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Thread: So I just had my appointment at Queens London!!!

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    Default So I just had my appointment at Queens London!!!

    So I just had my appointment at Queens London!!!

    So I had my appointment at Queens Neurological department, she thinks my nervous system is running high. I have to go back for tests, including an all-day overnight thing. she mentioned I have to have this sauna type test to see where I sweat from and when im red etc.... Anyone had it suggested that their blushing may be because the nervous system is buggered?

    cheers

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    Please keep us posted on your test results and her proposed treatment plan. Aside from hormones, autonomic nervous system is another huge factor in blood vessel dynamics - whether it dilates or constricts. Facial vasodilation, is at large due to sympathetic activity. An overactive sympathetic nervous system can be to blame for some.
    As for the sweat test - in medicine, we call it hyperhydrosis if it is too much, or anhydrosis if you don't sweat enough, is a good test of how your autonomics are working

    Cheers,
    Meng, PA-S2

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    Quote Originally Posted by MENGWU3 View Post
    Please keep us posted on your test results and her proposed treatment plan. Aside from hormones, autonomic nervous system is another huge factor in blood vessel dynamics - whether it dilates or constricts. Facial vasodilation, is at large due to sympathetic activity. An overactive sympathetic nervous system can be to blame for some.
    As for the sweat test - in medicine, we call it hyperhydrosis if it is too much, or anhydrosis if you don't sweat enough, is a good test of how your autonomics are working

    Cheers,
    Meng, PA-S2
    Hey cheers for the reply

    I have not heard or read much about the autonomic nervous system causing the blushing

    I was considering the ETS surgery, I really hope they can reduce my blushing.

    All the above you said I remember her saying but I was so caught up in the moment that I didnt take in what she said.

    Only thing I remember is before they treat me they need to know where I sweat most she did mention if I sweat more on the face it means its X, if I dont then it means its Y. :-)

    Like I say she mentioned some sort of Sauna test not sure what it entails I tried to google it but couldnt find anything.

    Are you in the medical field?

    cheers

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    It's nice to see that theyre actually taking a proper look at your condition.
    I have tendency to sweat more than is normal.
    I wouldnt need a sauna test coz i could tell them what exactly would happen.

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    Quote Originally Posted by red devil View Post
    It's nice to see that theyre actually taking a proper look at your condition.
    I have tendency to sweat more than is normal.
    I wouldnt need a sauna test coz i could tell them what exactly would happen.
    Yes I have pretty much had every test going so I thought, the GP never mentioned the nervous system before. I am really hopeful this time they find the root cause.

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    I had a sweat test on feet / hands - reduced sweating. I have noticed since my flushing / burning onset I cannot sweat on my face, though I have not had the full body sweat test (only available at a few facilities in US). I think since i have reduced sweating in hands / feet, this is evidence enough.

    A lot of people thought I had overactive sympathetic nervous system as cause, but I got a stellate ganglion block (sort of a temporary sympathetic upper body block) and it did nothing.

    My derm thinks that the common pathway for many folks like me, is small fiber neuropathy. This means the terminal nerves degenerate, and when they try to grow back, they become super overactive. They are now just so sensitive to all stimuli + molecules floating around. The terminal nerves we are talking about are small fibers - small fiber neuropathy. They are the thinnest nerves, so easily damaged by antibiotics, eg. Their job is to sense pain and heat. Basically my derm explained it to me by saying - these nerves are damaged, thinking it's 1000 degrees when it's not, and blood vessels are acting accordingly, while transmitting pain/burning/heat info to brain.

    A stellate ganglion block will work more if you have overactive sweating.

    Still, these things are not mutually exclusive - what starts as neuropathy + chronic burning / pain issues, can end up recruiting sympathetic response.

    What is causing the neuropathy is the million $ question - worthwhile and easy to have a neuropathy panel like b12 testing, glucose tolerance, etc.

    What helps in neuropathy cases would be membrane stabilizers - like anti-seizures, that prevent the nerves from over-firing. Specifically, sodium channel blockers can be really good for thermal pain, because a type of sodium channel (there are many isoforms) is alllll over the small fibers and can be one of the ion channels that are up-regulated, and can contribute heavily to small fiber over activity.

    https://www.jstage.jst.go.jp/article.../_pdf/-char/en

    However, everything has potential to make you worse (stellate ganglion blocks, membrane stabilizers, sodium channel blockers, etc) - best to proceed with baby doses with everything and remember this when trialling different things.

