Deep Brain Stimulation (DBS) for Tinnitus

But my question again is as follows - you know someone in the trial. My impression is that the person you know responded well to the treatment. Yet, the trial page says they are not yet recruiting, which would lead me to conclude the actual trial has not yet begun.

Am I missing something here?

 

I saw that and I really don't know why it appears like that...

 

Could be that the data on the website has not been updated.

 

How bad is your tinnitus?

Would you go for DBS when available?

 

I am bothered by my tinnitus quite a bit. I would seriously consider the DBS if I was convinced that it I would likely help me.

 

Isn’t DBS already available? Brai3n seems to have it up and running already, albeit with a 1/3 success rate. They use Transcranial electrical stimulation, Transcranial Magnetic stimulation, Neurofeedback, and can combine all three depending on the cause.

 

That’s not DBS.

 

Check that video that was posted earlier... DBS opens up your skull. At Brai3n they do a lot of things, opening skulls isn't one of them

 

@Ela Stefan, in my previous post I confused the trials, I was mailing with coordinator of Auditory Brainstem Implant trials for tinnitus, which take płace in Groningen, the Netherlands.

Implantation of an Auditory Brainstem Implant for the Treatment of Incapacitating Unilateral Tinnitus

She is aiming at stimulating DCN with an implant. Different approach than DBS, though still interesting.

 

Assuming someone wanted DBS procedure for tinnitus, from what I understand, there are trials happening but it's not a procedure you can ask for yet. Well, I guess there's that one exception in the Netherlands but you have to be a resident there.

 

I'm checking all the clinical trials of tinnitus (there are about 40-50, although some of them aren't really looking for a treatment...), and I have found this which might be good news:

Evaluation of Deep Brain Stimulation (DBS) of the Right Operculum 3 (OP3) in Permanent Non-pulsatile Disabling Tinnitus (TINNOP3-DBS) (TINNOP3-DBS)

Estimated Enrollment: 7 participants
Estimated Study Start Date: May 2021
Estimated Primary Completion Date: May 2022
Estimated Study Completion Date: November 2023

Link: https://clinicaltrials.gov/ct2/show/NCT04296097

 

Nice one. You are really researching the DBS route. Keep us all updated.

 

Very good finding!

Look here:

Specific activation of operculum 3 (OP3) brain region during provoked tinnitus-related phantom auditory perceptions in humans

I always suspected my tinnitus as of somatosensory origin and the link that I just posted has a confirmation of it. My tinnitus came from a very clogged middle ear and local inflammation due to an external ear canal fungus. The fungus was cleared in days with ear drops, but they gave nothing for inflammation. My ear unclogged itself after 2 months, and bad tinnitus followed, in both ears. Which will explain again the somatosensory connection that gave tinnitus at the same time in my previously good ear. And again that I have 0 ear problems (sensitivity, distortion, pain...), but awful reactivity which made my tinnitus much worse in time.

I will write an email to the contact person in the study, Stéphan CHABARDES. Actually I just called him earlier and he was in a surgery. Got to be a way to break this awful tinnitus cycle.

 

Hi, any success contacting them?

 

Hi, not yet. Still waiting...

Can I please ask how did you get your tinnitus and how does it sound? Do you hear it in ears or in the whole head? Does it fluctuate? Mine was from a severe middle ear local inflammation, no virus or bacteria. Normal hearing. I'm taking 0.5 mg of Rivotril (Clonazepam) at night for sleeping. I wonder if this is a contributing factor to the head hissing, roaring tinnitus that I have now, even 3-4 days a week.

Do you know if DBS surgery can be performed when you are taking benzos or after when in withdrawal? Thank you!

 

Hi. I am not 100% sure. Mine might be noise induced. But I also had a bunch of other potentially contributing stuff like benzo/NSAIDs/antibiotics (Ciprofloxacin)... My hearing was also normal. It sounds like a wall of sounds, I got some crazy 10 tones (mostly atonal).

I do not think use of benzos/withdrawal is contraindicated for DBS surgery. Maybe they would like people meds free to have a better evaluation of the DBS efficacy on tinnitus... But anesthesia-wise that isn't contraindicated at all.

 

ClinicalTrials.gov: Deep Brain Stimulation for Tinnitus

Does anyone have more information on this? There are no clinical phases (1, 2, 3, 4 etc..) displayed but it got published shortly after conclusion of Phase 1 (LC) Caudate Stimulation that concluded in 2019.

 

I have no idea! It also says "Not yet recruiting"!And last update is from 2020. Best way to find out is to send an email.

 

There is another one taking place in France that will be recruiting soon. The sign up link is below.

Give them your name and email. It says "Even though the study is not yet recruiting, we will reach out to the sponsors on your behalf."

https://www.clarahealth.com/studies/NCT04296097

 

I would think that the Clonazepam would lessen and not increase your tinnitus. If you go through withdrawal from Clonazepam, it might result in an increase. I am down to .375 mg of Clonazepam (down from 1 mg at night). I went from 1 mg, to .75 mg, to .5 mg, to .375 mg I will move to .25 mg at some point and then .125 mg before I stop. Clonazepam is more subtle than Xanax which hits you hard and quick.

 

Link doesn't work. Do you know why or have another one?

 

The link works fine, I just tried it. Maybe that Clara Health website have blocked Romania...

 

For me the link doesn't open. But why would they do that? That is crazy. Or maybe the link is blocked for all the countries outside France? That would make sense, as I know these trials, the one in Netherlands and the previous one in France, didn't accept people outside their countries!

Where are you located please?

 

I wrote to the email address, but for some reason the email cannot be sent. Maybe @Ela Stefan is right and they only accept patients from France.

 

That would be so wrong. You should at least be able to send an email and receive information!

After all maybe I move tomorrow to France. What a thing! Well we can ask a friend from there to send an email!

 

I was finally able to send the email. I'll see if they respond.

 

@JPGL, @Ela Stefan:

You can write an email to Dr. Chabardes. He's one of the leading scientists behind the French DBS project.



Link for more details about this trial:
https://ichgcp.net/fr/clinical-trials-registry/NCT04296097

 

As of now, all the studies about DBS I have seen in Europe haven't started yet! Including the trials mentioned here. Am I wrong?

All of them say: Not yet recruiting. And later you see they have moved their recruiting date way further than they intended!

 

Yeah, I don't know about the other trials, but there's a fairly recent report of the Maastricht study (July, 2021) which states that the recruitment has started in 2020 and that the trial ought to be concluded in 2023.

 

Thank you! I will try to write them an email!