3 weeks).

  2. #12
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    I stopped wondering which sub-type I have, etc etc and just concentrated on how my face/skin was feeling/looking.

    antwantsclear suggested that I try ZZ cream (I had never considered the mites theory) however, felt that my skin after over a years use of LDN could tolerate something new!

    It has been amazing for me in such a short time...............as for ocular rosacea, less flushing. less issues with my eyes!

    I do warm compresses once/twice a week followed by cold one's and things are 99% improved!

    Personally I think we can get too hung-up on sub-types and labels...........if your face is stinging/flushing/burning etc everything is unique to you and your particular life style and situation..

    Gently does it, trying one thing at a time............almost 18 years on and I am keeping my rosacea at bay.

    I wish you all as much success (but in a much shorter time!!)

    J
    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






    .

  3. #13
    Senior Member Mistica's Avatar
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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.
    Supplements: Niacinamide, Vit K2, low D3, Vit A. Moderate Dose Vit C, Iodine, Taurine, Magnesium. Very low dose B's. Low dose zinc (to correct deficiency).
    Skin Care: No Cleanser, ZZ cream mixed with Niacinamide gel 4% and LMW HA 2%, ethyl ascorbate 2%.

    Treating for gut dysbiosis.(This is helping).
    Previous GAPS diet. Have now introduced lots of fibre.
    Fermented Foods. Intermittent fasting -16-18 hours.
    Oral Colostrum. Helps reduce food reactions.

  4. #14
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    Quote Originally Posted by antwantsclear View Post
    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.
    Oh exactly- I should clarify that demodex was one component of the puzzle for me, (but probably the most notable)and the final step of many changes i made in diet/products/environment/thought processes etc. And “misdiagnosed” was probably the wrong term and I was referring more to my ocular rosacea which was definitely caused by demodex mites, yet I was treated for dry eyes, hormonal changes, “you’re just getting older,” and one eye doctor even gave me bifocal contacts which was a disaster. 😂 Once I started using the eyelash wash, everything went back to normal.

  5. #15
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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. What’s 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 I’m sure we are all familiar with but I don’t 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 didn’t cause worsening of other symptoms?

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

    I’ve tried propranolol (made me much more red, tired, dry eyes), clonidine (same experience) but nothing has helped the sting. I don’t flush very badly although my skin does look horrible and red almost all of the time...it’s just the constant stinging that I can not get over.
    From my experience I would probably not recommend low dose accutane if you want to improve the nerve pain.

    I actually got all the nerve pain and severe flushing while on low dose accutane for acne. I was only on 10-20mg a week. Unfortunately for some people it can make them worse and you won't know I guess until you try. If you don't have the inflammatory type of rosacea with papules and bumps then I definitely wouldn't try it for redness and nerve pain. It can really sensitize the skin.
    Last edited by owldog; 14th February 2020 at 06:12 PM.

  6. #16
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    Quote 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.

  7. #17
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    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

  8. #18
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    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

  9. #19
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    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 )

  10. #20
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    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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