Update: Drugs, surgery, prospects of the future and more Hi everyone! It has been some time since I have made an update. I have tried some new things, read even more and I also have not responded to everyone. This update will therefor be quite long (I probably have to put it out as several posts), but I think it will give value to people who are interested in this. 1. Afrin Nasal Spray I tried this, but it did nothing for me. 2. Botox I have recently tried out this, as there are some studies suggesting this could help. Unfortunately it did nothing for me, with neither blushing or flushing. 3. Medication I don’t have too much new information to add here. I think a combination of a small/medium dose of SSRI/SNRI + a small/medium dose of a beta blocker is the best way to go. It is not at all addictive or dangerous to use long term. And you can change or stop as you wish, until you find what is best for you. Regarding SSRI/SNRI I think you have to try out several types, since people respond different to different brands. Regarding beta blockers, both Atenolol and Propranolol works for me, and Atenolol has the least side effects. Unfortunately neither works for an entire day (Atenolol needs to be taken at least twice a day and Propranolol at least 3 times a day). I have heard of some beta blockers that is suppose to last for an entire day, like Nadolol (Corgard), but it is my understanding that it is not common to use this for blushing. I have not been able to try this out myself, so I don’t know if it would work or not. 4. Lasers I see someone asking about this. I have now had about 12 laser treatments, with the best and newest of lasers (Both Vbeam and Cutera Excel V), using the highest intensity they offer. It really does not work, and I have not talked to a single person that is satisfied with their result from lasers. At best you get a slight reduction of redness and heat of the face, but that’s it (In no way do you eliminate permanent redness, flushing or blushing). I have also visited 5 different dermatologists, and talked to even more online, to get different opinions. They all basically say the same. That KPRF, Rosacea, flushing and blushing have been studied very little, so they don’t know much about it, and that laser treatments is the newest and best solution available for killing veins in the face. Here is the thing, it may very well be the best thing available, but that does not do any good when the “best” thing available does not work at all. And the bad part is that many dermatologists market this as giving excellent result, almost praising it as being the greatest invention since fire, and showing great before and after picture. This is complete fake, and so easy to manipulate. They often show the same pictures, with patients they have not treated themselves. Also, the “before picture” may be taken right after a laser treatment, when the skin is completely flushed. When they the next time take a picture, the skin is of course less red, but this should not be credited the laser treatment. This is just a normal not-flushed vs flushed type of scenario, and has nothing to do with laser results. Also, since the body always produce new skin cells, even if the lasers would work, you still would have to keep having lasers your entire life, since you are not dealing with the underlying cause of the red skin (Just trying to reduce it superficially). Summation; lasers are not the miracle cure dermatologists market it to be. 5. Surgery I have read everything I have been able to find about the surgery for blushing, both forums (people who have had it done), what surgeons say and other medical rapports. It can be of great help for blushers, but on the other hand it is very controversial and can cause severe side effects. From all the information I have gathered, here are my thoughts: The most important thing for me if I went through with the surgery is: - Only operating at the T2-level. o This is because studies show this to be the nerve ganglia that most of the times are responsible for blushing. Also, the less nerves you operate on, the less risk there are of getting severe side effects. - Using clamps (not cut or burn). The so called ESB or ETS-C surgery. o I do not consider the surgery to be reversible, but if I got major side effects, they might be reduced somewhat if I got the clamps removed. Also, by not burning, you do not have the possibility of the heat destroying other nerves around the T2-level. - Going to a very experienced surgeon. Side effects to be expected (Basically guaranteed): - Drier hands and face. o But hopefully that it is not bothersome thanks to lotions. - Sweating very little, or not at all, over the nipple line. - Sweating more below the nipple line (Compensatory Sweating - CS). o Hopefully to a degree that is not bothersome in the day to day life, but that you sweat more for instance during exercise and in extreme heat. - Reduced heart rate - Reduced physical ability o Hopefully only to a small degree. Like you will not have the extra competitive edge that professional athletes need, but you will be able to work out at a high level. Side effects not to be expected: - Horner’s syndrome. o This is almost impossible to get with today’s methods. Using clamps, even if you clamped the