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Thread: First Post/Introduction

  1. #1
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    Default First Post/Introduction

    Hey everyone,

    This will be a fairly long post as I figure I'll get it out all at once.

    I've been a blusher and flusher for as long as I can remember. I suppose it became noticeably worse after puberty but despite being a problem, I managed to accomplish quite a bit in my life and not allow it to limit me too much.

    I am now 30 years old and I have to say the flushing response to all triggers has increased a great deal. Specifically cold weather, golfing, working out, public speaking etc. These flushes can last up to a few hours and are very emotionally distressing. I have also developed permanent redness across both cheeks and now the nose as well. In other words, it's been Rosacea time for a while now.

    So what have I tried

    Medication/topicals:

    I have been to two dermatologists, both who have said my sub-type 1 is not treatable with medications, use a moisturizer daily, clean your face blah blah blah. One also suggested onreltea (mirvaso) to which I promptly replied no thanks. Well, after these two cursory visits I now know that almost no moisturizer/cleanser is suitable for my skin as they almost all make my eye symptoms bad and my cheeks burn. My GP prescribed Metrocream but I basically had the same response and don't have any type 2 symptoms as of yet.

    Concerning anti-flushing meds, as I suffer from mild Raynaud's on my hands, I don't feel comfortable that clonidine will be the answer to my flushing issues although I will save it as a last resort. I also have a bottle of 40x10mg propranolol and plan to use this for stressful situations such as upcoming job interviews but also feel as though the benefit of daily use does not outweight the side effects as of yet. This med definitely helps with physical symptoms of adrenaline and dulls but doesn't eliminate emotional flushing for me.

    Meditation is also helpful, especially with the psychological impacts and social anxiety. I use the headspace app, which is free for a 10 day trial, and then I pay $17 a month for the advanced package. This is invaluable and well worth the money in my opinion.

    Diet:

    For the past year or so, I have been waffling back and forth between a healthy primal style diet, and relapsing due to weight loss, weddings, parties, holidays etc. That being said, there has been objective improvement in flushing and flushing triggers with this diet. My skin feels much calmer, smoother, and less red when I limit starchy carbs like rice, pasta, and bread, and on the flip side gets significantly worse when I gorge myself. I will continue to pursue this diet as long as I live if I have to and simply need to eat more fats/calories to maintain my weight. Many people including my own brother manage to maintain their weight on this diet so while difficult, it is not impossible.

    Laser:

    At my last visit to a dermatologist, she mentioned a 3xtreatment package of the Excel V laser that may work well for my specific issues. I believe I will go this route and give it a try. There have clearly been some negative outcomes on this site to laser. And, there have also been those who don't respond at all. But there is also a hugely disproportionate number of negative responses on the internet, when it comes to any and all treatments. Further, the only empirical studies I have read abstracts of have generally positive numbers when it comes to improvements in QoL and redness/flushing reduction. I know it may not eliminate the flushing entirely, or potentially not at all, but if it can reduce the permanent redness for a time then it will be a small yet meaningful victory.

    Finally, I want to say thank you for all the contributors and especially those who make an effort to encourage and empathize with those struggling with this disease. Specifically Brady Barrows I find to have a very practical, hopeful, and encouraging approach to treatments/diet as well as the corresponding psychological issues that we all suffer from one degree or another. I believe that although a cure may not be around the corner, the financial benefit of a successful treatment for sub-type 1 rosacea will spur continued research and development for the foreseeable future.

    As soon as I pluck up the courage to undergo the laser treatments, I will update my (fingers crossed) progress as soon as I can. Take care, and don't give up.

    Cheers

  2. #2
    Senior Member Brady Barrows's Avatar
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    Chris1986,

    Thanks for your kudos, and let us know if laser can help subtype 1. That would be something worthy of posting. Also, please the join the RRDi and make some posts. I can't figure out why no one posts in the RRDi forum. If anyone can give me some advice, I am all ears.
    Brady Barrows
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  3. #3
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    Quote Originally Posted by Chris1986 View Post
    Hey everyone,

    This will be a fairly long post as I figure I'll get it out all at once.

    I've been a blusher and flusher for as long as I can remember. I suppose it became noticeably worse after puberty but despite being a problem, I managed to accomplish quite a bit in my life and not allow it to limit me too much.

