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mugsy

FB. Enough is Enough. Meds vs. ETS?

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I have had chronic, pathological blushing since childhood. That is the first time I have ever written those words. I've never said them aloud.

 

Aside from overhearing people say, "Aw, look how red she's getting", my reddening is not something that has ever been discussed or acknowledged by my friends or family. I guess it's the "red elephant" in the room. How have people not asked me about it? How have I not had the courage to bring it up? I have never even had the nerve to research it. I guess I thought that admitting that it happens, even typing the words into a computer, would have been letting it win, making it real. And if I had ever had the courage to talk to my family about it, two things would have happened: 1) I would have blushed (and we all know that we avoid any situations/conversations that make us blush) and 2) they wouldn't have understood.

 

I have never even googled blushing before today. Once I did, I was shocked to learn that there are so many other people who suffer from this condition. And I mean suffer. I felt such relief to know I was not alone.

 

I am going to assume that anyone reading this does not need the bleak, destructive effects of facial blushing on one's life explained. How the fear of blushing is all consuming, or the havoc blushing reeks on one's social and professional life, how infuriating it is having a condition like this because you know you are better than this, more confident that your face it letting on, not embarrassed, not shy, not pathetic, not someone people should feel sorry for. Did I mention, "Aw, look how red she's getting?"  

 

I cannot say that any of the websites have helped me understand or explain why I redden when the cashier at the supermarket asks me a question, or when I am called on unexpectedly, or when I run into an acquaintance on the street, or when I think I may have said/done something wrong, or when I have to repeat myself because someone didn't hear me. But now I know there are treatments. 

 

I used to wish that I was of a nationality with darker skin so that no one would see the blushing. As a kid I was jealous of my friend with the jet-black skin. In high school I used to wish I was an inanimate object. There were days where I would have traded my life for that of a pencil because pencils don't blush. Crazy, huh? I have considered ridiculous solutions like staying chronically sunburned, or always being "two and a half glasses of wine" tipsy, or pretending to have chronic allergies so that I could cover my face with a tissue at any given moment. If women could grow beards, I would be the Wolfman.

 

I know, I am being too garrulous. It's just that this is my "coming out of the oven" so to say and I'm still shocked that this community exists. I don't know my next move though. Can anyone share any thoughts or recommendations on meds or cognitive/behavioral treatments that may work? Although I would let a doctor come into my house right now and perform ETS on me on my kitchen table with a butter knife (now that I know such a treatment exists), I know it would be more prudent if I try other treatments first. Any feedback would be very much appreciated. 

 

Yours in redness,

  Tomato Face

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Welcome to the board!!

 

I remember when I first discovered this community, it must be over 10 years ago now - it was such a relief to realise that I wasn't alone in this and other people had the same struggles as I did.

 

Unfortunately the board isn't very active these days - I'm not sure where everyone went?? Maybe there is a cure after all and they're carrying on with their new lives!

 

Not to dishearten you but there is currently no cure for this condition, and unfortunately there is little research into it that I'm aware of - I'm just not sure there is much awareness of this condition in the wider world, and unless you have had it its difficult for people to comprehend how blushing can be such a big deal.

 

I do know that some people have found ways of helping to manage the condition:

- propranolol; helps to reduce that anxious/on-edge feeling

- camouflage make-up - not really an option for us guys

- botox - this seemed to be quite succesful in the trials that were carried out but not many people seem to have given it a try; if you have a search on here you'll see some people experiences of it and they report good things; this is likely something I will try in the future

- ETS; obviously this is the biggie! I guess if you destroy the nerve that causes the blushing in the first place then in theory this should 'cure' you. Unfortunately, it is difficult to predict how it will effect the physiology of the nervous system and there can be some unpleasant side effects, such as compensatory sweating - being a sufferer of hyperhidrosis already, I can tell you that this is just as bad as blushing if not worse.

 

 

My own opinion is that somewhere in our autonomic nervous systems there is a 'fault'. This fault causes our sympathetic/parasympathetic n.system to trigger at much lower thresholds, hence we blush more easily or we sweat excessively in even slightly warm temperatures. Where this fault is, I have no idea. If only we could come together as a group and figure this out, I for one would be more than happy to have tests/trials in order to figure out the cause. At the end of the day, when something isn't functioning properly - there has to be a cause for it; it cant just be one of those things. Likelihood is that it is something at a cellular level and nothing something that would show up in routine blood tests.

