Page 1 of 3 123 LastLast
Results 1 to 10 of 26

Thread: Botox helping my flushing (!)

  1. #1
    Senior Member laser_cat's Avatar
    Join Date
    Jan 2017
    Posts
    656
    Country: United States

    Default Botox helping my flushing (!)

    Hi everyone,

    I never really made a formal introduction I guess, but have been an active member for the past few months (though longtime lurker). I'm 31 yo/female. I have read most of the threads in this forum, multiple times lol and greatly appreciate how helpful + understanding everyone is on here, I have learned so much. While I'm sad that other ppl on here deal with rosacea as well, it has been helpful to know I am not the only one with my symptoms. I wish I could take it all away from you.

    SYMPTOMS: diagnosed as sub 1 rosacea / neurogenic rosacea / erythromelalgia, depending on the doc lol. I was fine + healthy one day, and literally the next I had evening flushing out of the blue. It would be more like a spasming, very painful, with swelling, affecting ears/cheeks/nose mainly. One area would spasm, then another area, and then everything would be one pulsing inferno mess. Since then I have flushed every evening for the past 16 months without fail. At first I was ok during the day, but then after some number of weeks I would flush to anything during the day (sun, chewing, digesting, ANY amount of stress, talking to strangers, the smallest temp change). I became housebound and had to keep the AC on all the time. Lying down and trying to sleep = nightmare!

    HISTORY - history of eating disorders, though not an issue for 2 years prior to onset. Been on SSRI’s for ~15 years. I’m a definite type A personality Onset happened shortly after I went off birth control., due to migraines + hypertension.

    FAILED TREATMENTS:

    -daily zyrtec - after 4 days, took away my flushing 100%, but came back 100% a few weeks later.
    -daily 2 zyrtec + 2 allegra - no difference.
    -gastrocrom - no difference.
    -2 excel v, 1 vbeam - no difference.
    -soolantra, finacea, metrogel, sulfer washes, aczone, oracea - no difference.
    -cymbalta, no antidepressants, effexor, paxil, remeron - no difference for me, but seems like some improve with them, while others get worse. I had been on cymbalta for years when I had onset.
    -atarax (rx antihistamine) - no difference
    - topical timolol - helped for a few hours then big rebound
    - gabapentin - helped for a few days then worse than it was before
    - lyrica - helped massively with pain, but too sedating.
    - clonazapam - very helpful, esp. with sleep. Effects do wear off over time if taken everyday,. When taken in the evening also made my face calmer the next day.
    - topical 2x / day of ketamine 10% / amitriptyline ?% - helped for a day, then rebound
    - midodrine - massively worse
    -amlodipine - initially better for 2 days, then worse
    - magnesium - sometimes better, sometimes worse, sometimes no difference. Would have explored this more, esp. since prone to headaches/migraines.
    - clonidine - a bit helpful, but wore off completely over couple months. Also, wants to put all the blood in my nose (as opposed to more uniform flushing prior). I want to taper off, but find it too difficult. Clonidine has made my hair fall out (3 months after starting).
    - propranolol - made me too depressed. Tried it twice. Initially (before clonidine) it was helpful, but not when I was on clonidine.
    - zinc gluconate - makes my skin smoother I’d say. No effect on flushing.
    - NAC - more flushy
    - niacinamide - no difference after 2 months
    - low sugar diet, no caffeine/alcholol- no effect
    - restarting birth control pills / birth control patch - no benefit.

    I’ve had 5 botox treatments so far. #1 = just a few injections, trial, to make sure no bad reactions. #2-#3 - my derm guessing on the best way to do botox. Not sure how many injections/units. #4-#5 - derm did many more injections/more surface area, and about 100 units each.

    All done about a few weeks - 1 month apart. I will probably get 1 tx / 2-3 months from now on.

    My derm consulted with one of the authors (Erin Gilbert) of this paper https://www.ncbi.nlm.nih.gov/pmc/art...34494/#CIT0065 (I had to pay Dr Gilbert for a consult.)

    MY RESULTS - no results until 4 weeks after treatment #5. In the past 1-2 weeks, I can now lie down to sleep. I don’t wake up burning, and I do not feel the need to use a cold pack in the evening (my worst time). I am so, SO shocked and incredibly grateful.

