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Strange left-sided symptoms for years
Hello, I’m hoping to get some independent input into a strange problem I have. I have suffered for years with pain in various places. I have IBS and get pain in my abdomen regularly. I was getting migraine a lot but now only get the aura not so much pain, thank goodness. There have been a lot of aches and pains generally, as I seem to be physically hypersensitive to sensation, and I am diagnosed with depression, ME, and fibromyalgia. However, one of the long-standing pain syndromes I have is weird. Basically, I am much more sensitive in my left side than my right. I have a lot of facial discomfort on the left, headaches, eye discomfort, teeth and gum discomfort (there is nothing wrong with teeth and gums), and tinnitus in left ear. I have uncomfortable sensations in the left of my face a pulling, tugging, discomfort, sometimes off numbness which comes and goes, left arm and hand where ulnar nerve is in wrist, left of back and shoulder, sometimes down left leg. I started taking venlafaxine for the pain and it does help. I recently had a painless medical test for which I had to avoid meds for a while (then I forgot to take them later). After the test, I felt more and more discomfort on left of face and teeth until I remembered I hadn’t had the meds. It was a horrible reminder of why I am taking venlafaxine despite its down sides. Once I’d taken it again, the symptoms gradually subsided and became more bearable. What I don’t understand is why I am getting this extreme discomfort on left side. I haven’t heard of this before and docs just look at me blankly when I mention it. The teeth thing is particularly wearing. It’s not straightforward sensitive teeth and special toothpaste makes no difference. I felt so miserable once the venlafaxine pain relief had worn off, I did feel that if I had to live like that all the time, I wouldn’t want to stay around. It is continual discomfort and misery and it is very lonely that no-one seems to understand what is going on or what to do for the best. I did have an episode when I was under great stress once and in a very bad state where it felt like something exploded in my head on that side and my nose started bleeding. I don’t know what caused that but the nurse didn’t seem very sympathetic or questioning. I think the left-sided pain stems from around that time. Any thoughts on what could be going on?
"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.
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.
2 Comments
I'd start small, just to be prudent.
Yes you did, thanks I just have to find the ibuprofen cream now. I’ve been having work done in my house and stuff is everywhere!
Try this demographia test, but on the sternum: https://www.youtube.com/watch?v=U-bfu4RaOHo
1 Comments
That’s very interesting, Ken. Just tried it and I do get that. I’ve had it worse in the past too. Its a very strange phenomenon.
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.
- 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.
"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.]
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.
https://www.youtube.com/watch?v=9w0VeJkACI
Watch both of them at least 3 times. No one can absorb it all just once through.
2 Comments
correct url: https://www.youtube.com/watch?v=9w0VeJkACI8
Thank you for the video, Ken. 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. It clearly affects some more than others - and often women as we seem more prone to immunological disorders. These things seem almost insignificant in the light of international events but affect individuals so much.
I don’t think we have so much of the ‘functional medicine’ in the U.K. and there has been a scandal with one practitioner which doesn’t help the serious professionals at all. I wish it were more integrated with the medical profession here because seeing someone for 10 minutes for one symptom only is a hopeless way to help people with systemic problems.
I don’t think we have so much of the ‘functional medicine’ in the U.K. and there has been a scandal with one practitioner which doesn’t help the serious professionals at all. I wish it were more integrated with the medical profession here because seeing someone for 10 minutes for one symptom only is a hopeless way to help people with systemic problems.
"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 :) ]
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 :) ]
1 Comments
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.
Thank you for the info. I will certainly consider changing this.
"venlafaxine"
It'd be nice to know why an SNRI works against pain. Then we could use that leverage.
I would love to know too. I know there is recent research which seems to point to antidepressants not working for pain. I’ve tried a few and they didn’t but venlafaxine does. I’d love to give it up but each time I try, the pain comes back and it’s incredibly wearing.
"rosacea"
Bingo. Mast cells involved.
Do you think so? Stuff I’ve read suggests it is caused by dermodex mites. I must admit, I am sceptical about this because antibiotics work and keep it at bay. I’d rather not take them but tooicsl treatments weren’t very effective and felt unpleasant. Quite honestly, I did not feel the doctors knew what caused it.
"antihistamine"
Bingo 2, mast cells.
I have wondered about this but I’m sure my GP would not test for this and, as I understand it, treatment is rare here too. I wouldn’t know what to ask for. They are probably fed up with me as it is.
"asthma"
Bingo 3, MCs.
Yes
"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 know the test. Good to know you use hypnosis too. I think it can do amazing things and it gives a totally different perspective.
"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 :) ]
Thank you for your kindness and encouragement. I am impressed with how much you’ve studied. I’m aware of some things because they have affected me and I’ve had to do research, but you help people with different conditions. I hope I haven’t taken up too much of your time. Your guidance is invaluable
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.
