I am so sorry this happened to you @Viking , breaks my heart everytime I read your story.
Can I ask you, how much hearing loss do you have exactly in dB ?
The reason I ask is that Jeanmonod will look for that.
try retigabine...see the lengthy thread...one guy totally cured
A member called mpt (Matt).That thread is incredibly long. Just curious who was cured?
Because my tinnitus is unstable. For example today: wake up with a single tinnitus right sided around 50 db 6000hz, after 1 hour change frequency to 8000hz and begins to spread to the left side. At 3pm the situation degenerates. 9000hz 90db all at right side. The left 6000 became subsided. Now is evening and i'm lucky for keeping this condition without further deterioration during the day but are no longer able to distinguish the side of provenance. I think I have a tone in 7000 in the left and right in 10000Hz. Are not able to provide a stable framework Jeanmonod. I I know that the inclusion criteria are: 1) loss of hearing input. Probable nerve damage (possible considering the previous surgery). Tinnitus stable and localized. The first one is ok. Others not...@Viking , why do you far hifu cannot to much for you? or, do you fear you will not be a candidate ?
It seems you have more than sufficient hearing loss to fit deafferentation criteria.
i hope this. although Jeanmonod was very cautious, I never understood what the specific requirements. I only have an email where I asked, if I were positive for tcd, how much time elapses from the visit to the surgery? They replied: "At the moment we have not yet fixed the plan for next year."@Viking , it doesn't matter if your T isn't stable. This is just the nature of your particular t.c.d. The important will be the qeeg result- it must have abnormaly high Delta and Theta waves, with possible increase in Beta and Gamma.
The doctor has invited you for evaluation, which means all the rest is satisfied in his eyes.
retigabine is a prescription drug which doesn't always have bad side effects on people.That thread is incredibly long. Just curious who was cured?
Thank you very much for your support. The situation is not easy. I was a smoker of hashish/mj who help my T a lot! I stopped when during a night (i was on hearing aids) the T suddenly worsening with new frquencies and very loud. I havent stopped the benzo. I hipotize the hash/mj withdraval have also worsenend this condition by 16 months. I would try to smoke hashish or mj to testing what happen. If is possible to quiet the neuron firing. Tonight for example a strange fact; i wake up at 3 o clock with a powerful tinnitus total left sided. I change position and after 2 hour the T change side. It was gone all on the right! I rechange position and have the same result. I suspect 2 fact: cervical spine problem without pain, cannabis withdraval. I haven't suspended the benzos.@Viking thank you for infos.
I have passed these situations.
Have you tried steroids like methylprednisolone dexamethasone ?
You have high benzo tolerance & addiction and this amplifies the problem.
The benzos destroyed the endogenous neural firing inhibition system and more of your tinnitus is benzo withdrawal syndrome.
I suggest you to avoid any sound sources (pc fans/hard disks/cars) even silent sounds to calm down T.
After some time (this time maybe long) the HF component of your tinnitus will stop.
HF massive tinnitus is close related to sleep deprivation noise stimulation and benzo tolerance&addiction but don't stop taking benzos because this will make the problem worse to resolve addiction you need closed support from doctor and tapering the dose very slowly. Are you smoking ?
Massive HF T comes easy but subsides easy. i think tonal T is more difficult to treat.
I have cured and now i have relapse with H and T but i don't know how i cured because i used a lot of drugs/supplies i don't think it was a drug i think the temporary cure was from avoidance in any sound exposure massive sleep, stopping benzos and endogenous repair process that happens to acoustic system in sleep.
Its and infinity loop you must break it to get better sleep makes T better but if you have T you loose your sleep.Panic plays a role in sleep deprivation from tinnitus.
It is called ear MRI, it is an MRI specifically for the ears. I don't know its specs. It denotes at one point in a picture: MRI B17 HFS+LPH. Haven't got a clue about tesla. Where can I find it if it is written somewhere?@skoupidis what mra (how many tesla) showed that you have miscovascular compression ?