    OTHER THINGS - I do deep breathing as much as I can, since I automatically carry so much tension in my muscles (which is not good for circulation).
    -I actually think that my flushing is due, at least partly, to the fact that some areas in my skin have much more blood, while other areas are extremely pale and not getting as much blood as they should. This is a theory in EM. I have a “mottled” appearance on most of my body (red/white spots, common in paler folk). This could be the reason that amlodipine (a blood vessel relaxer) helped initially (perhaps too strong a vasodilator though). Magnesium I believe is shorter acting. Interestingly, always for the first 1-3 days after a botox treatment, my face got temporary relief — this is too soon for the botox to take effect, rather my body would be trying to repair my skin (more blood flow than usual to face, my derm said).
    -I find it interesting that sub 1 rosacea seems to co-ocur in many type A personalities, who are maybe prone to depression/anxiety. I think that taking efforts to treat the anxiety, etc, will in the long run help the rosacea/pain. I think this is more important than letting your mind spend time focusing on the pain (thinking how bad it is, checking mirrors, etc...in a way might perpetuate the pain).

    Best wishes to all,

    Lizzy

  2. #2
    Senior Member
    Join Date
    Jun 2017
    Location
    Bay Area, CA
    Posts
    366
    Country: United States

    Default

    Hi Lizzy,

    Thank you so much for sharing your story. I am sorry that everything that you have tried has not been that effective. Hopefully the botox treatments will bring you more necessary relief. My heart goes out to you and everyone who suffers with this crazy ass disease. I resonate with what you said about depression/anxiety and type A personality tendencies. I tend to also be obsessive and this diagnosis has sent me over the edge into major "fix-it" mode where I'm constantly researching ways to ameliorate my condition. Between that, and checking the mirror, and hiding out in air conditioning all day, my life has become pretty drab. I know part of my healing is some form of acceptance and living my life anyway, but it's really hard to overcome the constant flushing and pain this disease brings. I just wanted to let you know that you aren't alone in your struggle and that I hope something turns up for you that brings you more relief. Sending you a big cyber hug.....

  3. #3
    Senior Member laser_cat's Avatar
    Join Date
    Jan 2017
    Posts
    656
    Country: United States

    Default

    Quote Originally Posted by MissM View Post
    Hi Lizzy,

    Thank you so much for sharing your story. I am sorry that everything that you have tried has not been that effective. Hopefully the botox treatments will bring you more necessary relief. My heart goes out to you and everyone who suffers with this crazy ass disease. I resonate with what you said about depression/anxiety and type A personality tendencies. I tend to also be obsessive and this diagnosis has sent me over the edge into major "fix-it" mode where I'm constantly researching ways to ameliorate my condition. Between that, and checking the mirror, and hiding out in air conditioning all day, my life has become pretty drab. I know part of my healing is some form of acceptance and living my life anyway, but it's really hard to overcome the constant flushing and pain this disease brings. I just wanted to let you know that you aren't alone in your struggle and that I hope something turns up for you that brings you more relief. Sending you a big cyber hug.....
    Thank you for the hug, MissM!!

    Yes, I hope the botox will bring me even more relief too. But just really happy at how much it has helped already I literally never thought I'd see this much progress, ever!

    Yes, I totally sympathize with you in regards to obsessiveness. If anyone found a definitive answer/explanation to the evening flushing phenomenon and put it up online, I would have found it It is a fine line, isn't it, between frantically trying to find ways to relieve the rosacea, etc, etc, and accepting what's happening. I would have never found out about botox being helpful for rosacea if it weren't for my compulsive research LOL (even a bigwig doctor in neurogenic rosacea pooh-poohed the idea of botox helping me). Yet I know I could have read a lot less stuff and done a lot less mirror checking and probably would have been better off.

    Wishing you all the best in your rosacea journey!

  4. #4
    Senior Member
    Join Date
    Jun 2017
    Location
    Bay Area, CA
    Posts
    366
    Country: United States

    Default

    I'm just so happy that the botox is working for you! Yeah, it's been a challenge dealing with doctors/derms. I'm so grateful for this forum and for the information I've been able to gleen!

  5. #5
    Senior Member
    Join Date
    Aug 2010
    Posts
    1,057

    Default

    It's interesting that you found botox so helpful compared to all these other treatments. For me, botox is a useful addition, but not as helpful as medications to help with the flushing. Now you have got some control over the rosacea through the botox, I wonder whether you would see further improvement through trying again some of the treatments that didn't work before for you. Dr Nick Soldo, now retired, who used to post on this forum occasionally, used botox on patients quite a lot. His advice was that the botox should be used 'transdermally' but not to hit specific veins. He found it most useful for ear rosacea compared to other parts of the face (particularly around the edge of the ears).

