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Thread: neurogenic rosacea -- my battle.

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    Senior Member laser_cat's Avatar
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    Default neurogenic rosacea -- my battle.

    Hello

    So … for the past 2 years I’ve been struggling with neurogenic rosacea (I’m 32/f) I felt so broken for a long time. I could not work because of the burning pain or leave my temp-controlled home, etc. I just want to say to anyone out there struggling like me, to not give up, to make sure you are trying at least *something* at any given time, be relentless in reading about this condition from forums, researching appropriate doctors, but especially going through medical literature on potential pathophysiology, the way potentially useful drugs work, and about related conditions (primarily erythromelalgia, but also migraine, autonomic dysfunction, diabetic neuropathy and other types of neuropathy, raynaud’s, vasospasm, etc).

    I am fortunate to be near 2 major teaching hospitals. After a year of bouncing around referrals, I finally had an appt with one of the docs who came up with the paper designating “neurogenic rosacea” as a separate disease entity. I also am very fortunate as well to see world-class doctors in pain management, rheumatology, neurology, and now that I can see the light at the end of the tunnel, I couldn’t in good faith not pass along my experience + what I’ve learned + speculate with all this for someone out there like me who might be struggling.

    my symptoms — burning + flushing every night ~ 6pm-2am, that would come out of nowhere. At first I’d be ok during the day, but after ~6 months it became all the time. I would pace my room at night because I couldn’t sit down or lie down to sleep. Thinking hard about a problem, talking to anyone, chewing, digesting were not smiles times. Laser - not helpful in the least.

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    Senior Member laser_cat's Avatar
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    The first big med I tried was clonidine. I thought it was very helpful at first. But maybe only a week (?) and my body got used to it perhaps, and it was doing more harm than good. I only know this in hindsight. Taking a dose would help to clamp down the current flushing, but it was setting me up in the long term for more frequent and painful flushing. Another thing I’ve noticed — it worsened my flushing due to sympathetic nervous system spikes (like talking to anyone). Stayed on the drug for over a year before I gradually tapered off. On clonidine, my skin (including face) could get cold to the touch, so with every temperature increase, it felt like my body had to “save” the skin (I do not and never had obvious Raynaud’s, but perhaps tendencies). I found it to be a very powerful vasoconstrictor. It works as being a central alpha 2 adrenergic agonist (amongst other things). I haven’t confirmed this with doctors, but I believe it can backfire in a way that is reminiscent of Mrivaso (even though clonidine is centrally acting — meaning CNS — and Mirvaso is peripherally acting). To me an “agonist” is a dangerous mechanism of action (your body might over time down-regulate those receptors that are being activated) as compared to an “antagonist” mechanism (like a beta blocker, which block the epinephrine from normally causing peripheral vasodilation). If your body adjusts to the beta blocker presumably by making more beta 2 adrenergic receptors in peripheral blood vessels, and you need more benefit, you can just up your dose. But back to clonidine - I believe it was obscuring the results of testing out other drugs because it was such a dominant vasoconstrictor. I basically had to try all the drugs that I had tried while on clonidine, a second time, and some things that weren’t successful on clonidine, became successful (see amlodipine, below, and mexiletine). My 2 cents is - if you’re on it and it’s still not enough of a relief for you, to get off of it at least temporarily and try other meds before going back.

    The med I’m having **a lot** of success with is amlodipine for the past ~4 months. I take 0.625 mg right before bed. I feel an outward pressure in my face within an hour after taking it, although it is a very slow acting drug (half life ~30 hours, peaks in system at ~8 hrs). The slow acting mechanism of amlodipine is preferred over nifedipine (short acting) because there is less rebound sympathetic spike that can potentially happen. It’s a calcium channel blocker / vasodilator, but works by keeping the blood vessels always a little bit open while working to stabilize them. It effectively increases nutrient perfusion to the skin (my skin has never been so soft … chicken skin under arms gone, pores smaller, etc). Too much amlodipine and it feels like lava near my ears, so best to be careful! But at a good dose for me, the outward pressure sensation feels **so** good, like my face is stronger, and my burning can go from a 9 to a 1 within the hour. I so wish I had tried this from the get go when I was only dealing with evening burning .. I think it would have nipped it in the bud :/
    Last edited by laser_cat; 15th June 2018 at 08:16 PM.

