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Thread: Desperate - Considering ETS! Help - Advice Needed

  1. #1
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    Default Desperate - Considering ETS! Help - Advice Needed

    Hello everyone. I am so desperate that I am now considering ETS surgery. I have tried everything to curb the flushing - I have tried singulair, clonodine, propranolol, remeron, and even xanax. I have undergone VBeam and most recently 10 IPL treamtments with the triple pulse triple pass technique.

    NOTHING is working! My flushing has me considering suicide! Seriously, how can God expect us to live like this? My quality of life is so diminished - I can't even leave my house! I flush over everything - sun, food, sleeping, social, heat, cold, wind - you name it.

    I am at my last resort - which is ETS surgery. Has anyone out there ever had this surgery. I would like to know who you used (I am willing to fly wherever) and if it was successful. I understand it has some side effects - but they sound less harmful that this god aweful flushing disorder.

    Please any advice on this would be much appreciated.

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    jlb have you done searches about ETS? An interesting article is the one that appeared in The New Yorker in 2001. The subject of the article is Christine Drury who has the surgery in Sweden in the late 1990s. The ending isn't bad. But many years have passed. So, you should see if you can find more up to date information and personal anecdotes from people who have undergone this surgery.

    jlb, do you have signs of rosacea on your face if you are not flushing?
    "It's all illusion anyway."

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    I notice you say you have tried neither Mepacrine or Plaquenil? Sometimes these can be helpful where other drugs have failed. ETS does not have a high success rate, and great potential for severe complications. Some people end up flushing very badly in a different area as a result of ETS.

    Do you have a lot of visible veins? I think Dr Soldo would say 10 IPLs wouldn't always be enough. Who did you have them with?

    Have you addressed cleansing? Trying Cetaphil. Avoid getting shower water on face etc (showering is very very drying on rosacea skin)? These things can help make flushing a little more bearable. It is vital to try and rebuild the skin's barrier function as much as possible.
    Last edited by antwantsclear; 20th September 2011 at 10:34 PM.

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    Senior Member Brady Barrows's Avatar
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    ETS is not a first line treatment for rosacea and is usually considered only as a last resort. Be sure to read up on ETS by clicking here.
    Brady Barrows
    Join the RRDi

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    Thanks everyone - I will continue to do my research on ETS. I am actually having the IPL treatments done by Dr. Soldo - they just dont' seem to be working or even making a dent. Maybe I am giving up too soon? I was really hoping that with 10 triple pulse triple pass techniques, that I'd see improvement by now.

    I have not tried the anti-malarial drugs - I am a bit scared of the side effects (vision loss). Someone mentioned an article in 2001 - but I can't seem to find that. Does anyone have the link?

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    Hi jlb2010, I just want you to know that I completely understand where you are coming from. I suffer from severe flushing with burning pain and am completely disabled by it. With that said, I actually did have ETS and it did nothing to help my situation at all. Thankfully I did not get any of the horrible side effects, but since it did not help it was not worth the time, money or effort. I truly do not believe that ETS works on flushing and I have many doubts that it can address blushing either.

    One thing you might want to consider is getting vbeam Perfecta laser txs. I had countless IPL txs, and after awhile they stopped helping me. A couple of years ago, I decided to try the newest vbeam, known as the Perfecta and it has helped a little. In my case, I have autonomic nervous system dysfunction, so the laser will never cure me, but it does help reduce the frequency and the intensity of the flushing and some of the pain, too. Do you have any pain?

    If you would like to email me directly I would be happy to go over some other medications that might possibly help you that you did not list. My email is meg.edelson@prodigy.net. I think it's important for you to find a good dr who is willing to work with you to try different medications in order of most benign to most risky. And most medications are a better option that ETS because you can stop a medication if you don't like it, but once you have ETS, you can not change anything after the nerves are cut. Also, some nerves can regenerate, so who knows how you will end up as time progresses.

    I hope you find some relief. You might consider finding out the cause of your flushing by seeing an autonomic neurology specialist to rule in or out autonomic dysfunction. If you don't have an autonomic dysfuntion, then a really thorough and creative rosacea specialist may be helpful. I get a lot of help from a pain management dr. There are many options and we just have to keep trying things one by one until we find things that help us feel better.

    Take care,
    Meg

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    jlb,

    I wrote a post earlier this year about the antidepressant Paroxetin which has helped me tremendously with flushing and blushing. I copied the post.

