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Thread: Neurogenic Rosacea Need HELP

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    Exclamation Neurogenic Rosacea Need HELP

    First time poster. I have been following this forum from afar and have enjoyed any tips or recommendations made that might help my debilitating condition. I started periodically flushing in 2015 but nothing major at all. At the beginning of 2018 my condition got our if control. In trying to make this to the point, I have been followed by two dermatologist. One with 42 years experience at at university in Chicago. The other 42 years experience at a university in Florida where I reside. They have done face biopsies. They have done every test possible to rule out other causes. Carcinoid, mastocytosis, pheo., Lupus, other auto immune diseases and cancer related causes. I also was checked for small fiber neuropathy. All tests came back negative, except my blood platelets have been ever so slightly elevated but after seeing a hematologist for further workup and blood work, I was diagnosed with reactive thrombocytosis all related to my face. So, finally they agreed with me that I had Neurogenic Rosacea. I was their first case ever. I suffer my main trigger 24 hrs a day and that is heat or any slight change in temperature (even1 degree). I carry a handheld fan and small spray bottle everywhere I go. I am constantly trying to keep the major flares at bay by spraying and fanning everywhere I go. Iím sure I look like a freak at the grocery store, thatís if I can even make it there. I hired a girl to help me drive my four kids to activities and she also irons for me along with cooking because the heat hits me like a ton of bricks. I also avoid bright lights and computers. I have major flares very often and I have yet to see anything as bad as my face. It swells at almost every flare. My ears are affected too. It takes hours to calm a flare. I sleep with two fans on my face. One on each side. I also put a gel pad in my pillow case along with small round ice packs which I sleep on the cloth side so not to get frostbite. I switch out the gel pack and ice packs in the middle of the night. I have a freezer in my bedroom. I started taking clonidine two months ago with some success. I was initially on 0.1 mg three times a day. Then increased to 0.2 then 0.3. It stopped helping me at the 0.3 level. I have a call into my dr and he is going to start me on propanolol. I also do the ketamine, amitryptiline and lidocaine cream with very little improvement. I feel completely hopeless that I will never be able to tolerate any temperature without my fans and spray bottles. I just want to be normal again and I fear that that will never happen. I remember a couple of people posted about a pain dr. and using IV lidocaine. Also, in my depression, I put on 60 in a year. I am in the process of trying to get that off but donít want medications that cause weight gain. Sorry, to be so lengthy but I just want help. Anyone please any advice would be truly appreciated. This is such an under recognized condition that is completely life altering.
    Thank you all in advance. I hope I posted correctly because it is my first.

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    Quote Originally Posted by Ange4 View Post
    First time poster. I have been following this forum from afar and have enjoyed any tips or recommendations made that might help my debilitating condition. I started periodically flushing in 2015 but nothing major at all. At the beginning of 2018 my condition got our if control. In trying to make this to the point, I have been followed by two dermatologist. One with 42 years experience at at university in Chicago. The other 42 years experience at a university in Florida where I reside. They have done face biopsies. They have done every test possible to rule out other causes. Carcinoid, mastocytosis, pheo., Lupus, other auto immune diseases and cancer related causes. I also was checked for small fiber neuropathy. All tests came back negative, except my blood platelets have been ever so slightly elevated but after seeing a hematologist for further workup and blood work, I was diagnosed with reactive thrombocytosis all related to my face. So, finally they agreed with me that I had Neurogenic Rosacea. I was their first case ever. I suffer my main trigger 24 hrs a day and that is heat or any slight change in temperature (even1 degree). I carry a handheld fan and small spray bottle everywhere I go. I am constantly trying to keep the major flares at bay by spraying and fanning everywhere I go. I’m sure I look like a freak at the grocery store, that’s if I can even make it there. I hired a girl to help me drive my four kids to activities and she also irons for me along with cooking because the heat hits me like a ton of bricks. I also avoid bright lights and computers. I have major flares very often and I have yet to see anything as bad as my face. It swells at almost every flare. My ears are affected too. It takes hours to calm a flare. I sleep with two fans on my face. One on each side. I also put a gel pad in my pillow case along with small round ice packs which I sleep on the cloth side so not to get frostbite. I switch out the gel pack and ice packs in the middle of the night. I have a freezer in my bedroom. I started taking clonidine two months ago with some success. I was initially on 0.1 mg three times a day. Then increased to 0.2 then 0.3. It stopped helping me at the 0.3 level. I have a call into my dr and he is going to start me on propanolol. I also do the ketamine, amitryptiline and lidocaine cream with very little improvement. I feel completely hopeless that I will never be able to tolerate any temperature without my fans and spray bottles. I just want to be normal again and I fear that that will never happen. I remember a couple of people posted about a pain dr. and using IV lidocaine. Also, in my depression, I put on 60 in a year. I am in the process of trying to get that off but don’t want medications that cause weight gain. Sorry, to be so lengthy but I just want help. Anyone please any advice would be truly appreciated. This is such an under recognized condition that is completely life altering.
    Thank you all in advance. I hope I posted correctly because it is my first.
    Clonidine didn't work for me either. Unfortunately it's trial and error. My advice would be to focus on the discomfort part of it with neuropathic pain meds first. My derm has told me in the past he gets 3/4 success rate (trial and error per patient) amongst gabapentin, lyrica, amitriptyline, cymbalta, baclofen, mexiletine; then liking propranolol ER for the vascular component. One caveat is that lyrica can trigger depression esp. in women.

