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Thread: IDIOPATHIC FACIAL FLUSHING: About £30,000 Down Over 13 Years - What Can I Try Next?

  1. #1
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    Default IDIOPATHIC FACIAL FLUSHING: About £30,000 Down Over 13 Years - What Can I Try Next?

    Male, in my 30s.

    In a nutshell I have idiopathic facial flushing. Like many, we can't find out why. Of course I have emotional triggers, but also, the flushing can be triggered by NOTHING, just sitting there in a chair, or walking or LITERALLY ANYTHING (Which is the part doctors don't understand)

    Burning face. I know it will happen multiple times per day.

    It has caused me to suffer server depression and anxiety over the years.

    I have tried pretty much every anti-depressant, beta blocker, and a variety of all sorts of other pills doctors just randomly think of to try...

    Pretty much NOTHING Has helped. Only mirtazapine a touch, it seems to keep the edge off things permanently. But doesn't prevent daily random flushing.

    Every year or two I revisit my flushing issues, as of course I want to resolve them.

    And this year I decided to really give it a shot at finding something that will help...

    Starting with several dermatologists who had no idea how they could help , apart from saying we could try lazers.

    I then saw an Autonomic and Neurovascular specialist for autonomic testing. Results came back fine, normal with absolutely no negative issues to report, everything came back perfectly fine and the doctor basically said he couldn't help me after I parted ways with about £5,000 cash for help.

    I then went to see an endocrinologist for even more testing, off hand can't remember what testing, but again, about £5,000 down the toilet, everything came back perfectly fine, and as usual he just threw a bunch of random pills at me, even stuff I told him I've tried before.

    When I phone or see him to tell him XXX didn't work, he just thinks off the top of his head and says well lets try X.

    Over the past 13+ years I think I've probably spent about £30,000 seeing several doctors all over the world...

    Trying probably 50+ different medications.

    And quite frankly I'm completely sick of the whole thing.

    I can't live a normal life.

    I can't introduce myself to anyone in fear I will FLUSH the second I open my mouth.

    I'm near the end of the road with the whole thing...

    What kind of doctor or specialist can I try next?

    One more shot.

  2. #2
    Senior Member laser_cat's Avatar
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    Quote Originally Posted by Snoop View Post
    Male, in my 30s.

    In a nutshell I have idiopathic facial flushing. Like many, we can't find out why. Of course I have emotional triggers, but also, the flushing can be triggered by NOTHING, just sitting there in a chair, or walking or LITERALLY ANYTHING (Which is the part doctors don't understand)

    Burning face. I know it will happen multiple times per day.

    It has caused me to suffer server depression and anxiety over the years.

    I have tried pretty much every anti-depressant, beta blocker, and a variety of all sorts of other pills doctors just randomly think of to try...

    Pretty much NOTHING Has helped. Only mirtazapine a touch, it seems to keep the edge off things permanently. But doesn't prevent daily random flushing.

    Every year or two I revisit my flushing issues, as of course I want to resolve them.

    And this year I decided to really give it a shot at finding something that will help...

    Starting with several dermatologists who had no idea how they could help , apart from saying we could try lazers.

    I then saw an Autonomic and Neurovascular specialist for autonomic testing. Results came back fine, normal with absolutely no negative issues to report, everything came back perfectly fine and the doctor basically said he couldn't help me after I parted ways with about £5,000 cash for help.

    I then went to see an endocrinologist for even more testing, off hand can't remember what testing, but again, about £5,000 down the toilet, everything came back perfectly fine, and as usual he just threw a bunch of random pills at me, even stuff I told him I've tried before.

    When I phone or see him to tell him XXX didn't work, he just thinks off the top of his head and says well lets try X.

    Over the past 13+ years I think I've probably spent about £30,000 seeing several doctors all over the world...

    Trying probably 50+ different medications.

    And quite frankly I'm completely sick of the whole thing.

    I can't live a normal life.

