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Thread: Help please - severe neurogenic rosacea

  1. #11
    Senior Member nat007's Avatar
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    Quote Originally Posted by darren1 View Post
    Slightly off-topic: I had IPL 2 days ago and I cited some comments made by the late Dr Crouch to my clinician who performed the IPL. He had heard of him, and it turns out, was taught by him.

    He was saddened and shocked to hear of his sudden passing back in 2016.
    Nice to read that Darren.. Yeh many here saw dr Crouch, he was knowledgeable, friendly, realistic and had rosacea himself. Bless him, he is missed all-round I think.

  2. #12
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    Thanks everyone, laser_cat I have noted all your meds to discuss with the neurologist. My mum doesnít feel like her condition is EM because she wouldnít describe it as Ďpainfulí rather I think it is more like blood surging into the face and the burning/stinging/pulsing sensation of that. Is that what you experience? Nat - I have been reading your blog it is very helpful. The laser used on Mum was apparently brand new, she had had some success with a previous laser at the same clinic and the dr said this new one would be better. There is still no change in her symptoms she hasnít left the house for a week now. I was really hoping that we could work on bringing her condition under control after the last few years of it ramping up by her moving away for the winter and regulating her house temperature more, but this seems to have set everything back. I donít think sheís convinced that itís possible to bring it back from here, maybe Iím just being optimistic. With her RA as well itís just so much to deal with.

  3. #13
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    Just wondering what climate you are all living in? We are in a cold climate, but in summer it gets up to 35 Celsius plus regularly, still with cool nights. I think itís a particularly bad combo for rosacea.

  4. #14
    Senior Member nat007's Avatar
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    Hi Vmar

    glad to hear the IPL machine was new. I wonder if it was the same 'brand' as the Quantum I was treated with because if so, it is a type of machine that has been around a long time, at least 15 years and not as refined as the Lumenis one with triple pulse and all that. But it's water under the bridge now, your mum needs to get her flare under control... So many suggestions made here and nobody knows what will work for your mum I hope her doctor can see her reaction (maybe a video call or photos sent if she can't leave the house now?) and prescribe something to control the inflammation and flaring now? The first 3 to 4 weeks after treatment pretty much everyone flares from these treatments, and especially those who already had a significant flushing problem prior. Things might settle down after that.

    I was beet red and on fire after both IPL's but the last one (Lumenis One with dr Crouch) did calm down after 3 weeks of diclofenac 100 mg twice a day (an NSAID). Derm said it should help bring the post-IPL inflammation response down and it did luckily... Anti flushing medication can also help. Big fingers crossed and hopes things settle down again after a month or so.

    I live in a similar climate, cold winters, reasonably warm summers. In summers it stays warm and doesn't cool off much at night but all other seasons it's very cold at night. My flushing, redness and inflammation get worse in winter too, partly the more extreme temperature changes are to blame but also having very cold air on my skin seems to make the redness wore. Is it an idea to keep the temp. in moms bedroom at night not too cold? To avoid these rebounds during the day? I try to not let it get colder than around 14 degrees these days, if needed the dreaded heater goes on low in winter..

    Lovely all the work and investigation you do for your mother btw

  5. #15
    Senior Member laser_cat's Avatar
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    Quote Originally Posted by Vmar View Post
    My mum doesn’t feel like her condition is EM because she wouldn’t describe it as ‘painful’ rather I think it is more like blood surging into the face and the burning/stinging/pulsing sensation of that. Is that what you experience?
    I think this is what I experience? I put burning into the category of pain (though I might be a wimp :p) One of the reasons I thought the SFN testing was worthwhile for me was because it confirmed the sensory nerves were wonky. I thought for a long time my nerves were just accurately sensing the insane amount of heat that was in my face (due to the blood). My derm instead said his theory about neuro rosacea was that the sensory nerves are damaged / over-excited somehow, and that they're falsely saying its 1000 degrees or that there's acid around, and my blood vessels are reacting accordingly. I didn't really believe that was going on for me until I had SFN testing.

    It's probably not true for everyone, but I think it might be for some people.

    Regarding your other question about climate - I live in 67-77 deg weather (dry). I do not do well with cold weather because I always have rebound flushing/burning that happens. This is probably at least partially, why I didn't respond well to clonidine. Meanwhile the heat/sun just feels like it goes straight to the nerves like I have no skin. I try to avoid temp fluctuations if I can.

    Really hope your mom improves! Agreed with Nat007 it's touching how you are trying to help her etc,

    I didn't mention plaquenil might be helpful, esp. if your mom has RA -- might be anti-inflammatory and help with flushing/burning, though it won't help immediately. Although yes again on what Nat said - no one will know for sure what will help her (maybe not even docs..)

    It is hard to watch a parent suffer.

    Take care.
    Last edited by laser_cat; 7th November 2018 at 12:56 AM.

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    Thank you everyone :-) I waited until we had the neurologist appt before replying. He was not familiar with anything like this, but considered Botox worth a try. She will think about that then go back in jan for a test patch. He stressed the negative side effects of Botox, such as dropped muscles near the jaw/eyebrows if it mistakenly got into the muscle, but I havent heard any bad stories about that. It did make my mum hesitate, however. Would a cosmetic surgeon be better placed to deal with Botox on the face?

    In the meantime he prescribed moxinidine 200 mcg, and a cream of ketamine 0.5, amitriptiline 1.0, gabapentin and clonidine. These are to be trialled separately over the next 2 months.

    Your help has been greatly appreciated, I hope you are all managing ok! Sorry I can only take advice and not impart it :-(

  7. #17
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    You could try topical lidocaine, can't remember the brand name, it's over the counter and the other ingredients not are too harsh for use on the face.

    For others who have taken them, what is considered the safest, least side effects beta blocker for Rosacea flushing ( I flush always when laying down to sleep at night), are they safe to use continually for long periods like 6 months.
    Last edited by redtere; 9th November 2018 at 06:58 PM.

  8. #18
    Senior Member laser_cat's Avatar
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    Quote Originally Posted by Vmar View Post
    He stressed the negative side effects of Botox, such as dropped muscles near the jaw/eyebrows if it mistakenly got into the muscle, but I havent heard any bad stories about that. It did make my mum hesitate, however. Would a cosmetic surgeon be better placed to deal with Botox on the face?
    I hope the medications work for your mom!!

    I have a medical derm do my botox - I just wanted to find a doc who had experience (microbotox is being used for flushing more and more I think..). He injects fewer units around my nasolabial folds / eyebrows.

    Generally if there is any droopiness or whatever, it will be temporary (all botox effects gone in 3 months).

    Really hoping she will feel better soon. Best,
    Last edited by laser_cat; 9th November 2018 at 07:43 PM.

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    Thanks for everyoneís suggestions. Just an update, the severity of the flushing decreased about 7-8 days after the laser treatment, and now I think itís pretty much subsided to what it would normally be at this time of year. She tried the ketamine/amitiptyline cream and that seems to have neither made it better nor worse. She will try the moxonidine soon, not sure exactly when but I will update here if it has any good results!

  10. #20
    Senior Member laser_cat's Avatar
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    Quote Originally Posted by Vmar View Post
    Thanks for everyoneís suggestions. Just an update, the severity of the flushing decreased about 7-8 days after the laser treatment, and now I think itís pretty much subsided to what it would normally be at this time of year. She tried the ketamine/amitiptyline cream and that seems to have neither made it better nor worse. She will try the moxonidine soon, not sure exactly when but I will update here if it has any good results!
    I'm glad!

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