Tinnitus, TMJ, Headaches, Neck Pain, Facial Pain, etc. — Possible Treatment

[Mr. Cartman]

@chronicburn
@Sjtof

I think this explains very well why neck/cervical issues could cause serious ear pain, and mimic a lot of ear related symptoms like ETD, infections, ear pain etc. (Just a thought).

The spinal trigeminal nucleus (can be seen on the nerve chart a couple posts above) carries sensory information from CN: V (trigeminal), VII (facial), IX (glossopharyngeal) and X (vagus) and is located in the medulla, below the pons.

( Image source: Wikipedia )



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( Source: http://www.neuroanatomy.wisc.edu/virtualbrain/BrainStem/03CNV.html )

I am sorry to say that the spinal tract and spinal nucleus V are not exclusively associated with C.N. V. It is also associated with C.N.s VII (facial), IX (glossopharyngeal) and X (vagus). While this makes the story a little confusing, it also makes a lot of sense! The pain and temperature fibers associated with C.N. VII innervate the skin of the external ear, the wall of the external auditory meatus and the outer surface of the tympanic membrane (if it's OK with you, I'll lump these together as "EAR"). These fibers are the peripheral processes of cells that lie in the GENICULATE ganglion (located in the facial canal). The central processes of these neurons enter the brain with C.N. VII (at pontine levels, caudal to the trigeminal), travel in spinal tract V and end in spinal nucleus V. The pain and temperature information is then conveyed rostrally in the TTT (trigeminothalamic tract) to reach the VPM, from which it is relayed to somatosensory cortex (areas 3,1 and 2). Thus the pain and temperature fibers of C.N. VII don't have their "own" central cell group, but instead use that of the trigeminal.

 

[Mr. Cartman]

@chronicburn
@Sjtof
@applewine
@just1morething

I called the clinic that had the MRI done of my neck and upper back today, and they found quite a few things that were not good. Too narrow nerve canals, pinched nerves etc, and it was not just limited to the cervical disks, but also at Th1 level (it was Th1 they mostly pointed out), but also a few C disks as well.

Just thought I should let you guys know. I wasnt able to discuss it much in details with the clinic, but the report will be sent to my doc today and I will take it from there.

 

[Eric Fridley]

is T is jaw related would it decrease after eating? cause when ever i eat its pretty much exercising my jaw so everytime i eat it decreases my T

 

[Eric Fridley]

That one guy know as much about tomorrow as you and I do. Keep calm, keep watching this space. We may find out the cure for tinnitus is...Retigabine. Or AUT00063. In either case, the cure has already been found, just not thoroughly tested yet. Things DO get cured. Don't forget that. Polio and smallpox are both practically extinct, people take pills for ulcers, it's like we're livin' in the future, man!

It's tough to wait but many of us on this thread who have been reading the literature are convinced the hyperactive nerve theory is correct and we're just months from having clinical proof - or a sizable collection of anecdotal evidence, at least. Like you, I don't know what gave me tinnitus. I'm doing everything I can to fight it naturally - eating right, taking ALA (get on that if you're not already, I take 100mg morning and night), and going to a chiropractic specialist (atlas orthoganol helped, next week I start treatment with a SOTO) - and I'll be talking to a doc about Retigabine Tuesday. Other than that, what more can I do? Worrying does nothing but make things worse.

yea i have not even done anything tonight and my tinnitus is loud and all that does is piss me off and i start hitting my head its just causing me mad depression and its taking forever to get into a TMJ specialist cause they want ot take there time if that doesnt work i will beg my gp to get me some retigabine cause that worked for mbt and his is 5 month into tinnitus im about at 2month and 29 days so im thinking retigabine might work for me since it worked for him mine and his tinnitus is acute and most the people on this forum is taking it for chronic but not getting much results so im thinking retigabine works on acute tinnitus very well or even cure it so idk thinking of just asking him if he can let me try it instead of trying to get to a tmj specialist but my jaw is killing me also so i still wanna get into to get some MRI scans on my jaw but i really want to try retigabine cause it might help me as much as it did mbt i also emailed about am-101 again and told them i think mine was from ototoxcity cause it all started 3 days after taking oxycontin but the first time i emailed them i asked if i can join in the trials but i said my tinnitus is unknown and they said i cant join in cause of that but i emailed them again about the pills and how much acetaminophen i took i was taking that for 3-4 years so the oxycotin was prob the last straw but ill never know and they prob will still say no

 

[chronicburn]

@chronicburn
@Sjtof
@applewine
@just1morething

I called the clinic that had the MRI done of my neck and upper back today, and they found quite a few things that were not good. Too narrow nerve canals, pinched nerves etc, and it was not just limited to the cervical disks, but also at Th1 level (it was Th1 they mostly pointed out), but also a few C disks as well.