    I can't introduce myself to anyone in fear I will FLUSH the second I open my mouth.

    I'm near the end of the road with the whole thing...

    What kind of doctor or specialist can I try next?

    One more shot.
    Snoop -

    I get it. Flushing/burning has been disabling for me. Loads of $ down the toilet, and lasers aren't effective at all for me. Like you, prob 50+ medications and procedures -- I currently do 4 things with only partial relief.

    If you have burning, one idea would be to see a pain management doc. The more pain management docs the better honestly bc each one can offer a fresh pair of eyes and maybe have a decent suggestion.

    If you visit around San Francisco California, I could recommend maybe a couple doctors who think "out of the box" -- I think you live in UK though.

    Some random things --

    -a steroid pulse (high high dose then taper). This likely will make you worse before better, if you get benefit.
    -stellate ganglion block in morning to see if symptoms improve afterward for rest of day. If so, symptoms are said to be sympathetically-mediated and a series of sg blocks might reset things, or maybe some other appropriate drugs for sympathetically mediated symptoms (alpha blockers i think..)
    -other nerve blocks if you haven't
    -ketamine iv (I know of at least one person with facial erythromelalgia symptoms get improvement with ketamine iv every xx couple of months to "reset" things and low dose methadone daily)
    -super vasodilator like prostacyclin iv -- done for Raynaud's usually but sometimes improves erythromelalgia symptoms -- also could make you worse.
    -membrane stabilizers (anti-seizures) - theory being they will stabilize sensory nerves, so your body won't inappropriately "sense" it's 1000 degrees (making your blood vessels act accordingly)
    -I vaguely remember you saying you flushed madly from 50 mg naltrexone (anti-opioid). So maybe opioids. I know opioids are actually helpful for me, but haven't gone down this path as a daily med yet.
    -lidocaine iv and/or high dose mexiletine (a few weeks at 300 x3 or x4 a day). I think it's possible to get worse at lower doses of mex, not sure, until you get at therapeutic doses for a decent block .. experimenting with a similar med currently myself.

    Best,
    Last edited by laser_cat; 28th November 2018 at 05:57 AM.

  3. #3
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    Quote Originally Posted by Snoop View Post
    Male, in my 30s.

    In a nutshell I have idiopathic facial flushing. Like many, we can't find out why. Of course I have emotional triggers, but also, the flushing can be triggered by NOTHING, just sitting there in a chair, or walking or LITERALLY ANYTHING (Which is the part doctors don't understand)

    Burning face. I know it will happen multiple times per day.

    It has caused me to suffer server depression and anxiety over the years.

    I have tried pretty much every anti-depressant, beta blocker, and a variety of all sorts of other pills doctors just randomly think of to try...

    Pretty much NOTHING Has helped. Only mirtazapine a touch, it seems to keep the edge off things permanently. But doesn't prevent daily random flushing.

    Every year or two I revisit my flushing issues, as of course I want to resolve them.

    And this year I decided to really give it a shot at finding something that will help...

    Starting with several dermatologists who had no idea how they could help , apart from saying we could try lazers.

    I then saw an Autonomic and Neurovascular specialist for autonomic testing. Results came back fine, normal with absolutely no negative issues to report, everything came back perfectly fine and the doctor basically said he couldn't help me after I parted ways with about £5,000 cash for help.

    I then went to see an endocrinologist for even more testing, off hand can't remember what testing, but again, about £5,000 down the toilet, everything came back perfectly fine, and as usual he just threw a bunch of random pills at me, even stuff I told him I've tried before.

    When I phone or see him to tell him XXX didn't work, he just thinks off the top of his head and says well lets try X.

    Over the past 13+ years I think I've probably spent about £30,000 seeing several doctors all over the world...

    Trying probably 50+ different medications.

    And quite frankly I'm completely sick of the whole thing.

    I can't live a normal life.

    I can't introduce myself to anyone in fear I will FLUSH the second I open my mouth.

    I'm near the end of the road with the whole thing...

    What kind of doctor or specialist can I try next?

    One more shot.
    I am only here because I had a diagnosis of Rosacea, I have never believed it is and a bit like reading your posts I read others on here and think hmmm.

    I too flush if you can call it that and then swell up, and I mean swell what used to feel spontaneously tingle burn and even pain. Here is the BUT i am pretty confident mine is environmental but getting any Dr to listen is impossible and I am stuck with this for me weird diagnosis.

    I too have spent ££££ I went to NHS immunology who because my bloods were fairly normal and I didn't react to 12 skin pricks said I had triggers and possibly Rosacea. When GP saw this she wanted to refer me to NHS dermatology so to circumvent the wait I went private to the one I would have seen.

    She kind of panicked and wanted me to be tested for alsorts of autoimmune, Lupus, Wenger's etc. Due to weightloss and high IgM and my six year history included loss of smell runny nose and dental problems.

    She requested I get referred to the "top" hospital St. Johns who will make me a lot more comfortable.

    I went to see a private eye Dr in the mean time as my eyes swell shut left much worse he gave me full check up and asked me to leave the room I came back ten minutes later and he gave me the diagnosis of Morbihan Disease as he was talking I glanced at his PC and it was on the wiki page age for it. In twenty five years I was his second case, then St. John's followed suit. Really rare and NOT associated with tingling burning and pain. Yet they both ignore this symptom wtf.

    It has ruined my life I know if I could find a log cabin in the middle of nowhere I would be ok, mine is triggered by environment.

    I am being tested for under research in December for aero allergy to PG and PEG at guys but as the Dr said if it is that you can't avoid it it's everywhere.

    Cannot really help other than encourage you to look for the trigger, I genuinely believe it's airborne in my case and the reaction begins in the nose.

    I hate Dr because I always feel they look at notes and history and assumes everyone else has done all the checks properly.

    Sent from my WAS-LX1A using Tapatalk

  4. #4
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    Quote Originally Posted by Snoop View Post
    Male, in my 30s.

    In a nutshell I have idiopathic facial flushing. Like many, we can't find out why. Of course I have emotional triggers, but also, the flushing can be triggered by NOTHING, just sitting there in a chair, or walking or LITERALLY ANYTHING (Which is the part doctors don't understand)

    Burning face. I know it will happen multiple times per day.

    It has caused me to suffer server depression and anxiety over the years.

    I have tried pretty much every anti-depressant, beta blocker, and a variety of all sorts of other pills doctors just randomly think of to try...

    Pretty much NOTHING Has helped. Only mirtazapine a touch, it seems to keep the edge off things permanently. But doesn't prevent daily random flushing.

    Every year or two I revisit my flushing issues, as of course I want to resolve them.

    And this year I decided to really give it a shot at finding something that will help...

    Starting with several dermatologists who had no idea how they could help , apart from saying we could try lazers.

    I then saw an Autonomic and Neurovascular specialist for autonomic testing. Results came back fine, normal with absolutely no negative issues to report, everything came back perfectly fine and the doctor basically said he couldn't help me after I parted ways with about £5,000 cash for help.

    I then went to see an endocrinologist for even more testing, off hand can't remember what testing, but again, about £5,000 down the toilet, everything came back perfectly fine, and as usual he just threw a bunch of random pills at me, even stuff I told him I've tried before.

    When I phone or see him to tell him XXX didn't work, he just thinks off the top of his head and says well lets try X.

    Over the past 13+ years I think I've probably spent about £30,000 seeing several doctors all over the world...

    Trying probably 50+ different medications.

    And quite frankly I'm completely sick of the whole thing.

    I can't live a normal life.

    I can't introduce myself to anyone in fear I will FLUSH the second I open my mouth.

    I'm near the end of the road with the whole thing...

    What kind of doctor or specialist can I try next?

    One more shot.
    Do you get swelling and does you skin eventually go back to normal color after the flushing. Might be a form of neurogenic Rosacea.
    Have you tried amitriptyline (elavil). Also have a look at CBD oil used topically.

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    Thanks for the responses.

    My skin does not have bumps or swelling. It just flushes multiple times throughout the day. It goes back to baseline redness after flushing.

    I have not tried as of yet:

    - amitriptyline (elavil)
    - cbd oil
    - steroid pulse (high high dose then taper).
    - stellate ganglion block
    - any other form of nerve block
    - super vasodilator like prostacyclin iv
    - membrane stabilizers (anti-seizures)
    - any opioids
    - lidocaine iv and/or high dose mexiletine

    I have tried ketamine IV for depression. It doesn't help the flushing at all

    I'm scheduled to see a pain doctor next week to try and get the stellate ganglion block as they think it "might" help

    I might try topical CBD Oil too.

    Other things I have written down to research:

    - Medroxyprogesterone acetate
    - Megestrol acetate
    - duloxetine

    Any thoughts omn those?

  6. #6
    Senior Member laser_cat's Avatar
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    Quote Originally Posted by Snoop View Post
    T
    I might try topical CBD Oil too.

    Other things I have written down to research:

    - Medroxyprogesterone acetate
    - Megestrol acetate
    - duloxetine

    Any thoughts omn those?
    I am on cymbalta / duloxetine and it does help some, though not "enough" by itself. It helps the most with my depression / energy level / resilience. The descending pain inhibition helps a bit (more like the burning is intolerable without it ). The norepinephrine reuptake helps to give my blood vessels more tone -- without it, I wouldn't be able to sit down during the day (blood pooling too much in my face). Effexor (another SNRI) and mirtazapine are known to work well together too, from a depression point of view, but I think adding an SNRI could help "boost" the mirtazapine in terms of blood vessel tone. If you've tried effexor before, I wouldn't expect the cymbalta to be any better.

    Medroxyprogesterone acetate or other progesterone treatments - No idea for the males (I am female). I would expect this to make you worse. Hormonal birth controls high in progesterone make my symptoms off the chart, it's almost a joke. Ears constantly on fire. I've tried supplemental progesterone to my natural cycle - it's the same (I just get hotter). However, if you do a short trial and it doesn't work out, I'd expect you to just go back to your baseline.

    Again, I have no idea about progesterone in the context of males, though.

    Shame the ketamine didn't do anything for the rosacea symptoms. It's getting more and more mainstream here in the states (my local teaching hospital recently had a shortage) for pain.

    I'm on flecainide (very similar to mexiletine) and 50 mg x2 helps significantly with my heat tolerance. I'm also looking to repeat a stellate ganglion block to find out how much of my symptoms are sympathetically-mediated (had one a long time ago). My pain doc said he expects there are 2 things going on -- neuropathy / damaged sensory nerves (which membrane stabilizers / flecainide / mexiletine/ etc would help stabilize) and also my sympathetic system is on overdrive. When both issues are tackled simultaneously, there can be very good results. I think he might be right.

    good luck to you.

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    I would not recommend medroxyprogesterone. When I lost my period many years ago due to an eating disorder, I was put on this + low dose estrogen to help induce my cycle. The reviews of this drug are bad, I felt horrible. Now that I am in peri menopause, Iím back on low dose estrogen + a natural progesterone pill and have no issues. It doesnít make a difference in my skin symptoms at all. I had been doing a progesterone cream for about 10 months but my bleeding was all over the place. Went to a different doc who said that progesterone cream was the problem because thereís never a consistent amount absorbed by the skin. Iíve been taking the natural progesterone pill for a few months now and am very regular. No issues. This doc also spoke pretty negatively about medroxyprogesterone.
    Just my 2 cents.

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    Hi Andrew P

    The irritation and burning could well be demodex mite symptoms and the impact on the eyes. Eye doctors are sometimes aware of the impact of demodex mite infestations on the eyes (more so than dermatologists understanding the link between rosacea and demodex mites). Have you tried oral doxycycline for the eyes? In a way rosacea is just a set of symptoms, of which you may have some - it is not a very precise diagnosis. Some rosacea treatments may give you some symptomatic relief even if there is an underlying condition that I understand you want to get to the bottom of.

