Page 3 of 3 FirstFirst 123
Results 21 to 28 of 28

Thread: Trigeminal sensory malfunction theory on the cause of rosacea

  1. #21
    Senior Member Brady Barrows's Avatar
    Join Date
    Jun 2005
    Location
    Honolulu, HI, USA
    Posts
    4,550

    Default

    Quote Originally Posted by ginaisred View Post
    Thanks Brady, you are way more knowledgable than me on this subject. We shall see, would be great to get everyones opinions on this matter
    So has Dr. Chu prescribed a topical or are you taking this orally? What is the dosage?
    Brady Barrows
    Join the RRDi

  2. #22
    Senior Member
    Join Date
    Oct 2015
    Posts
    296

    Default

    Quote Originally Posted by Brady Barrows View Post
    So has Dr. Chu prescribed a topical or are you taking this orally? What is the dosage?
    I take 10mg once a day, currently at night. Along with my clonidine, mirtazapine, beta blocker etc. Been on it for 3 days. No change yet

  3. #23
    Senior Member laser_cat's Avatar
    Join Date
    Jan 2017
    Posts
    510
    Country: United States

    Default

    Quote Originally Posted by redtere View Post
    So they are saying , regardless of how complex the cause is, the end result is simply the activation of mast cells (degranulation) and that is what causes all the symptoms?
    If that is the case taking systemic Gastrocrom 4 times a day for a few months should totally clear up the symptoms (even if it is hitting a walnut with a sledgehammer approach).
    Hi redtere,

    I've tried gastrocrom 3 times a day or so, for about a month. An allergist prescribed this, because she said why not. (I have subtype 1.) It did nothing. However, she said that its actions are pretty limited to the gut (and so not affecting the skin).

    I do agree with you however that degranulated mast cells are fundamentally involved in many cases -- at least this is what I have inferred from papers too. Which may be supported by the fact that zyrtec (antihistamine) worked so well for me initially, but only for a couple weeks. (Many ppl here report temporary benefit of antihistamines.)

  4. #24
    Junior Member
    Join Date
    Nov 2018
    Posts
    13

    Default New Trigeminal Nerve Question!

    Hi I know this is an old post, but in my research to see if I can help my mother, the Trigeminal Nerve / Rosacea link came up. As background, she has rheumatoid arthritis and possibly sjogren's syndrome, and has developed severe flushing over the last few years which started very much as a 'warm room flush' until it was 24/7 winter flushing and swelling, and pretty much nothing in summer. In piecing the puzzle together, I know she had an injury to her jaw as a child and would get what she called a 'jaw headache' but similar to a migraine, all throughout her life.

    Nothing helped with these headaches, other than waiting it out for a couple of days and not sleeping on the affected side. Since developing her autoimmune conditions and the onset of the flushing symptoms about 5 years ago, no more migraines. I have been considering the rosacea is linked to her autoimmune disease, but does anyone think it is possible that trigeminal nerve damage occurred when she had this injury as a child which resulted in the migraines, then for some reason the migraines changed to flushing? There was literally no time when she had both the migraines and the flushing.

    Also, when reading about Trigeminal Nerves it mentions dry eyes. What would distinguish this from ocular rosacea or sjogrens?

    But I guess my main question would be: would it be possible for the damage to a nerve on one side of her face to result in flushing of the entire face?

    She is going back to her neurologist, who is new to all of this, in January. I was wondering if there is any point raising it or if there are any nerve blocks available!

  5. #25
    Senior Member laser_cat's Avatar
    Join Date
    Jan 2017
    Posts
    510
    Country: United States

    Default

    Quote Originally Posted by Vmar View Post
    Hi I know this is an old post, but in my research to see if I can help my mother, the Trigeminal Nerve / Rosacea link came up. As background, she has rheumatoid arthritis and possibly sjogren's syndrome, and has developed severe flushing over the last few years which started very much as a 'warm room flush' until it was 24/7 winter flushing and swelling, and pretty much nothing in summer. In piecing the puzzle together, I know she had an injury to her jaw as a child and would get what she called a 'jaw headache' but similar to a migraine, all throughout her life.