Just thought I should let you guys know. I wasnt able to discuss it much in details with the clinic, but the report will be sent to my doc today and I will take it from there.

Hello mate, i've been busy chilling in portugal and such lately so that's why i was away for a while, nice to hear you got the results, it is interesting that they found some nerve problems, wouldnt expect too narrow nerve canals also, and in the TH1, but good nonetheless, thats a leap forward .
Did they have any clue what was causing the pinched nerves, anything dislocated?
Mine have still to come through, hospital doesn't seem to see it as a matter of much importance i suppose...

Also props on the map, seems like you've been busy, that map gives a nice oversight! It all seems quite clear that those symptoms are very much linked by nerves indeed, i'm guessing those pinched nerves they found on your MRI are involved a great deal. Might be a part of the cause why extreme tension repeatedy builds up in corresponding muscles. Don't know what to make of narrow nerve canals though, would that result in numbness? blurry motoric movements perhaps?

also @applewine I remember you talking about cold/hot water sensations? I've had this too for some time i'f im right, it feels like drops of cold or hot water falling on you sort of speak right? It's a bit tingly, i've often mistaken it for drizzle rain in the past. Very much nerve related i'm sure.

 

[Sjtof]

@Mr. Cartman

Might sound stupid, but good to hear that they found something! Hopefully they can do something about it and resolve the issue.

I've got the mri on October 1st and this Wednesday I got the duplex thing. They gonna see if there is anything wrong with my blood vessels in my neck.

I'll keep you updated as well. Lately I haven't been online on this forum for too much, as I kind off feel better the last few weeks, but it's cuz I've set myself some goals again and I'm working /busy with school.

Well better in the sentence of not being annoyed or freaked out by the sound too much. Like I said before the neck issue is more of a problem sometimes than the sound. That doesn't mean that it's not loud or isn't there, actually it's quite loud, but I've sort of found the connection between the 2 so that gives me a little peace in my mind. The pattern I experience is that i wake up with less neck pain and a less sharper and louder sound, if i chose to play games I'll have to face the fact that my neck will start to hurt and get itchy etc and that it will result in a louder sound at night and more or less more annoyance of my neck when i try to fall a sleep, as it will be soar and start to spasm or hurt when i lay sideways with my head.

If not well the neck pain is more or less a bit less of an issue, mostly this also result in a less louder hiss.

So I'm excited for the MRI, but maybe I shouldn't put my hope on that. But I'm just curious as I just feel things are so messed up, especially in that left shoulder all the way up till my ear/behind my jaw.

Keep us updated though about the progress and further research they will do.

Cheers

 

[applewine]

@Mr. Cartman
@chronicburn
@Sjtof
@applewine
@just1morething

I think the MRI's are probably meaningless and just showing normal irregularities that everybody has in many cases. I think there are some kinds of things MRI's are showing real problems with the neck though.

 

[Mr. Cartman]

Hello mate, i've been busy chilling in portugal and such lately so that's why i was away for a while, nice to hear you got the results, it is interesting that they found some nerve problems, wouldnt expect too narrow nerve canals also, and in the TH1, but good nonetheless, thats a leap forward .
Did they have any clue what was causing the pinched nerves, anything dislocated?
Mine have still to come through, hospital doesn't seem to see it as a matter of much importance i suppose...

Also props on the map, seems like you've been busy, that map gives a nice oversight! It all seems quite clear that those symptoms are very much linked by nerves indeed, i'm guessing those pinched nerves they found on your MRI are involved a great deal. Might be a part of the cause why extreme tension repeatedy builds up in corresponding muscles. Don't know what to make of narrow nerve canals though, would that result in numbness? blurry motoric movements perhaps?

also @applewine I remember you talking about cold/hot water sensations? I've had this too for some time i'f im right, it feels like drops of cold or hot water falling on you sort of speak right? It's a bit tingly, i've often mistaken it for drizzle rain in the past. Very much nerve related i'm sure.