    https://erythromelalgia.org/wp-conte...Y5hYJkzPnZ6LiQ - I think this has a very good outline of treatments. The treatments overlap.

    Other things that might help - birth control, mirtazapine, clonazepam, chronic pain therapist, aspirin (esp. if platelets are high).

    I think an SNRI might be helpful for you in terms of depression.
    Wellbutrin is an antidepressant that is associated with weight loss. Topamax is associated with weight loss as well, but I think that might impact your face positively or negatively.

    I am sorry you are suffering.

    Can I ask out of curiosity -

    Was there any trigger for you? Hormones, injury/infection/illness, medications (many people have symptoms after medications that can induce neuropathy, eg ciprofloxacin ... I know you said you tested for small fiber neuropathy, but there are currently no good ways to test for small fiber neuropathy present in face yet ... )
    Do you have migraines?
    Do you have primarily heat-intolerance only, or other triggers like "time of day" (evening and afternoon flares)?

    PS - don't beat yourself up about gaining weight during this difficult time. Anyone would have trouble coping. I'm guessing you're doing the best you can (w/ 4 kids, no less)
    Last edited by laser_cat; 23rd April 2019 at 07:16 PM.

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    Thank you Laser Cat so much for replying so promptly. I was hoping that you would reply. I have been following your posts with all the information that you have given for the past couple of years. It is been very helpful. I need to add a few things that I forgot to put in my first post. I am on aspirin per my hematologist. I also take alpha Lipoic acid. I did for IPLs last summer with no relief. Actually, I feel that my skin worsened after that. I also did the Botox like you were talking about in an earlier post which did not help me unfortunately. I also had a couple bouts of Raynauds this past fall. Very minor white fingertips with no pain. I will say that at my worst flares, it feels as if someone is pouring acid on your face for hours and hours on end.
    I am 52 and postmenopausal by almost 10 years. Menopause wasnít comfortable but I would take that any day over what Iím going through now. I wouldnít say that Iím going through a depression anymore I would just say Iím going through a difficult time in finding treatment and hope. I love cold-weather but there has to be a breeze in order for me not to use a fan. The problem with cold-weather is when I go back indoors the regular temperature will provoke a flare. As I said I went through menopause and the only thing Iím on right now for hormones is my progesterone Troche which I take five days a week. Are used to be on a testosterone and estrogen cream but my labs have shown that my testosterone estrogen were a little high so I came off those. I do not get migraines. My heat intolerance is 24/7. My emotions will sometimes provoke a small flare. Sometimes if I bend over I may have a small flare. I am burning heart in my face and sometimes my ears all day long unless I am constantly spraying my face or fan in my face. In the evenings I do get more of a flare with swelling. My downstairs temperature is set at 70įF in my upstairs temperature is set at 68įF.

    I have asthma so I used to get a lot of respiratory infections years ago and I would take Ciprofloxin for them. I have not taking that medication for a least three years.

    I hope you donít mind but I have a list of questions I want to ask you now. I would like to get more information about the lidocaine IV therapy. Is it something that you do often and if so how often to get relief? How long do you have to continue this for relief? Is it something that will help our nerves improve over time? I noticed you said it helped you with your heat sensitivity.

    Did you have any weight gain with any of the medications that you were tested along the way? If so which ones? Do you think nerve blocks could help our condition? For me, but he comes first then the flashing and then the pain. Is that same for you? Does it sound like my nerves are involved if I have that order of discomfort?

