That is very revealing, shadow.
Okay, let's try to figure out what usually causes dermographia...
Any guesses? We have one good hint: it rhymes with xistamine which is released by overactive xast cells. :) (Yes, it's levity, I hope you got it.)
The mere physical pressure causes the MCs to degranulate. Like mini landmines that are wrongly set to require just a little bit to go off. Heat can do it, a bee sting, and so on.
So this means that you might very well benefit from xistamine blockade, using the H1 and H2 blockers which I'd previously mentioned. I'd say that's promising.
Here's what'd very likely happen if you visited a famous and expensive American MCAS specialist:
You'd never see the actual doc, only maybe an NP or PA who would put you on H1 & H2, probably at double dose, for 6 weeks. Plus an MC stabilizer such as quercetin. Then you'd have a followup appointment to see if it benefited you.
Try this demographia test, but on the sternum: https://www.youtube.com/watch?v=U-bfu4RaOHo
At this point, I'll mention Tx:
- H1 and H2 blockers, OTC are fine; also maybe trying each one
- mast cell stabilizers, OTC are fine; also trying each one
There is a chance that those can reduce baseline inflammation, and so your face pain might automatically reduce.
Also you should be meticulously noting any food sensitivities, which can be difficult because supposedly it might take a day or two to react to some. Maybe.
But I don't think you've mentioned food sensitivities.
Another worthwhile vid is Anne Maitland
https://www.youtube.com/watch?v=O2tc1W5bHiM
"Anaphylaxis, Mast Cell Activation Syndrome, or Something Else?"
She dares to mention that vaccines can be bad for MCAS sufferers. Bravo. She also touches on neurological links to MCs. "small fiber neuropathy" is something we should probably becomes familiar with. See if it matches you.
Afrin, Tania and Maitland are putting out very good videos now, but the ones from 10 years ago weren't so great. Now they have tons of 'clinical experience' to draw on, and therefor they have great overviews.
"It looks like MCAS is going to be a big area of research in the near future if it is taken seriously by the medical profession"
Yep, the current guess is that ~20% of the general population is affected.
"It clearly affects some more than others"
Yep, and most progress.
"and often women as we seem more prone to immunological disorders."
Yep, that's true in almost all of immune hyperactivity. So we'd figure that hormones are probably involved.
[the opposite of 'hyper' are the Immunodeficiency Disorders, which usually result in getting infections often.]
Add in this one by Tania Dempsey and you have most of what you need to know: 'Mast Cell Activation Syndrome : The Interplay Between Immunity and Neuroinflammation'
https://www.youtube.com/watch?v=9w0VeJkACI
Watch both of them at least 3 times. No one can absorb it all just once through.
"You don’t know how much difference your help has made."
Thanks, you've brightened my day.
I'll write more tomorrow but for now, here's recently a top MC doc, Afrin:
https://youtu.be/m6neGwYf6_g?&t=1636
I've cued it to where he's talking about how experienced docs can spot MC disorders from the Hx. Then watch the intro, at least.
I'd never looked into rosacea previously, but look what pops up immediately:
https://www.startpage.com/do/dsearch?query=rosacea+mast+cells
"Mast Cell Stabilizers in the Treatment of Rosacea - NCBI
Sep 2, 2021 ... Recently, mast cells (MCs) have emerged as key players in the pathogenesis of rosacea through the release of pro-inflammatory cytokines...
While the exact etiology of rosacea remains unknown, its pathogenesis is thought to be multifactorial..."
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You've got ME/FM, and mystery conditions (like the face pain), so think of inflammation constantly in regards to every symptom you'll have. The concept of Mast Cell Stabilizers should become second nature to you. There are many that don't requite a prescription, oral and topical. Quercetin, fisetin, luteolin, menthol/peppermint, etc. Try them on your face. Then I'd try anti-inflammatories like anti-COX (NSAIDs) and even anti-LOX (frankincense), because you never know until you try.
Nobody should take antibiotics long term unless they really really have to, because they destroy good gut bacteria; but many docs instead use them like dispensing candy. What happens in the gut can influence bodywide inflammation (the very destructive ankylosing spondylitis and Klebsiella connection) and especially in the skin.
(But then again, there is a lot of hype about using probiotics as wonder drugs, which they aren't. Except sometimes for some people, they are. Nothing is simple.)
Think of rosacea for you as part of a lifelong tendency toward inflammation everywhere, and then there are some acute triggers involved.
No, I'm not a clinician.
Remember that the Florida dentist called it a diagnostic injection. Since it took away the symptoms, he knew that was the right nerve.