Welcome back dude!

I havent talked to my doc yet, but I will next week. I do have a feeling that the pinched nerve down in the Th1 area is not the cause of all this though, but who knows.. (as all four of us got this spot between our shoulder blades).

I look forward to hear about your MRI results as well, and hopefully they included the Th1 area

Hope you had a nice trip to portugal!

 

[chronicburn]

Welcome back dude!

I havent talked to my doc yet, but I will next week. I do have a feeling that the pinched nerve down in the Th1 area is not the cause of all this though, but who knows.. (as all four of us got this spot between our shoulder blades).

I look forward to hear about your MRI results as well, and hopefully they included the Th1 area

Hope you had a nice trip to portugal!

Will be interesting for sure keep me updated if you can .
Still haven't got back the results for the MRI but according to the hospital should be within 10days max.
Yeah i hope they included that area too, would be interesting to see similarities.

Portugal was nice btw, very relaxing atmosphere, very friendly people over there, very good to distract from the T also. .
Speaking of that my T's being doing weird, last few days it was very quiet, and today it was non existant, except for a faint wooshing sound that i could only hear when plugging my ears Also something weird kept happening to my ET or eardrum on both sides, i've always been able to create a snapping noise and feeling when yawning, turning my neck and such, probably the ET's opening and closing, i think you can also feel that in your eardrum, because the pressures changing inside the little "vacuum" in the middle ear, anyways, all day long today the same thing kept happening, but without me yawning or such, i don't know what was exactly happening but i think the eardrum or the inner end of the ET was spasming, it at least felt like that, because i could feel pressure being exercised on my eardrum, like something itchy is poking it, it happened like 50times or such, i've never experienced this before, as i said i only had this before when yawning and such, and also without the pressure feeling on the eardrum, i don't know how i triggered it, except for i've been doing some DIY construction work the last few days so i was "physically exercising". I'm sure there is some kind of relationship though, as this was the first time my T has been non-existent for hours, i'm also quite convinced that the stapedius muscle you've frequently mentioned before, is somehow involved in those "spasms", i would see no other way how something would influence or contact the eardrum directly.

Anyways now it's acting up again though, should ditch my laptop, it's clearly not good for me.

 

[applewine]

I tried to locate a map of how the the nerves are connected regarding the ear and the muscles that seems to affect my T, but couldnt really find any so I made one. Ill share it in hope that someone will find it interesting. Its not complete but at least its what I was able to put together based on information I found on Wikipedia. Its probably not 100% accurate as well (yet)

@chronicburn
@Sjtof

View attachment 3207

I didn't even see this before. I'm wondering how much of this you made. It sounds impressive.

 

[Mr. Cartman]

Will be interesting for sure keep me updated if you can .
Still haven't got back the results for the MRI but according to the hospital should be within 10days max.
Yeah i hope they included that area too, would be interesting to see similarities.

Portugal was nice btw, very relaxing atmosphere, very friendly people over there, very good to distract from the T also. .
Speaking of that my T's being doing weird, last few days it was very quiet, and today it was non existant, except for a faint wooshing sound that i could only hear when plugging my ears Also something weird kept happening to my ET or eardrum on both sides, i've always been able to create a snapping noise and feeling when yawning, turning my neck and such, probably the ET's opening and closing, i think you can also feel that in your eardrum, because the pressures changing inside the little "vacuum" in the middle ear, anyways, all day long today the same thing kept happening, but without me yawning or such, i don't know what was exactly happening but i think the eardrum or the inner end of the ET was spasming, it at least felt like that, because i could feel pressure being exercised on my eardrum, like something itchy is poking it, it happened like 50times or such, i've never experienced this before, as i said i only had this before when yawning and such, and also without the pressure feeling on the eardrum, i don't know how i triggered it, except for i've been doing some DIY construction work the last few days so i was "physically exercising". I'm sure there is some kind of relationship though, as this was the first time my T has been non-existent for hours, i'm also quite convinced that the stapedius muscle you've frequently mentioned before, is somehow involved in those "spasms", i would see no other way how something would influence or contact the eardrum directly.

Anyways now it's acting up again though, should ditch my laptop, it's clearly not good for me.

Heey!!