    I am now 30 years old and I have to say the flushing response to all triggers has increased a great deal. Specifically cold weather, golfing, working out, public speaking etc. These flushes can last up to a few hours and are very emotionally distressing. I have also developed permanent redness across both cheeks and now the nose as well. In other words, it's been Rosacea time for a while now.

    So what have I tried

    Medication/topicals:

    I have been to two dermatologists, both who have said my sub-type 1 is not treatable with medications, use a moisturizer daily, clean your face blah blah blah. One also suggested onreltea (mirvaso) to which I promptly replied no thanks. Well, after these two cursory visits I now know that almost no moisturizer/cleanser is suitable for my skin as they almost all make my eye symptoms bad and my cheeks burn. My GP prescribed Metrocream but I basically had the same response and don't have any type 2 symptoms as of yet.

    Concerning anti-flushing meds, as I suffer from mild Raynaud's on my hands, I don't feel comfortable that clonidine will be the answer to my flushing issues although I will save it as a last resort. I also have a bottle of 40x10mg propranolol and plan to use this for stressful situations such as upcoming job interviews but also feel as though the benefit of daily use does not outweight the side effects as of yet. This med definitely helps with physical symptoms of adrenaline and dulls but doesn't eliminate emotional flushing for me.

    Meditation is also helpful, especially with the psychological impacts and social anxiety. I use the headspace app, which is free for a 10 day trial, and then I pay $17 a month for the advanced package. This is invaluable and well worth the money in my opinion.

    Diet:

    For the past year or so, I have been waffling back and forth between a healthy primal style diet, and relapsing due to weight loss, weddings, parties, holidays etc. That being said, there has been objective improvement in flushing and flushing triggers with this diet. My skin feels much calmer, smoother, and less red when I limit starchy carbs like rice, pasta, and bread, and on the flip side gets significantly worse when I gorge myself. I will continue to pursue this diet as long as I live if I have to and simply need to eat more fats/calories to maintain my weight. Many people including my own brother manage to maintain their weight on this diet so while difficult, it is not impossible.

    Laser:

    At my last visit to a dermatologist, she mentioned a 3xtreatment package of the Excel V laser that may work well for my specific issues. I believe I will go this route and give it a try. There have clearly been some negative outcomes on this site to laser. And, there have also been those who don't respond at all. But there is also a hugely disproportionate number of negative responses on the internet, when it comes to any and all treatments. Further, the only empirical studies I have read abstracts of have generally positive numbers when it comes to improvements in QoL and redness/flushing reduction. I know it may not eliminate the flushing entirely, or potentially not at all, but if it can reduce the permanent redness for a time then it will be a small yet meaningful victory.

    Finally, I want to say thank you for all the contributors and especially those who make an effort to encourage and empathize with those struggling with this disease. Specifically Brady Barrows I find to have a very practical, hopeful, and encouraging approach to treatments/diet as well as the corresponding psychological issues that we all suffer from one degree or another. I believe that although a cure may not be around the corner, the financial benefit of a successful treatment for sub-type 1 rosacea will spur continued research and development for the foreseeable future.

    As soon as I pluck up the courage to undergo the laser treatments, I will update my (fingers crossed) progress as soon as I can. Take care, and don't give up.

    Cheers
    Hey Chris,

    We're very similar. I'm 33 (Chris1983), had redness/flushing since I was young, and just recently have developed persistent redness. I would say my biggest triggers are weather, exercise, stress, and public speaking as well. Out of curiosity do you have very fair skin? Maybe blonde hair or blue eyes? I read something that said that the incidence of Rosacea among those with fairer traits was much higher.

    I will definitely try out the headspace app you recommended. I'm currently at a place in my education where I'm constantly stressed and I think it's the main contributor to my constant redness. Also, I wanted to ask, were you prescribed propranolol by your PCP or by your dermatologist? I know for me a lot of times my flushing is like a positive feedback loop where I feel myself get hot so I start to think about flushing, then I flush more, think about it, etc, etc. If the anxiety were lessened this may not be as intense. I constantly have to give presentations so I'm very interested in this.

    I'm currently on Finacea myself which I haven't seen any reduction in redness with, but if it prevents me from progressing to subtype 2 then I'm find with that. I haven't tried any laser treatment, but please let us know how it goes.