    Micro-botox can be something else that can help with flushing + burning, but I see it as an add-on medication (not enough by itself for severe cases). I get 100-200 units full face subcutaneously (find a derm with experience), hope being that it will prevent the nerves from talking to blood vessels. It is also used for neuropathic pain more and more often (injected in same way). The small fibers are JUST BELOW the skin, and the hope is to hit them sort of and stabilize them.

    https://www.medscape.com/viewarticle/860783 (for me personally, it actually took ~3-4 rounds of injections before I noticed anything). Botox would help reduce sweating too if that's an issue

    Another thing that can be really good actually is opioids for this stuff. There are partial opioids like suboxone that I think might be worth trying (I haven't tried suboxone). I have tried another partial opioid (butrans) which took away my evening flushing/burning but it didn't work quite right for me (side effects/sedation, decreased heat tolerance). However, opioids actually have a way of decreasing neurogenic inflammation peripherally (and thus flushing) in a way that popular anti-seizures like gabapentin, can't. In the US it would be hard to get an rx for opioids unless you have trialled everything else. I might try another formulation/suboxone

    https://www.researchgate.net/publica..._immune_system

    It's been 3 yrs, and I haven't been able to find a reason yet for my flushing, burning, small fiber neuropathy unfortunately, so we just try to treat it. I think about 50% of cases, they can't find the cause. I get partial relief (~50%) with polypharmacy approach (have found ~3-4 treatments that help out of maybe 70?). Hopefully my comment here will help give you/others some ideas + take care
    Last edited by laser_cat; 5th March 2019 at 08:37 PM.

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    Quote Originally Posted by laser_cat View Post
    I had a sweat test on feet / hands - reduced sweating. I have noticed since my flushing / burning onset I cannot sweat on my face, though I have not had the full body sweat test (only available at a few facilities in US). I think since i have reduced sweating in hands / feet, this is evidence enough.

    A lot of people thought I had overactive sympathetic nervous system as cause, but I got a stellate ganglion block (sort of a temporary sympathetic upper body block) and it did nothing.

    My derm thinks that the common pathway for many folks like me, is small fiber neuropathy. This means the terminal nerves degenerate, and when they try to grow back, they become super overactive. They are now just so sensitive to all stimuli + molecules floating around. The terminal nerves we are talking about are small fibers - small fiber neuropathy. They are the thinnest nerves, so easily damaged by antibiotics, eg. Their job is to sense pain and heat. Basically my derm explained it to me by saying - these nerves are damaged, thinking it's 1000 degrees when it's not, and blood vessels are acting accordingly, while transmitting pain/burning/heat info to brain.

    A stellate ganglion block will work more if you have overactive sweating.

    Still, these things are not mutually exclusive - what starts as neuropathy + chronic burning / pain issues, can end up recruiting sympathetic response.

    What is causing the neuropathy is the million $ question - worthwhile and easy to have a neuropathy panel like b12 testing, glucose tolerance, etc.

    What helps in neuropathy cases would be membrane stabilizers - like anti-seizures, that prevent the nerves from over-firing. Specifically, sodium channel blockers can be really good for thermal pain, because a type of sodium channel (there are many isoforms) is alllll over the small fibers and can be one of the ion channels that are up-regulated, and can contribute heavily to small fiber over activity.

    https://www.jstage.jst.go.jp/article.../_pdf/-char/en

    However, everything has potential to make you worse (stellate ganglion blocks, membrane stabilizers, sodium channel blockers, etc) - best to proceed with baby doses with everything and remember this when trialling different things.

    Micro-botox can be something else that can help with flushing + burning, but I see it as an add-on medication (not enough by itself for severe cases). I get 100-200 units full face subcutaneously (find a derm with experience), hope being that it will prevent the nerves from talking to blood vessels. It is also used for neuropathic pain more and more often (injected in same way). The small fibers are JUST BELOW the skin, and the hope is to hit them sort of and stabilize them.

    https://www.medscape.com/viewarticle/860783 (for me personally, it actually took ~3-4 rounds of injections before I noticed anything). Botox would help reduce sweating too if that's an issue

    Another thing that can be really good actually is opioids for this stuff. There are partial opioids like suboxone that I think might be worth trying (I haven't tried suboxone). I have tried another partial opioid (butrans) which took away my evening flushing/burning but it didn't work quite right for me (side effects/sedation, decreased heat tolerance). However, opioids actually have a way of decreasing neurogenic inflammation peripherally (and thus flushing) in a way that popular anti-seizures like gabapentin, can't. In the US it would be hard to get an rx for opioids unless you have trialled everything else. I might try another formulation/suboxone

    https://www.researchgate.net/publica..._immune_system

    It's been 3 yrs, and I haven't been able to find a reason yet for my flushing, burning, small fiber neuropathy unfortunately, so we just try to treat it. I think about 50% of cases, they can't find the cause. I get partial relief (~50%) with polypharmacy approach (have found ~3-4 treatments that help out of maybe 70?). Hopefully my comment here will help give you/others some ideas + take care
    Oh no sorry to hear the stellate ganglion block didnt work

    what damaged your nerves? are they damaged forever?

    I have to say I was feeling hopeful but after reading this I bet I dont get any further.

    I see ETS as the only option but at risk of other complications :-)

    need to live again :-)

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    You are so knowledgeable laser cat great reply there is some good reading in there.

    I get really sweaty hands and feet and they can be cold, still not really sure what I am being tested for but she needed to know how I sweat.

    She mentioned a couple of products that may help depending on results from tests.

    Thing that got me was I explained about the Mirvaso, and she didnt know what Mirvaso was :-(

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