Although I have had rosacea for 20 years, I am still learning new things about it all the time. I try to follow knowledgable people so that I can continue to not only expand my understanding of rosacea, but so I can bring it to you as well. So when the lovely Dr Alia Ahmed sent me an email letting me know about a recent article she wrote for Consulting Room magazine, I was thrilled. I’d heard people mention Neurogenic Rosacea before but was pretty clueless as to what it meant…
It’s worth starting this post with an introduction to Dr Ahmed, as her expertise is key in this discussion. You may recognise her name as I interviewed her for this article for Refinery29 on why uninvited skincare advice can be harmful. She is a Psychodermatologist, which means she specialises in the psychosocial impact of skin conditions (something you all know I’m fascinated by!)
I can’t link to the Neurogenic Rosacea article itself because it’s not publicly available, but – with Dr Ahmed’s help – I have tried to paraphrase to make it a little more accessible for those of us without a medical degree… any errors are therefore mine and not Dr Ahmed’s!
SO, WHAT IS NEUROGENIC ROSACEA?
It’s a 5th subtype of rosacea, albeit a very rare one. Considering how much ‘regular’ rosacea is under-reported and under-diagnosed, this rare form will be even harder to diagnose. At first glance it may seem similar to subtype 1 (erythematotelangiectatic rosacea), but the neurologic symptoms are much more severe. Dr Ahmed summed it up for us:
“Neurogenic rosacea is a complicated and poorly understood phenomenon that is likely multifactorial (i.e. involving nerves, vasculature and the immune response both in the skin and systemically). It is associated with redness, and marked stinging or burning pain in the facial skin. These symptoms may be triggered by the application of products (e.g. makeup). The neurogenic subtype is also quite resistant to standard treatment for rosacea, so patients have often tried several medications with little positive change.“
The features of Neurogenic rosacea combine classic rosacea symptoms with prominent neurologic symptoms. Patients can also experience the following:
- Stinging or burning pain (often out of proportion to physical signs of rosacea);
- Itch;
- Oedema (swelling);
- Dramatic facial redness;
- Profound psychological symptoms;
- Failure to respond to standard treatments.
Other associated neurological and psychiatric conditions that seem to feature alongside neurogenic rosacea include (but are not limited to):
- Complex regional pain syndrome;
- Essential tremor;
- Depression;
- Obsessive-compulsive disorder (OCD);
- Headaches;
- Rheumatological disorders (e.g. lupus, rheumatoid arthritis, fibromyalgia, mixed connective tissue disease, or psoriatic arthritis)
Dr Ahmed’s article also had a whole section with some absolutely fascinating information on the potential reasons why a rosacea sufferer’s skin might work differently to the average person and why someone with Neurogenic rosacea might in turn experience these symptoms more severely. It was very interesting … but incredibly technical! Thankfully, Dr Ahmed kindly rewrote it for us:
“The receptors responsible for detecting pain, temperature and taste are known as Transient Receptor Potential channels (TRP). People with rosacea have an increased number of some of these TRPs in their body. This results in hyper-reactivity or sensitivity to temperature change and flavour (e.g. spice) that may trigger symptoms of rosacea, as well as an increased likelihood to experience the itching/burning pain that is commonly reported by patients with neurogenic rosacea. Once activated, these channels release chemicals in the body that aggravate inflammation, as well as causing blood vessels to swell and become more open. This manifests as redness, swelling and flushing seen in rosacea, which can become a vicious cycle and cause persistent symptoms.
It is suggested that skin affected by rosacea has a lower heat/pain threshold than ‘normal’ skin, and is therefore more likely to react to these triggers. The nerves responsible for detecting and modulating these reactions are present in higher numbers over smaller areas (such as the face) in rosacea patients.
The immune systems of people with rosacea may also play a role in the symptoms. It is suggested that the immune systems of such patients are more likely to react to stimuli that other people’s bodies could ignore. For example, an enhanced reactivity to the demodex mite (which we all have!), that is implicated in the pathogenesis of rosacea.
Stress is also thought to play a role in causing or worsening facial flushing through the sympathetic nervous system response (i.e. preparing the body for ‘fight or flight’).“
TREATMENT FOR NEUROGENIC ROSACEA
So how should you go about getting treatment for this condition? Dr Ahmed shared some great advice with me:
“I would suggest that initially the patient should see their GP and make them aware of the fact that they think they may have this rare subtype of rosacea, which might act as a trigger for referral to dermatology. Psychodermatology services are not always local to patients, they can ask their GP if they are aware of any or (if they are willing to travel) patients can be referred to our tertiary clinic at the Royal London Hospital.
If a patient is already under a dermatologist and not experiencing much improvement, they should do the same: make the treating dermatologist aware of the neurogenic subtype and ask for a specialist referral to psychodermatology. It is always worth discussing with your healthcare practitioner the way your skin condition is making you feel and the impact it has on your life, this is a further indication for specialist referral.
As there are so many complex, interplaying factors causing or driving the mechanisms that lead to the symptoms of rosacea it makes sense that people will vary in the number and intensity of symptoms. Neurogenic rosacea seems to be one of the subtypes, in my experience, that is affected by this as people have very differing presentations. They do respond to treatment but often require more of an individualized approach. This is definitely not a ‘one size fits all’ treatment plan. It is also very possible that it will take some time before large improvements can be seen, but they certainly are possible.“
When it comes to the treatment of neurogenic rosacea, this depends on the individual and the symptoms they are experiencing. Options include:
- Neuropathic agents;
- Antidepressants;
- Endoscopic thoracic sympathectomy (for debilitating facial flushing).
Additional psychodermatological management options are similar to those recommended for all rosacea patients, including:
- Stress reduction techniques (e.g. breathing exercises, relaxation therapy);
- Cognitive behavioural-based interventions (e.g. mindfulness, management of social anxiety);
- Addressing lifestyle factors (e.g. nutrition, exercise, sleep, relationships);
- Finally, physically cooling the skin (for example with fans, cold compresses or ice) can be helpful in controlling symptoms.
I hope you found this as useful and interesting as I did – please do follow Dr Ahmed on instagram if you would like to be kept up to date with her work.
Looking for some next steps?
- Sign up for my SUBSTACK: this is where I do all of my rosacea writing these days.
- Follow me on INSTAGRAM for lots of rosacea updates.
- Get more information on rosacea and my journey so far in my ROSACEA FAQ POST.
- Join my private rosacea FACEBOOK GROUP.
- And I’ve linked my digital downloads designed by me to help you get to grips with your rosacea: grab the Rosacea Trigger Checklist and the Rosacea Flare Up Diary.
Lex
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