A recent paper in Archives of Dermatology proposed a new rosacea subtype that is to be called Neurogenic Rosacea.
Before we tackle the question of What is neurogenic rosacea?, and How do I know if I have it?, lets step back and look at why a new subtype might be helpful.
Treating by Subtype
Why might rosacea sufferers care about a new proposed rosacea subtype? Well the standard classification of rosacea has proven a useful tool for a few reasons. For the purposes of this argument the benefit that I wanted to highlight is the benefit that treatments can be tailored to treat each rosacea subtype.
Once doctors are familiar with a grouping of rosacea symptoms, they can start to suggest a treatment regime that has the best chance of helping the patient.
So lets start at the beginning – diagnosis. How might doctors diagnose Neurogenic Rosacea?
Neurogenic Rosacea Diagnosis
Understanding that only 14 patients were grouped together for this paper, what symptoms and triggers were the most common in this group?
Neurogenic Rosacea Main Symptoms
- burning or stinging pain
- facial swelling (edema)
- facial redness (erythema)
- flushing
- facial blood vessels
Less common symptoms included itchiness (pruritus) and papules.
Neurogenic Rosacea Common Triggers
- heat
- sunlight
- hot showers
- stress
- exercise
- alcohol
Similar to Subtype 1
Reading the list of major symptoms of the proposed neurogenic rosacea, it seems at first glance to be similar to the established Rosacea Subtype 1 – erythematotelangiectatic rosacea.
Erythematotelangiectatic Rosacea
Subtype 1 is described as “mainly characterized by flushing and persistent central facial erythema. The appearance of telangiectases is common but not essential for a diagnosis of this subtype. Central facial edema, stinging and burning sensations, and roughness or scaling may also be reported. A history of flushing alone is common among patients presenting with erythematotelangiectatic rosacea”.
Concurrent Conditions
Several of the patients has neurologic or neuropsychiatric conditions along with their rosacea. Headaches were also very common amongst the group.
The neurologic and neuropsychiatric conditions included depression, anxiety, Raynaud phenomenon, migraines, chronic pain and regional pain syndrome.
Making the Diagnosis
So how do you know that your symptoms suggest you should come under this newly proposed subtype?
Well my reading of the paper suggests that it is the additional prominent neurological symptoms that distinguish neurogenic rosacea from the erythematotelangiectatic subtype 1.
If you have a severe form of the classic type of “red, flushing and visible blood vessels” rosacea and additional indications that fall under the classification of neurological symptoms then this new subtype might apply to you.
Coming Soon: How to treat Neurogenic Rosacea
Maybe I’m just feeling un-optimistic today, but I fail to see how this is useful. This new subtype is so similar to the existing subtype 1, and still fails to include all of the symptoms of rosacea that I’ve experienced and seen others report. For example, my ears are my daily beast, can’t even walk outside on a hot day or take a hot shower. Anyway, wouldn’t their collective brainpower / money be better directed towards finding some real treatments or cures for subtype 1? How much are the treatment options they offer up for this new type really going to differ from subtype 1?
This sounds very much like my rosacea. I’ll be interested to learn what the suggested treatments are.
Me too- appears to be Gabapentin or similar meds.
I tried gabapentin for this issue but it stopped working completely. I also tried all the others (over 10 meds) and got not relief. Finally my doc had to prescribe me methadone which is the ONLY thing that has helped. I have constant and severe nerve pain in my face– all day everyday. It effects my entire face as well as my eye balls and lips. They burn and sting like no other. Before the methadone I was bedridden for 6 months and could only get out for appointments– my pain was at a 10 plus. Now with methadone my pain is at a 5 so at least now I can get out of bed and do some things for myself. This is a horrible and progressive condition which only gets worse. Good luck.
My eyes burn almost constantly. My face burns off and on. I’ve had rosacea for 20 yrs., slowly progressive, but not painful–until now! My eyes have been very dry also, but weren’t painful. In mid May, I became ill with low grade fever, and then the burning started- some days it is worse than others. My family does NOT understand. I was emotionally upset about an issue which may have triggered this first episode, but it has not abated. My doctor put me on gabapentin at night. I’ve wondered if my thyroid is out of whack, or maybe I am allergic to high blood pressure med. I have been on forever. I am afraid I will be dealing with this from now on….nd feel anxious & depressed. I have dental work, I am to anxious to have done. How were you diagnosed?
Did your illness come on suddenly or did you have rosacea (in other forms) previously?
I am just leaving to see a Neurologist today. After an fall, and incurring a broken ankle, I seem to be just on the verge of being diagnosed with Regional Pain syndrome. Interesting that is this condition is concurrent with my Rosacea….anyone else out there with this dual condition ?
Hi,
It sounds as if you’re having a hard time. I want to wish you luck at the doc and let you know I’m sending + vibes.
Sounds just like Erythromelalgia of the face. How does one distinguish between the two? Are both forms of autonomic nervous system dysfunction? I am guessing that they are the same thing.
