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

  1. #21
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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.

  2. #22
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    My symptoms are identicle . I abused my skin with sun exposure my whole life and I have fair skin. After years of seeing various specialists in N.Y. and Conn. , I decided to get retested for allergies. Wheat and Oat allergy toped the list. Cutting out wheat has helped my flushing very much and my stomach acid reflux issues. I also am trying oral Chromolyn for symptoms similar to Mast Cell issues. I will keep you posted

  3. #23
    Senior Member laser_cat's Avatar
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    Quote Originally Posted by Snoop View Post
    Since my last post I have tried stellate ganglion block with no success.

    Yesterday I started taking amitriptyline. Today I have the worst flush I've had in a year.

    Now I don't even know if I should continue taking it
    Always hard to know whether to stick with a drug. My advice would be, if you don't think it's doing permanent damage and you are able to tolerate it, to "stick it out" for a little while longer so you can be sure to cross it off the list, but I know it's easier said than done. Possibly lower dose if you can / split capsules. If you've tried cymbalta / effexor though and they did not work out, then amitriptyline is basically similar.

    Might take a bit of time for the blood vessels to stabilize with anything that "disturbs" them. I think antidepressants can also muck with temperature regulation initially (eg sweating) before evening things out. Cymbalta helps me, but I've been on it for a while.

    Have you tried gabapentinoids? I find they can help me tolerate cold->warm. They are usually for pain but sometimes in eyrhtromelalgia, they can decrease burning pain as well as frequency of attacks. In red ear syndrome, there was a paper on how gabapentin can decrease frequency of attacks + is first line.

    My derm also likes to use calcium channel blockers (low low dose) for flushing. He thinks that by keeping the blood vessels always a little bit open, they are less prone to spasm. I don't think this idea is for everyone but if you tried beta blockers/clonidine without success, it might be something to consider. I take 0.625 (quarter of the smallest amlodipine pill) right before bed. Initially worse for a week, before stabilizing, and mild improvement (mostly my evening flushes). But this would be something that almost definitely would make you initially worse, and probably would need a 2 mo trial.

    Daily clonazepam might help - my sense is that it is sort of a wonder drug (a family member says it helps her back pain, and I have a friend who says it helps her allergies..), and often helps "flushers/burners", though not a cure

    I have also learned that opioids turn off my "time of day" flush/burn episodes - don't know if you have those episodes (afternoon, evening, insomnia-induced). There are partial opioid / anti-opioid combinations like suboxone which won't affect cognitive function as much as a full opioid agonist (or even gabapentinoids). My loose sense is that opioids work very well for flushers/burners. would be interested if you respond too

    can't think of anything more off the top of my head. severe flushing/burning sucks and isn't understood well
    Last edited by laser_cat; 5th April 2019 at 09:32 PM.

  4. #24
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    Quote Originally Posted by laser_cat View Post
    Always hard to know whether to stick with a drug. My advice would be, if you don't think it's doing permanent damage and you are able to tolerate it, to "stick it out" for a little while longer so you can be sure to cross it off the list, but I know it's easier said than done. Possibly lower dose if you can / split capsules. If you've tried cymbalta / effexor though and they did not work out, then amitriptyline is basically similar.

    Might take a bit of time for the blood vessels to stabilize with anything that "disturbs" them. I think antidepressants can also muck with temperature regulation initially (eg sweating) before evening things out. Cymbalta helps me, but I've been on it for a while.

    Have you tried gabapentinoids? I find they can help me tolerate cold->warm. They are usually for pain but sometimes in eyrhtromelalgia, they can decrease burning pain as well as frequency of attacks. In red ear syndrome, there was a paper on how gabapentin can decrease frequency of attacks + is first line.

    My derm also likes to use calcium channel blockers (low low dose) for flushing. He thinks that by keeping the blood vessels always a little bit open, they are less prone to spasm. I don't think this idea is for everyone but if you tried beta blockers/clonidine without success, it might be something to consider. I take 0.625 (quarter of the smallest amlodipine pill) right before bed. Initially worse for a week, before stabilizing, and mild improvement (mostly my evening flushes). But this would be something that almost definitely would make you initially worse, and probably would need a 2 mo trial.

    Daily clonazepam might help - my sense is that it is sort of a wonder drug (a family member says it helps her back pain, and I have a friend who says it helps her allergies..), and often helps "flushers/burners", though not a cure

    I have also learned that opioids turn off my "time of day" flush/burn episodes - don't know if you have those episodes (afternoon, evening, insomnia-induced). There are partial opioid / anti-opioid combinations like suboxone which won't affect cognitive function as much as a full opioid agonist (or even gabapentinoids). My loose sense is that opioids work very well for flushers/burners. would be interested if you respond too

    can't think of anything more off the top of my head. severe flushing/burning sucks and isn't understood well
    Thanks for your response.

    Given previous history of trying drugs longer, I have decided not to on this occasion. As sometimes the burning can get even worse and right now I can't be dealing with it.

    If I get negative signs early on, it can really put me off. I may go back to it at a later date.

    I've never tried Cymbalta

    I did try gabapentin, lyrica last year and it had a negative effect on me. I also tried high dose naltrexone, and then Ephedrine. Same again, immediate negative effect.

    I have't really tried calcium channel blockers yet.

    Whenever I mention clonazepam to doctors, they immediately say they don't want me to go near it.

    I'm thinking of going for a test for 'non-length-dependent small-fiber neuropathy'

    I've read some people with very similar flushing had this problem, then got some help from 'Intravenous Immunoglobulin' and 'lidocaine intravenous infusion'

    Any further thoughts would be great.

  5. #25
    Senior Member Brady Barrows's Avatar
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    Snoop,
    On 11/29/18 you posted you havenít tried Amitriptyline. You may want to read this post using Ketamine/Amitriptyline:

    https://irosacea.org/forums/topic/30...1-for-rosacea/


    Sent from my iPad using Tapatalk
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  6. #26
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    Quote Originally Posted by Brady Barrows View Post
    Snoop,
    On 11/29/18 you posted you havenít tried Amitriptyline. You may want to read this post using Ketamine/Amitriptyline:

    https://irosacea.org/forums/topic/30...1-for-rosacea/


    Sent from my iPad using Tapatalk
    I have tried the cream from two different sources, it has the opposite effect, instant burning on application

  7. #27
    Senior Member Brady Barrows's Avatar
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    Quote Originally Posted by Snoop View Post
    I have tried the cream from two different sources, it has the opposite effect, instant burning on application
    You do have a very difficult case. If you scroll through that post there may be some other helpful information that may prove insightful to you or give you some direction to go.
    Brady Barrows
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  8. #28
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    Quote Originally Posted by Snoop View Post
    I have tried the cream from two different sources, it has the opposite effect, instant burning on application
    Snoop, any changes currently? How do you feel right now?

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