Neurogenic Rosacea: a new subtype for those with dysfunctional facial nerves

Written by on February 2, 2011 in neurogenic rosacea, What Causes Rosacea? with 22 Comments

erythematotelangiectatic rosacea

A just-published paper in the Archives of Dermatology is calling for the recognition of a new rosacea subtype – Neurogenic Rosacea.

Standard forms of rosacea

In 2002 the National Rosacea Society sponsored Rosacea Expert  Committee proposed the existence of 4 main rosacea subtypes. Rosacea sufferers are familiar with the designations of Erythematotelangiectatic, Papulopustular, Phymatous and Ocular Rosacea. The subtypes were based on the most common patterns or groupings of symptoms.

The so-called Standard Classification of Rosacea was written as a starting point to facilitate the development of ways to diagnose and treat rosacea. The committee has always been open to updating the classification system.

Standard classification of rosacea:

FUTURE

As a provisional standard classification system, it is likely to require modification in the future as the pathogenesis and subtypes of rosacea become clearer, and as its relevance and applicability are tested by investigators and clinicians. The committee welcomes reports on the usefulness and limitations of these criteria.

The expert committee noted that the subtype definitions were independent of understanding what causes rosacea to develop, as this is still an active area of research.

Time for a New Subtype

Now a group of 6 doctors and researchers is proposing a new subtype. This paper describes their conclusions after describing “14 patients with rosacea and prominent neurologic symptoms that represent another distinct subset of rosacea meriting a unique approach to management”.

The researchers are proposing a new group of rosacea symptoms that might at first glance seem quite similar to subtype 1, 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”.

This proposed subtype is based upon strikingly prominent neurologic symptoms.

One of the authors, Kevin C. Wang MD PhD, kindly provided a copy of this article in order to write this and further reviews.

Neurogenic Rosacea: A Distinct Clinical Subtype Requiring a Modified Approach to Treatment

Tiffany C. Scharschmidt, MD; John M. Yost, MD, MPH; Sam V. Truong, MD; Martin Steinhoff, MD, PhD; Kevin C. Wang, MD, PhD;Timothy G. Berger, MD

Arch Dermatol. 2011;147(1):123-126.

Rosacea is generally categorized into 4 distinct clinical subtypes: erythematotelangiectatic, papulopustular, phymatous, and ocular. Granulomatous rosacea, rosacea fulminans, and perioral dermatitis have been described as additional variants.  Herein we describe 14 patients with rosacea and prominent neurologic symptoms, who represent another distinct subset of rosacea meriting a unique approach to management.

Methods
Patients with prominent neurologic symptoms in addition to classic features of rosacea were identified during routine appointments at a major teaching hospital. Details regarding medical history, disease symptoms and triggers, and response to treatments were obtained via clinic visits and telephone interviews. The study was approved by the institutional review board of the University of California, San Francisco.

Comment

We propose that this group of patients with strikingly prominent neurologic symptoms represents an under recognized subgroup of rosacea that we term neurogenic rosacea. By highlighting and formally naming this subgroup, we hope to increase awareness and recognition of these patients and aid the practicing dermatologist in their therapeutic management

Financial Disclosure

Dr Steinhoff serves as a consultant for and holds a research grant and patent with Galderma.

Dr Berger is a consultant for Prescription Solutions and serves as a nonsalaried principal investigator in other research studies involving GlaxoSmithKline, Clinsys Clinical Research Inc, Merz Pharmaceuticals, and Pharmanet.

A Good Idea?

What do you think? Is rosacea already complicated enough that another subtype is only going to make diagnosis and care trickier? Alternatively are you pleased to see these neurological symptoms get their own label?

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About the Author

About the Author: David Pascoe started the Rosacea Support Group in October 1998. .

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22 Reader Comments

  1. EDP says:

    Interesting article…were the specific neurological symptoms listed? If so what were they?

  2. Doug says:

    So what are the neurological symptoms?

  3. Mike says:

    I am somewhat surpised and also quite offended by this only very recent article.

    It has now been fairly well known and established for some time now in some circles at least, that this very same and very debilitating subtype has been acknowleged also as being called “neuropathic” rosacea, which i know that i have lived and suffered with in increasing intensity for quite some years now and for which i have not found any adequate relief, from either from myself or any dermotologist that i have seen who has any experience in dealing with rosacea in any of its forms /subtypes, ..let alone in locating any so called “Rosacea Experts” here in Australia that may be familar with it and also recognise it!