    Compared to your worse when you first were diagnosed with this condition on a scale of 1 to 10 it being at 10. Where would you say you are now on average with your condition? Do you still have heat intolerance? Could you tell me what the regiment is that you take now for comfort and relief?
    Thank you so much for all your help and I look forward to hearing from you soon with hopefully some solutions and hope that this condition doesnít have to stop your life.
    I just thought of one more thingÖ You said earlier and one of your post that you could not work anymore. Is that still the case? Are you able to go out and do things or are you a prisoner of your home like I am now?

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    I wanted to correct something that came out wrong as a typo on my earlier post. For me, heat comes first then the flushing and then pain.
    Thanks.

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    Quote Originally Posted by Ange4 View Post
    Thank you Laser Cat so much for replying so promptly. I was hoping that you would reply. I have been following your posts with all the information that you have given for the past couple of years. It is been very helpful. I need to add a few things that I forgot to put in my first post. I am on aspirin per my hematologist. I also take alpha Lipoic acid. I did for IPLs last summer with no relief. Actually, I feel that my skin worsened after that. I also did the Botox like you were talking about in an earlier post which did not help me unfortunately. I also had a couple bouts of Raynauds this past fall. Very minor white fingertips with no pain. I will say that at my worst flares, it feels as if someone is pouring acid on your face for hours and hours on end.
    I am 52 and postmenopausal by almost 10 years. Menopause wasn’t comfortable but I would take that any day over what I’m going through now. I wouldn’t say that I’m going through a depression anymore I would just say I’m going through a difficult time in finding treatment and hope. I love cold-weather but there has to be a breeze in order for me not to use a fan. The problem with cold-weather is when I go back indoors the regular temperature will provoke a flare. As I said I went through menopause and the only thing I’m on right now for hormones is my progesterone Troche which I take five days a week. Are used to be on a testosterone and estrogen cream but my labs have shown that my testosterone estrogen were a little high so I came off those. I do not get migraines. My heat intolerance is 24/7. My emotions will sometimes provoke a small flare. Sometimes if I bend over I may have a small flare. I am burning heart in my face and sometimes my ears all day long unless I am constantly spraying my face or fan in my face. In the evenings I do get more of a flare with swelling. My downstairs temperature is set at 70įF in my upstairs temperature is set at 68įF.

    I have asthma so I used to get a lot of respiratory infections years ago and I would take Ciprofloxin for them. I have not taking that medication for a least three years.

    I hope you don’t mind but I have a list of questions I want to ask you now. I would like to get more information about the lidocaine IV therapy. Is it something that you do often and if so how often to get relief? How long do you have to continue this for relief? Is it something that will help our nerves improve over time? I noticed you said it helped you with your heat sensitivity.

    Did you have any weight gain with any of the medications that you were tested along the way? If so which ones? Do you think nerve blocks could help our condition? For me, but he comes first then the flashing and then the pain. Is that same for you? Does it sound like my nerves are involved if I have that order of discomfort?

    Compared to your worse when you first were diagnosed with this condition on a scale of 1 to 10 it being at 10. Where would you say you are now on average with your condition? Do you still have heat intolerance? Could you tell me what the regiment is that you take now for comfort and relief?
    Thank you so much for all your help and I look forward to hearing from you soon with hopefully some solutions and hope that this condition doesn’t have to stop your life.
    I just thought of one more thing… You said earlier and one of your post that you could not work anymore. Is that still the case? Are you able to go out and do things or are you a prisoner of your home like I am now?
    I am so sorry again this has taken over your life in the way you describe. Pls know you are not alone in your experience.

    1) lido iv - it helps me, but there is no universal treatment that will help everyone. My pain doc recently ordered every other wk lido iv's (1 hr) and we'll see how that goes, before considering weekly lido iv's at maybe double dose. Each 1 hr iv gives me a few days where I have much improvement in tolerating external temps. I do know people who weren't helped, and others who were helped. Sometimes this can reset nerves, but for me I'll probably have to do it continuously and as part of a polypharmacy approach.

    2) I stress eat at times so honestly any weight gain I had, I would blame from binge-eating behaviors that I resorted to. The meds to watch out for in terms of weight gain .. unfortunately would be a lot of them - mirtazapine (mainly the 15 mg dose, as you go higher there is less potential for weight gain), gabapentin, lyrica. But everyone's different. I think if you dip your toe in, you might be able to handle a low enough dose (except mirtazapine, I think you can go pretty much right to 30 mg). Propranolol caused a bit of weight gain for me (slowed my metabolism) but I think the payoff of that one for you might be worth it to try.

    3) Stellate ganglion block might be worth a try but I would try meds first, just because they are lower risk. Also, I don't hear of SG blocks being significantly helpful to anyone for long term relief.

    4) Sometimes people flush and they don't have any pain or sensation. So something abnormal is happening with your nerves, I think, if you are feeling acid-like sensations at your worst. There is a paper on EM that generally says, they don't know which can come first - the sensory nerve abnormality, or the vasculopathy, and it is probably patient dependent -- but also what may start as one might end up involving both. The sympathetic nerve component also can get involved (likely at least a factor) and becomes an amplifier in pain / blood vessel response (propranolol helps partially with this). I don't know if the blood vessel response being a more obvious event before the burning pain response, is significant.

    I think the fact that laser was not helpful for you , might be indicative of a neurological element.

    5) I was at my worst maybe 8 mo after my onset. A yr ago, I was able to do most things (not cured), and doing some contracting work. Since I missed a botox round last summer it has been an uphill climb to get a foothold again -- for myself i know it's a slow, iterative process to get 0% better, then 5% better, then 10% better, etc. (with any med, not just botox). I am definitely in the 1/4 fraction I mentioned above (well, I mentioned the 3/4 fraction above - i am not in that group for sure lol). I am maybe 40% better (high dose cymbalta, botox, mirtazapine for sleep and lying down) - but I also think we are a bit different in symptoms (time of day symptoms are actually my biggest thing, not heat, although heat's a problem too), you might be more like Nat007, who is so helpful and kind - might be worth it to shoot her a message.

    Best of luck to you. A big part of this is devastating bc the medical community has no clue - so pls know that I understand.

    If you can't tell i have a little hobby I guess of tracking sub-phenotypes of flushers/burners, like who responds to what etc. So thanks for humoring me with my questions!

    Best,

    Lizzy
    Last edited by laser_cat; 24th April 2019 at 09:58 PM.

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    Lizzy, thank you again. I am so old and out of touch with technology that I couldnít find the reply button. Nat was the other one that I had wished would have replied. I do not know how to reach anyone besides the way I am doing right now. (Iím living in the Flintstones Era).
    I wanted to add a couple of things. My face does not perspire and my body really doesnít either. My body stays a normal temp and I can get get chilly at times which I thoroughly enjoy.
    I started propranolol about 3 days ago at 10 mg three times a day and havenít seen much improvement.
    Does ER stand for extended release? Wouldnít I be better off at a higher dose?

    I think I remember you saying back in December that you were having success with amlipodine. Are you still taking it with success?

    Thank you for all your pointers and ideas. I will keep you up to date on my progress as I would like to hear how you are doing as well. Also, please explain how I reach out to Nat.....Do I need to be on here longer for those privileges?

    Be Well,
    Angela

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    Quote Originally Posted by Ange4 View Post
    Lizzy, thank you again. I am so old and out of touch with technology that I couldn’t find the reply button. Nat was the other one that I had wished would have replied. I do not know how to reach anyone besides the way I am doing right now. (I’m living in the Flintstones Era).
    I wanted to add a couple of things. My face does not perspire and my body really doesn’t either. My body stays a normal temp and I can get get chilly at times which I thoroughly enjoy.
    I started propranolol about 3 days ago at 10 mg three times a day and haven’t seen much improvement.
    Does ER stand for extended release? Wouldn’t I be better off at a higher dose?

    I think I remember you saying back in December that you were having success with amlipodine. Are you still taking it with success?

    Thank you for all your pointers and ideas. I will keep you up to date on my progress as I would like to hear how you are doing as well. Also, please explain how I reach out to Nat.....Do I need to be on here longer for those privileges?

    Be Well,
    Angela
    Angela -

    I'm not sure if new users can do this, but when I click on my "notifications" on the upper right, I can see incoming messages, and from there able to send other forum members private messages. Perhaps someone else can chime in on this. When I'm done here I'll try seeing if I can send you one!

    I am sorry you are not getting result with propranolol so far. Yes, the ER is extended release so 60 mg ER is equivalent to 20 mg x3 of the immediate release (except you take the ER form once daily). My derm fwiw recommended I stay on a beta blocker for a month to see if I would benefit. You might need a higher dose (like double dose than what you are on) as well for benefit. For me a bb was slightly more helpful than clonidine.

    You're right, I was on amlodipine but not anymore. I think it is worth a try _maybe_ but down the road (propranolol seems more likely to help people, anyway). I think it helped with cold->hot transitions but it made it more difficult for me to tilt my head down and read, so I nixed it in the end, and decided to go more with nerve agents. I was on such a small dose though (it is a vasodilator) that I got the liquid form and took the equiv. of 1/8-1/4 the smallest available pill.