nerve responsible for the eye lid muscle, you would immediately notice it and just move the clips further down. Side effects that I have read people getting, but that I consider to be unfortunate: - Severe CS - Feeling constantly tired, and also not being able to concentrate or work out hard - Being constantly, or more often, flushed and warm in the face. - Gustatory sweating - Being either very cold or very hot, and not being able to feel good because of this (Having the “natural thermostat” broken) - Super dryness over the nipple line, like very dry eyes, scalp, etc. - Wrinkles and premature aging of the face. Also, it actually is not a guarantee that the surgery will stop blushing completely, though statistically it is a great chance that it will (Around 85 % of the times in several studies, and down to 46 % per cent when long term success rates were studied). There are also studies showing that the surgery does not work well for slow increasing flushing/blushing, like when you give a presentation and remaining in a stressful situation. That it only work well for that “quick appearing blushing”, like being caught off guard. Other thoughts: - The medicine that worked the best for me was the beta blockers. A beta blocker works by calming down the "fight and flight" response of the nervous system. This is the same part you operate on when having surgery. This might indicate that the surgery will be successful. This is not a study, just a thought I had. - The surgery is extremely controversial. In Sweden, where they first started with the surgery and where they have operated over 3000 people, it now is illegal. This is because they have seen the consequence people have long term. When you decide to make a surgery illegal, after having that many surgeries done, it is not without reason. Also, there are not many surgeries who has their own websites dedicated to warn people about it (Which the ETS/ESB surgery has). Again, this is not without reason, and shows the seriousness of the possible side effects. - Some private surgeons market this to do more than what it actually does. I think everyone who have read forums like this know that the surgery is not intended for flushing, only blushing (This also surgeons, who particularly work in countries with free health care, and don’t personally gain from people having the surgery, will tell you). But this girl; https://www.youtube.com/watch?v=CUoDzb1fER4&t=2s, had a flushing problem and went to Dr. David Nielson. As she explained, she was told that the surgery would be perfect for her, but now that she has had it done she realizes it has done nothing for her. This is very sad. Everyone who have read about the surgery knows it is not meant for flushing, and there is no way a surgeon who have done many surgeries wouldn’t know that. This shows that some surgeons care more about making money, than providing the most value for their patients, and people should be aware of that. - The video above also proves that increased redness of the skin is not caused (only or not at all) by an overactive nervous system (Her nervous system is now destroyed, and the flushing is the same). When you blush your nervous system definitely gets activated, which is why the surgery can help. But I feel like surgeons at one point said, “the sympathetic system starts the blushing, so let’s just burn of the nerves and that will cure the problem”. History has shown that this is not the all time cure some surgeons make it out to be. Increased redness has to do with genes, having more capillaries than others, skin prone to reddening, and probably because of factors we do not yet know (Like maybe hormones or something completely different?). - There are 2 things I miss the most, that I not have been pursuing because of blushing, and that is getting a girlfriend and going for the career I want. If I went for the surgery it would be because I expected to be able to go for these things afterwards. When I then read about for instance @Filur explaining how he could not cuddle with his girlfriend after the surgery because of CS, and that other people still had increasing blushing in situations like meetings and presentations, this to me makes the surgery less attractive to consider (And even more of a gamble). 6. An other proof that this is a physical, not psychological, problem: https://www.youtube.com/watch?v=gSw-0UuCpNQ A video of a minister in Australia, Barnaby Joyce, who blushes on live television. As you can see in the video, he also has KPRF. The video also shows what it looks like having constant red cheeks, and how you easily therefor also have chronic blushing (And the face, but particularly the cheeks, get more red). It is particularly 2 things I take from the video: First of all I get really proud whenever I see someone with a condition you can do nothing about, who despite that go out and do their best. Second, it shows that this is not something you just go to therapy to get rid of. I don’t think this man has a problem with his confidence, it simply is that when you have chronic blushing you are going to get red when you feel strong emotions. That is how you are built. As he says himself; “I am always blushing, it is a problem”. If someone reads this, who don’t have chronic blushing yourself, I