    Hope it helps,
    Barbara






    Blushing and flushing are my main symptoms of rosacea followed by erythema. I have rosacea now for over 20 years (started with flushing when I was 24). It was about 6 years ago when my flushing and first and foremost my blushing got out of controll. Especially at work I blushed because of the smallest things and for nothing special at all. Because I had a warm to hot face most of the time anyway (means I had a slight flush all the time) meant that I would go to a bright deep blush in a second. I came to the point where I "creeped" through work hoping not to come in any situation that would make me blush. Of course this made everything worse as you probably know yourself: If you are afraid of blushing in certain situations and are tense about that it will make you blush even more...a vicious circle. I came to the point where a coud not beare that anymore and had suicidal thoughts. Very bad!

    I went to a neurologist and told her my situation and gladly she understood me very well. She gave me the antidepressant Paroxetin and told me I could expect the first results in about 3 weeks or so. Tell you what...I took the first tablett in the morning (20mg) and about 1 hour later I started noticing my face getting cooler, my always beeing there mild flush subsided. At work I almost did not blush. I could not believe it. It took about 4 to 7 days for the medication to really kick in 100%. Blushing stopped to nearly 100%, flushing is reduced also...means I don't have this mild flushes to all this heaps of triggers, face stays cool, no nose flush at all (before I had bad noses flushes especially at night ). Triggers have to be more strong, eg. hot rooms, hot spicy food, strong emotions. I still get bad flushes and often though but in compare of what I was suffering before taking Paroxetin I can live with that. I'm far from beeing cured but Paroxetin gave me the chance of starting a second life, especially because I'm not blushing anymore. That literally saved my live.

    Taking Paroxetin has side effects of course. Especially at the beginning it made me tired and I gained a lot of weight. Looking back this happend because of two things. I simply enjoyed life without blushing and indulged in good things,food and especially sweets! Also it seems taking Paroxetin makes the body react as the intake of 100 kcal is actually worth double, also it seems the body switches to store and build more fat. But with more discipline and knowledge I perhaps could have avoided gaining so much weight. It's difficult to loose it again while on Paroxetin. Anyway, I m happy to exchanged my blushing for the overweight and I would do it again.

    I take Paroxetin daily (20mg) for more than 5 years now. Tried to stop it several times to see whats happening...blushing and flushing just came back to what it was before taking it. I tried L-Theanin(Suntheanin) combinded with GABA (PharmaGABA)...these brands seem to be the only really working ones-you can check that on internet. It did not help me. Maybe they could help you. So I got back to taking Paroxetin. My neurologist told me that if I have to, I can take it lifelong. She also could see why it is so much helping me as Paroxetin has direct impact on heart/bloodcirculation/bloodvessels. I hope I don't have to take it lifelong but I'm deeply grateful that I found a medication for me that gave me the chance for a second life.

    tp912, I hope this information will help you. Taking an antidepressant is not an easy decision and surely one to discuss really with an neurologist. But blushing can get you down to your knees and in my case brouhgt me close to just don't want to live anymore.

    Feel free to ask me questions.

    Best wishes,
    Barbara

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    I think the safety profile of Plaquenil and Mepacrine would stand up well against ETS. You need to be monitored with eye tests while on Plaquenil especially. If you do this regularly, any damage to the retina could usually be picked up in time, even if it did start to develop. Have you talked to Dr Soldo about the anti-malarials? A rheumatologist or dermatologist who specialised in Lupus would be helpful to discuss the upsides and downsides of them, as they are the main treatments used in lupus skin conditions. I suspect only Plaquenil will be available to you in America. Mepacrine is very difficult to obtain there from what others have said.

    Has the IPL helped with the vein reduction? Also you may find that, as the IPL continues to reduce the veins, treatments like mirtazapine become more helpful. It is sometimes the combination that works well of more than one treatment concurrently.

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    I agree with Barbara about the value of seeing a neurologist if that they have the right sub-specialism (e.g. headaches). There are a lot of similarities between treating rosacea flushing and certain kinds of headaches. In fact many of the similar treatments are used such as clonidine and various anti depressants. There are also some drugs neurologists use that are not regularly talked about as rosacea flushing treatments, but which may help. One is Indometacin, although this does have some significant risks (e.g. stomach ulcers). Professor Frank Powell does include Indometacin in a long list of potential rosacea flushing treatments in his rosacea textbook.

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    Good advice everyone - thank you! I never thought about seeing a neurologist or a rheumatoid (sp?) arthritis doctor. What kind of neurologist do you see?? Is there a speciality or just see any general neurologist.

    For the person on Paxil - how much weight did you gain?? I am currently on Mirtazipine and the weight gain was already 20 lbs....I honestly, can't handle the weight gain either....it would make me more self concious and probably feed into the flushing cycle.

    I will also look into Indometacin - I have never heard of that drug. I hate the thought of surgery - especially if there is a risk of it not working....ugh, wouldn't that be horrible.

    I dont' understand why they can't find a cure for this - we can treat so many complex diseases, but we can cure this one...

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