    Good luck!
    Fawlty

  4. #4
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    Quote Originally Posted by Brady Barrows View Post
    Chris1986,

    Thanks for your kudos, and let us know if laser can help subtype 1. That would be something worthy of posting. Also, please the join the RRDi and make some posts. I can't figure out why no one posts in the RRDi forum. If anyone can give me some advice, I am all ears.
    Hi Brady,

    That is a good question about RRDi. There is a ton of good information there, but you're right the forum is pretty dead. This may be just that there are sites (such as this one) that are JUST forums for this type of thing. RRDi has a wealth of information as well as a forum, which may confuse some people. Along with that once a 'meeting place' is established many people have trouble changing venues. Is it possible to just make The Rosacea Forum the official forum for RRDi? It would probably be more beneficial if the two could be intimately associated rather then two separate entities. Just a few thoughts.

    Thanks,
    Fawlty

  5. #5
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    Quote Originally Posted by Fawlty View Post
    Hey Chris,

    We're very similar. I'm 33 (Chris1983), had redness/flushing since I was young, and just recently have developed persistent redness. I would say my biggest triggers are weather, exercise, stress, and public speaking as well. Out of curiosity do you have very fair skin? Maybe blonde hair or blue eyes? I read something that said that the incidence of Rosacea among those with fairer traits was much higher.

    I will definitely try out the headspace app you recommended. I'm currently at a place in my education where I'm constantly stressed and I think it's the main contributor to my constant redness. Also, I wanted to ask, were you prescribed propranolol by your PCP or by your dermatologist? I know for me a lot of times my flushing is like a positive feedback loop where I feel myself get hot so I start to think about flushing, then I flush more, think about it, etc, etc. If the anxiety were lessened this may not be as intense. I constantly have to give presentations so I'm very interested in this.

    I'm currently on Finacea myself which I haven't seen any reduction in redness with, but if it prevents me from progressing to subtype 2 then I'm find with that. I haven't tried any laser treatment, but please let us know how it goes.

    Good luck!
    Fawlty
    Hey Fawlty,

    Yup, you nailed it. Born blonde, but now light brown hair. Very fair skin - tanning essentially not an option. Have tried to step up my sun protection game but as the majority of sun screens, including physical ones seem to irritate me somewhat, I get a bit of sun here and there. I'm not sure if this is a bad thing though considering you do need some vitamin D.

    Your flushing and the positive feedback loop are right on as well. I have suffered from the exact same thing. Like you, it appears to have psychological foundations. And you would think it was therefore within our control. However, I would say that just because it is largely in our minds doesn't mean it's necessarily controllable 100 percent. Like many people with blushing/flushing problems, I believe that an overactive sympathetic nervous system may be partly to blame. Now whether this over-activity is conditioned by our near Pavlovian flushing/blushing and fear response to get to the level it's at, or the sensitivity is built in to begin with, is another question. Another chicken or egg conundrum i suppose.

    Oh, and I got propranolol from a resident who was sitting in for my family physician - I said it was for physical symptoms for stressful interviews. She was happy to prescribe it and used it herself on several occasions as she plays in a band or something. Just checked my BP and was good to go. BTW, took 20mg about 1.5 hours before starting some academic courses the other day, and wow, didn't flush for almost the whole day. Had a small rebound later in the evening and a hard time sleeping, but I would say it was worth it.

    If you haven't already, I strongly consider going primal/paleo/low carb with your diet. It doesn't matter which version but it has made a big difference and it can decrease your redness and corresponding discomfort significantly within three or four days if you commit.

    I just read the new article posted in the research forum on skin-barrier dysfunction and rosacea pathology. Looks like they are zeroing in on some of the key mechanisms to our disorder (specifically sub-type 1) so I'm hopeful there will be some viable options for better treatment within the decade. Until that day comes, keep up the good work and putting yourself in those stressful situations. If there's one thing I've realized it's that we're definitely not alone as I see a lot of people on a daily basis with rosacea symptoms.

    have a good one

  6. #6
    Senior Member Brady Barrows's Avatar
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    Quote Originally Posted by Fawlty View Post
    Hi Brady,

    That is a good question about RRDi. There is a ton of good information there, but you're right the forum is pretty dead. This may be just that there are sites (such as this one) that are JUST forums for this type of thing. RRDi has a wealth of information as well as a forum, which may confuse some people. Along with that once a 'meeting place' is established many people have trouble changing venues. Is it possible to just make The Rosacea Forum the official forum for RRDi? It would probably be more beneficial if the two could be intimately associated rather then two separate entities. Just a few thoughts.

    Thanks,
    Fawlty
    RF used to be a sister site with the RRDi when Warren Stuart was still here. Now that David Pascoe took over that ended. But Dave lets me keep posting. Thanks Dave.
    Brady Barrows
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  7. #7
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    Quote Originally Posted by Chris1986 View Post
    Hey Fawlty,

    Yup, you nailed it. Born blonde, but now light brown hair. Very fair skin - tanning essentially not an option. Have tried to step up my sun protection game but as the majority of sun screens, including physical ones seem to irritate me somewhat, I get a bit of sun here and there. I'm not sure if this is a bad thing though considering you do need some vitamin D.

    Your flushing and the positive feedback loop are right on as well. I have suffered from the exact same thing. Like you, it appears to have psychological foundations. And you would think it was therefore within our control. However, I would say that just because it is largely in our minds doesn't mean it's necessarily controllable 100 percent. Like many people with blushing/flushing problems, I believe that an overactive sympathetic nervous system may be partly to blame. Now whether this over-activity is conditioned by our near Pavlovian flushing/blushing and fear response to get to the level it's at, or the sensitivity is built in to begin with, is another question. Another chicken or egg conundrum i suppose.

    Oh, and I got propranolol from a resident who was sitting in for my family physician - I said it was for physical symptoms for stressful interviews. She was happy to prescribe it and used it herself on several occasions as she plays in a band or something. Just checked my BP and was good to go. BTW, took 20mg about 1.5 hours before starting some academic courses the other day, and wow, didn't flush for almost the whole day. Had a small rebound later in the evening and a hard time sleeping, but I would say it was worth it.

    If you haven't already, I strongly consider going primal/paleo/low carb with your diet. It doesn't matter which version but it has made a big difference and it can decrease your redness and corresponding discomfort significantly within three or four days if you commit.

    I just read the new article posted in the research forum on skin-barrier dysfunction and rosacea pathology. Looks like they are zeroing in on some of the key mechanisms to our disorder (specifically sub-type 1) so I'm hopeful there will be some viable options for better treatment within the decade. Until that day comes, keep up the good work and putting yourself in those stressful situations. If there's one thing I've realized it's that we're definitely not alone as I see a lot of people on a daily basis with rosacea symptoms.

    have a good one
    Not surprising about the strong genetic component here. I haven't done my research, but it must run in families. The only one I can think of off my head is the British Royal family. Unfortunately I'm adopted so I have no clue about my family medical history and if rosacea is present.

    As for the psychological component it can have a pretty strong pull in my daily life. When I first saw the persistent redness it was very hard for me (it still is most days). Just thinking about being red seemed to force a hot flash and then a full on flush. Now that I've been dealing with it for the past six months I'm more used to the redness, but it still consumes my mind most days. Often times I won't go out with friends or in public if I'm feeling too self conscious about it. The big issue is not letting it get in the way of life. It's funny how we take things for granted. I never really used to care too much about my appearance, but now I often hesitate to look in the mirror if I think I might be more red than usual. It seems many of the choices I make throughout the day are predicated on whether or not it will cause me to flush or get more red. I'm mostly upset about how much time I spend thinking about it.

    I will talk to my PCP about the propranolol and see if he will let me try it for anxiety. As for the diet, that will be one of the hardest things I do. I was raised and still am a vegetarian so the majority of my diet consists of potential triggers (rice, bread, pasta, all of the carbs). Have you ever heard of anyone doing the primal/paleo without proteins like meat? It can't be healthy to sit around and eat eggs and beans all day!

    Good news on the article you read, maybe there is some more hope in sight other than the devil that is Mirvaso. Link it if you get a chance!

    All I really want to do is go back to enjoying my whiskey and spicy foods. Is that so much to ask? haha

    Take care man and keep us updated!

  8. #8
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    Default Update and Vbeam

    Hey everyone,

    Wee bit of an update here...

    I said in my first post that I was considering 3 sessions with the Excel V laser, but turns out it would have been $500 a pop at a fancy Pacific Northwest cosmetic dermatologists office. So instead I opted for Candela Vbeam at $150 per session with a small city, experienced dermatologist. In fact, he's basically the only one in the region.

    I have had 2 sessions so far. 5 weeks apart. They were minimally painful if at all and as I have very sensitive fair skin - he said the power level was set very low. After each full face treatment I was mildly red, but honestly had expected a lot worse. I was then sent home and on advice from this forum, not the derm, I iced each cheek with frozen peas throughout the remainder of the day. The next morning I had some mild redness but next to no swelling. And that same day I was able to go out in public, speak to people etc without it being a major issue.

