How Many "CURES" Have You Tried?

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.

 

Unfortunately, I fear that HIFU can not do much for me. I do not have the requirements. My tinnitus can be hard right or hard left. Depends on the day. It may be pure tone 6500hz 80db (if i'm lucky) or a real agony 9000hz 120db (mixed tone) with other more high tinnitus (12500hz) that arrive suddenly and then disappear. This condition lasts permanently from 08.21.2013. I stopped using hearing aids (amplification or noise Ianco) on 13/11/2013. I've never had more stability. When I spoke on the phone with Jeanmonod, he said he was interested in the case and wanted to keep for me my clinical data. I have no other choices. When I close my eyes I hope God to take me away.

 

@Viking is Retigabine really out of the question for you?
Maybe you can do 1 week treatment with retigabine, stop for a week and restart just to get some relief and avoid kidney issues?

Whatever the case, I sincerely hope that HIFU works for you and you get 100% better.

 

@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.

 

That thread is incredibly long. Just curious who was cured?

 

A member called mpt (Matt).
More or less everyone who tried it or still trying, has lowered the volume.
But bad side effects and also it is not available in every country.

 

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...
It will be difficult to establish the precise point of the qEEG hyperactivity thalamocortical. Too many mixed frequencies. I fear too many faults ...too many variables. Do not forget that there is a chance once every two or three months that I woke up with no NOTHING! Total silence for 5 or 6 hours. Then always starts again from the left. Never happened before

 

@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.

 

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."
probably they are just collecting data.
thanks for your support

 

retigabine is a prescription drug which doesn't always have bad side effects on people.
don't listen to the scare stories. at lower doses its relatively safe.
a lot of people are seeing real improvement.
i will try it when i phase out my other meds.
its a shame more people don't give it a quick go,
which is what i intend to do.
there's solid science behind why it works.

 

@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.

 

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.
I have removed the heaeing aids and tinnitus mask on 13/11/2013 but the conditions never back down. Mj stopped 18/08/2013. The doctors gave me unuseful SSRI meds for many month without results.
Loud sound do not influence the T.
Thank you for your reply.
I'm opened to all advice

 

@Viking: Have you tried HBOC? Have you made new MRI for your ears? Perhaps new vascular anomalies/compressions occur or postsurgical sifeffects from the first surgery. You said you had total relief in the right side but the surgery was to the left where you had partial relief? Or you did surgery on both sides?

I myself have a high pitched continuous sound in only the right side, sometimes fluctuating, and my MRI shows vascular compression of the 8th CN in the entrance of the acoustic pore. I also have other sounds, like morse code, and static, not that bothersome as the high pitched one. I was wondering if mvd is a choice for me. Where did you do your operation (2008) and what about the cost?

 

@skoupidis what mra (how many tesla) showed that you have miscovascular compression ?

 

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?

 

Tried SSRIs but mainly for depression induced by T. Also on Diazepam but wish I wasn't. Currently trying HBOT (only two sessions in). Thinking about hypnotherapy.

 

I have tried: chiropractor, a quack Tmj guy who messed up my jaw for a while, accupuncture, physical therapy and the vitamins such as calcium, ginko, magnesium etc. Nothing made any difference except I think accupuncture was relaxing and exercising and hiking is the best. My T started 4 days after a rear end accident but extreme stress and some hearing loss may have been a factor also.

 

I heard there was a new pill coming out in 2020 I no its a long time has anyone tried the laser I have heard great results from that

 

I am trying the following (advice of a professor doctor and a specialist in natural herbs):

15 days onion juice 2 times a day
Done
30 days tea of alchemilla vulgaris (lady's mantle) 2 times a day
Done

15 days onion juice 2 times a day -> i am here right now on day 1. No relief from T at this stage but I'm not done yet... After onion juice i have to drink shepherds tea....


30 days tea of Capsella bursa-pastoris (Shepherd's purse) 1 time a day

If someone wants the details how to make onion juice or tea with alchemilla vulgaris and capsella bursa pastoris I will post about it here! It hasn't helped me yet but the professor keeps telling this cure is very important to try, espacially if you are young and have T. For older people with artery problems 40-> he advices white cabbage juice and vitamin U.


The professor said that T will dissappear mostly when you follow this cure exactly.

Anyone know if this can be the cure or already tried it?

 

@UserID, you have had tinnitus for a long time... can your ringing still get loud?

 

Everything on this forum and since 17 feb (when i have got T) i didn't have eye floaters.
With benzo plus a lot of other treatment like RTG now i have eyes floaters. So, nothing change for my T but i have gained a new problem. Now i put away every drug and try with trt for focus my mind on other sounds.

 

Ivan,
That was a very interesting post on what you have been through so than you for sharing it with us.
I have sever Bilateral Tinnitus and Menieres and on 9 tablets a day for it and hearing aids.......hope one day there will be a cure...had it about 12 years...lots of love glynis