will shortly try to explain why it is bothersome: Imagine having a sign at your face everyday for your life, that can start to blink and when it happens you feel and intense heat of the face. Also, when it blinks it is socially perceived that you are embarrassed, are hiding something, are shameful or have low self esteem. Most people might just have a “big blink” once every 6 month, when they get really embarrassed. And other people can get really embarrassed, without the sign blinking at all. When you have chronic blushing however the sign starts to blink every day, just simply by feeling strong emotions. And you have no control over it. I am not saying you can’t have psychological problems as well, you absolutely can. But you don’t blush because you have a psychological problem, you get psychological problems because you blush all the time and there is nothing you can do about it. Because how should you react? It happens when you feel something, and being in social situations. And particularly in situations when you need to keep your head cool, like asking someone on a date, giving a presentation, or just having a simple discussion. Should you just laugh about yourself every time it happens (Like Barnaby in the video), even though it is not funny, you just can’t help it? Hide from the world? Of course you can try not to care about it, but it is not that easy when you everyday have a face that lights up, you feel the heat and you immediately see a reaction of aversion in the people around, and you constantly send out signals that something is wrong. 7. Illegal drugs I read on this forum someone talking about using mushrooms or marijuana for solving this. So I thought I should comment, but this is my first and last time commenting on this. The reason for this is that I have absolutely no experience of this. The second reason is that I personally think this would be going in the wrong direction. I absolutely have no judgement over the people turning to this, and I understand completely the frustration of not finding good solutions and wanting to try everything. But I think using for instance prescription drugs in cooperation with your doctor will be more effective and also a lot safer. 8. Future Prospect – Gene Technology Gene technology is actually no longer science fiction. Thanks to a newly developed method called CRISPR Cas9, it has become easy for any biologist to use gene technology (For a quick introduction video, check this out: https://www.youtube.com/watch?v=jAhjPd4uNFY). The main key is that it is possible to identify the exact part of the gene that causes an illness that is unwanted, like blindness, cancer, and illnesses that are relevant for people on this forum, KPRF, Rosacea, excessive sweating, blushing, etc. It is possible to remove the exact gene that are responsible for these illnesses, without hurting anything else! Imagine that, these illnesses have no benefit what so ever, and now it can be possible to get rid of them! Believe it or not, there are people who are against using this new technology in medicine. For our part, curing conditions like KPRF and blushing, there are two main challenges that need to be overcome. These are: 1. Not letting ignorant politicians and other negative people winning the debate regarding this technology. 2. Raising enough money specifically for finding a cure for blushing, flushing, KPRF, Rosacea, etc. As with everything else, money is what decides where the focus will be on. Other arguments in favor of finding a solution for these problems: - Even though these problems (KPRF, blushing, Rosacea, excessive sweating, etc.) are researched way too little, they are identified in the medical world as serious problems. Otherwise dermatologists would not use laser treatments for this, and surgeons would not carry out surgery for this (They even give the ETS surgery out for free in countries with free health care and it is covered by insurance in other countries, simply because this is recognized for what it is: a serious problem, not a cosmetic one). Hot flashes for women during menopause is recognized as a problem, that they are trying to cure. It is basically the same as flushing and blushing that the people of this forum is prone to, except they are lucky only to get this for a short period, whereas we have the heat and redness daily for our entire life. - An other point proving that this is not a cosmetic surgery is because of the suicides that have occurred due to the severity of the problem, combined with the lack of good solutions. Also, the fact that there are thousands of people who have had the ETS-surgery done, despite knowing what kind of side effects they can get, shows how serious this really is. If the problem just were of a cosmetic degree, there would not be a single person risking the outcomes of this surgery. One of the main arguments from critics (which are mostly super religious people) is basically that humans are the way they are for are reason, and that it is wrong to change this. I am baffled by this kind of argumentation. In my opinion, if you are going to be against medical progress, then you have to be against everything about the profession of medicine. If you believe it is God’s plan everything that happens, then you would have to stop