    I'm currently playing around with oral sodium channel blockers (mexiletine and others). I'll hopefully update how that (and regular ildocaine iv's) go.

    There was a former member on here with similar symptoms, whose body was 90% (surface area) unable to sweat (there's a test available only at a few medical centers where they put yellow powder on you, stick you in an oven basically, and see how much you sweat ... sounds terribly painful). She thinks this is evidence that her severe flushing/burning/heat intolerance was autonomic at heart + had a large neurological component, and I think I agree. My face could sweat the yr before my onset, though it can't anymore. I think it can be a sign of missing small nerve fibers, but not necessarily. My feet + hands have reduced sweating (as tested by QSART). Anyway, interesting you bring that up.

    What actually helps my body (not face!) to otherwise sweat, is my cymbalta (SSRI's and SNRI's are sort of sweating pills, I've always thought, first and foremost with the odd side effect of improving mood :p ). I think there's a good chance that an antidepressant might help symptoms like ours, though it can be trial and error amongst SNRI's, SSRI's, and/or mirtazapine. That's just my sense anyway.

    If you can't get a hold of Nat - I think she is on 22.5 mg mirtazapine, 40 mg x2 propranolol, ? clonidine, Xyzal.

    Hope the propranolol will help you to feel a little less hot over time. Take care,

    Lizzy
    Last edited by laser_cat; 27th April 2019 at 12:52 AM.

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    Quote Originally Posted by laser_cat View Post
    Angela -

    I'm not sure if new users can do this, but when I click on my "notifications" on the upper right, I can see incoming messages, and from there able to send other forum members private messages. Perhaps someone else can chime in on this. When I'm done here I'll try seeing if I can send you one!

    I am sorry you are not getting result with propranolol so far. Yes, the ER is extended release so 60 mg ER is equivalent to 20 mg x3 of the immediate release (except you take the ER form once daily). My derm fwiw recommended I stay on a beta blocker for a month to see if I would benefit. You might need a higher dose (like double dose than what you are on) as well for benefit. For me a bb was slightly more helpful than clonidine.

    You're right, I was on amlodipine but not anymore. I think it is worth a try _maybe_ but down the road (propranolol seems more likely to help people, anyway). I think it helped with cold->hot transitions but it made it more difficult for me to tilt my head down and read, so I nixed it in the end, and decided to go more with nerve agents. I was on such a small dose though (it is a vasodilator) that I got the liquid form and took the equiv. of 1/8-1/4 the smallest available pill.

    I'm currently playing around with oral sodium channel blockers (mexiletine and others). I'll hopefully update how that (and regular ildocaine iv's) go.

    There was a former member on here with similar symptoms, whose body was 90% (surface area) unable to sweat (there's a test available only at a few medical centers where they put yellow powder on you, stick you in an oven basically, and see how much you sweat ... sounds terribly painful). She thinks this is evidence that her severe flushing/burning/heat intolerance was autonomic at heart + had a large neurological component, and I think I agree. My face could sweat the yr before my onset, though it can't anymore. I think it can be a sign of missing small nerve fibers, but not necessarily. My feet + hands have reduced sweating (as tested by QSART). Anyway, interesting you bring that up.

    What actually helps my body (not face!) to otherwise sweat, is my cymbalta (SSRI's and SNRI's are sort of sweating pills, I've always thought, first and foremost with the odd side effect of improving mood :p ). I think there's a good chance that an antidepressant might help symptoms like ours, though it can be trial and error amongst SNRI's, SSRI's, and/or mirtazapine. That's just my sense anyway.

    If you can't get a hold of Nat - I think she is on 22.5 mg mirtazapine, 40 mg x2 propranolol, ? clonidine, Xyzal.

    Hope the propranolol will help you to feel a little less hot over time. Take care,

    Lizzy

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    Lizzy, Iím going to see if I can get on a higher dose of propranolol next week. I am actually working with my cardiologist on all my medications because my derms are not comfortable with some of the meds so my cardio is following me. He said that he will direct me to a pain dr. I want to check into lidocaine IV therapy.
    I have also done some research on medically necessary cannabis cream for chronic pain conditions. There is supposed to be a local dr that has helped a lot of people with chronic pain. They can make creams without the THC. Is it legal in your state for medical conditions? I hope I donít get in trouble talking about this on this forum but our conditions are so painful that I would have never considered this in my wildest dreams.

    I was doing some reading on Natís Scarlett letter blog and I emailed her directly from there.
    Thanks again Lizzy.

    PS I am also considering Gabapentin

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    Hey, any updates on this?

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