Looking for Doctor in Massachusetts Experienced in Pulsatile Tinnitus

[ChrisM]

Hi all,

I hope everyone is hanging in there well enough with this distressing condition.

My issue is what I believe is continuous "somatosensory" pulsatile tinnitus, 90% of which is in my left ear that started March 2018.

I believe this PT is related to neck, head and jaw muscular tension, because the sound changes as I move my head and based on the reports below. For example, the tinnitus is worse when I turn head to left or right, yawn, chew, push head down. It is quieter when I tilt my head down, pull in my chin, clench my jaw or lean on my chin. Sometimes it even gets almost quiet, more commonly in the evening. Here are a couple of reports about this type of tinnitus for anyone interested:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3129953/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4134893/

I have been to 2 ENT's who did not see any ear problems, checked my hearing which is fine and did a CT scan which came out normal. I am reluctant to get an MRI with contrast now considering there is some questions about the safety of contrast material, and also because the PT seems so much to be related to muscular issues.

Does anyone know of a doctor in Massachusetts or near Massachusetts who is experienced in this type of "somatosensory", ie. muscular related pulsatile tinnitus?

thank you very much

Chris

 

[melbournejeremy]

Hello Chris,

You have pretty much described my problem too.

Does yours have a high pitched pulsatile sound too?

Have you noticed that if you push in around your temple and in front of your ear area where the trigeminal nerve root is that you can make the noise louder? I have also noticed that my PT becomes near zero when this area does not respond to pressure from my finger. It really makes me think this issue is nerve hyperactivity for whatever reason.

I also seem to be able to suppress it by clenching my rear teeth somehow and pushing jaw inwards.

Mine also varies a lot throughout the day and coffee/gym seems to make it worse. I am not sure if that is from all the facial muscles and neck muscles straining or if it is from blood pressure or a combination.

I have had this problem for a year it's been pretty distressing. Hearing your pulse in some form seems to be incredibly distracting.

Jeremy.

 

[ChrisM]

Hi Jeremy,

Yes, definitely high pitched and also affected by pushing on my temple and round my ear, and also by pulling my head back, and looking down it gets almost quiet.

Did it just start up for you out of the blue? I had a bad earache one day and mild ear infection and it seemed to start then.

Yes it is quite maddening sometimes, especially when I feel stressed, or when trying to find anyone helpful in the medical profession who has any knowledge about tinnitus in general, but specifically with this somatosensory type.

I contacted Dr Robert Levine who has written a lot about this type of tinnitus, and his suggestion was to see a neurologist here that could do dry needling. It seems worth a try, but of course the next available appointment with this doctor is April.

I am also currently trying accupressure (not acupuncture) to try and release tension in the neck/head/jaw muscles. Still not sure if that is helping.

I wonder, have you seen anything written that this condition sometimes clears up on its own? I hate to think of spending the rest of my life with this incessant buzzing.

hang in there!

Chris

 

[just1morething]

Maybe try some diazepam plus gabapentin and use oral appliance if you have one.

 

[melbournejeremy]

Hi,

I just woke up with Tinnitus and it quickly morphed into this high pitched PT.

That is funny you contacted Levine. I tracked the poor guy down too, in Israel and had a phone call with him out of desperation. I couldn't understand a lot of what he said through the accent. But he was nice enough to suggest the same thing. I guess he fields calls from a few desperate Somatic PT victims. The price you pay for publishing scientific articles!

I think the conclusion is that it is hit and miss to find the nerve or where the signal is coming from that is causing the brain to interpret it as sound. My conclusion about 'our' cases is after reading countless articles and getting a feel for basic anatomy is that V3 Mandibular nerve that plugs into trigiminal ganglion in front of the ear is generating the signal from one of the nerve bundles for whatever reason. Most likely there is some hearing loss, even if it is not significant and it is most likely above 8khz, 12-14khz range which is not normally tested. The lost auditory input results in a gain increase at those frequencies and through neuro-plasticity you end up picking up some other nerve activity for example V3 (TMJ movement / neck movement - which is actually your jaw moving with the head movement but is frequently described as head/neck movement - you can test this by rotating your head making T louder and then pushing on your chin to see if the noise subsides).