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    Senior Member laser_cat's Avatar
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    I think that a mechanism that could be at play for some people is AV shunting. It is thought to occur in complex regional pain syndrome, erythromelalgia (EM), sometimes Raynaud’s, diabetic neuropathy .. and I have yet to read a reason why this couldn’t happen in the face. It’s when the blood never quite reaches the skin, but is shunted / short circuited away from the capillaries, paradoxically causing hypoxic skin tissue even though the body part affected can be hot/swollen/flushing/burning.

    Another mechanism that could be at play for people is vasospasm (like Raynaud’s or migraine). The pain comes from having blood vessels that are too overly constricted at a basal state, so when there is a temp bump, the dilation is excessive and very painful. (Vasospasm and AV shunting may not be distinct mechanisms.)

    Amlodipine is thought to help with either of these mechanisms. I’m inclined to think AV shunting was more of what was going on for me because in the evening, it would seem that my skin would NEVER be satisfied with the amount of oxygen / blood it was getting (and I don't think the blood was quite reaching my skin, because my skin itself would be dry / rough / a different texture than the rest of my body) . The burning / flushing only stopped when my body temp would go down in the early morning hours. In addition, not every vasodilator (in fact none I’ve tried except for amlodipine..) is helpful for me. NAC, estrogen, flaxseeds are all terrible for me for example. There’s something specific about amlodipine that was able to decrease pain for me, and i think it was by evening out the maldistributed oxygen levels in my face.
    Last edited by laser_cat; 15th June 2018 at 07:26 PM.

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    Senior Member laser_cat's Avatar
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    My doctor who came up with the neurogenic rosacea subtype and diagnosed me as such — I asked him how it is different from erythromelalgia (EM) many a time. He says “neurogenic rosacea” is just a name they came up with, but that when he thinks of my case, he puts it in the category of traditional EM involving feet only. He’s seen cases of someone with just a burning face which then progresses to hands/feet. According to him, he thinks everything *starts* with nerve dysfunction (as opposed to thinking about it like a vasospasm). This is why stellate ganglion blocks, purely vasoactive drugs, SSRI’s will only go so far with cases like mine. The success of SSRI’s or beta blockers— which I was hoping at one point to calm down my overactive sympathetic nervous system — assume normal nerve function which I do not have. He speculates that by addressing the discomfort, the flushing component will naturally recede. He is the only doc so far to push the agents blocking sodium channels (which are thought to be key in EM and other chronic pain conditions). Lidocaine IV’s are one of the few agents to uniquely address abnormally functioning sodium channels — getting them done regularly would be able to reset the pain neural circuits at play and uniquely address the root of the problem. Mexiletine and ranexa (there are a few others like oxtellar, lamotrigine, valproic acid, phenytoin that also address sodium channels) are oral sodium channel blockers but without the same power as lidocaine. It’s possible lidocaine iv is needed before someone can respond to mexiletine for example. Hyper excitable sodium channels is thought to recruit sympathetic involvement and contribute to flushing and redness. While some people get one lidocaine iv as outpatient and are good to go for the next couple months, this is not the norm and others need longer / more frequent lidocaine to retrain the pain circuits.