Meg
It would seem Rosacea appears in many types?? For about the last 2 years I have been on a medication (ZOLOFT)..This drug is not to be taken lightly..You will need a Specialist diagnosis..This Drug is used for Depression (I am an ex war Veteran)..For the last 10 yers I have suffered from Rosacea of the cheeks and to some degree of the nose without papules or pustules..I cannot tolerate being exposed to the sun, probably because I have spent a grat deal of my life being exposed to it..Hot rooms etc..Rosacea (in my case worsens during sleeping hours and improves during the day)..In the past I have had IPL (Intense Pulse Light) treament with varying degrees of success..ZOLOFT definitely keeps my Rosacea under control where I now have only slight flushing of the upper cheeks..Daily I apply a cosmetic that I make up myself using “EGO Skin Cream” mixed with a small amount of TRUBLEND 425, a coloriser..Any redness is reduced dramatically..Not only does it conceal, it defenitely cools the facial area..The cheeks become quite cold to touch..This I apply twice a day, Morning and Night after washing my face with Neutrogena Extra Gentle Cleaner. To all intents and purposes I consider myself Rosacea free..All suffers have my deepest sympathy..I most certainly believe that Rosacea needs to be treated internally as well as externally..Rhere are TOO many DRUG Companies vying for Patents that in the end may prove useless..We are all different..Pitanjara
I am a patient that has been diagnosed with this subtype. Along with the general flushing I also have pain in my skin (dysfunctional nerves in my face). Some tricyclic antidepressants really numb this pain as well as applying topical numbing ointments. I also have all of the other symptoms listed above. However, with treatment and lifestyle changes I am stable and living a good quality of life now thanks to my doctors at UCSF.
Hi Nancy, you said you were diagnosed with this subtype. Last year I came off an sari and a couple months later I started experiencing constant burning and stinging of my entire face. In addition I have tingling, cold sensations and itchiness. I do not really flush nor is my face red. I have seen 3 dermatologists who all diagnosed me with rosacea (I also have pustules/papules) but none of them were really familiar with this subtype and did not know what to make of my constant pain. Thus I was referred to a neurologist who diagnosed me with atypical facial pain and burning mouth syndrome. (My lips also burn constantly) I finally found a derm who was familiar with this subtype (he read the study) but had never seen a patient with it. He said I had all the symptoms except the only one that didn’t seem to fit was my pustules/papules. My skin is very sensitive and hurts to be touched. Is that how your skin feels? I am currently taking neurontin and it helps but does not take away the pain. My neurologist suggested nortriptyline but I have not tried it yet. You said the tricyclics helps to numb the pain? I feel like I am at my wits end as my life has become very limited. I am EXTREMELY heat sensitive as it makes me face burn like crazy. I emailed one of the authors of the study and he said my symptoms sound very much like NR. He has been very helpful–I asked him is he thought it would be wise for me to fly out to San Francisco to see him and he said if I did that then it would be best for me to go to UCSF and see Dr. Berger who is apparently one of the “guru’s” for this condition. So I am looking into doing that because there is really no one in my area who has experience with this condition.
did you visit this doctor?
Hi Diana,
No I did not fly out. I have seen 3 neurologists and the doctor I was going to see in California read their reports (I had them fax him my info) and he said everything that was done, I.e tests like MRI etc were exactly what he would have done. Basically their was not much more he could do for me. My diagnosis is still atypical facial pain and neuralgia. I am basically a freak of nature and they don’t know what to do with me. After writing my last comment 3 years ago my pain got so bad I could not get out of bed nor function at all. It felt as if my face was wrapped in barbed wire constantly. I did not think I could live this life. So my doctor referred me to a pain clinic to a doctor (the director) who is both an anesthesiologist and a psychiatrist. We tried many regular meds which didn’t work or I had reactions, so now he prescribed me opiates. I could not function or live without them. Now, with the pills my pain is a constant 5-6 instead of 15 plus!! (On a ten scale) so they make my life liveable- I can still function but not nearly to the degree I used to. I can’t work because some days I still can’t out of bed and I can’t exercise. I used to be a hardcore athlete who got a full ride to college for tennis, now I can’t only take brisk walks. I also try to eat well and eat high protein low carb low sugar. I don’t know if it helps but I try to stay healthy. It’s hard to be so limited. Do you struggle with any facial issues?
ALL I know is after years and years and years of trying everything. I still suffer with constant Redness and itching and flare ups. Even after I changed my diet and my meds. So even with the new drugs. I still have a Red and Itchy face!
I have been treated for rosace for over 20 years.A friend works with dermatologist so real agressive last few years with trearments…
IPL laser.solodyn, soolantra, metrogel and facial sunscreen micronized 50 zinc oxide. I have depression on wellbuterin for years…but my anxiety was going through the roof on me. When I would worry my face would flare in a few minutes with severe rosace attack despite all other treatments.I mean would flare so it FAST it was on fire burning…could only splash water ot cool with ice packs…then embarrassing anxiety would make redness worse. I called friend and asked her derm if he had heard of neurogenic rosace…said yea but he had no patients…another derm in same practice said had some luck with beta blockers for flushing. I did research and asked since my anxiety wa bad if I could I try gabapentin..said yes and it has been Fantastic… Face quiet for entire week..my skin that was always recovering from attack finally got a whole week where skin was quiet and feels smooth. I have less anxiety. and been sleeping like baby …blessing from God..thanked him mostly. Now one addition I am. washing face with ceteaphil at night put metrogel at night with zinc oxide and have slept with plastic wrap over my cheeks and nose….I think it has helped restore moisture barrier at night…family makes fun at my plastic wrap mask but has gotten use to it…my goal now 2 weeks no attack..wish me luck and blessing to all hope this helps.
Does it affect your eyes also? My eyes burn terribly–then when my face/eyes burn the most I have tinnitus.