    The symptoms are varying in their degree of intensity and frequency, but most include mild to moderate, to perhaps even extreme neuropathic burning pain in the facial nerves with the prolonged burning and flushing episodes, with or without any noticable rednesss (erythema) and /or noticebale or non noticeable telangiectasia (broken capillaries.)

    It is a subtype that is very difficult if not often impossible to adequately manage, with or without the other subtypes that may coexist with it!

    best regrds Mike Briggs

  4. Chopsy M says:

    I’m not sure I understand the difference between someone with several currently recognized sub-types AND a history of depression/anxiety/chronic pain and someone with the neurogenic type.

    Is the implication that there is some underlying neurological malfunctioning behind the Tormented Tomato Face we have come to know and… well, not exactly love… and conditions that are usually dumped into the “Psychiatric” bag? A neurological malfunctioning that not only includes the burning, stinging and other assorted pain, but includes the flushing and capillary damage as well?

    As someone who has had a lot of facial and bodily pain, including monstrous headaches, I find this new classification very interesting. I have been wondering about the connection, especially since seeing a much higher than usual incidence of rosacea in a room full of people with ME/Chronic Fatigue.

    And, frankly, it would make a change to have a nice new shiny label to cover most of the horridness in one go. (Though my spots and granulomatous neck and chest appear to be extra…)

    A new label means new drug research and more money for Galderma, so maybe they will finally come up with something to take the blasted pain away, instead of leaving us to the mercy of expensive companies touting “soothing” creams for “sensitive skin” that don’t do anything, or make the matter worse.

    Chopsy

  5. vanessa says:

    I’m interested to read about a higher prevalence of rosacea among people with ME/chronic fatigue syndrome being an ME sufferer myself with rosacea. Does anyone out there know any more about a link between the two conditions?

  6. Carol says:

    Although I am fair skinned, I never got rosacea until after I was in an auto accident and had severe whiplash; I was told many years later by an orthopedic surgeon that the whiplash effect could have caused vascular changes (instability of the facial blood vessels). The flushing began about three months after the accident; I was tested for early onset menopause and a host of other endocrine disorders but to no avail. I was finally able to control the flushing by taking a beta blocker. I’ve had a host of other disorders affecting facial nerves, mainly the trigeminal and the vagus nerves possible due to contracting Lyme and H pylori at different times in my life. I suffered from nerve inflammation in the teeth (I have had several root canals), sinusitis (finally resolved through surgery) and parotid gland surgery. Currently I don’t have so much of a problem with flushing but with stinging, burning, itching and dryness, all of which would fit (in my opinion) with disorders to the facial nerves. As a matter of fact a recent dermatologist told me he thought the itching on the left cheek was a residual effect due to slight damage to the one of the facial nerves due to the parotid surgery. I’ve always felt that both hormonal and vascular effects were major contributors to rosacea. So I view “neurogenic” as relating to the cranial nerves.

  7. Mitzy says:

    I was in a car wreck in 2001 and had we hit very hard. It distroyed the way I feel. I had whiplash. I have a bad case of Rosacea. I get horrible flare ups every two months. I don’t want to live this way anymore. I also have muscle tightness in my face. It is painful. I don’t know why I have all of this. What is wrong with me?
    I have been to so many ER’s, dermatologists, and doctors. No one can get the flares to go away. I can’t take antibiotics they give me bad yeast infections.
    I wish there was something I could take. I had a woman ask me the first time she met me, did I have parkinsons disease. She said I have that no facial expression flat stare look on my face. It is painful to move my face. IT’s stiff feeling. Maybe I have more than Rosacea. Please help!!

  8. Christine says:

    Approximatelly 5 years ago, I fell backwards, striking the backside of my head, and experienced a tbi & neck injury. Since it was Worker’s Compensation, the doctor allowed me only two days off to heal, and then back to work. Over the next 18 months, I tried to do my job, but was unable, and finally went out on State Disability due to what had now become “severe & chronic pain.” My symptoms share many of the characteristics of “Complex Regional Pain Syndrome,” however my neurologist called it a “Central type pain,” due to my head trauma. To make a long story short I
    experienced a full body reaction to my pain, and developed severe “facial flushing.” Everytime my pain was not under control, or I would take a hot bath, or endure stress, my blood pressure would shoot up through the roof, and I would develop the facial flushing, as well as tachycardia, dizziness, & a very dry mouth. I was told that I have “Autonomic Dysfunction,” from my trauma. I was also told by my dermatologist that I had rosacea, however, I have done much research, and the only rosacea it fits would be “neurogenic rosacea.” I am 55 years old, and have never had rosacea or facial flushing like this, prior to my injuries. I do encourage the doctors to continue research in this area, as I have had a very difficult time getting a proper diagnosis, so I know it must be equally hard for others.
    The reason I am sharing my story is because I hope that my experience will shed some light on what can go on after trauma, and help put some of the pieces of the
    puzzle together. Good luck to al those out there that are looking for answers. I understand your frustration & pain.