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Thanks for your response Beetroot! Your feedback is really helpful. The surgery does sound controversial and risky but some days I feel like I would try anything because I am so tired of being aggravated at myself for not being able to control this. I have always felt as if it is a weakness in myself (although I do remember that, when learning about the sympathetic nervous system in grad school, I realized right away that mine is an overactive one). I agree with your opinion that this condition is a fault in the nervous system. I believe for me it started as a physical condition in childhood and worsened because of the psychological component, that being, the fear that it would happen when in a pubic setting from which I could not escape (classrooms/meetings have always been the worst for me... or I guess any time that I'm put on the spot). Before I knew ETS existed I used think to myself "if only there was some kind of brain surgery I could have to calm my sympathetic nervous system."  Imagine that? I wished for brain surgery. Well, now I know there is a surgery and it doesn't involve drilling into my skull. I am going to make an appointment with a few doctors (all thoracic surgeons I believe) that I have found who specialize in this. I think I would try meds before surgery but I really don't want to be on anti-anxity meds my whole life. Surprisingly, I am actually a very social person and don't really consider myself an anxious type, only my face is. As a woman, I use concealer but that has never been too effective (although I have read that many women with FB use green concealer because it is opposite from red on the color wheel). Also, as a woman, I would love nothing more than to inject my entire face with Botox (no more frown lines!) but it's very costly and only lasts 3-4 months. I too would not at all mind being involved in clinical trials, but as you said, there is not much of a public knowledge of this condition and; therefore, not many clinical trials exist. 

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Hey

I know exactly what you mean. We blush more easily but I think possibly the worst part of our condition is the anticipation and anxiety in those situations where we fee a blush might occur. It would almost be good if we had a memory like a goldfish and didn't remember that we blush easily, when it happens it happens then we forget about it. Facial blushing has really ruined my life, it caused social anxiety and put so much pressure on me not to make mistakes e.g. work, that meant I had to try for perfection in everything I did, this ultimately put me into depression, I had some very low days years ago. After some therapy, I now understand where my depression comes from, whilst it does nothing to help the blushing it has helped me recognise the negative thought patterns I go through and I can stop them in their tracks.

If only I could flick a switch and just be normal, I feel my life would be so much better and happier. I am relatively successful in my career and popular socially, I guess my friends/colleagues would never realise I had a problem but it is still something that haunts me on a daily basis and rules my life. I can only imagine a life where k don't have to play out a million possible scenarios for every encounter.

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Memory like a goldfish, I love it.  I could have written every word above because it is all true for me as well.  If I were to tell my friends, husband, or family that this is something that I really struggle with, they would think me crazy. They see a different person that the one called on to speak at a board meeting. I too am a perfectionist at work because if I do nothing wrong, then all goes smoothly (in theory). I am sorry that you have had struggles in the recent past, I am glad to hear that therapy has provided some help. You are stronger than me though, I am not able to talk about it with anyone (verbally); I feel too ridiculous. I think I may be in a bit of a slump like you. My life is so busy that I really have no down time, but when I do, I am not motivated to do much of anything. *sigh* Where is that switch?

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Trust me It took a lot for me to start talking to someone about it. Essentially I was very depressed and didn't know why, but once I worked through my thought patterns we realised it was all down to facial blushing. I had a bad last few years of school as some people were aware of my problem and found it entertaining to watch me squirm- God I despised those people, but then it's difficult to stand up to them as we all know we don't like being put on the spot!

I think we need to get this forum more active and come up with a plan of action to get us moving forward towards figuring out the cause of this.

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I hope to offer some additional support to Mugsy. I just posted quite a bit in response to redfaceflusher who is having surgery on the 25th of this month. Check it out. In short, I had the surgery 15 years ago at age 45. I never looked back! The CS is nothing compared to the torment of the facial blushing. I suffered immensely, with relationships and employment. I even believe it thwarted my social development and missed out on developing better social communication skills earlier in life, which caused the problems with relationships and employment. In any event, it is important to find a skilled surgeon who has success in performing the surgery for patients. There are probably many more now than there were 15 years ago. I consulted with several that had the surgery first and one was a wife of a physician who advised her to go to a particular physician in California just because of his success record, so that is where I went. However, my daughter had hers done here in Baltimore, MD. Both of us have no regrets. Hope this helps. Perhaps those that have had the surgery and have moved on, have no need to come to this site. I only came randomly because I ran across a book written by a psychiatrist who had the surgery, Enrique Jadresik, When Blushing Hurts.