Portugal sounds very nice! Ive been there once myself, but only as a kid, and I dont remember much of it
I can relate to all the stuff you are talking about though, and I have the same thing going on when Im sitting in front of my computer.. It all acts up.. And its really annoying.

I actually had to (hopefully temporarily) quit my job as a programmer, because it was impossible to stare at a monitor all day long. It even triggered bad tension headaches or what the hell this sh*t is.. As soon as Im concentrating tinnitus acts up bad and the pressure thing around my nose and some kind of tension headaches and pressure around and inside my ears flares up. But when Im doing construction work it all goes away.. Even the tinnitus.. I left construction work years ago in order to do what I enjoyed, which was programming. Now its impossible to even spend a few hours in front of the computer without serious pain.

It seems like the tension automatically builds up when concentrating or staring at something, like a computer monitor, or driving a car!?

Have you guys had your vision checked as well?

Whatever this is, it has to be related to either neck, shoulders, head or eyes!?

Two days ago something funny happened as well, I got a massive big black eye floater while watching TV that went away after a split second, but at the exact moment in time a massive muscle spasm in my ear took place as well (at the same (ipsilateral) side). Later that night, this weird ear pressure feeling went away and my ears felt normal. But it returned the next day.

Could it be related to some muscles being tensed up when we are staring or concentrating, like the frontalis etc..?

At least Im going to have my vision checked, because theres something bogus going on here..!

Im not sure about the english term for it, but I think its "stereopsis" (binocular vision) that I will particulary have tested regarding the eyes.

Its nice to hear that your T has been low though! Mine was too, until I started focusing on this damn computer monitor again

Do you also have kind of tender spots in the top of your head and at the sphenoid / temporal area?

I talked to a doctor a few days ago about my MRI, but they couldnt figure out any obvious link regarding the MRI findings down in my neck / back and the stuff going on. They didnt think it was related. Im up for abother MRI next week I believe.

@Sjtof
@applewine

 

[Mr. Cartman]

I didn't even see this before. I'm wondering how much of this you made. It sounds impressive.

I did some wiki reading about muscles and nerve innervation and drew a simplified map of

Have you had your vision checked btw? Just curious.. Ive added some weird stuff in the post above this one

 

[Mr. Cartman]

@Mr. Cartman

Might sound stupid, but good to hear that they found something! Hopefully they can do something about it and resolve the issue.

I've got the mri on October 1st and this Wednesday I got the duplex thing. They gonna see if there is anything wrong with my blood vessels in my neck.

I'll keep you updated as well. Lately I haven't been online on this forum for too much, as I kind off feel better the last few weeks, but it's cuz I've set myself some goals again and I'm working /busy with school.

Well better in the sentence of not being annoyed or freaked out by the sound too much. Like I said before the neck issue is more of a problem sometimes than the sound. That doesn't mean that it's not loud or isn't there, actually it's quite loud, but I've sort of found the connection between the 2 so that gives me a little peace in my mind. The pattern I experience is that i wake up with less neck pain and a less sharper and louder sound, if i chose to play games I'll have to face the fact that my neck will start to hurt and get itchy etc and that it will result in a louder sound at night and more or less more annoyance of my neck when i try to fall a sleep, as it will be soar and start to spasm or hurt when i lay sideways with my head.

If not well the neck pain is more or less a bit less of an issue, mostly this also result in a less louder hiss.

So I'm excited for the MRI, but maybe I shouldn't put my hope on that. But I'm just curious as I just feel things are so messed up, especially in that left shoulder all the way up till my ear/behind my jaw.

Keep us updated though about the progress and further research they will do.

Cheers

Hi!

Im interested to hear about their findings (if any).
Ill keep you updated as well. The thing is, that computer games, programming etc.. It all aggravates it for me.. No matter what my posture is.. Im kinda curious if its something that happens when Im staring or concentrating on something.. Like muscles being tensed up around my head, neck and shoulders or something.. I have no idea though.. But it sure feels like it..

Ive read that vision problems can create a host of symptoms as well, so I figured Ill have it tested as well

 

[Sound Wave]

This is interesting, since we know TENS can suppress T for some patients when applied to C2 region in the neck (De Ridder & co study). Now with this new Philips smart phone connected TENS device, one could suppress T 'on the go'.

http://www.engadget.com/2014/09/17/philips-app-controlled-pain-reliever/

 

[Mr. Cartman]

This is interesting, since we know TENS can suppress T for some patients when applied to C2 region in the neck (De Ridder & co study). Now with this new Philips smart phone connected TENS device, one could suppress T 'on the go'.

http://www.engadget.com/2014/09/17/philips-app-controlled-pain-reliever/

Have you ever tried TENS on the C2 region yourself? I have a TENS device myself, but its not working.. Maybe Ill have to order another one Im also trying out some meds at the moment to see if anything helps. Ill probably try out retigabine as well

 

[applewine]

The floater thing is strange. I have had floaters ever since college, maybe a few years before neck pain started. Mine aren't large blobs though. What you describe sounds like something I remember my grandmother describing many years ago and I think they did something for it. I don't think it was a regular black floater. She described it as large ink thing. You should see an ophthalmologist immediately if it keeps happening or you are sure it happening. Somehow I'm hoping it was a fluke and maybe it was nothing, but I don't fully understand what you experienced.

I've mentioned before that for me my vision shakes when I look at things up close. That will make the text jump back and forth on the page. This was one of my earliest symptoms that started when I just had chronic neck pain.

Many searches for vision shaking a trigger points will mention neck muscles causing the eye muscles to not operate correctly causing the words to jump on the page. This may be what I have. I think they mention the sternal SCM, but for me mine seem fine as far as I can tell.

I just scheduled an appointment with a physical therapist who actually does hands on mannual trigger point therapy! My orofacial pain specialist refered me to her and I finally looked her up and made an appointment. She says she uses the John F. Barnes approach listed here: https://www.myofascialrelease.com/ Barns' website lists other who practice his methods. Many are only massage therapists and not physical therapists.

All things being equal I'd rather go to a physical therapist because I could potential have medical services pay for a portion of it, but if a massage therapist does the therapy medical will pay for nothing. Whatever this is this is not a spa holiday for me, I have a condition that needs real medical treatment and medical services should pay for it if there is a valid treatment.

 

[Sound Wave]

I have a TENS machine and I have tried it a couple of times with no effect. Then again, I am not sure if I have placed the electrodes correctly...

 

[Mr. Cartman]

The floater thing is strange. I have had floaters ever since college, maybe a few years before neck pain started. Mine aren't large blobs though. What you describe sounds like something I remember my grandmother describing many years ago and I think they did something for it. I don't think it was a regular black floater. She described it as large ink thing. You should see an ophthalmologist immediately if it keeps happening or you are sure it happening. Somehow I'm hoping it was a fluke and maybe it was nothing, but I don't fully understand what you experienced.

I've mentioned before that for me my vision shakes when I look at things up close. That will make the text jump back and forth on the page. This was one of my earliest symptoms that started when I just had chronic neck pain.

Many searches for vision shaking a trigger points will mention neck muscles causing the eye muscles to not operate correctly causing the words to jump on the page. This may be what I have. I think they mention the sternal SCM, but for me mine seem fine as far as I can tell.

I just scheduled an appointment with a physical therapist who actually does hands on mannual trigger point therapy! My orofacial pain specialist refered me to her and I finally looked her up and made an appointment. She says she uses the John F. Barnes approach listed here: https://www.myofascialrelease.com/ Barns' website lists other who practice his methods. Many are only massage therapists and not physical therapists.

All things being equal I'd rather go to a physical therapist because I could potential have medical services pay for a portion of it, but if a massage therapist does the therapy medical will pay for nothing. Whatever this is this is not a spa holiday for me, I have a condition that needs real medical treatment and medical services should pay for it if there is a valid treatment.

It was indeed something that could remind of a large ink thing.. Ive never had this happening before..
Im definitely going to have my vision checked out, however I dont think my vision is causing tingling sensations in my arms and legs, muscle spasms etc.. That wouldnt make much sense to me, but I do believe the vision stuff is a part of it all.. Especially the "regular" black eyefloaters I have had, but I dont have much of them now days, maybe some intermittent ones now and then..

If it was a pinched nerve somewhere, I dont see how that could produce all this stuff though, as it doesnt make much sense regarding nerve pathways, unless there is something central involved.

Yeah, I think a skilled physical therapist could be the thing as well, and especially if your insurance will cover some of it..
I did something funny though.. I bought a kung-fu massage device.. It literally hammers the muscles in my neck and shoulders in a kind of brutal way It actually works, as it really feels like it does a good job at loosening up those muscles and its definitely something I will use on a regular basis..

Hopefully manual therapy will do something for you.. Kinda curious about your results..!

 

[Mr. Cartman]

I have a TENS machine and I have tried it a couple of times with no effect. Then again, I am not sure if I have placed the electrodes correctly...

I actually did try the TENS device in my neck for a little while, but had no effect for me either.. I find it very funny that the ultrasound device is conducting a weird buzz sound from the top of my back and directly into my ear though

Do you occasionally experience somewhat of a pressure change in your ear? Like the eardrum is slightly being stretched for a little while etc.?

The kung-fu massage device is really working though.. But only temporarily.. Its great while watching TV and such

 

[Sound Wave]

^ Yes I do. Fulness in the ear seems to correlate with increased T. After the (very hot) July and summer vacation my T increased and that spike lasted some ~3 weeks. During my four weeks summer vacation I didn't see my PT at all. When I did after the vacation, she found a lot of tension in the usual spots in my neck and released them + massaged my SCM and the muscle below it. Oh boy that hurt + the T spiked even higher for a couple of days. So... I wonder what caused the spike. It could have been neck muscles and a lot of golf I played. Or it could have been the hot weather which affected my whole body's water balance and thus also the inner ear -> cochlear hydrops, which an experienced ENT recently proposed as one potential cause for my T. Oh the mysteries of T...

 

[Mr. Cartman]

^ Yes I do. Fulness in the ear seems to correlate with increased T. After the (very hot) July and summer vacation my T increased and that spike lasted some ~3 weeks. During my four weeks summer vacation I didn't see my PT at all. When I did after the vacation, she found a lot of tension in the usual spots in my neck and released them + massaged my SCM and the muscle below it. Oh boy that hurt + the T spiked even higher for a couple of days. So... I wonder what caused the spike. It could have been neck muscles and a lot of golf I played. Or it could have been the hot weather which affected my whole body's water balance and thus also the inner ear -> cochlear hydrops, which an experienced ENT recently proposed as one potential cause for my T. Oh the mysteries of T...

Its interesting that it especially happened during the hot weather, because the same happened to me a lot while sunbathing.. I did notice that the warm weather did trigger those "spikes" a lot

Cochlear hydrops? Im sure there is a possibility, but I think we can see 10 doctors and have 10 different diagnosis..

I have experienced short lived T a lot in the past, but either from long car drives or sitting too much in front of my computer.. Not sure if we have the exact same thing though, but I dont see how I would end up with cochlear hydrops every time I did that which spontaniously healed afterwards.. But who know The mysterious T indeed..

Btw.. The spike stuff you are talking about.. Those always took my T away in the past, so each time I get them Im like YES, is this the one.. Is this the one..

My SCM hurts bad as well on palpation.. It feels like my neck and jaw is not doing very well.. Im scheduled up at an osteopath next week, just for the curiosity

I started to pay very close attention to the muscles Im tensing in my face, head, neck and shoulders while sitting in front of my computer and while driving my car and I found it pretty insane.. Its like the brain has memorized this pattern very well.. And when I dont pay attention to it, they start tensing up again.. Cant be good

At least the kung-fu massage device is seriously nice for the neck and the shoulders.. I even hammered my head a littlebit with it

After I started retraining my neck in every possible way, almost 100% of the jaw tension has went away though..

 

[applewine]

^ Yes I do. Fulness in the ear seems to correlate with increased T. After the (very hot) July and summer vacation my T increased and that spike lasted some ~3 weeks. During my four weeks summer vacation I didn't see my PT at all. When I did after the vacation, she found a lot of tension in the usual spots in my neck and released them + massaged my SCM and the muscle below it. Oh boy that hurt + the T spiked even higher for a couple of days. So... I wonder what caused the spike. It could have been neck muscles and a lot of golf I played. Or it could have been the hot weather which affected my whole body's water balance and thus also the inner ear -> cochlear hydrops, which an experienced ENT recently proposed as one potential cause for my T. Oh the mysteries of T...