    [;’/[]
    hing hospital) forced me back to work before I was ready (they gabe me=,ll.,llllllllllll.

  9. Leslie says:

    Finally! I have long thought it peculiar that my raynouds, (described to me as a neurovascular condition in which the blood vessels in my hands and feet are triggered by external and emotional factors), my occasional occular migranes (described to me as a neurovascular condition in which the blood vessels in my eyes are triggered by in this case unknown factors – at which point I lose vision), and my newly diagnosed rosacea (described to me as a neurovascular condition in which the blood vessels in my face are triggered by external and emotional factors) are not seen as connected. It makes no sense that these conditions are not related. I am also interested in the idea that depression might also be linked, as I have battled with it too, although undiagnosed and untreated. I am thrilled to hear that these relationships are being studied and that there may be relief in site.

  10. gritzle70 says:

    Have you ever suffered from any trauma to the head or the neck, more specifically a concussion or whiplash from an auto accident or a fall. I suffered from severe whiplash about 35 years ago from an auto accident; a few months later I started to have problems with flushing, headaches, etc. Head trauma, especially a misaligned C1/C2 vertebrae puts stress on the brain stem which controls all kinds of bodily functions such as control of body temperature, blood pressure, digestion, etc. When you suffer from whiplash, you cause trauma to the blood vessels and nerves in the head and neck; I’ve had it all — sinus problems, TMJ, flushing, Reynauds’ symptom, etc.

  11. Leslie says:

    Yes, I was in an auto accident that resulted in severe whiplash about 18 years ago. I had Raynoud’s before the accident, though – since childhood (although not diagnosed until after the accident). I am currently wearing braces to correct TMJ. I could see how the ocular migranes may have resulted from trauma; both the accident and snow boarding later. If some of these vascular conditions result from head or neck injuries, then is it possible to correct the problem?

  12. David Pascoe says:

    Comments via email from Carol.

    “I developed Raynoud’s after my auto accident; the migraines finally stopped once I started taking a beta blocker; beta blockers affect blood vessel contraction and dilation; so the flushing went away, too. I was told that my flushing was from rosacea but looking back, I think it was from the whiplash”

    and

    “Find yourself a good chiropractor who specializes in upper cervical spine. Whiplash causes the C1 and C2 vertebrae to go out of alignment and it affects the brain stem. I was in two auto accidents and I had two bad falls; one resulted in a concussion when I slipped on the ice and hit the back of my head in the occiupt area; I had TMJ, ear problems, sinus problems, flushing, hormonal problems, etc. I just recently started this treatment; an orthopedic surgeon told me that whiplash traumatizes the blood vessels in the head and neck; after my accident I started having migraine accidents and flushing (the brain stem controls temperature regulation as well as most vital functions).

    http://www.atlasorthogonality.com/PatientSite/aboutAO.html

    The above is only one technique

    Whenever I hear about “neuromuscular rosacea” I wonder if the doctors ever considered whiplash; I mean, after all, how “neuromuscular” can you get.

    Good luck.”

  13. Nancy says:

    I was one of the Rosacea patients at UCSF under Dr. Steinhoff’s care. He diagnosed me with neurogenic Rosacea. The pain in my face was so bad I could not function ( it’s like having Diabetic nerve pain but it’s in your face). What works for me is Amitriptilyne (50 mgs. before bed) and a beta blocker (Propranolol) through out the day to calm the sympathetic nervous system down – which also helps control my blushing. This is a real and horrible condition but now, for me, it’s manageable.

    • Ethel says:

      Are you still taking these meds? I have Neurogenic Rosacea but my Derms did not diagnose me. I did. My Neurologist wanted me to take Elavil but I have been very nervous to take it. I am taking about 1800 mg of Neurontin per day and have been considering taking Lyrica. I have been withdrawing from a drug called Baclofen for severe spasms in my legs which I developed. Now the spasms seem to have subsided and I started weaning off the backlofen and the next thing I knew I had burning and stinging and a few papules and very little redness. the burning and stinging increased and now I have it 24/7 hence the Neurontin. I am hoping you are doing much better and do not need these meds any longer. please let me know as I am really frustrated. thx, Ethel

      • Nancy says:

        Hi Ethel – Yes, I am still taking Elivel (Amitriptilyne) and a beta-blocker Propranolol for blushing. I’ve been on these two meds. for 5-years now. I tried to get off Elivel once but the pain in my face came back and was too intense to function. I feel fine on the meds. and am grateful to have access to them.