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Mugsy,

I would definitely try medication before ETS.  I have done both but I did them in the opposite order.  Blushing went away for 6 months after ETS and I'll admit it was great sitting in class without an ounce of anxiety about blushing.  Then it came back and destroyed me again.  I had a breakdown one day and decided I couldn't go on anymore so I went to see a psychiatrist as a last resort.  The therapy with the psychiatrist helped me see the blushing in a less threatening way but it did not eliminate it.  He gave me Prozac and Xanax as well.  The Prozac eliminated 70% of the blushing for day to day life.  But if I had a big presentation or speech I had the Xanax to take just a half hour or so before that would eliminate the blushing completely.  Medication doesn't work for everyone though and having to take medication sucks but if it eliminates blushing then it is worth it.  Plus if you don't like the medication you just simply stop and your body will go back to normal.  Not so with ETS.  ETS may or may not eliminate blushing and there may or may not be terrible side effects...and guess what, they are permanent. 

 

As I get older I lean more towards the idea of just accepting the condition and learning to live with it.  Yes it destroys social life significantly but that's not always bad.  There are many people in this world who are not worth knowing.  As far as professional life goes, yes that gets destroyed as well.  But there are a lot of jobs where you can work from home that pay well so it's not like you have to suffer.  Yes this will isolate you even more but at least you won't be getting tormented by being at the office all day and going to meetings.  You mentioned a husband.  That is great.  I wonder how bad this condition really effects you socially if you were able to find a partner.

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Thanks for your response scarface, your story is really helpful. I am surprised to hear that your ETS was only effective for 6 months (I imagine no one was more surprised than you), because I would think that once the ability to flush is physically severed, you simply wouldn't be able to flush. That must have been a wonderful six months. I have considered meds and plan on making an appointment with a psychiatrist but I hate the thought of being dependent on a medication.  I never take any, not even Advil or multivitamins. I made an appointment with a thoracic surgeon for next Thursday because unfortunately, since I starting researching FB and discussing it on this blog, I have found that it has become worse. I think it's because it is now all I think about, which increases my fear that it will happen, which increases the blushing. Over the past few days I have been blushing in situations that I normally would not. ARGH!  So frustrating. My blushing is weird, in that, when I am in control of a situation or with people with whom I am comfortable, I won't blush (much). I think it's akin to how many stutters don't stutter when they speak to a child or an animal. Socially, when I'm out with a few people (like last night in a dimly lit bar), I am the life of the party (or so I think!). A social dynamite! It's the me I would be all the time if not for this stupid blushing. I am loud, talkative, outgoing, telling stories, making jokes, etc. I probably appear super confident. But I am talking on MY terms. I've initiated it. Lights are dim. I have an out (I can say I need to use the bathroom). Oh, and two glasses of wine doesn't help. I am probably blushing throughout the night, but I guess I'm thinking that since it's dim, nobody is the wiser, which in turn decreases my fear. Compare that to yesterday afternoon when I had to return something to the store and the manager said "but this receipt if from over a month ago." Yikes!  That stupid switch inside me went click and I was toast. Burnt toast. As far as finding a partner, once I become comfortable with someone, I don't blush much. In fact, I don't even know if my husband knows it happens to me. None of the men I have ever dated have mentioned it. If the ETS were to become a reality, I don't know how I would even tell him about. Maybe he should have been at the deli with me the other day when I accidentally ordered "only 6 pounds of swiss cheese" instead of "6 slices". The deli guy had a field day with that, to my dismay. As I get older I find myself less willing to accept this condition and I'm not interested in learning to live with it (I've done a sucky job at doing that thus far). I guess I would have to if ETS or meds don't work, but I'll cross that bridge when I come to it. I get so mad at myself and disappointed with myself when I blush. I want to advance my career but I can't do it like this. I want to give speeches, speak at meetings, defend an opinion I may have and for christ's sake, be able to say hello to someone like a normal person when I run into them unexpectedly at the bagel store.

 

I am sorry to hear that the ETS didn't work for you but I am so happy for you that you found the right combination of meds. It must be nice to be normal.  I'm sick of being like this and want to function to my full potential. And be normal. 

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Springhawk,

 

Blushing and anxiety are connected.  It is a vicious cycle where one causes the other and vice versa.  ANYTHING that breaks the cycle would do the trick.  ETS paralyzes the skin in your upper body (among other things) so yes that would eliminate the blushing .  But medication can also make you not care and feel indifferent towards the blushing and that would work too because either: a.  you won't worry about it so it wont happen, or,  b.  you wont care if you do blush so excessive blushing isn't a problem for you anymore anyway.   