doctors from existing, stop giving vaccines and have people die of diseases like tuberculosis and measles (Which people died of in the millions before, but thanks to research we have found solutions, and this basically no longer exists). Take KPRF, this is constant redness of cheeks (which makes blushing and flushing major problems) + bumps on the skin (Particularly on shoulders and upper-arms, which can itch a lot). Flushing and itching also get worse in certain weathers and when eating certain foods. Same with Rosacea. The redness and skin irritations is a little bit different, but the concept and the triggers are the same as with KPRF. Having these conditions does not serve either the people who has it or humanity in general anything at all. It is nothing but pain! Finding the gene responsible for KPRF and Rosacea, you could simply just remove it. Just being rid of the redness, and not having to have ETS-surgery or use meds that can destroy your health (Being rid of the exact problem, not having to get any negative side effects). Sorry for writing to this extent, but I wanted to make sure that my points came across, and that it is clear what the debate is really about. A part of the debate is that we should find out if this is a safe procedure, both now and for the future. This part of the debate I fully support, and we definitely should make sure that it is safe to use this. But another part of the debate is that some people say that it is wrong to progress with this, simply because they feel it is wrong to do something with the genes. I mean, just imagine finding the gene responsible for blindness, meaning that we have the possibility to get rid of blindness in humans forever. And then telling a blind person that we have a completely safe method in curing her, but that we feel that it is wrong and therefore we will not allow it. This is the part of the debate that I find utterly insane. If it proves to be completely safe (which it seems to be), but not using this technology just because some people do not want to do something with a small part of the genes, in my opinion is as wrong as it could get. 9. Other thoughts regarding the future If the only options that ever would be available are the once we have today (Which basically is either surgery or medications), I probably would just go with the surgery. For now, medications do work somewhat, and hopefully we will see better solutions in the future, so I am not going for surgery just yet. I must say I am totally disgusted of how few options people with this problem are faced with. No matter what you choose it involves hurting part of your health, and you just have to hope that the side effects is not as bad as the original problem. Having tried basically every possible solution there is, talked to a bunch of surgeons and dermatologists and read all I have been able to find online: The true conclusion is without a doubt that the medical field knows way too little about this (Both Chronic blushing, flushing, KPRF and Rosacea), and better solutions need to come. A problem with medicine today is that they value survival, compared to valuing having a great quality of life. For me at least, the meaning of life is living your life to the fullest and expressing all that you are to the world, not just try to survive for as long as possible. When you are not able to be yourself every day in your life, while simultaneously not seeing any chance of a solution, that is what causes depression. Even if you manage to achieve certain things, without fulfillment, that really is failure. I know for my part at least I would gladly live 50 years without this problem, instead of 150 years with this problem. A second problem is that the doctors, politicians and other people who might be against the progress of curing illnesses, have not had to deal with this themselves. They might understand that it is bothersome having a problem, but they can not comprehend what it is like living with a problem that affects every part of both the social and professional life. Thankfully there are people (dermatologists, plastic surgeons, institutions, etc.) that do have a focus of increasing the quality of life for people. I don’t have the delusion that gene technology is the absolute answer to this. It could prove not to be safe or not work well, and/or it might be a better or less invasive solution to this. I see for instance a couple of people have posted new studies being done in finding solutions to menopausal hot flashes. To me it is kind of ironic that hot flashes are being treated so seriously, and doctors do everything they can to treat this. But people with chronic blushing or flushing, who have the same symptoms their entire life (not having to endure this only during a short period -menopause), are being told to seek out cognitive behavioral therapy to learn to just accept it. This is crazy. If a doctor can comprehend that it is bothersome to flush during menopause, they should be able to recognize it for people with a skin condition who has this every day, their entire life. But anyway, the good news is that research for hot flashes might benefit chronic blushers and flushers somewhat also. Also, the combination of how many people that struggles with this + the few and terrible options available, would make the person responsible for providing better solutions a very rich person. That is a good incentive for organizations and people to invest in finding better solutions. 10. How to have new treatments available As I see it, there 4 ways of making this happen: 1. Creating awareness in the medical field about how substantial this problem is 2. Supporting new technology – being pro when voting, etc. 3. Supporting projects financially (As this will not be researched unless someone is paying for it) 4. Becoming a medical professional yourself, and being part of the research As I am not in the medical field myself, I am going to do what I can regarding the first three steps. I hope others find their best way in supporting this. 11. YouTube videos and online sites Even though we should not accept having this condition, and we need to find better solutions, I just wanted to end with some thoughts that has helped me dealing with this condition. I think part of why it becomes such a big problem is because of how misunderstood this problem is. And when you get the courage to talk to your doctor about it, since they often know nothing about it and relate it to their own normal blushing (which is not the same as chronic blushing), they often only say you need therapy. The sites I am linking really has made me care less that I am blushing. Just knowing this is a genetic condition, and that other people who has this feel the same in social situations, I feel makes it easier when for instance meeting a negative doctor (We really know more than many does on this subject). Again, I am not claiming just working on your thought process will stop blushing or not make it bothersome, but perhaps it can make easier to deal with and pushing you to live more. My personal goal anyway is to: Find the best possible solutions available (For me that probably will be medication, but every person must decide for themselves whether it is that too, surgery or something else), and then just deciding that: It is good enough for now to live my life. And if I still should blush from time to time, just thinking it is not the end of the world. Yes it is bothersome, but it does not hurt anyone. If a person feel the need to make a big deal of my blushing, that really is a shallow and negative person, and not a person I want to hang out with or take advice from anyway. Again, I am not trying to underrate the severity of chronic blushing, because that should not be done! Just reflecting on some thoughts that might be healthy to consider. There has been suicides because of this, and it’s been written in the suicide letter how it is because of blushing and that they hope awareness will arise on the matter. I fully get this reasoning. A part of feeling your life has meaning is by contributing and not just living for yourself. When you feel you can not do that alive, at least you can do it by creating awareness when killing yourself. Even though I fully get that reasoning, it is so sad and I hope the world never sees another suicide because of this condition. Something that has given me meaning (That other might copy - just glad if someone does) is: I know what a hell it is having this condition, so I am going to support new solutions to this the best way I can. Of course, the more people working towards new solutions, the quicker new and better solutions will come. But even if I never got to take part of them myself, knowing that the people coming after me would not have to go through the same suffering as myself, would make it all worthwhile. Anyway, below is some of the sites/videos that helped me: A guy shares his concrete thought process of how he managed to not care about blushing as much: https://www.youtube.com/watch?v=tmN1s2-Kxjc&t=185s A girl who talks of the problem in a way I think many can relate. I particularly like the reflection of how much she has lost out on, and that even though it is bothersome, accepting it and moving on, you can stop being stuck and live more: Video 1: https://www.youtube.com/watch?v=NKkBCmc1AJA Video 2: : https://www.youtube.com/watch?v=tO-5aV3ZwtM I just want to send a big thanks to all the people in the videos. They are braver than me, as I don’t think I myself would upload a video talking about my problem like that. But it really is helping people and also spreading awareness, so thank you! The webpage written by the parents of Brandon Thomas (One of the persons who have committed suicide because of this) together with Dr. Enrique Jadresic (A doctor who himself has suffered from chronic blushing and who has written the book; When blushing hurts). It both tries to explain how the problem affects the persons suffering from this and also showing treatment options. Every doctor who has a patient with this should have a look at the website: http://chronicblushinghelp.com/whatischronicblushing.html If you who have put the site together read this, thank you! This is the end of the update. I know it is very long, but my goal was to give as much value as I could. I hope many find something that can be useful, so that you can come closer to living your life to the fullest, while we simultaneously work out a solution, without severe side effects, that get rid of this condition once and for all!