Immune stories:
- It can take years to get diagnosed with Multiple Sclerosis. You don't have that, but you can guess that some people with MS don't get Dx'ed ---- but more important to know is that some who are Dx'ed with MS don't actually have it. It is generally a "diagnosis of exclusion" which means "we're not sure what you have, but we've probably ruled out everything else". All of that shows how nebulous things can be with the immune system.
- Lupus is called "the disease of a thousand faces" because it can vary so much. It is generally Dx'ed via autoantibody testing. It can get worse or better, probably because the level of background inflammation goes up and down; so it's not just about which autoantibodies are present. Nothing is simple.
- Mast cell disorders are said to be "often seen by doctors but seldom recognized".
"I’ve had blood tests for various reasons, including with a rheumatologist, so wouldn’t an autoimmune thing have shown up?"
No, not necessarily. It can't be ruled out, no more than anyone can say, "We've ruled out every virus". Plus, there is also auto-inflammatory (e.g., mast cells amok), which is different. If you like learning, that is the field. The immune system can do almost anything -- think of it like billions of tiny mercenaries from a foreign galaxy that have agreed to inhabit you and protect you from malicious invaders.
"lansoprazole"
I'd lean to an H2 antihistamine/antacid (e.g. Pepcid) rather than a PPI. Because you might have high histamine. Also, be aware that any acid suppressants can lead to malabsorption of nutrients over time.
"venlafaxine"
It'd be nice to know why an SNRI works against pain. Then we could use that leverage.
"rosacea"
Bingo. Mast cells involved.
"antihistamine"
Bingo 2, mast cells.
"asthma"
Bingo 3, MCs.
"hypnotherapist (believe it or not!)"
Cool. Long ago I would hypnotize people. Like: "forget the number 8"; then bring them up and say "now count to ten on your fingers" and see the surprise.
"I guess because I’ve found medical treatment has not resolved my pain problems and left me struggling"
It's good at acute conditions; but yes, mostly poor at chronic and/or mystery conditions.
"I have a science background"
Cool. And hopefully you also liked to read Sherlock stories.
"New Age thinking that if you look after your mind and body you will magically stay well"
True, we can't be namby pamby in the face of harsh medical conditions. But still, mental attitude does influence what biochemicals get secreted. Cortisol would be a dramatic one.
"yet have suffered a lot of health problems"
Let's see if we can reverse some of that.
This takes lots of mental effort. Maybe you will be the one who sticks it out longer than anybody. Most can't get past 2 days. Some not even get started. Almost all just want a magic specialist with a magic test and a magic pill. But if you like problem solving, you'll have a tremendous advantage.
[You see, I was just there trying to challenge and motivate you :) ]
"Where exactly should I apply these?"
I posted a link to a png image. Also look at a few more, and review where the injections went on the Florida video. The nerve should run along the sternocleidomastoid muscle, to the back (not front) of it.
Ultimately, I'd think we'd want to get that nerve to stop being hyperactive, by addressing the underlying cause - which we don't know yet.
"Thank you for all your help and research. I believe you are a true healer!"
Hey, thanks! Made me smile. Okay, I won't quit doing this :)
Btw, is your sleep refreshing sleep, or the ME style of non-refreshing sleep?
Here are some thoughts about what to try on the auricular nerve. You'd be the one to determine in advance any risk.
- topical anti-inflammatories, which work/penetrate best where skin is thinnest. even capsaicin which btw I learned through experimenting is good for sunburn when used early.
- topical ice
- transcutaneous electrical nerve stimulation (TENS), which are OTC devices in USA
- trying topical anesthetics like benzocaine or prilocaine that can be applied to the skin overlying the GA nerve. These can provide localized numbing effects.
- getting a doc to prescribe any topical anesthetics that are Rx there
- acupuncture? I dunno about that one though
- how are your meditation or other stress reducing maneuvers going?
"I feel attacked by my own body."
Right and so we should wonder about an autoimmune or auto-inflammatory component. Hyper-immunity in general, and any resulting excess sympathetic tone. How's that sound to you?
"I am in the U.K."
I should have figured since you said ME and not CFS. So then, how is your vitamin D level in rainy-land?
"I’ve told numerous doctors, dentists and ophthalmologists over the years about this pain and they have all looked at me blankly."
I'd look for a good Functional Medicine Internist, that would try to find the *why* of everything together and not get bogged down like a specialist/consultant.
"cannot find a mention of Piper Syndrome in the U.K"
I think only those two dentists acknowledge Piper Syndrome. However, we can zero in on use of injections for any overactive nerves. That should be parallel, I'd think.
"I can see they are thinking anxious, neurotic woman over-exaggerating!"
People with mystery conditions often get wrongly sent to a shrink.