An ENT proposed the hydrops thing for me many years ago. I think it is a an unproven or unverifiable thing. They only thing they do is go in there with surgery and try to patch it up, but I highly recommend NOT doing that. Some will do it, but most likely most doctors will not even want to suggest that. You do not want people doing surgery on you which could cause damage for a condition you don't even have in the first place. Also sometimes even if you have a condition surgery can make it worse, but I doubt any of us have those kinds of conditions that would need surgery, but I've read stories of people who got worse with ear surgeries that cause severe disabilities. I just want to caution you to stay away from any of that stuff.

 

[Sound Wave]

^ agree, definetly no surgery for me! It seems some Meniere drugs can help with hydrops, as well as strict no-salt diet. But as I said, this was just a speculation from the ENT and I'm definetly not diagnosed yet with hydrops.

 

[Mr. Cartman]

@Sound Wave

Did you ever have your neck evaluated by an osteopath, chiro etc?

Just curious..

 

[applewine]

With Menieres you are supposed to have dizzy problems and stuff related. I had that early on and one ENT told me about the salt thing and just said I could/should do that and I actually was for a while. I've heard of many people treating the muscles for people diagnosed with Menieres. Menieres may be misdiagnosed when there is a muscle problem instead or not even exist.

I would ask if you have had any dizziness attacks and also suggest you likely don't have menieres and the low sodium diet will do nothing. I was very scared for a long time to avoid sodium when the ENT told me that. The dizzy attacks were extremely painful and the nausea and other hard to describe discomfort that went with it made my have to go to emergency hospital. I only had dizzy problems the first few months when the T started. I haven't had any dizzy or painful nausea etc. for about 6 years. The T is still there, along with the face numbness, pain. I also have the water and burning sensations all over the body which are brief.

You guys may want to find some physical therapists who will do myofascial release. I searched for a long time and couldn't find any, but maybe I was searching the wrong way. There is no universal directly for people licensed in a state listing their services. I guess I could get a list of every PT in the state somehow and just start calling every one.

I found a PT who is supposed to do it so I'll see her. I'll see what it is like and maybe go to some others that do it too. I found a website that PT's pay to list their named and trained in myofascial release. Mine wasn't on that website though. The DDS orofacial pain specialist I was referred to gave me the PT's information.

 

[Sound Wave]

Did you ever have your neck evaluated by an osteopath, chiro etc?

Yes, all three - PT, Ch and Os. I had / have issues in the left C2 area in my neck on the same side where the T is. I have been visiting a PT every 1-2 weeks since March and she has been able to release tensions etc and help a lot. I also have pain in the upper back on the left side, which is connected to the upper left neck. When the upper left back hurts, it helps if I massage the left side of the neck. The PT can release this pain as well, but it seems to come back. In the beginning I did a lot of neck / shoulder strecthes which helped with both neck and upper back issues but then I stopped them. Now I may need to continue them.

 

[Sjtof]

Hi guys,

I was wondering if you ever experience itchiness in the neck? Not sure if someone mentioned it already.

But I'm currently having a bad time again. I mean I hear the whooshing /rustling sound continuesly and it's quite loud. But besides that I experience a lot pain in the shoulder neck and this is also starts to itch quite badly all the way up till below my ear. Then I can feel the tingling going through my jaw from the point below my ear.

And the weird thing is that if the tingling feels like it's going on the heartbeat, then the T may also sound like that.

Next to this, I struggle again with falling a sleep, not because of the annoyance of the sound, but mostly because I can't position myself correctly. Because if I turn my head to the right, it feels like there is a stretch on the left side of the neck,and when laying in that position, it feels like the T increases in loudness. Then again if I do some massages in my neck, the volume decreases again. On the other side same story. The T may also barely noticble in the right ear, but laying with my head sideways, causes tension to build up below the ear and then the muscle below the ear starts to spasm and the T increases in that ear. Then massaging stuff may decrease it again. And that's why I struggle falling a sleep, not particularly because of the sound itself, but also because the neck is so damn annoying and this causes that the sound I hear is not the same, it fluctuates by the second, without a pattern.

Then again, when waking up the sound dropped in volume because i got the idea that resting helps to pull the tension of the muscles behind my ear. Then again I read somewhere hat this may be the cause, because of our hearing not working properly when waking up, causing the T to be lower in volume. But I'm not sure what to believe of that and it makes me insecure again.


I always said it was a neck issue, also cause I got the neck pain together with the T, then again sometimes I feel. Misarable again about it, and the loudness and fluctuations s of the T are just insane.