Thank you for the info. I will certainly consider changing this.
"venlafaxine"
It'd be nice to know why an SNRI works against pain. Then we could use that leverage.
I would love to know too. I know there is recent research which seems to point to antidepressants not working for pain. I’ve tried a few and they didn’t but venlafaxine does. I’d love to give it up but each time I try, the pain comes back and it’s incredibly wearing.
"rosacea"
Bingo. Mast cells involved.
Do you think so? Stuff I’ve read suggests it is caused by dermodex mites. I must admit, I am sceptical about this because antibiotics work and keep it at bay. I’d rather not take them but tooicsl treatments weren’t very effective and felt unpleasant. Quite honestly, I did not feel the doctors knew what caused it.
"antihistamine"
Bingo 2, mast cells.
I have wondered about this but I’m sure my GP would not test for this and, as I understand it, treatment is rare here too. I wouldn’t know what to ask for. They are probably fed up with me as it is.
"asthma"
Bingo 3, MCs.
Yes
"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 know the test. Good to know you use hypnosis too. I think it can do amazing things and it gives a totally different perspective.
"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 :) ]
Thank you for your kindness and encouragement. I am impressed with how much you’ve studied. I’m aware of some things because they have affected me and I’ve had to do research, but you help people with different conditions. I hope I haven’t taken up too much of your time. Your guidance is invaluable
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?
"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?
1 Comments
I sleep very well but have an erratic sleep pattern. It is not deliberate, just I get very tired all of a sudden and I’m a night owl
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?
- 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?
1 Comments
Thank you for the suggestions. Where exactly should I apply these? I think it is possible to buy some local anaesthetic creams for things like mouth ulcers? I’d have to find out. Might be different here as rules of what pharmacists can sell differ from US
"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.
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.
1 Comments
Thanks, Ken. Not sure what to make of autoimmunity. I’ve had blood tests for various reasons, including with a rheumatologist, so wouldn’t an autoimmune thing have shown up? I’ve seen my share of doctors and received disgnoses eventually but no treatment. GPs have tried various things and I take lansoprazole, venlafaxine (tiny dose of my choosing because of side effects), lymecycline for rosacea (another joy) and antihistamine for skin itching and ears sealing up. I also have an inhaler for coughing asthma.
Vitamin D within normal range, as is B12 and iron, though all on low side. I take supplements.
I don’t meditate but I am training to be a hypnotherapist (believe it or not!). Self hypnosis is not so easy. I felt that modern therapies, like CBT, could be good if with a good therapist but do not deal with the unconscious in the way that counselling does. I guess because I’ve found medical treatment has not resolved my pain problems and left me struggling, I wanted to do better for others. I have a science background so I am wary of the ‘promise anything’ type of hypnotists or New Age thinking that if you look after your mind and body you will magically stay well. I know this isn’t true as I’ve done most of the right things and yet have suffered a lot of health problems.
Thank you
Vitamin D within normal range, as is B12 and iron, though all on low side. I take supplements.
I don’t meditate but I am training to be a hypnotherapist (believe it or not!). Self hypnosis is not so easy. I felt that modern therapies, like CBT, could be good if with a good therapist but do not deal with the unconscious in the way that counselling does. I guess because I’ve found medical treatment has not resolved my pain problems and left me struggling, I wanted to do better for others. I have a science background so I am wary of the ‘promise anything’ type of hypnotists or New Age thinking that if you look after your mind and body you will magically stay well. I know this isn’t true as I’ve done most of the right things and yet have suffered a lot of health problems.
Thank you
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.
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.
2 Comments
Honestly, I can’t thank you enough for your help, Ken. This makes a lot of sense and fits my psin and discomfort. The trigeminal nerve may be involved too - I don’t know - I did have injections in the back of my neck by a local neurologist for the headaches, but they had no effect.
I get pain in the left temple and forehead and in and around my eye on that side. The eye often feels dry and, again, as if there is muscular tightening. I get constant tinnitus in the ear on that side but not on the other. It’s pretty miserable, to be honest, and I feel attacked by my own body.
Unfortunately, the Florida doc is too far away because I am in the U.K., but if I were nearer, I would def try to see him. I’ve told numerous doctors, dentists and ophthalmologists over the years about this pain and they have all looked at me blankly. I can see they are thinking anxious, neurotic woman over-exaggerating! Venlafaxine reduces the pain but does not make it go away. I will search to see if anyone one does the nerve blocks here. but so far cannot find a mention of Piper Syndrome in the U.K. health info and in the NHS info (though that doesn’t surprise me, they tend to be quite basic and patronising on their website).
Thank you for all your help and research. I believe you are a true healer!
I get pain in the left temple and forehead and in and around my eye on that side. The eye often feels dry and, again, as if there is muscular tightening. I get constant tinnitus in the ear on that side but not on the other. It’s pretty miserable, to be honest, and I feel attacked by my own body.
Unfortunately, the Florida doc is too far away because I am in the U.K., but if I were nearer, I would def try to see him. I’ve told numerous doctors, dentists and ophthalmologists over the years about this pain and they have all looked at me blankly. I can see they are thinking anxious, neurotic woman over-exaggerating! Venlafaxine reduces the pain but does not make it go away. I will search to see if anyone one does the nerve blocks here. but so far cannot find a mention of Piper Syndrome in the U.K. health info and in the NHS info (though that doesn’t surprise me, they tend to be quite basic and patronising on their website).
Thank you for all your help and research. I believe you are a true healer!
By the way, I get lots of sleep as I need a lot of sleep and it’s the only way I get away from the discomfort. I have ME and IBS. I try to eat ok and have vitamin and mineral supplements. I have tried a lot - special diets, allergy testing, endless blood tests, gastro tests - nothing seems to work except pain relief and venlafaxine. Thank you for asking.
I hope you are well yourself. It is so kind of you to help people on here
I hope you are well yourself. It is so kind of you to help people on here
"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.
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.
1 Comments
Wow, thank you, Ken! Her symptoms sound very similar but mine are less extreme. They are in the same place though. I had thought this must be a strange pain syndrome but had no idea that anything might help. I’ll certainly be considering the nerve block thing. The thought of not having this discomfort, pain and pulling is very appealing. I also get the cold sensitivity and extreme sensitivity to anything sweet. The pain goes up into my left temple and cheek too, similar to how she describes. The link was very revealing and it’s a great help to know this might be a kind of CRPS - it had occurred to me, but, like you say, most examples are in extremities after surgery or injury or something. Thank you for pointing me in this direction. It’s been a real eye-opener! I felt so alone with this
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.
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.
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.
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.
2 Comments
Maybe Prostaglandin D2 is also involved. Both hyper dilate blood vessels and make them hyper permeable.
aspirin and other NSAIDs are anti-PGD2
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.
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.
"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.
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..."
----------------
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.
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..."
----------------
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.
3 Comments
Quoting the above: "While the exact etiology of rosacea remains unknown"
You'll see that over and over with mystery immune conditions.
Let's look at something seemingly being completely unrelated, like Rosai Dorfman disease, which causes lymph nodes to enlarge so it might get initially mistaken for cancer. You'd find that "While the exact cause of Rosai Dorfman has yet to be discovered..."
Over and over, "the cause is not well understood". But they're all immune system related, and a synonym is inflammatory.
You'll see that over and over with mystery immune conditions.
Let's look at something seemingly being completely unrelated, like Rosai Dorfman disease, which causes lymph nodes to enlarge so it might get initially mistaken for cancer. You'd find that "While the exact cause of Rosai Dorfman has yet to be discovered..."
Over and over, "the cause is not well understood". But they're all immune system related, and a synonym is inflammatory.
Thank you for all your suggestions, Ken. I haf come across Mast Cell disorders myself but again didn’t know what I could do about it. The demodex mites theory of rosacea never made sense. I get bad flares of IBS too which would fit with Mast Cell problems. I am going to do what I can to minimise this.
I have taken the plunge and sent in a request to my doc for a referral for Piper Syndrome. They’ll prob laugh at me but if a nerve block worked, it would change my quality of life. Today, I ended up taking co-dydramol because it was particularly intrusive and wearing. I am very careful to only use it occasionally because it could be addictive. If it wasn’t for this, I would take it every day.
You don’t know how much difference your help has made. I hope you are ok yourself. If ever I can help you in any way, please do say. It’s kind of you to give up your time for others like this
I have taken the plunge and sent in a request to my doc for a referral for Piper Syndrome. They’ll prob laugh at me but if a nerve block worked, it would change my quality of life. Today, I ended up taking co-dydramol because it was particularly intrusive and wearing. I am very careful to only use it occasionally because it could be addictive. If it wasn’t for this, I would take it every day.
You don’t know how much difference your help has made. I hope you are ok yourself. If ever I can help you in any way, please do say. It’s kind of you to give up your time for others like this
With regard to antibiotics, I have also been concerned about taking them and the potential negative effects on the microbiome. They work for the rosacea. I had IBS, ME, Fibro and the facial pain problem for many years before taking the antibiotics, so I am confident they haven’t caused these problems. I’d rather not be taking them but I notice changes in my skin within about three days if I don’t. I cling to the few things that help
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".
- 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".
2 Comments
That above might relate to whether your bad auricular nerve is inflamed and that's why it misbehaves.
Interesting, thank you. I have been thinking some sort of inflammation somewhere, but obviously I can’t tell if it’s a brain thing
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
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
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