My feeling is at the time of the development of the tinnitus your brain finds a signal of pain for example and latches on to that. For example if you had a bad tooth or an inflamed TMJ, even if the threshold of the pain was too low to bother with it is diverted at the DCN and ends up as this PT sound. Even once the pain has cleared the neuronal connection is still there and you can then modulate the PT with movements etc.

So back to the dry needling and all the other techniques, if you get lucky and a needle hits the irritated nerve and causes some inflammatory response which heals the problem perhaps you end up with resolution.

I guess that is why some people have success with alternative therapy because through luck they hit the right point that is generating the aberrant signal and it resolves over time.

I think neuroscience has proven that if a nerve connection or neuronal pathway is not used anymore the pathway becomes weaker and less responsive.

So through my crappy message. If somehow you find where the signal is generated from. Resolve it. Somatic PT may vanish!

Jeremy.

 

[Greg Sacramento]

I have several links in my more recent history on the V3 mandibular nerve and the trigeminal ganglion. Tinnitus starts from trauma of the sensory root of the mandibular nerve. This emerges from the lateral part of the trigeminal ganglion, while the smaller motor root passes below the trigeminal ganglion.

Both of the roots exit the cranial cavity through the foramen ovale and reach the infratemporal fossa, and both unite just outside of the skull. Then the mandibular nerve passes between the tensor veli palatini and lateral pterygoid muscles. The meningeal branch and the medial pterygoid muscle supplies motor innervation to the medial pterygoid. This sensory travels to the tensor tympani and to the tensor veli palatini muscles. The mandibular nerve then divides into a small anterior and larger posterior trunk. The anterior portion of the nerve gives off motor branches to the four muscles of mastication and a sensory branch to the cheek and temporal and the buccal nerve. The posterior trunk of the mandibular nerve gives off motor fibers to supply the mylohyoid muscle and the anterior belly of the digastric muscle, and three main sensory branches: the auriculotemporal, lingual, and inferior alveolar nerves. PT beyond somatic T, can start a year or more later. Oral infection and salvia gland trauma can develop.

From the first onset of T, usually somatic, dental trauma needs to be considered. Most likely there's cervical canal stenosis as well. C1 and C2 along with the occipital nerve and fibers. 94% of cranial nerves enter the brainstem.

 

[ChrisM]

Hi Jeremy,

Yeah, poor Dr. Levine, he did try to be helpful. I noticed he does not provide his number on his website, maybe too many calls from stressed out PT'ers!

The PT definitely gets much louder when I turn my head to either side and much quieter if I lean on my chin. So if that implicates the V3 Mandibular nerve, it seems like I have that.

This whole thing started after waking up with an awful earache in the ear that has 90% of the PT. I wonder if that might be a pain source you mention possibly causing the nerve to be overacting.

It sounds like you never had a pain though to kick off your PT.

Have you tried any dry needling? Has your PT gotten any calmer in the year since it started?

Have you heard of this condition just eventually going away on its own?

I am also curious if you had an MRI with contrast to see if any vascular/brain issue showed up? I am concerned about doing that considering the controversy about the Gadolinium contrast agents. Here is some info about that:

https://www.chemistryworld.com/feature/new-mri-contrast-agents/1017395.article

I did write to Dean Sherry quoted in that article who said it depends on which contrast agent, but I am still concerned.

thanks

Chris

 

[ChrisM]

Hi Greg,

It sounds like you should become a doctor for this condition!

Have you found anything that has given you some relief from your PT in all these years?

 

[melbournejeremy]

Hello Chris,

I have not seen any improvement in my case. I had a non contrast MRI and it showed nothing abnormal. My understanding is you can avoid contrast agents in most newer MRI machines for general head scans because they have better resolution, 3-T+. I decided to go back for an MRA just because I loitered on this site and scared the shit out of myself. I didn't have contrast for that scan. I requested no contrast for both of those scans.

For specific scans like MRV which shows venous flow you can't really avoid contrast because the deoxygenated blood does not have the same imaging properties needed to generate an image in the machine. I have not had the MRV scan. For diagnostic purposes with PT the recommended protocol is MR-head / MRA head / MRV head, some people add neck to that scan sequence but it just depends on what they will allow. Neck is considered an additional sequence set in most imaging clinics. At least it is here. Some people add a head CT to check for bone loss that can cause a specific type of PT where the cochlear picks up the pulse of a nearby artery. I think it is called superior canal dehiscence, but don't quote me on it. The amazing scan for an incredibly detailed 3-d view of the vessels is called a 4D-CTA but it involves more radiation than a normal CT-A. The CT-A involves a CT machine and dye injected while it follows the flow of the dye throughout the brain etc. Most radiologists will be happy enough with the MR set and if something weird is seen then more imaging types could be done.

I think there are 2 types of commonly used contrast in MR. One has some sort of additional molecules added to gadolinium that surround the compound and then help excrete it via chelation process. I guess I am of the opinion that more evidence is coming out about residual gadolinium residing in brain tissue and other organs. But so many gadolinium contrasts are done the risk/benefit is probably justified.

I suppose because the sound can be modulated and suppressed with jaw movements it would be hard to imagine there is a vascular issue inside the head since how could those movements reach veins and arteries inside the skull. Having said that there are a lot of vessels and nerves in the TMJ area and it is a pretty tight space.

I tried dry-needling twice. Did nothing for me.

Lately I have been using 2mg of prescription melotonin before bed. I am dubious of health food store melotonin because it is not regulated and the manufacturers can write anything on a label, at least that is the case here in Australia. I think melotonin is very underrated and has many more biological effects than just getting you to sleep. I am not sure if it is my imagination but I seem to notice the T and PT is less intrusive after using it.

I also have some diazapam which I notice greatly reduces the noise for an hour or two. It is a short acting benzo so it's pretty temporary. The fact that it works at all, at least in my mind, indicates it is a nerve signalling issue because benzos and gaba-a pathway reduces activity. Back to somatosensory PT theory.

Like I said earlier my understanding is that the classic PT is a woosh-woosh, thumping, beating, generally lower frequency noise that matches more closely the sound of blood rushing through a constricted, tortuous vessel. The high pitched PT that can be altered with jaw movements doesn't fit the description and is probably neurological.

Because of this running around to ENTs and other medicos will just result in expense and unnecessary scans. Having said that, obviously getting a head MRI for peace of mind and to exclude most things makes sense.

 

[ChrisM]

Hi Jeremy,

Thanks for all that information.

Did the doctors you saw say the MRI and MRA without contrast were good enough to rule out brain/vascular issues?

Is the idea that if something vascular is found without contrast MRI/MRA, then a more detailed MRV with contrast would be required?

I am glad to hear the Melotonin helps sleeping, maybe I will give that a try.

What do you think of the idea of taking some sort of anti-inflammatory short term just to see if it reduces the sound, which would help indicate that it is a muscle issue?

Enjoy the summer down there, we just got 20 cm of snow here, way too early. I think the cold makes everything worse also, maybe the muscles tense up more in the cold.

Chris

 

[Greg Sacramento]

Hi Chris,

I grew up in Massachusetts and I loved the snow back then. I knew some people back in MA with your last name.

Did you ever have a dental or neck injury? Any pain involved?

It does seem that you are having input from the spinal trigeminal tract which can cause reaction to the tympanic membrane. I have high pitch somatic tinnitus, but my PT comes and goes. PT started again, after being gone for months. Cause was extreme forward head bending. This started neck to jaw compression which activated my tympanic membrane. For me, it also also relates to most everything cervical that can influence my brain stem. It's often a two direction highway and the temporal area is always involved. PT is very hard to solve completely.

It's hard to say more to you without knowing more as the oral cavity may also be involved.

 

[melbournejeremy]

Hi Chris,

My understanding is that radiologists like contrast images because they are easier to read. But a non contrast MRI read by a descent radiologist will show any abnormality too at least for MRI brain and MRA brain. Then to confirm if there is an abnormality and not some artifact a second contrast enhanced scan might be done. I don't think you can avoid contrast for MRV. But vascular tinnitus is normally a hum (as opposed to arterial which is a pulse), or vascular hum noise as far as I know. I also think that MRV is not necessary unless you can suppress the PT with jugular compression or you have signs of inter-cranial hypertension in the first MRI which can seen by an empty sella and tortuous optic nerve as well as spinal fluid seen in the optic neve sheath. Some people with IIH have a flat spot on the back of their eye from the increased inter-cranial pressure. But it's mostly in woman and probably has a bunch of other side effects like headache and vision issues.

I am pretty certain if you get a 3 Tesla MRI and MRA without contrast it would be hard to miss anything. The brain MRI is mostly rule out acoustic neuroma and they normally run a 1mm high resolution sequence across the area of the cochlear. The MRA to rule out fistulas, DAF, DVA, aneurysm, high riding jugular bulb and bunch of other stuff I can't remember,

My scans were done in a Siemens 1.5T machine and no contrast and the images are not as sharp as a 3T machine but a skilled radiologist who is familiar with his machine can easily read the scans well,

I tried some over the counter anti inflammatory and antibiotics previously with no effect,

I lift a lot of heavy weights and enjoy bodybuilding, no doubt neck and jaw never really get a chance to recover with the clenching, lifting, squatting etc.

My comments are just that. Obviously to get real advice you have to find the right doc.

 

[Tinniger]

Like I said earlier my understanding is that the classic PT is a woosh-woosh, thumping, beating, generally lower frequency noise that matches more closely the sound of blood rushing through a constricted, tortuous vessel. The high pitched PT that can be altered with jaw movements doesn't fit the description and is probably neurological.

I agree completely.

E.g., PT from carotid dissection is not high pitched, but resembles the sound of "Doppler-sonography".

 

[ChrisM]

Hi Jeremy,

Thanks again for your thoughts on this, it confirms my opinions.

I have already had a CT scan and ENT exams that they say ruled out the neuroma and some other bone issue causing the PT, so maybe just an MRA without contrast would make sense now. If only there were and experienced doc to work with on this it would be helpful! I have tried to contact Mass Eye and Ear Lauer Tinnitus center, but they havent gotten back to me yet, and I dont know if they just do research or also see patients. I will try contacting them again. Here is some info about the place:

https://www.masseyeandear.org/resea...s/laboratories/lauer-tinnitus-research-center

They do talk about the "hidden hearing loss" that you mentioned.

 

[ChrisM]

Hi Greg,

Where in Mass did you grow up? I am in western MA, Northampton.

I have had a lot of smash ups to my head and neck in the past. Here are a couple of them.

About 30 years ago we were sitting on the shoulder of the Maine Turnpike for work (I am a civil engineer) so we had no seatbelts on, and an 82 year woman smashed into us from behind at 65 MPH. Our car rolled over 2.5 times, landed up side down, and then the woman's car landed on top of our car and then our roof caved in. Ouch! I had a TBI head injury, certainly neck stress/strain, but no specific neck injury. Lucky to be alive actually.

About 37 years ago, when I was 16 growing up in the "Garden" State, we all drove around like Evil Knievel wannabees on our mopeds, without helmets, and one day while going through the woods at about 30 MPH, a tree jumped out in front of me and I hit the tree head on, no deflection, and then I flew like a missile head first (without helmet) into the tree and was knocked out cold. I had a concussion and likely also neck stress and strain.

Nowadays, when I spend too much time staring at the computer screen, I find myself leaning forward like a Neanderthal. I think this also stresses my neck. In fact, when I pull my head back into my neck the PT sound drastically decrease.

I am trying an accupressurist now who works the trigger points, does cranial sacral and other manipulations. He says I have a lot of neck tension and thinks it could cause the PT, but essentially the intention is simply to release the neck tension and improve alignment and see if it helps. I have been 5 times so far but I am not sure if it is helping yet. Sometimes I think yes, sometimes I think no.

Snow is nice without PT, but to me, with PT, snow means cold and further tensed muscles. At least you can just head up to the Sierras to get a dose.

 

[ChrisM]

Hi Tinniger,

Yes, definitely high pitched, so maybe that helps rule out vascular issues.

 

[Greg Sacramento]

With your explanation to my question on any possible neck injury - your problem is probably cervical. Arterial turbulence due to kinks in neck arteries. Secondary could be plaque building up from this. This can have delayed reaction for many years.

Maybe, but doubtful carotid artery atherosclerosis at 12%. Almost a given is deep vertical fibers and facet joint tenderness. Possible disc space narrowing, spondylosis and joint hypertrophy. Maybe loss of normal lordosis.

Treatment for suboccipital - stretching …. trapezius, scalene, semispinalis capitis, sternocleidomastoid should be considered after all testing.

In reference to your injury history I would get neck X Rays Complete and a color doppler ultrasonographic study. I often mention MRA testing, but I would also get the other exams and CT tests for neck and the oral cavity.

I would get blood testing for anemia - CBC. Also blood work for generalized infection along with a thyroid panel.

The person that I knew lived in areas northeast of you by about 30 miles. His first name was Ray.

 

[ChrisM]

Thanks Greg, I have already had the CBS and thyroid check.

I wonder if they can also scan the neck while they are doing the MRA for the head!

 

[Greg Sacramento]

I believe that often tinnitus spikes and PT develops from a moment of hypertension - excitement especially where's one has circulation, heart, nerve or artery problems. Probably not from stress, fear or flight, but an emotional CNS response.

This is sometimes mentioned as one liners in detailed tinnitus articles and more so as line liners in detailed PT articles. Data interruption files of physiology called input and output will show this.

The hypertension moment could involve something like having excitement when one's favorite team makes a score. One jumps up and makes fists and twist neck. From this nearby ear muscles and nerves react, but it probably also involves a lot more.

I believe that hypertension excitement of just a few second with tinnitus may be our worse enemy.

For many of us, I think that development of a safe non benzo, non taper neuro drug is our best hope.

 

[Tinniger]

Hi Tinniger,

Yes, definitely high pitched, so maybe that helps rule out vascular issues.

If the pulsatile character is like the pulsatile changing of a continous tinnitus, it might be probably not a vascular issue, but the influence of the pressure of an artery to a nerve...

 

[melbournejeremy]

I deal with medical equipment. Specifically ultrasound machines. Some of the better units I have are good at imaging nerves. I have held the scan head to my temple/TMJ area to try to see if the vessels and nerves are crossing. I have held the probe head there while I move my jaw left/right and in doppler mode I have tried to see if there is a vessel that is changing it's flow rate and inducing the pulsatile noise. Unfortunately I couldn't see anything. To see such tiny variations in flow really need the latest 4D-CTA scan to really see what nerves/vessels are conflicting.

 

[ChrisM]

Hi Jeremy,

Wow, I imagine you had some hopes when you tried the ultrasound.

I wonder when you got the MRI and MRA without contrast, did your doctors think it would be adequate to rule out problems, and then only use contrast if something found needed to be better viewed?

thanks

Chris

 

[melbournejeremy]

Hi Chris,

If you get a scan in an older less powerful machine like a 1.5Tesla machine, contrast is useful. But most places use the 3.0Tesla machines and it's hard to miss anything nasty with those machines. You could always just ask before getting a scan what is the machine type and make your decision. I am sure if you ask different doctors you will get different answers. But like I said before, a good radiologist who reads head scans dozens of times a day and knows his machine can pick out most gross things. The issue is with somatic tinnitus is you can't really determine what nerve or vessel is causing conflict unless it is an obvious compression of nerve or vessel. But my feeling is the subtle nature of the changes in nerve structure won't be seen and even if it is seen - then what - open your head for risky surgery?

My suggestion is just a normal non contrast in a 3.0T machine specifically for tinnitus so they can to 1mm slice on the nerve from ear to brain for neuroma and normal 5mm slices for the rest of the brain. The MRA is just a normal MRI sequence that uses a subtraction method to highlight the oxygenated arteries and any abnormality is pretty easy to see. Most newer machines digitally construct a 3D image that can be rotated in the software on the disk they provide you. You may as well do both at the same time. The MRA sequence only adds like 15 minutes to the scan.

But like I say, this is a forum. Everyone has an opinion that's just my opinion.

Jeremy.

 

[ChrisM]

Thanks Jeremy

 

[Greg Sacramento]

A good guide summary for Pulsatile Tinnitus.
https://link.springer.com/article/10.1007/s40134-017-0199-7

 

[ChrisM]

Thanks Greg

 

[Halsy]

An inner ear specialist is a Neurotologist. That's who you want to see, not an ENT. Like Greg said, a neck Xray is necessary too. If you do have issue - and you should if it's somatic PT- the next step would be getting an assessment from a Neurosurgeon - though the radiologist will do the initial assessment of the Xray and then your family doctor can make the determination if seeing a Neurosurgeon for a consultation is warranted.

If it is somatic PT than that's related to neuromuscular trauma and taking a physical approach is the best way to resolve it. Diet and regular exercise, physio, core and neck strengthening exercises, massage, hot tubs, inversion tables, dry needling, etc. all things of that nature will help, if not resolve the problem outright. It's on average a 6-18 month recovery process depending on the trauma and the work you put in to address and resolve it.

 

[ChrisM]

Thanks Halsy, that all makes sense.

By the way, not sure everyone has seen this:

https://hearinghealthmatters.org/hearingnewswatch/2018/new-treatment-device-somasensory-tinnitus/

 

[Halsy]

Thanks Halsy, that all makes sense.

By the way, not sure everyone has seen this:

https://hearinghealthmatters.org/hearingnewswatch/2018/new-treatment-device-somasensory-tinnitus/

Yeah, Dr. Shore is well known around here. I actually volunteered for this series of trials but didn't get in. I think her work is most likely the right path for a "cure" for tinnitus for most people at any rate. Regardless of how your tinnitus started or why it persists it all comes down to the fusiform cells. If you can reset them then the tinnitus is over. Even if you can calm them down for several hours/days/weeks/months at a time that's almost as good as a cure right there.

Keep your fingers crossed because her work is the game changer IMO.

 

[Halsy]

For many of us, I think that development of a safe non benzo, non taper neuro drug is our best hope.

One already exists. Unfortunately it's very hard to come by. It's called Picamilon, it's a nootropic. Apparently it's as efficacious as any benzo and with none of the downsides like addiction and loss of efficacy. My neurologist - who is Russian - agrees it's an amazing drug and wishes we could get it here...but we can't. Sorta kinda at any rate. You can find it online but seems to sketchy to risk it. I have no idea how one goes about acquiring the rights to sell it here but I'd imagine a small fortune is waiting to be made for whoever can.

https://www.nootropedia.com/picamilon/

There's also a Japanese drug - Aderazid. That's supposed to be excellent for tinnitus as well but I can't find out a whole lot more about it, so damn frustrating.