    In what way do you find your condition is caused by the environment?

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    I had a punch biopsy done at Guys dermatology which was inconclusive of Rosacea. I asked the consultant about dermodex he didn't think it was.

    I have been on Lymecycline for seven months.

    The two things I am certain of are air freshener or second hand vape it's instant. Some random people do it to me. It took six years for me to realise my environment was causing it.

    There are times where I can leave the environment looking like I have been bitten by a bee and it will go down.

    I used to cycle manic circa 7000 miles a year because it felt better I now think this was just fresh air. That's year round lowest I would cycle minus five no upper limit all of which should be triggers.

    I see a lot of my symptoms in posts on here, offices etc.

    I am not red I am not even red when really swollen but I have two oval red marks on my upper eyelids not really a good description my eyes are hooded and my face has in the right light got what looks like reddish below skin level random marks that look under my skin where my symptoms are.

    When I queried this it was deep tissue Rosacea, to be honest I laughed

    Numb left lip swollen painful left gums.

    Apart from that I am fine!

    Being 53 I am a bit shy about posting pictures.

    Sent from my WAS-LX1A using Tapatalk

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    Quote Originally Posted by Andrew P View Post
    I had a punch biopsy done at Guys dermatology which was inconclusive of Rosacea. I asked the consultant about dermodex he didn't think it was.

    I have been on Lymecycline for seven months.

    The two things I am certain of are air freshener or second hand vape it's instant. Some random people do it to me. It took six years for me to realise my environment was causing it.

    There are times where I can leave the environment looking like I have been bitten by a bee and it will go down.

    I used to cycle manic circa 7000 miles a year because it felt better I now think this was just fresh air. That's year round lowest I would cycle minus five no upper limit all of which should be triggers.

    I see a lot of my symptoms in posts on here, offices etc.

    I am not red I am not even red when really swollen but I have two oval red marks on my upper eyelids not really a good description my eyes are hooded and my face has in the right light got what looks like reddish below skin level random marks that look under my skin where my symptoms are.

    When I queried this it was deep tissue Rosacea, to be honest I laughed

    Numb left lip swollen painful left gums.

    Apart from that I am fine!

    Being 53 I am a bit shy about posting pictures.

    Sent from my WAS-LX1A using Tapatalk
    UK dermatologists often don't believe in demodex mites as a cause of skin conditions. They are behind the curve of latest dermatology research in this sense, especially in relation to rosacea. If you search the global database of medical journal articles, Pub Med, for the UK and demodex as two search terms at the same time, you'll find hardly any references. By contrast, if you search Ireland and demodex you will find lots of research, for example by Professor Frank Powell. You can buy quite a lot of the common treatments for demodex mites at www.demodex.co.uk. There is just very little up to date research done on rosacea in general done in the UK (lack of funding and interests). There is a lot of information on demodex mites infections on that website - it can cause other problems, not only rosacea.

    I have also had some mouth ulcers and mild sore gums a little in the past, though not as severe as you I think. What helped me was tea tree oil toothpaste from Desert Essence, Winter Green variety (available on Amazon). An alternative product that is very gentle on the mouth is Squiggle toothpaste from the Mouth Ulcers Website Shop. If you have an infection in the mouth I think the tea tree oil toothpaste is helpful.

    It would be worth considering doxycycline as the lymecycline does not seem to have had the benefits you want. You can get a low dose version called Efracea which should not have the disadvantages of antibiotic resistance as it is a low time-released dose. Your GP should be able to give you this, as it is licensed for rosacea.

    Do you find fields around computers, wifi and using mobile phones cause you any problems? These are sometimes associated with environmental effects on skin conditions.
    Last edited by antwantsclear; 2nd December 2018 at 11:44 AM.

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