    For the following month after each one my flushing propensity varied - worse at times and better at others. I did not go drastically out of my way to prevent flushing and after roughly 5 days continued to play squash and workout again. Oh, and I did have flushing episodes. That being said, I have tried to maintain as best as possible a fairly low-carb/high fat/high vegetable diet which I know for a fact helps me.

    So, it took about 6 weeks after the second session but I have noticed a fairly significant difference. The flushing is less severe, much less often, and I don't have that on-edge hot feeling all the time like my face could flush badly at the drop of a hat. The baseline redness is also somewhat decreased. One weird sensation that would happen in the weeks after were a burning flushed feeling with minimal redness, and no burning flushed feeling with quite pronounced redness. Think this may just be the healing process working itself out.

    Anyways, this has improved my quality of life and I am challenging myself in many ways that I would not before. For one, I have joined toastmasters. Right before my first-meeting I thought I was gonna s**t my pants but I pushed through the fear and honestly felt more confident after one meeting - I guess this was teaching my reptilian brain that I wasn't going to die just by public speaking and subsequently going red. I have also been more social and forced myself into situations which before would have been an absolute no go. I cannot stress how important I think it is to challenge our fears, regardless of our appearance.

    Finally, prior to the laser appointment I was legitimately scared of burning, scarring, pigmentation issues etc. I addressed this to with the derm immediately called me out for paying too much attention to "Dr. Google". He is old school and said that while those were risks and do happen, they generally occur under someone with little experience or training. (i should say here that he also does each session at the same power level and doesn't believe in increasing it at any stage. He also advises that the changes are microscopic and will take some time to appear - and he was right)

    While I think it is very important to be informed and do your research, I do wonder if he had a point. Yes, horrible things have happened with these devices. But social media and the internet have a way of exacerbating and exaggerating the number and severity of these incidents. There are thousands of derms out there using these lasers on a daily basis. The 3 I have spoken to have never had a burn issue and seemed very confident with their use. Even the derms on REALSELF - although I am aware they are partly marketing themselves and the profession - say that this is one of the best known treatments for redness and flushing. Could they all be greedy, uncaring and money-hungry liars?

    My only point is if you are thinking about laser - it can be a successful and life-improving treatment. And yes, you have to consider how many times you may need to go back and what the risks are. So find a derm you trust, ask questions, do a test patch and give it a shot if you think it might help.

    I will go back for a third and fourth session i believe to get to the point I want to be at and then re-assess from there. I will also let you know how that goes.

    Keep fightin the good fight

  9. #9
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    Hi Chris,

    Thanks for sharing your positive results.

    I have similar symptoms to you and, as far as I can gather from what you've shared, my treatment results are similar too... although I have been having IPL rather than laser.

    I had my fourth IPL treatment just over two weeks ago and I am really starting to see and, most importantly for me, FEEL the difference in my face. I haven't flushed for almost three weeks now, except for a little pinkness that's comes to my nose in the evenings when the woodstove is lit... Yes, I am able to sit in a cosy room with a woodstove now!!

    Interestingly, I a, mostly able to bring down that slight, on-the-way-to-a-flush, pinkness in my nose by closing my eyes for a minute and doing a mini meditation.

    I have been concerned for some time about the psychological component of the flushing aspect of Rosacea and three weeks ago, I addressed it though a hypnosis session, which tended to the anxiety component. I found it very helpful indeed... more infact than I had anticipated. I have been doing a 15 minute self-hypnosis session most days since and would say that this, plus the IPLs, have been the two things that seem to be turning things around for me.

    Whilst I feel with all my heart for the people who have had bad results from laser or IPL, I agree with you that the Internet is more populated with bad stories than good ones, it's our human nature to give a lot of our energy to the bad things that happen, I guess because we have powerful survival instincts that need to know all about what might harm us. We are also, of course, more likely to post here when we are desperate and needing help than when we are feeling OK about things... I know that, I've done it myself not that long ago and have been grateful for the support and advice I've received during those times.

    But I think we need to make more effort to post positive stories here in the forum too, precisely in order to redress that balance a little. I also think ... speaking for myself .... that the anxiety component of my Rosacea has been huge; I highly recommend light trance / hypnosis as a support to physical treatments.

    All the best.

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