    Nothing helped with these headaches, other than waiting it out for a couple of days and not sleeping on the affected side. Since developing her autoimmune conditions and the onset of the flushing symptoms about 5 years ago, no more migraines. I have been considering the rosacea is linked to her autoimmune disease, but does anyone think it is possible that trigeminal nerve damage occurred when she had this injury as a child which resulted in the migraines, then for some reason the migraines changed to flushing? There was literally no time when she had both the migraines and the flushing.

    Also, when reading about Trigeminal Nerves it mentions dry eyes. What would distinguish this from ocular rosacea or sjogrens?

    But I guess my main question would be: would it be possible for the damage to a nerve on one side of her face to result in flushing of the entire face?

    She is going back to her neurologist, who is new to all of this, in January. I was wondering if there is any point raising it or if there are any nerve blocks available!
    hey there

    they can do trigeminal blocks to see if that is where her pain is. Usually they do a temp one, to see if helpful (lasting less than a day). Then they can put "stuff" in there to make it last longer I think, or do an ablation of some sort to make it permanent - they do this for trigeminal neuralgia all the time.

    I think migraines coexist a lot with flushing/burning conditions - both neurovascular. I actually had a series of migraines back to back, and then it "switched" into flushing/burning for me. Migraines aren't really a problem since my flushing/burning onset, though i do have abortive medicine that works in case I sense one coming (but I use very rarely though).

    If she has sjogren's, I'm guessing the dry eyes is coming from that. However maybe an eye doctor can differentiate. If she has sjogren's, then there is a good chance that is behind her flushing/burning symptoms I think -- in which case an anti-inflammatory med lineup might be more helpful than vasoactive meds (just based on things I've read).

    For your main q - yes damage on one side can result in a "spread" of damage. Eg sometimes flushing/burning symptoms of the feet are triggered after trauma to one foot (sprain, surgery etc). So symptoms spread to the other foot and possibly up the legs, or to the hands. I think it's called "mirror" spread of pain, and is kind of wild when you think about it. I don't think it's completely understood why but I've read somewhere that the CNS receives simultaneous input from sensory nerves from both sides, and even though they might be different, the CNS might send the same outgoing messages bilaterally (I'm butchering that most likely!).

    I would think a neurologist would be very interested in knowing if there were a known trauma trigger.

    take care

  6. #26
    Junior Member
    Join Date
    Nov 2018
    Posts
    13

    Default

    Quote Originally Posted by laser_cat View Post
    hey there

    they can do trigeminal blocks to see if that is where her pain is. Usually they do a temp one, to see if helpful (lasting less than a day). Then they can put "stuff" in there to make it last longer I think, or do an ablation of some sort to make it permanent - they do this for trigeminal neuralgia all the time.

    I think migraines coexist a lot with flushing/burning conditions - both neurovascular. I actually had a series of migraines back to back, and then it "switched" into flushing/burning for me. Migraines aren't really a problem since my flushing/burning onset, though i do have abortive medicine that works in case I sense one coming (but I use very rarely though).

    If she has sjogren's, I'm guessing the dry eyes is coming from that. However maybe an eye doctor can differentiate. If she has sjogren's, then there is a good chance that is behind her flushing/burning symptoms I think -- in which case an anti-inflammatory med lineup might be more helpful than vasoactive meds (just based on things I've read).

    For your main q - yes damage on one side can result in a "spread" of damage. Eg sometimes flushing/burning symptoms of the feet are triggered after trauma to one foot (sprain, surgery etc). So symptoms spread to the other foot and possibly up the legs, or to the hands. I think it's called "mirror" spread of pain, and is kind of wild when you think about it. I don't think it's completely understood why but I've read somewhere that the CNS receives simultaneous input from sensory nerves from both sides, and even though they might be different, the CNS might send the same outgoing messages bilaterally (I'm butchering that most likely!).

    I would think a neurologist would be very interested in knowing if there were a known trauma trigger.

    take care
    Thanks laser_cat, this has been very helpful! Would the nerve block, in your understanding, have the ability to block the flush itself? I think I am a bit confused about the whole nerve pain v flushing and whether it is one and the same thing. I know all she wants is to decrease the constant flushing, and while she doesn't specifically describe it as 'pain' it is so similar to many of the stories I have read on this forum, but the whole pain medication and nerve block approach I think confuses me a bit!

  7. #27
    Senior Member laser_cat's Avatar
    Join Date
    Jan 2017
    Posts
    510
    Country: United States

    Default

    Quote Originally Posted by Vmar View Post
    Thanks laser_cat, this has been very helpful! Would the nerve block, in your understanding, have the ability to block the flush itself? I think I am a bit confused about the whole nerve pain v flushing and whether it is one and the same thing. I know all she wants is to decrease the constant flushing, and while she doesn't specifically describe it as 'pain' it is so similar to many of the stories I have read on this forum, but the whole pain medication and nerve block approach I think confuses me a bit!
    Honestly I think it all depends on the person. Unfortunately! Perhaps see how far you can get with propranolol, mirtazapine, effexor, clonidine, antihistamines etc since those guys are known to be effective for many people for facial flushing before widening your search space

    Take care

  8. #28
    Senior Member laser_cat's Avatar
    Join Date
    Jan 2017
    Posts
    510
    Country: United States

    Default

    Quote Originally Posted by Vmar View Post
    Thanks laser_cat, this has been very helpful! Would the nerve block, in your understanding, have the ability to block the flush itself? I think I am a bit confused about the whole nerve pain v flushing and whether it is one and the same thing. I know all she wants is to decrease the constant flushing, and while she doesn't specifically describe it as 'pain' it is so similar to many of the stories I have read on this forum, but the whole pain medication and nerve block approach I think confuses me a bit!
    just wanted to emphasize again that in addition to blood vessel stabilizers I mentioned, I think aggressive anti-inflammatory approach could also help her with the flushing. (see the woman in fig 1, who has sjogren's, flushing, and is treated with immunotherapy https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4720682/ .. sorry if i linked that to you before)

    also maybe something like this would be helpful in making sense of things -

    https://medium.com/dr-ming-kao/sympa...n-15dae2f1f651

    namely the picture on the right, which I think is more or less what is going on (ignore the sympathetically mediated pain for a second) Something like propranolol will block the norepinephrine from binding to the blood vessels and dilating the blood vessels. But there's likely other stuff released by the sensory nerve endings like substance P which are strong vasodilators as well (norepinephrine can also bind to and trigger sensory nerve activity, which propranolol doesn't touch).

    For me I find that propranolol doesn't do much. It actually just makes me colder between flaring! But if I try to freeze the nerve endings (with membrane stabilizers like mexiletine or botox injections) this will minimize both flushing + burning.

    Now back to the sympathetically mediated pain stuff. I think there are 2 things that are going on - 1) small fiber neuropathy (damaged sensory nerves like the woman in fig 1, who has sjogren's + inflammation causing her SFN + irritating her sensory nerves) and 2) sympathetic system is on overdrive. They end up in a positive feedback loop - the neuropathy signal goes through the stellate ganglion (sympathetic center) to trigger a response on the blood vessels + the sensory nerves, etc . The sympathetic system is like an amplifier. I guess this part isn't really pertinent to your last post, but just wanted to give you context for the picture :p A positive response to a stellate ganglion block would confirm sympathetic involvement, but I'm guessing it might not be the only thing involved (namely there are damaged sensory nerves).

    There's no way to test for SFN directly in the face because biopsies there aren't standardized (and not many people want a scar on their face :p ) But my derm believes that damaged sensory nerves are part of the neurogenic rosacea picture, and I've since found several others like me who have the SFN result show up in leg biopsies (who have neurogenic rosacea symptoms). I wouldn't get so bogged down on whether your mom has "enough" pain for SFN -- I think any disabling flushing that doesn't really make sense, fits the bill too.

    GL
    Last edited by laser_cat; 7th December 2018 at 11:37 PM.

Similar Threads

  1. Trigeminal Nerve Block For Burning and Stinging?
    By Willbill90 in forum General rosacea questions
    Replies: 1
    Last Post: 28th September 2016, 02:00 AM
  2. Confused about the rosacea/demodex mite theory ?
    By Rach in forum General rosacea questions
    Replies: 8
    Last Post: 26th August 2016, 02:11 AM
  3. Theory that Rosacea is really Autoimmune
    By Faith1989 in forum General rosacea questions
    Replies: 19
    Last Post: 30th July 2015, 11:49 AM
  4. Replies: 0
    Last Post: 3rd February 2015, 07:50 PM
  5. Inflammatory Theory on the Cause of Rosacea
    By Brady Barrows in forum General rosacea questions
    Replies: 7
    Last Post: 29th November 2005, 02:10 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •