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Thread: Anyone have Neurogenic Rosacea (nose swelling)

  1. #1
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    Default Anyone have Neurogenic Rosacea (nose swelling)

    Hi,
    My dermatologist says I have Neurogenic Rosacea (diagnosed last week, I am 21). He seems very knowledgeable about the condition, which surprises me as I can not find any real information about it on the internet.
    He emphasised that lots of people who have subtype 1 (erythematotelangiectatic) Rosacea actually have Neurogenic Rosacea, as the conditions have similar symptoms.
    He gave me a printout that states the differences to subtype 1 Rosacea and main symptoms of Neurogenic Rosacea:

    Brief summary of the printout( it is over 20 pages):

    Neurogenic Rosacea will start suddenly and severely, as a series of extreme flushing flareups(the nose is particularly affected). Flare ups begin as a tingling sensation followed by a feeling of pressure and then extreme flushing. Over 60% of patients reported their condition was first triggered by going to sleep which resulted in their first flare up. Unlike subtype 1, Neurogenic Rosacea causes instant and a greater degree of swelling and odema of the cheeks and nose during flare ups. The condition does not involve pustles or papules.
    On average patients reported suffering 2 flare ups EVERY day, one during the day and one when they go to sleep. In between flare ups the skin can return to normal in some patients.

    Differences between type 1 and Neurogenic Rosacea

    Subtype 1 starts mildly for months or years before it progresses.
    Neurogenic Rosacea will start suddenly, severely and acutely from the first day the person is affected.
    Neurogenic Rosacea starts as a series of extreme flushing flare ups and the skin can return to normal hours after each flare up.
    Type 1 has very mild swelling or no swelling.
    Neurogenic Rosacea always has swelling and edema, particularly of the nose.
    Over 60% of patients report that Neurogenic Rosacea is triggered daily by sleeping, and this trigger is unavoidable.
    -------------------------------------------------------------------------------------------------------

    Does else have this subytpe(or been wrongly diagnosed as subtype 1). If so what are you using to treat it? Every night when I go to bed, within 20 minutes of lying down I have a huge flare up of my nose, extreme swelling and flushing. The worst part is the swelling. When I wake up in the morning the redness is gone but my nose is still swollen. It takes around 2-3 hours after I wake up for the swelling of my nose to go down.
    My dermatologist told me at the moment there are no treatments available for this subtype, but he is going to research and find something that can help me.
    Last edited by Daens; 27th December 2015 at 07:29 PM.

  2. #2
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    I was wrongly prescribed mirvaso and it caused Neurogenic rosacea. My dermatologist says she can't treat me since the injury she caused me is neurological. But neurologists know nothing about it. So, I am injured with a medical disorder that is untreatable by any doctor.

  3. #3
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    Quote Originally Posted by TinyDancer View Post
    I was wrongly prescribed mirvaso and it caused Neurogenic rosacea. My dermatologist says she can't treat me since the injury she caused me is neurological. But neurologists know nothing about it. So, I am injured with a medical disorder that is untreatable by any doctor.
    Do you get nose swelling after a flare up and a severe episode of flushing every night when you go to sleep?

  4. #4
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    Yes. I get both of that! Only since using Mirvaso. I also have chronic neuropathic nerve pain in my nose, face, eyes. I'm very reactive to food. I have no food allergies. But when eating I get increased pain and flushing before I can even finish eating the food. Only since Mirvaso. I do now have a rash all over my face which appears to be neurogenic in origin a well. An immune response from Mirvaso. Whenever I lie down I experience extreme pain in my nose and eyes.

    Edit to add: Sometimes the nerve pain gets so severe that I can barely stand it. When that happens I end up getting a sore throat. I can't take pain meds. Mirvaso caused hypersensitivity to meds. Pain meds increase my pain.
    Last edited by TinyDancer; 28th December 2015 at 02:01 AM.

  5. #5
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    Quote Originally Posted by TinyDancer View Post
    Yes. I get both of that! Only since using Mirvaso. I also have chronic neuropathic nerve pain in my nose, face, eyes. I'm very reactive to food. I have no food allergies. But when eating I get increased pain and flushing before I can even finish eating the food. Only since Mirvaso. I do now have a rash all over my face which appears to be neurogenic in origin a well. An immune response from Mirvaso. Whenever I lie down I experience extreme pain in my nose and eyes.

    Edit to add: Sometimes the nerve pain gets so severe that I can barely stand it. When that happens I end up getting a sore throat. I can't take pain meds. Mirvaso caused hypersensitivity to meds. Pain meds increase my pain.
    Have you found any treatment that helps lesson the night flushes or nose swelling. I have tried tetracycline, Metrocream and Azelaic Acid. None of them have helped so far.
    It seems none of the regular Rosacea treatments others use on this board will work for Neurogenic Rosacea.

  6. #6
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    What is neurogenic rosocea???

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    Quote Originally Posted by ihavetoasky View Post
    What is neurogenic rosocea???
    It's hard to explain. You could look it up. Basically it's flushing that is triggered by neuropathic pain. It's more of a neurological disorder than a skin disorder. The pain levels are much more severe than the visible skin effects. It's a very rare sub type that has only recently been identified. They don't include it in the basic education and info.

    About the night flushing. I just have to stick to a very strict diet. Only lie down when ready to fall asleep and get out of bed as soon as I wake up. My neurologist prescribed Amitriptyline for the nighttime pain. I am not going to take it because it actually worsens the histamine intolerance and the flushing and the pathology behind it. Like most meds, they worsen the problems they claim to treat. Low dose antidepressants supposedly help the pain. This was caused by meds. I am terrified of meds. I will take the pain over the risk of making it worse. But, that's just me. Sometimes the pain causes me to feel suicidal, though. But, I get through it.

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    Do you produse less or more histamine? Is histamine hormon or?

  9. #9
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    Omg im sorry hope you get better what cozez it ? Can you take suplements? How can you treat it then

  10. #10
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    Histamine is an immune response. I am taking supplements. Naicinimide, calcium ascorbate (vit c), Quercetin, grapeseed, antioxidants. Some supplements make it worse. I'm just dealing with it and hoping I heal and recover from the medical injury. Some things just aren't treatable.

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