    A simple topical treatment that may help is colloidal silver spray from Higher Nature, especially to cool down flushes. The colloidal silver water is good at killing bacteria etc and is gentler on the skin than tap water.

  6. #6
    Senior Member laser_cat's Avatar
    Join Date
    Jan 2017
    Posts
    656
    Country: United States

    Default

    Quote Originally Posted by antwantsclear View Post
    It's interesting that you found botox so helpful compared to all these other treatments. For me, botox is a useful addition, but not as helpful as medications to help with the flushing. Now you have got some control over the rosacea through the botox, I wonder whether you would see further improvement through trying again some of the treatments that didn't work before for you. Dr Nick Soldo, now retired, who used to post on this forum occasionally, used botox on patients quite a lot. His advice was that the botox should be used 'transdermally' but not to hit specific veins. He found it most useful for ear rosacea compared to other parts of the face (particularly around the edge of the ears).

    A simple topical treatment that may help is colloidal silver spray from Higher Nature, especially to cool down flushes. The colloidal silver water is good at killing bacteria etc and is gentler on the skin than tap water.
    Hi antwantsclear! Thanks for your post

    Thank you for the colloidal silver spray tip. I had tried Avene thermal spray months ago, which I think at the time could not make a dent in my severe flushing, but now I'm thinking something along those lines could be a lot of help especially when I feel my face heating up. The colloidal silver aspect also seems promising!

    Yes, I heard about Dr. Nick Soldo -- was definitely looking into him due to his botox/rosacea experience but too bad he is retired now.

    If anything, I would like to reduce my clonidine dosage (0.3 mg total / day). I think it has the effect of making my nose/ears too cold during the day, which sets it up for huge painful flushing later in the day. However, I too think it might be beneficial to retry some things. I'd be really curious about getting more laser/IPL treatments now -- however scared to rock the boat, as we all know how those can go. In hindsight my last laser dr (with the vbeam and excel v) was probably not all that great, and I wonder what would happen if I found someone very experienced ...

    I'd also be interested in still trying antimalarials -- was wondering what your take on these were? They seem to be helpful for accutane triggered flushing rosacea based on the forum, but I've never been on accutane.

    Best,

    Lizzy

  7. #7
    Senior Member
    Join Date
    Aug 2010
    Posts
    1,057

    Default

    Moxonodine has a very similar function to clonidine but I found it much more helpful than clonidine, so it is definitely worth considering. You do not get the extremes of very cold and rebound flushing just before you need to take the next dose. Another reason you may be getting a mix of very cold and big flushes is not just the drug itself but a combination of the warm room syndrome and diet. Any area of your rosacea which is uncovered when you go outside in the cold (especially the wind) will reverberate with a warm/hot flush when you go back inside (this could be a while after entering a warm environment). A low carbohydrate diet and covering up rosacea affected areas (e.g. the ears with a hat when outside in the sun and the cold) will help reduce warm room flushing. But moxonodine is much more effective for me than clonidine. I take moxonodine 200 mcg 3 times per day, but you'd probably start with it twice per day.

    In general, medications are far more reliable than laser/IPL to improve rosacea flushing, though they come with possible side effects to other parts of the body which IPL/laser don't have.

    I think antimalarials (mepacrine and hydroxchloroquine) are both very helpful. The most powerful combination is taking some combination of both, but I think mepacrine is hard to obtain in America, so easier to start with hydroxychloroquine.

    You really need moxonodine or clonidine (they are both the same type of drug - an alpha blocker) and an anti malarial to have a big impact on rosacea flushing - certainly in my experience.

  8. #8
    Senior Member
    Join Date
    Oct 2015
    Posts
    303

    Default

    Quote Originally Posted by antwantsclear View Post
    Moxonodine has a very similar function to clonidine but I found it much more helpful than clonidine, so it is definitely worth considering. You do not get the extremes of very cold and rebound flushing just before you need to take the next dose. Another reason you may be getting a mix of very cold and big flushes is not just the drug itself but a combination of the warm room syndrome and diet. Any area of your rosacea which is uncovered when you go outside in the cold (especially the wind) will reverberate with a warm/hot flush when you go back inside (this could be a while after entering a warm environment). A low carbohydrate diet and covering up rosacea affected areas (e.g. the ears with a hat when outside in the sun and the cold) will help reduce warm room flushing. But moxonodine is much more effective for me than clonidine. I take moxonodine 200 mcg 3 times per day, but you'd probably start with it twice per day.