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I agree with scarface. For me this began in childhood as a physical reaction, one I was probably too young to understand. I likely didn't even realize it was socially abnormal. I don't know why it began, just cursed with a hyperactive sympathetic nervous system I guess.  As I got older, I became aware of the blushing, which created a fear that it would happen, which in turn increased the likelihood that I would blush. That's the psychological component. Vicious cycle is right. And yes, anything that breaks the cycle would be the answer. It's different for all of us.  Per my last post, I had decided I don't want meds everyday and had decided to try ETS. That was yesterday. After I posted that I found a website with posts from post-ETS side-effect sufferers that scared me SO MUCH that I don't know if I want to take the risk. I won't even post the link because it was THAT SCAREY.  I'm torn. I have two appointments on 2/9, one for my pre-op testing at Cornell and one for a second opinion with Dr. Lyall Gorenstein at Columbia. I also discussed ETS with my husband, which was really hard. He thought I was out of my skull initially, but ultimately said he'd support me no matter what I choose to do. That's what family does, and that's why we shouldn't fear speaking to our family about it (I only learned that yesterday, although I should have known it all along). Oh, what to do... Maybe I'll give a month of meds a try. I have some thinking to do....

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Follow up:  I saw Dr. Gorenstein at Columbia University Medical Center on Monday. He was personable, knowledgable, and spent a good deal of time with me. He said the majority of ETS he does these days is for HH and he is doing less and less for FB. He said that could be for a couple of reasons: 1) more doctors are doing it now so the patients that, in the past only came to him, are going elsewhere or 2) it is still a largely controversial procedure for FB because, while the success rate is high for HH, it is lower for FB. I mentioned Dr. Reisfeld and Dr. Neilson and he said Dr. Reisfeld is great but no longer doing ETS for FB because the success rate is so low... and I won't repeat what he said about Dr. Neilson because it was very negative. Let's just say he has a very low opinion of Dr. Neilson.

 

I asked about the MANY ETS side effects and complications that I've read about including CS, GS, dry skin, decreased facial sensation, hair loss, fatigue, cardiac implications (e.g.: effects on exercising and effects on resting heart rate and heart rate at anaerobic thresholds), and split body syndrome (he said he'd never heard of it). I told him about all the negatives I've read about on various anti-ETS blogs. He said it's important to note that many of these people posting on the various blogs are the same handful of people but he said, yes, there are some people living with very serious and unpleasant side effects from ETS and there is no single indicator to predict who will have success with ETS and who will not. He said the most success he has seen with ETS for FB is in blond, fair-skinned women - "Scandinavian type" (disclaimer: I happen to be a blond, fair-skinned woman).   He said the above side effects are not ones he has seen with the exception of CS and GS, but he claims that given the location where he clamps the nerve for FB, the CS tends to not be that severe.  His bottom line: aside from the highly unlikely side effects that go with any surgery (infection, bleeds, and so on), the worst that would likely happen to me is that I would have CS/GS or that the surgery would be unsuccessful for FB (and I would still have CS/GS).  I know I've read several accounts of the ETS not being successful, including scarface's above post. Dr. Gorenstein said there is the possibility that I have the surgery and still have FB because (and this is where he lost me with the medical terminology... even though he drew me a picture...so the following is my non-medical summation) the nerves responsible for the blood flow to the face are higher up than he is able to clamp. Clamping any higher would cause the dreaded Horner's syndrome, among other things. 

 

And yes, he clamps not cuts. He was very honest in that they are basically the same thing because, unless you remove the clamp within a few days, it largely has the same effect on the nerve as cutting. He said he's been clamping for about 15 years (or thereabouts, I don't want to misquote him) and he said that in the beginning it was really used as a marketing ploy in that patients were given the hope that there would be the possibility for reversal. He said it's just not true. Obviously with cutting, there is no putting the nerves back together, so in theory, clamping sounds like a safer option, but it's still permanently damaging the nerve. He said he still clamps because that's just the way he does it, not because he tries to sell anyone on the possibility of reversal. 

 

I asked about Botox and ibuprofen gel but he didn't seem to think either would be successful. He said it's just too big an area for botox and he didn't say much about the gel. 

 

Finally, I asked about electrical stimulation and Dr. Rezai at the Wexler Neuromodulation Center at Ohio State. He said he was not familiar with any of that. 

 

Prior to having my consultation with Dr. Gorenstein, I saw my general practitioner who gave me a script for propranolol and Xanax. I showed the script to Dr. Gorenstein who said that the dosages were very low but that I should consider giving them a try. Today is my 4th day and I can tell you that they have not been successful so far at all. I see my GP for a follow up in two weeks, maybe I just need a higher dosage. 

 

I left off with Dr. Gorenstein saying I was going to try the meds for a month and then check in with him. He also suggested I look into bio-feed back.  Course of treatment to be determined.....

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Sounds like a pretty straight up guy, tells you what he sees and doesn't pretend to know everything. If only ets was reversible I would do it in a heartbeat. I remember when I first came on this forum (around 12 years ago) and was so happy to see there was a surgery that would fix me, just a shame the side effects can be very drastic. If only the side effect was something less noticeable than sweating profusely... Trading one social anxiety trait for another.

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Hi mugsy,

 

First time posting on here but after reading your posts I felt compelled to respond as maybe we could approach this together and share our successes (let's be positive about this!!).

 

To cut a long story short... I've been a chronic blusher since high school. I'm now 33 and have been working at the same company for 8 years. I've always coped with the uncontrollable blushing. I don't like it but I've always just lived with it. It comes out in force after long times in the cold, in job interviews, and whenever I'm put on the spot, unprepared. 

 

But since January 2013, my blushing has been accompanied by uncontrollable and intense facial and bodily sweating in social situations, mainly social gatherings and in work meetings. I feel it is holding me back in work and I am afraid to further myself or go for interviews elsewhere for fear I will ridicule myself - who wants to employ a hot sweaty mess for a role that requires calmness under pressure, hey?

My GP has told me I'll always be a blusher and I've tried several medications (propanolol, diazepam, clonidine)  and a course of Cognitive Behavioral Therapy which haven't helped. The issue, for me, is more physical than mental. To this end, last month I saw a consultant in the UK near where I live about the ETS operation. I am booked in to be operated on in three weeks time. It's billed as a "last resort" op but I truly feel I've exhausted all other options.

 

The consultant surgeon I spoke to has experience with sweaters and blushers and tells me that the results vary wildly. But he commended my approach in trying the meds and the psych stuff before moving to this last ditch option. He actually said if he was in my shoes he would be doing the same thing.

And as you have probably done, I feel I have read everything there is to read about this operation, and the successes and pitfalls that people have described after undergoing the op. But my mind is made up. I'm a little terrified, as it's my first major op under general anaesthetic, but I know this is the path I must go down.

 

Fingers crossed!

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Thanks for your post David! I'm glad to hear you're only a little terrified because I am a lot terrified! I am awaiting a call back this afternoon from the MD's office so I can schedule the surgery. I go through periods of being excited about it to periods of thinking I must be out of my mind to do this. Our stories sound similar, including what we were told by the surgeons. It's the fact that the results vary so widely that scares me the most. It's like those mystery flavor lollipops, you might end up with something you hate. But, like you said, we need to be positive (or I may just go running from the OR as they go to put me under)...

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Yes AJ, of course I will.

 

And no problem mugsy, sounds like we're in the same boat! There is little to no waiting list here in the UK so my surgeon said I only had to wait a month.

 

I'm the same as you I suppose, going through moments where I think I am making a bad decision, where I batter google with searches about the operation and watch scary vids on youtube from people advising against it.

 

But they are few and far between and my overall outlook is positive and one of excitement that I may be finally able to live my life without the constant shadow of whether or not I will overheat, blush and begin sweating.

 

We're only on this earth once, and i've been completely ruled by these symptoms for close to 20 years now, so I'm determined to give it a shot.

 

And even if the op doesn't work, I know by the way I have coped all this time that I'm more than prepared to adapt to whatever side effects occur, be it compensatory sweating, gusatory sweating or the dreaded Horner's where I end up looking like some sinister bond villain.

 

We can but smile about it.

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Hi David

 

This is my first time posting, like you I have blushed on & off (more on for 30 years !) its such a debilitating condition & I know it has restricted my work prospects, I'm just wanting to know if the operation is being carried out by the NHS or are you going privately, as after many years & a Dr that 'just doesn't get it' & trying all the self help routes, medications etc., that exist re: blushing I've feel that I've exhausted all avenues & am seriously considering having the operation.  Would be really grateful for any info on who's performing your surgery .

 

Thanks Bronte

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Good luck David, keep us updated. Often people have this surgery and disappear as they start their new life, leaving us in the dark about a lot of the successes; as such we only tend to see the scare stories. Would be grateful if you could let us know how it all goes. Where are you getting the surgery?

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