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

  1. #11
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    Quote Originally Posted by Andrew P View Post
    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.

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    Hi

    Where is St Johns? Is it a good place in UK for rosacea?

    Thanks

    Phil

  2. #12
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    Supposed to be the elite European dermatology you need an NHS referral. I am in the Urticaria Angioedema department it's in Guys hospital. They see people from all over the UK.

    https://www.guysandstthomas.nhs.uk/o...-overview.aspx

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  3. #13
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    Quote Originally Posted by antwantsclear View Post
    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.
    I had four weeks on Doxycycline before Lymecycline at 100mg. He changed it because it was so hot in the summer and Lymecycline supposed to be less photosensitive.

    I have two bits on my neck I assume from cycling that have photosensitive damage. I struggle with sunscreens.

    Mine is 100% air contact I am not sure if it's skin or sinuses or both.

    It takes seconds to know it's turning.

    A potted history, it started in 2011 with a constant 24/7 runny nose which was all the time and tingling on my bridge of nose that came and went and occasionally a droopy left eyelid. GP tried all the sprays and allergy meds to know avail. I gave up as I was functional. I had flirted with cycling in 2009 and 2010 but was pretty unfit. When this kicked off I went for bike ride at work lunchtime and felt a lot better so went mad cycling.

    In 2013 I came off my bike and buggered my shoulder so I took advantage of the time off and had dental work done within three months no more runny nose but then the tingling burning and pain off the scale i think an infected tooth may have caused the runny nose but effective at clearing the allergen I went to and from dentist, extractions no help. I had crowns done on I infected teeth.

    Referral to oral medicine and diagnosed with idiopathic facial pain.

    Told nothing will remove it amitriptyline pregablin etc will only offer twenty to thirty percent relief but will affect lifestyle, cycling social drinking etc. So I just carried on cycling for relief and put up with it.

    Then in November 2016 it went absolutely mad and I started swelling up, they binned idiopathic face pain and this journey began.

    The peculiar thing is where I work a candle manufacturer moved in in 2010. I had my air tested at work in 2017 and propylene glycol second highest chemical in my air.

    Metrodionzole stops your body processing it and it sent my symptoms off the scale.

    My wife had started Vaping in 2016.

    PG is in loads of things. If you Google vaping and skin issues look at the pictures.

    I went to a private allergy doc told him this and that I was negative on patch test he did intradermal and the hive were huge. But he wanted me to inject myself with it like allergy shots and guys told me not too and labeled him a nutter, hence the three hour testing I have coming up.

    Computer screen and phones only ever bother me when I am in a massive reaction and been like it for ages, but anything seems to make it worse at that point.

    I read posts on here about someone just sitting at home and bang they are "flushing" or someone comes up to them and bang they are flushing and see a lot of me in it excluding the red tone.

    There are lots of pictures on here that yes no doubt rosacea and yes I can see mites could cause it but I have no pustules pimples etc.








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    Last edited by Andrew P; 2nd December 2018 at 04:19 PM.

  4. #14
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    I would definitely recommend trying the toothpastes if your mouth is still bothering you as they can't really cause you any problems, whereas I appreciate trying new medicines can and the possible side effects aren't to be taken lightly.

    The other thing that stands out to me that may help without causing you major problems is to removing the drinking (even if very moderate), and maybe address other areas of diet, because this can help with many chronic conditions not just rosacea (e.g. removing sugar and grains - rice, flour, oats - and dairy).

  5. #15
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    Quote Originally Posted by antwantsclear View Post
    I would definitely recommend trying the toothpastes if your mouth is still bothering you as they can't really cause you any problems, whereas I appreciate trying new medicines can and the possible side effects aren't to be taken lightly.

    The other thing that stands out to me that may help without causing you major problems is to removing the drinking (even if very moderate), and maybe address other areas of diet, because this can help with many chronic conditions not just rosacea (e.g. removing sugar and grains - rice, flour, oats - and dairy).
    Thanks I packed up drinking all of 2017 stopped eating more or less for six weeks.

    Use a green aloe and tea tree toothpaste and mouthwash as it didn't have pg in it.

    Feel like I have hijacked this thread but I truly believe mine is some sort of allergic reaction. The Dr do when they see the pictures but because they cannot find the allergen they either give up or revert to something in their speciality.

    There are a hardcore of users on here who have tried everything with only marginal relief which in itself seems strange. A lot also seem worse on sone meds.

    I have been caught in drug allergy testing at Guys. They are trying to find people allergic to polyethylene glycol as it is causing a lot of adverse reactions in new drug trials.

    I had a small reaction to skin prick but on the day a bigger reaction to the negative saline prick lol

    Next they are going to load me up with ever increasing oral doses to see if my symptoms increase or my throat closes

    I am really surprised it has not been bigger news to be honest in Taiwan they found 25% of healthy individuals had the antibody.

    https://www.ncbi.nlm.nih.gov/m/pubmed/27196817/

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  6. #16
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    I had a prescription for Zineryt so decided to try it, man it's made me red three days in. Keep going?!

    It was the only lotion without propylene glycol.

    Positive for Rosacea or just a reaction it smell pretty harsh like rocket fuel..

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  7. #17
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    Quote Originally Posted by Andrew P View Post
    I had a prescription for Zineryt so decided to try it, man it's made me red three days in. Keep going?!

    It was the only lotion without propylene glycol.

    Positive for Rosacea or just a reaction it smell pretty harsh like rocket fuel..

    Sent from my WAS-LX1A using Tapatalk
    I would be cautious about continuing if you don't think it's helping you. It's an acne treatment, so probably too harsh if you have rosacea like symptoms (even if it may not be rosacea/not only rosacea). Soolantra would be a more obvious treatment to try.

  8. #18
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    Yes thanks for the input guys, but completely off topic now?

    Has nothing to do with the original post and the problems I am facing.

    Questioning why I bothered posting now!

    Anyways, thanks

  9. #19
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    Quote Originally Posted by Snoop View Post
    Yes thanks for the input guys, but completely off topic now?

    Has nothing to do with the original post and the problems I am facing.

    Questioning why I bothered posting now!

    Anyways, thanks
    Yeah sorry about that it's my fault happy to have my posts deleted.





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  10. #20
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    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

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