Sorry but i just had to speak about my issues again, currently home alone for a week and it makes me feel sad from time to time, also because doing what I love most, playing games, doesn't seem to be a good idea, as it worsens neck issues, but then again it makes my mind get off the T. But doing it this way, feels more like it's a forced way of not paying attention to it. Can't imagine playing games for the rest of my life haha.


Still gotta wait for the mri thought on 1st October, but i think it won't show anything. Anyways, thanks for reading.

Cheers

 

[Mr. Cartman]

Yes, all three - PT, Ch and Os. I had / have issues in the left C2 area in my neck on the same side where the T is. I have been visiting a PT every 1-2 weeks since March and she has been able to release tensions etc and help a lot. I also have pain in the upper back on the left side, which is connected to the upper left neck. When the upper left back hurts, it helps if I massage the left side of the neck. The PT can release this pain as well, but it seems to come back. In the beginning I did a lot of neck / shoulder strecthes which helped with both neck and upper back issues but then I stopped them. Now I may need to continue them.

Did you have any MRI done of your neck and upper back yet?
Also, the pain you are talking about in your upper back, would that refer to the C7/T1 area (where the thoracic disks joins the cervical disks, pretty much between your shoulder blades)?

My MRI did show narrowing of spacing between C5/C6 and C6/C7 invertebral foramen and -possibly- a pinched C7 nerve root right side. That would be the nerve root that exits between C6 and C7.

Whats kind of weird though is that if I lift my right arm in a horizontal position and force it backwards towards this painful spot in my C7/T1 area, I get some weird vibrations in my left upper lip.
According to doctors that shouldnt be possible, but it happens every time I do it.

Im seriously considering surgery to release this C7 nerve root though, at least that would rule out one more thing,
but Im curious if anyone else has had some of the same MRI findings, like yourself..

My previous physio and chiro kept nagging about C1 and C2 as well, but Im not 100% convinced that those are the culprit but it would make sense. However to my understanding, the cervical dermatomes second to nerve root compression can cause a host of symptoms..

It could be the SCM as well, as @Sjtof pointed out from the beginning.
When I got this stuff, I know for sure that my SCM took a serious beating. In addition to that, my left SCM hurts from time to time, but so does my neck @ C2 area and C7, T1 area..

I did a nasty stretch of my neck which I figured might add some space between my C5/C6 and C6/C7 invertebral foramen, and when I did it, the sound reminded me of bones grinding bones in that exact area and I ended up in excruciating pain for a couple of days.. Today the pain and tinnitus is pretty much gone.. Yesterday it was pretty bad.. Hard to wrap the head around this.. Ill see how it progresses..

I agree with what @applewine stated in his post above.

I added some images for illustration.

 

[Sound Wave]

No MRI yet. I will have one for the ear soon though. I think my spot is below the shoulder blades. Quite a typical sore spot people have according to my PT. SCM is a 'usual suspect' for sure at least for me. When I recently had my ~3 weeks T spike, I think the SCM was 'thicker' and more tense as it was in the beginning with T. Also when I pinched it, I got radiating pain on top of my head every time.

 

[applewine]

@Mr. Cartman I am very skeptical of back surgery. I've heard that it isn't actually proven to do anything in many cases and it can actually be a placebo since it doesn't fix the problem in many (most?) people. Normal deviations may be present in scans which are not pathological. I have doubts that you really have any problem there. Also, if there is a myofascial restriction those muscles may be pulling on the vertebrae causing the pinching or whatever anyway if it is, so cutting muscles or fusing this bone to that or whatever they do in surgery seems to make no sense. I've looked at the upper cervical muscles and how they attached to the atlas for example. You could see if any of the PT's in your area do myofascial release and ask who they were trained by and what level of training. The closet PT I could find near you is Amanda Oswald in the UK. http://www.paincareclinic.co.uk/ She is listed as advanced, but not expert.
There could be others who haven't paid to have themselves listed in the directory: https://www.myofascialrelease.com/

The problem for me was that none of the PT's I could find were doing myofascial release and the only ones who were experts in trigger points and practicing that were doing dry needling. I thought dry needling was the best for a while, but after trying it I think not. I had also been to a massage therapist who specialized in trigger points and she did not seem to help or think she could help. Perhaps the PT's who specialize in myofascial release will be better.