Extreme tinnitus, can anything be done?

A friend of mine with severe ME has a very severe case of tinnitus, which gets worse with exertion (even minor mental exertion). He says it feels like a pickaxe constantly hitting his brain. Some nights, he vomits because of how severe the tinnitus is.

He has tried seeing multiple neurologists but they tell him nothing is wrong with his ear and to do CBT. I think it's a brain problem and not an ear problem, and apparently neurologists are completely incapable of recognizing tinnitus if it comes from the brain? Nevermind CBT being absolutely idiotic because talking makes his tinnitus worse, but whatever.

Is there anything at all we can do here or is he just doomed to have this forever?

 

Has he had his hearing tested with an audiologist? does he have hearing loss?

I say this because with the more expensive hearing aids (I think), the audiologist can program a sort of remedy, which, in my case, completely extinguishes the problem. I don't notice any tinnitus when I have my hearing aids in, but, my case of tinnitus is mild, though maddening.

So, in the literature on tinnitus, getting hearing tested is a first step because tinnitus is produced by a lack of sounds being transmitted, or so they say. That said, I don't know if this applies in his case.

 

I'm pretty sure his tinnitus comes from the brain not the ear. He doesn't have any hearing problems.

 

Unfortunately, there's not much that can be done—often nothing. I have severe tinnitus and have had tinnitus of some level constantly for 12 years. It's a nightmare, so I sympathize with your friend. ME and tinnitus is the combination from hell.

Tinnitus is a brain issue, though damage to some part of the ear (usually the inner ear) can be the cause.

I have not heard of tinnitus being likened to a pick axe. It sounds awful. Has your friend had an MRI? That would exclude some stuff that might cause tinnitus.

Otherwise, it is about managing your reaction to tinnitus, which is almost impossible when it is severe. I use a lot of masking and sound therapy. I have a hearing aid in my left ear, which is the bad tinnitus ear, but it doesn't really help that much. I have some hearing loss at high frequencies in that ear.

There are some devices coming onto the market, such as Lenire, but they are expensive to buy and require trips to a tinnitus clinic, I think.

 

Yeah other things have been ruled out. Man it's such a joke that any ME related problem never has a treatment or a solution...

 

I had tinnitus in year 1, annoying but not bad bad and while cumulative with chronic headache was a lesser symptom overall. However I would often be trying to go to sleep with it which ain't great. I felt that it was part of the hypersensitivity/sensory overload which for me affected my hearing more than my eyes. I presumed it was neural though possibly inner ear rather than brain.

Cochlear nerve cells and their supports are very sensitive to blood flow, so microvascular disturbance may play a role, but essentially I suspect it comes down to the same sorts of problems that are affecting us more generally. I expect the pathways between tinnitus and noise-induced hearing loss overlap.

From Hearing Loss and Blood Coagulation Disorders: A Review (2023, Hematology Reports) —

From NRF2 Is a Key Target for Prevention of Noise-Induced Hearing Loss by Reducing Oxidative Damage of Cochlea (2016, Nature Scientific Reports) —

I found that tinnitus abated at the same time I was able to stop intermittently wearing ear protectors for noise overload. This was along with other symptom severity improvements that came with pacing / avoiding push-crash and general ME stabilisation.

 

If hearing in one ear is substantially worse than in the other ear this can be a symptom of a benign tumour called an acoustic neuroma or a vestibular schwannoma. They grow on the main hearing nerve between the ears and the brain and can cause tinnitus. I had an MRI scan to check for this because of the way my hearing was deteriorating in one ear much faster than the other (my scan was negative).

https://www.macmillan.org.uk/cancer-information-and-support/brain-tumour/acoustic-neuroma

https://en.wikipedia.org/wiki/Vestibular_schwannoma

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Another cause of tinnitus is Normal Pressure Hydrocephalus (NPH) (although the name, in some cases, can be misleading. Pressure in the head might be higher than normal.) I had NPH which was discovered by accident when I was suspected of having had a stroke. (I hadn't had a stroke.) Doctors told me that tinnitus wasn't a symptom of NPH but it was for me, and the surgery I had for it reduced the severity a lot. (Edit : I just remembered. It was actually headaches I was told weren't a symptom of NPH, not tinnitus. But I definitely got headaches!)

https://en.wikipedia.org/wiki/Normal_pressure_hydrocephalus

It took several years but I was eventually given a surgery called an Endoscopic Third Ventriculostomy (ETV) which was a big success.

https://en.wikipedia.org/wiki/Endoscopic_third_ventriculostomy

This achieved several things for me :

a) It reduced the severity of my tinnitus a lot.

b) It eliminated the headaches I'd had almost constantly for decades. (They were usually mild, but not always.)

c) I used to get visual disturbances when I woke up - they almost completely stopped too, after the surgery.

c) It improved my balance tremendously. I'm much less clumsy than I used to be, but I still can't heel/toe walk. If I was ever asked to do USA-style sobriety tests while stone-cold sober I would fail spectacularly.

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Some people with tinnitus have found raising their vitamin B12 levels to top of the range or higher will help reduce their tinnitus (Vitamin B12 is not toxic). It also helps some people eliminate TMJ? TJD? i.e. Temporomandibular joint dysfunction.

https://cks.nice.org.uk/topics/temporomandibular-disorders-tmds/

https://en.wikipedia.org/wiki/Temporomandibular_joint_dysfunction

https://www.healthline.com/health/tmj-tinnitus

There are multiple different types of B12 supplements. People might have to experiment to find which one gives the best results (if they get any results at all). The only one that improves things for me is methylcobalamin, in conjunction with methylfolate. Others do best with one of the others : cyanocobalamin, hydroxocobalamin, adenosylcobalamin.

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Another possible cause of tinnitus might be teeth grinding. Gadgets can be created to order by dentists to prevent teeth grinding (bruxism), but they are horrifyingly expensive. I've been quoted about £300. I have no idea how that price is justified but I couldn't afford it anyway.
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Tinnitus is also a suspected side effect of some meds, including tramadol (which I take at night some of the time). It's not listed formally as a side effect, but when I asked our pharmacist about the possibility, he said that it is reported by some patients.

I've had tinnitus for so many years that I've got used to it, and although it's worsened considerably by tramadol, it's still preferable to the pain I'd otherwise have. I have three different types of tinnitus; they're all annoying, but luckily none of them are the highly disruptive shrieking sirens type that a deaf friend used to report.

 

I developed tinnitus after a really bad case of bronchitis. There may be no connection, but that's when it started.

Mine is mild and doesn't bother me too much. However, I use a white noise machine at night to help mask the tinnitus because I notice it more in absolute silence.