    In general, medications are far more reliable than laser/IPL to improve rosacea flushing, though they come with possible side effects to other parts of the body which IPL/laser don't have.

    I think antimalarials (mepacrine and hydroxchloroquine) are both very helpful. The most powerful combination is taking some combination of both, but I think mepacrine is hard to obtain in America, so easier to start with hydroxychloroquine.

    You really need moxonodine or clonidine (they are both the same type of drug - an alpha blocker) and an anti malarial to have a big impact on rosacea flushing - certainly in my experience.
    That's interesting. I'm still flushing with clonidine, carvedilol and mirtazapine so maybe I should swop to moxonodine? I see prof chu and will see what he suggests. My flushing has improved but I still go red easily in the heat and it's so uncomfortable


    Sent from my iPhone using Tapatalk

  9. #9
    Senior Member laser_cat's Avatar
    Join Date
    Jan 2017
    Posts
    656
    Country: United States

    Default

    Quote Originally Posted by antwantsclear View Post
    Moxonodine has a very similar function to clonidine but I found it much more helpful than clonidine, so it is definitely worth considering. You do not get the extremes of very cold and rebound flushing just before you need to take the next dose. Another reason you may be getting a mix of very cold and big flushes is not just the drug itself but a combination of the warm room syndrome and diet. Any area of your rosacea which is uncovered when you go outside in the cold (especially the wind) will reverberate with a warm/hot flush when you go back inside (this could be a while after entering a warm environment). A low carbohydrate diet and covering up rosacea affected areas (e.g. the ears with a hat when outside in the sun and the cold) will help reduce warm room flushing. But moxonodine is much more effective for me than clonidine. I take moxonodine 200 mcg 3 times per day, but you'd probably start with it twice per day.

    In general, medications are far more reliable than laser/IPL to improve rosacea flushing, though they come with possible side effects to other parts of the body which IPL/laser don't have.

    I think antimalarials (mepacrine and hydroxchloroquine) are both very helpful. The most powerful combination is taking some combination of both, but I think mepacrine is hard to obtain in America, so easier to start with hydroxychloroquine.

    You really need moxonodine or clonidine (they are both the same type of drug - an alpha blocker) and an anti malarial to have a big impact on rosacea flushing - certainly in my experience.
    Thanks for this info. I am very interested in moxonodine (instead of clonidine). Can I ask if you cross-tapered from clonidine to moxonidine?

    Thanks again.

  10. #10
    Senior Member
    Join Date
    Aug 2010
    Posts
    1,057

    Default

    Moxonodine often does work better for some, clonidine works better for others, so I wouldn't give up just because clonidine didn't work out for you. I am much happier with moxonodine. Carv. does not work for everyone - only a small number of people are taking this for rosacea.

    No, I didn't find I need to cross taper much if at all between the two alpha blockers - certainly no more than a day of taking clonidine and moxonidine at the same time. You'd need to be careful of low blood pressure as well if you took both at the same time in significant doses.

    By contrast, mirtazapine does often require tapering down very slowly if want to come off it. You can even buy it in an expensive liquid form to make the tapering down process very slow and precise.

Similar Threads

  1. Botox for flushing
    By geobiders in forum Prescription medications
    Replies: 15
    Last Post: 31st January 2015, 12:57 PM
  2. Botox and flushing?
    By snuffleupagus in forum General rosacea questions
    Replies: 7
    Last Post: 13th June 2009, 07:05 PM
  3. Anyone taken Grape Seed Extract? Might be helping flushing
    By queta in forum Topical and oral products (non-prescription)
    Replies: 24
    Last Post: 2nd April 2008, 12:30 AM
  4. Botox and flushing
    By flushnomore in forum General rosacea questions
    Replies: 3
    Last Post: 9th November 2005, 03:47 AM
  5. More on BOTOX for Rosacea Flushing
    By drnase in forum News, research articles and current affairs
    Replies: 2
    Last Post: 5th July 2005, 05:37 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •