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Found 4 results

  1. Dear everyone, I am not sure if my personal story is a very interesting read, since it is so similar to every other story in here. Nevertheless, it might be some who wants to read it, so I will sum it up very shortly in this post. For you who want to skip to my questions, I will post them in the last paragraph. My story - explained very shortly and simply Facial blushing (FB) started as problem for me when I was around 13-14 years old. I have always done well in school, but now presentations, group work or just raising the hand asking a question became a very painful experience. Going bright red, feeling the cheeks getting intensely warm and having stairs and comments from fellow students. I tried different solutions (nothing really helped, see paragraph below) so I started having suicidal thoughts when I was about 16 years old, because I didn´t feel I could be myself in this life and there were no cure for it. Was scheduled to have ETS when I was around 17, but cancelled before I had it, because the fear of the side effects. Had therapy instead. It is now 16 years since the problem started. It is not as bad as when I was 16, I am coping with the problem, but I am certainly not living life. I am far from where I could be in my professional life, and when it comes the social life it is practically non-existent (Dating isn´t an option and keeping meaningful friendship isn´t the easiest when you really want to have them being yourself, but at the same time trying to avoid different social situations because of the problem). Some of the things I have tried (none of them have been really successful) - Therapy - Hypnotherapy - Lasers * IPL laser didn´t work at all. But after about 5-6 treatments with the PDL (pulsed dye laser) Vbeam, the redness has been reduced about 20-25 %. Especially when flushing, like being outside in a cold weather and then going inside. - Beta-blockers * This I have found to be the best temporary solution available today. It doesn´t remove the blushing, but makes it much easier. I take them in situations I have to be in (like meetings at work), when I know I am going to blush. I take them 1 hour before, but I always get very tired for the rest of the day. - Being careless/not giving a f@ck. * It has somewhat helped, a long with therapy and coaching, in my everyday life. Focusing on what I want in life, vs what other people think, focusing on what is good about myself vs what is bad, etc. However, in FB-situations I have found it impossible to just focus on being careless. The sympathetic nervous system takes over and that you have no control over. - Different creams and cover-ups - Getting a tan - Growing a beard - Working out very intensely, eating healthy, meditate, etc. Different thoughts and experiences: I have read through tons of forums and webpages (this one and others) and spoken to different surgeons and doctors. I am amazed by how few good solutions todays medicine has to offer FB-people. Take Sweden for example. This is the country who invented the ETS-surgery, so they clearly acknowledge that it is a big problem for people in the society. Because of the side effects they have banned the surgery. But, the problem is still there! I can not believe that they let people just have the problem, and not putting money and energy in to finding better cures! The closest I have come to reading about alternative solutions are: 1) Stellate Ganglion Block. This is fluid being injected in the neck-area, and is supposed to paralyze the same nerve as you destroy in the ETS-surgery. However because of where you have to inject, you do it at the T1-level, which very often gives you Horners Syndrom. As I understand it the effects also only last for a couple of hours, which doesn´t make it a possible cure. 2) Botox. I have read that they tested this for FB in Great Britain around year 2008, but I am yet to hear about any successful results from it. It has become somewhat a mission for me, being a part of influencing surgeons/doctors/scientists to finding new solutions for FB. I am convinced that with todays technology and how much we now know in medicine, it shouldn´t be difficult finding better solutions than what is available today. In my opinion there are two ways to go about curing this: 1) Finding out why some people have more visible blood capillaries in the face, and from that finding out how to remove them. Of course, if you originate from Africa and have completely dark skin, FB isn´t visible. But for most people, with completely pale skin, it isn´t physically possible to blush no matter how embarrassed they get (they just don´t have capillaries in the outer skin of the face that are visible and expands). What is different with them? 2) Finding better cures than the ETS-surgery, that gives less side effects. I think there are particularly two things that doctors and scientists need to be made aware off, which could help in research being started and done on a bigger scale: - The ethical incentive: Making them realize how much this impacts the people having this problem. Just to mention some problem in my life because of this: Being rejected by girls when asking them out in a date, because I go bright red and that is a sign of weakness/insecurity and they want a confident man. Not getting a job, much for the same reason, at job interviews they want someone that comes a cross certain. Being assumed to be gay trying to get new male friends, because blushing when greeting them. Basically daily humiliations that destroys both the professional and social life. - The economical incentive: Making them realize how many who actually struggles with this, and how poorly todays solutions are. The people who finds better solutions for this, with less side effects, will by no doubt (and well deservingly) become very rich. I expect it also is a question of funding the research to start with. I myself would gladly help do this, and I assume I am not alone here about that on this forum, so if I come across a possible opportunity of starting to fund research with the focus on finding new solutions, I will let you know. I should also mention what KPRF is: It stands for keratosis pilaris rubra faceii, and is just fancy terminology for being born with red cheeks (Or it starts appearing when you are like 1 or 2 years old). Most doctors have not even heard of this, because it has been done so little research on. You can google it if you want to see a picture of it, and it should be noted that it is NOT the same as Rosacea. When I am calm the color is a light pink, and it blends in well with the rest of my face color. When I blush, the cheeks get dark red and very hot. I can blush for some seconds about something embarrassing, and then going back to the light color. But the worst scenarios are when I am in a "spotlight situation", like giving a presentation. That is a guaranteed blushing situation, but then my cheeks remain flushed for the entire situation and also for many minuets after when I am done with it. Like I have said, I am convinced we will find better solution to FB in the future. However I fear it will not happen too soon, and I think that I have tried everything else, but ETS now. Being the only possible solution left available, I am therefore again strongly considering it. If I go through with the surgery I will definitely come back and share my experience. So, this is the reason for the 2 questions I have written below: Questions: 1. Has anyone had the ETS-surgery, who before only blushed in the cheeks, and now are satisfied with the result? 2. Has anyone had the ETS-surgery, and before got red and it stayed like that for many minutes (perhaps even hours)? And are you now satisfied with the result? The reason why I am asking these two questions is because I am considering the ETS-surgery, and my problems are the two mentioned above. Also I have read several places that the surgery might not be effective for my type of problem (One source: http://www.chir.it/en_erythrophobia.php?lang=en)
  2. I had my evaluation appointment with dr. Lyall Gorenstein Feb 25, 2016. He was so understanding when he saw me crying and turned red from my face neck and chest. I told him how this blushing had affect my life to the point of thinking about suicide. He said "dont be silly" "you have a husband and a daughter" they need you. He also said I was the perfect candidate for the surgery because my blush is in my neck and chest( specially when I cry). I asked him why this happens to me and he said that not all questions have answers. That, that's the way I was born. He also said "blame your parents" I didn't quite understand that. He took a picture of me to have a before and after. He said "we will take care of you" "dont worry anymore". Those are the swetest words I have heard in this year. Im soo happy and wanting this month to fly. I will be devastated if my insurance rejects the surgery. This is my last option. I have faith in God that everything will come out fine. I can not wait to start enjoying my life completely. I want to find out If someone in this forum have heard about him, or know about him. It will be very helpfull for me.
  3. Hi all blushers (and hopefully many former blushers!)! The goal with this post/topic is to create an arena where people who have had ETS-surgery goes in to detail of how effective it was curing blushing and what kinds of side effects they got from it. The reason why I have created this topic is because I believe it will give a wider and more accurate picture of what to expect from the surgery, which will enable people who haven´t had the surgery yet to make a better decision of whether to go through with it or not. The information out there is very diverse. The surgeons base their information on side effects from a question form sent out usually 6 month after surgery. From what I have read in different forums, the most severe side effect don´t start until 2 years or more after the surgery. Also the results seem to vary based on factors like whether you are male/female, how old you were having the surgery, if the nerves got clamped or burned, if you are overweight or not. Information that we don´t usually get from surgeons, but that people report from forums. And lastly, people write about side effect they got from the surgery, that surgeons never mention. I have read through a lot of the testimonials and forums on this site and others, but there often lacks a great deal on information. Plus, it seems to be the same people responding over and over again, which doesn´t give a wide range of experiences. It also is both hard and time consuming for people searching through that much information. Hopefully, after people responding to this post, we will all have a clearer and greater picture of the truth of the ETS-surgery. To make the posts on this topic as complimentary and accurate as possible, I have made out some guidelines for what should be in your post. Please try to follow them to the best of your ability, as I believe it will be of great help for many. Some questions might be a bit uncomfortable to answer, but keep in mind that none of the answers will make it possible to link up the information to a specific person: - 1. First, ONLY write a post if you actually have had the ETS-surgery (or a blushing surgery called something else, like the ESB-surgery). This topic is made specifically for this. - 2. Try to say all that you want to say in ONE post, as this topic is meant for as many different peoples opinions as possible. - 3. When did you have the surgery done (year and month)? - 4. How old were you when you had the surgery? - 5. Are you male or female? - 6. Did the surgeons cut/burn the nerves or did they put on titanium clamps? And at what t-level did they do it? T2? T3? Both? - 7. Are you overweight? Do you eat healthy? - 8. Did you get CS (compensatory sweating), and how bad is it? PLEASE go in to details. How is it affecting your daily life? Do you just sweat a little bit more during workouts or do you get soaking wet just by going outside on a warm day? - 9. Did you get dry hands, and how bad is it? Do you have to just moisturizer once a day and then they are like normal, or do you have constant dry hands no matter what? Please go in to detail on how it is affecting your daily life. - 10. Did you get cold hands? - 11. Have you lost hair on you head or facial hair? - 12. Is it harder exercising now? How bad is it? - 13. Has the sex life got worse after the surgery? Like have you got decreased libido? - 14. Have you had problem focusing on mental tasks? Like studying for many hours or doing some kind of intellectual work over a longer period of time? - 15. Have you had problems with your upper body getting over-heated (split body syndrome)? - 16. Have you experienced you personality changing? Not being able to feel strong emotions, like positive highs or negative lows? - 17. Has your energy level decreased? - 18. Any other side effects you had that aren´t mentioned above? Everything you share is appreciated, and the more detailed you are, the better. - 19. How bad was the blushing before the surgery? What kind of situation would make you blush? Did you get red and warm and then it would quickly go away, or could the redness and heat stay for many minutes to hours? - 20. How is the blushing problem today? Do you blush at all? - 21. How is your life in general after the surgery? Happy about the result? From your perspective, do you recommend people going through with it? (I am myself in the position of trying to gather information and then decide. Had I done the surgery already, I would of course also have started of this topic with a post of my own experience). To all who have had the surgery done, and choose to share their story about it, a BIG thank you! I am sure it will be appreciated by a lot of people!
  4. Hello, I just created an account today february 28 2016. I'm a spanish 25 female lady. Sorry if you see grammar errors. I am so happy because I will finally be able to have surgery done for facial blushing after dealing with this desease for more that 7 years now. Since I was 19. The only reason of this post is to keep you updated of my process. I live in new jersey and I will be having surgery in new york. I already talked to the doctor and he saw my chest neck and face go bright red.so, he knows I need the surgery asap. Please feel free to ask me any questions you might have. Doctor told me to wait a month for the insurance to accept the surgery. I'm hoping they don't reject the surgery. I will start to record videos of my before life and after. Hopefully I find support in this website because to be honest I'm scared to death of the negative side effects. Hope to hear from you soon.
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