Here's Piper himself, with that same dentist: https://www.youtube.com/watch?v=E521o4NY0To
Here's Piper himself, with that same dentist: https://www.youtube.com/watch?v=E521o4NY0To
Hey, it's great that you're not feeling so alone in this :)
That dentist is in Florida, btw. He injects something like lidocaine around that nerve in the neck (not directly into the nerve, of course). It seems to be the Great Auricular Nerve. It also involves the ear. https://images.squarespace-cdn.com/content/v1/506550aae4b065ead0ec3983/1372887977285-S4U2OFF6T52TRF17J9KH/Anatomy+gtr+auricular.jpg?format=2500w
A doctor or dentist should be able to do that injection.
------------------------------------
The other possibility would have been the trigeminal nerve. Since you mention the temple, have you tried topical menthol there or lavender? Menthol is a real anti inflammatory, and so is lavender. Could be worth a try. Even ice, or maybe that would be bad.
It seems to me the way to proceed is to focus only on the head/face, and forget for now about the arm and leg aspect. And forget completely about referred pain.
And... we can tie things together by noting that the same sympathetic nervous system over-activity associated with Piper Syndrome is also involved in FM: https://www.thefibroclinic.com/the-sympathetic-nervous-system-fibromyalgia-pain/
Do you get enough restful sleep to try and reduce sympathetic activity? Tomorrow I'll try to see whatever else can be DIY for that. Unless you already know all about reducing sympathetic activity.
"I can only think it is some weird pain syndrome."
shadow, have you seen anything about Piper Syndrome?
https://www.youtube.com/watch?v=NwOYxL2hjc0
"WEIRD, BURNING Facial & Dental PAIN DIAGNOSED: Piper Syndrome" (6 minutes)
That vid even briefly discusses how most dentists don't know it, or understand it. Tell me if you think it fits, and it doesn't have to fit perfectly.
Here's one of the rare mentions of Piper Syndrome, you might one day show it to a dentist: https://www.igi-global.com/dictionary/the-occlusal-neurological-and-orthopedic-origins-and-implications-of-the-hypersensitive-dentition/76020
Plus there's one more video. When they say "sympathetic nervous system", you might already know that's the excitatory branch, and parasympathetic is the relaxing branch. So it's apparently a matter of an overactive nerve affecting one side, and the treatment they use is to inject a nerve blocker.
Thank you, Ken, I really appreciate your reply and it makes sense. The stress incident was about 30 years ago so should not still be affecting me. At the last blood pressure test, it was up a bit but not requiring treatment, to give you an idea where I am with that. The strange pulling sensation in left of face is unpleasant, especially when associated with pain. I can only think it is some weird pain syndrome. The left leg thing is rare and symptoms are mostly above waist I guess. It’s been miserable to live with and I don’t think I’d want to cope without the venlafaxine which does reduce pain. None of the other antiDs I’ve tried - and I’ve tried a lot - do, even gabapentin (which I know is not an antidepressant but the doc tried that at one point). It’s awful when I go to the dentist because she seems to get frustrated that I’m so sensitive but again does not understand why. I’m sure she thinks I just being difficult. If my left side felt like my right side, I could imagine what it’s like to feel normal and not be in discomfort. Could this have been caused by some kind of minor stroke at some point? I’ve had migraines since a teenager and now I’m 65 and get the auras (zigzags and or missing gaps of vision due to black blotches) but not the vicious headaches
Yep, you're right that logically it doesn't make much sense to have one-sided pain, unless it is referred pain. But still, it wouldn't seem likely to have referred pain that originates in the head area but is felt all the way down to the ipsilateral arm or even sometimes the leg --- UNLESS your fibromyalgia can somehow create referred pain at distant sites like that. Since FM might work by sensitizing nerves, maybe it's able to do so. But I didn't find any case reports on such a thing. It's a thought, anyway.
I also remember a guy with ME or CFS that had an auto accident and subsequently developed his ME/CFS symptoms on his left side only -- as if the impact trauma to that side was a big factor. That was very unusual also.
I don't think that x-rays can see every thin crack in a tooth, e.g. if the crack is perpendicular to the x-rays. Maybe you were really clenching your teeth during that stress episode?
As far as the nosebleed? Maybe a hypertensive crisis. That could have caused the bleed and also the popping sound simultaneously. I hope you use a BP monitor during any time of great upset. You probably know that > 180/120 is a worry for organ damage, *especially* if there are symptoms at the same time. The symptoms make it go from medical urgency to medical emergency.
Btw, there was a time when weightlifters doing very heavy deadlifts would use the Valsalva maneuver. Some would get a burst of blood shooting out the nose right while going the lift.