        • Ethel says:

          Hi, I have been off line for awhile so forgive my lack of replying. I wonder about your side affects with Elavil. Do you have any side effects? I thought the Propranolol was for just flushing? You mentioned it seemed to calm the sympathetic nervous system…so does it help with the pain?? Did you have a trauma that set off the Neurogenic Rosacea? I came off some meds that I was on for years and needed muscle relaxants to help combat the withdrawal symptoms….severe muscle spasms in my legs. Then I started feeling better so started titrating maybe too quickly from the muscle relaxer and the next thing I knew I had the facial pain. It started slowly and then increased daily. I have been on Neurontin and Lyrica was also on the table but I opted for the Neurontin. Lyrica has a lot of side affects including major depression and I am afraid if I get on a higher dosage and want to titrate, I will be in a mess. I had been on Neurotin years ago for other issues and was able to titrate fairly easily. The pain is dulled but it is still pretty debilitating. Is your doc a neurologist or Pain Management doc? I am still coming down off the muscle relaxer and have 10 mg to go. I am coming down 5 mg every 5 weeks as I am frightened to do it any quicker. I will be off the muscle relaxer by March. Have you any other sites of other people with neurogenic Rosacea? It is the best kept secret as even the two Dermatologists that I saw had no idea of what it was. Thx so much and I am glad these meds are helping you and you are functioning well. Best and I looked forward to hearing from you. Ethel

          • Nancy says:

            Hi Ethel, to answer some of your questions, I had a severe reaction to Metrogel in 2006 that caused tremendous pain/burning in my cheeks wear I applied the Metrogel and the pain never went away. The Rosacea went from mild to very serious. My local Dermatologist sent me to see the head of Dermatology at UCSF in California and he took me under their care and introduced me to Dr. Martin Steinhoff who diagnosed me with Neuropathic Rosacea. I am still visit the Dermatology clinic but since I now have a treatment plan that manages my condition, I see UCSF 1-2 times a year for follow-up. Along with using Elavil and Propranolol, I wash my face with CeraVe Face Wash and also use CeraVe cream and lotions. Dr. Steinhoff introduced me to Hibiclens (an antimicrobial face wash) which I pat on my face twice a day, leave on my face a few minutes then rinse off. I use Soolantra at night and Vani-Cream sunscreen daily. I feel very high maintenance but it’s a system that keeps me functioning in the world. Once I apply my mineral face powder no one knows I have such a severe case of Rosacea. The mineral powder really covers the redness but allows my skin to breath so it doesn’t trap the heat in my face. I can out blush anyone! I find that only the major teaching hospitals who study skin diseases really know how to treat severe cases of Rosacea or are even knowledgeable about current treatment options. So many Detmatologists focus on cosmetic procedures or looking at moles for cancer that they’ve lost focus on actually treating chronic skin conditions. They only know the basics.

    • Ethel says:

      Hi Nancy,
      Thx so much for your response. Is Dr. Steinhoff still in SF? On another forum someone was saying he moved to Europe. I looked at his study that he and 4 other docs did about the Neurogenic Rosacea. Actually, it would be lovely to speak with you directly. You are right on the money in terms of the Dermatologists. The Dermatologists really are clueless about the Pain (burning and stinging). They are exactly what you said in terms of their own little worlds. I cannot believe how they are not current. Then even when you look on line, you see burning and stinging as a symptom,,,all the time. Even when the subject of Neurogenic Rosacea was broached to two different Derms and a NP in the Derms office, they looked bewildered. Their advice was to see a Neurologist. Also, Nancy, it is so amazing about what you said about the Metrogel. The skin is sand paper like after use and the tingling is a definite even after not using it for a couple of weeks. Hence have discontinued use really. I am giving you my email. You are on the west coast and I am on the east coast, I live 20 minutes from Boston. My email is ebchiminello@gmail.com. This could connect us even better. Thx again and enjoy your holiday. 🙂

    • V. B. says:

      Does the beta blocker make your eyes dry? I have ocular rosacea also with severe dry eyes. I’ve had rosacea for 20 yrs., but ocular rosacea has worsened in past few years and an emotional upset seems to have triggered the burning and stinging in my central face and eyes.

  14. Laurie Zuniga says:

    I was diagnosed three years ago and still haven’t found the right meds does anyone have it on left side of face more then right side any comments will help .
    Thanks

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