    Dry skin that cannot sweat can be from an underlying neuropathy. I was given neurodiagnostic testing and was found to have small fiber neuropathy (coexists a lot with EM) and autonomic dysfunction, which seems to support the hypothesis of nerve dysfunction being the root in all this. Currently my neurologist is going to try to figure out the cause of the neuropathy and see if it can be addressed. He has mentioned some instances of inflammatory neuropathies that can be treated with IVIG and high dose steroids for example. Many EM patients (50-90%) also have small fiber neuropathy, and can show a decrease in epidermal nerve fiber density with biopsy. As the nerves try to regrow, the pain circuits might get out of control (my understanding). Continually icing the skin can also lead to small fiber neuropathy and perpetuate the pain. I am not clear on how possible it is to be able to interpret a biopsy from the facial areas but one doctor mentioned it might be doable with the right labs / neuropathologist.
    Last edited by laser_cat; 25th November 2018 at 07:35 PM.

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    Senior Member laser_cat's Avatar
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    It took years for doctors to take me seriously and not just shrug and say “maybe it’s stress?” Unfortunately I found it necessary for a close friend or family member to come with me to doctor appts so my experience can be validated by someone who isn’t me, at how much this has taken over my life, and that we cannot just hope it would just “go away”. I think severe flushing / burning faces might be on the cutting edge of things in the medical community (for better or worse), and it’s imperative to find a doctor who can contemplate different hypothesis from similar conditions, pivot with new information as every case is a little different, and is aware of the assumptions s/he is bringing to the table (e.g. does it start with the blood vessels? does it start with the nerves? am I even aware I am having this assumption so I can backtrack if necessary?) when in fact nothing is *really* known yet. I definitely wouldn’t trust just *one* doctor either — having a team of doctors can bring unique perspectives to the table. In particular I wish I had gotten a referral into the pain management center much sooner — they are one of the few who recognize that chronic pain needs to be treated regardless of the cause because it can quickly become a life force of its own (and this is my experience as well). It is usually pain doctors who offer lidocaine iv’s (not derms).

    I know this is a novel but I actually have a lot more I could say and was really trying to pare down believe it or not :p Good luck to everyone.

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    Thank you very much for sharing, very interesting read, and will help somebody for sure! Its obvious you been through a lot, from the bottom of my heart, keep fighting, glad you are finally seeing the light!

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    Senior Member laser_cat's Avatar
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    Quote Originally Posted by rednessator View Post
    Thank you very much for sharing, very interesting read, and will help somebody for sure! Its obvious you been through a lot, from the bottom of my heart, keep fighting, glad you are finally seeing the light!
    Thank you rednessator, means a lot Wishing you success as well xx

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    Hi Lizzy!

    Thank you so much for thoroughly documenting your experience. All this information is extremely helpful and it's a great resource and reference.

    One question: do you still think that coming off the birth control pill is related to the neuropathy? What do your doctors say about this?

    M.

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    Senior Member laser_cat's Avatar
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    Quote Originally Posted by MissM View Post
    Hi Lizzy!

    Thank you so much for thoroughly documenting your experience. All this information is extremely helpful and it's a great resource and reference.

    One question: do you still think that coming off the birth control pill is related to the neuropathy? What do your doctors say about this?

    M.
    Hey MissM!

    Honestly I don't know. My hunch is that coming off the birth control pill was not the cause at all though. For a while I was really zoomed in on that, I know. Around the time of my flushing/burning onset, I also had migraines (why I came off the pill). Ive talked to a couple other people with facial burning who say their migraines were in peak form around their facial burning onset. So maybe it was more about my migraines than coming off the pill ..

    No doctor knows of any connection between birth control and all this, either in the medical literature or in their experience.

    So anyone who's on the pill and is thinking of coming off ... I think you'll be ok

    Best,

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    Quote Originally Posted by laser_cat View Post
    Hey MissM!

    Honestly I don't know. My hunch is that coming off the birth control pill was not the cause at all though. For a while I was really zoomed in on that, I know. Around the time of my flushing/burning onset, I also had migraines (why I came off the pill). Ive talked to a couple other people with facial burning who say their migraines were in peak form around their facial burning onset. So maybe it was more about my migraines than coming off the pill ..

    No doctor knows of any connection between birth control and all this, either in the medical literature or in their experience.

    So anyone who's on the pill and is thinking of coming off ... I think you'll be ok

    Best,
    Thank you, my friend! <3

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