Deep Brain Stimulation (DBS) for Tinnitus

Discussion in 'Research News' started by dan, Feb 18, 2014.

    1. JRC1

      JRC1 Member Benefactor

      Tinnitus Since:
      2016
      Cause of Tinnitus:
      medication
      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?
       
    2. Ela Stefan

      Ela Stefan Member

      Tinnitus Since:
      11/2018
      Cause of Tinnitus:
      Ear Infection
      I saw that and I really don't know why it appears like that...
       
    3. tommyd87

      tommyd87 Member

      Tinnitus Since:
      1999
      Cause of Tinnitus:
      tmj music
      Could be that the data on the website has not been updated.
       
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    4. Ela Stefan

      Ela Stefan Member

      Tinnitus Since:
      11/2018
      Cause of Tinnitus:
      Ear Infection
      How bad is your tinnitus?

      Would you go for DBS when available?
       
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    5. JRC1

      JRC1 Member Benefactor

      Tinnitus Since:
      2016
      Cause of Tinnitus:
      medication
      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.
       
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    6. danielthor

      danielthor Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      04/2020
      Cause of Tinnitus:
      Unknown
      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.
       
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    7. Gb3

      Gb3 Member

      Tinnitus Since:
      12/19
      Cause of Tinnitus:
      Sshl
      That’s not DBS.
       
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    8. Ben Winders
      Pensive

      Ben Winders Member

      Tinnitus Since:
      2020
      Cause of Tinnitus:
      acoustic
      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 :D
       
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    9. Mentos

      Mentos Member Benefactor

      Location:
      Cracow, Poland
      Tinnitus Since:
      03/2015
      Cause of Tinnitus:
      Noise induced, loud rock concert
      @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.
       
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    10. R0B

      R0B Member

      Location:
      Seattle
      Tinnitus Since:
      2001
      Cause of Tinnitus:
      Unknown
      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.
       
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    11. DocTors_94
      In pain

      DocTors_94 Member Benefactor

      Location:
      Spain
      Tinnitus Since:
      11/2021
      Cause of Tinnitus:
      Loud noise/ Covid? / Benzos / Ototoxicity
      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
       
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    12. Padraigh Griffin

      Padraigh Griffin Member Benefactor

      Tinnitus Since:
      05/2020
      Cause of Tinnitus:
      Unknown/Stress
      Nice one. You are really researching the DBS route. Keep us all updated.
       
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    13. Ela Stefan

      Ela Stefan Member

      Tinnitus Since:
      11/2018
      Cause of Tinnitus:
      Ear Infection
      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.
       
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    14. DocTors_94
      In pain

      DocTors_94 Member Benefactor

      Location:
      Spain
      Tinnitus Since:
      11/2021
      Cause of Tinnitus:
      Loud noise/ Covid? / Benzos / Ototoxicity
      Hi, any success contacting them?
       
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    15. Ela Stefan

      Ela Stefan Member

      Tinnitus Since:
      11/2018
      Cause of Tinnitus:
      Ear Infection
      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!
       
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    16. DocTors_94
      In pain

      DocTors_94 Member Benefactor

      Location:
      Spain
      Tinnitus Since:
      11/2021
      Cause of Tinnitus:
      Loud noise/ Covid? / Benzos / Ototoxicity
      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.
       
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    17. Ela Stefan

      Ela Stefan Member

      Tinnitus Since:
      11/2018
      Cause of Tinnitus:
      Ear Infection
      .
       
    18. Tasty
      Feminine

      Tasty Member Benefactor

      Location:
      Sendai, Japan
      Tinnitus Since:
      2009
      Cause of Tinnitus:
      Visual Snow Syndrome, possibly TMJD/Cervical Instability
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    19. Ela Stefan

      Ela Stefan Member

      Tinnitus Since:
      11/2018
      Cause of Tinnitus:
      Ear Infection
      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.
       
    20. RadioKid722
      Wishful

      RadioKid722 Member

      Location:
      NJ, USA
      Tinnitus Since:
      01/22/2022
      Cause of Tinnitus:
      Medication
      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
       
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    21. Athens

      Athens Member

      Tinnitus Since:
      09/27/2020
      Cause of Tinnitus:
      Unknown
      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.
       
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    22. Ela Stefan

      Ela Stefan Member

      Tinnitus Since:
      11/2018
      Cause of Tinnitus:
      Ear Infection
      Link doesn't work. Do you know why or have another one?
       
    23. 2noist

      2noist Member

      Tinnitus Since:
      04/2015
      The link works fine, I just tried it. Maybe that Clara Health website have blocked Romania...
       
    24. Ela Stefan

      Ela Stefan Member

      Tinnitus Since:
      11/2018
      Cause of Tinnitus:
      Ear Infection
      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?
       
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    25. JPGL
      Frustrated

      JPGL Member Benefactor

      Location:
      Spain
      Tinnitus Since:
      10/2015
      Cause of Tinnitus:
      Hearing loss? Noise? Stress? Unknown
      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.
       
    26. Ela Stefan

      Ela Stefan Member

      Tinnitus Since:
      11/2018
      Cause of Tinnitus:
      Ear Infection
      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!
       
    27. JPGL
      Frustrated

      JPGL Member Benefactor

      Location:
      Spain
      Tinnitus Since:
      10/2015
      Cause of Tinnitus:
      Hearing loss? Noise? Stress? Unknown
      I was finally able to send the email. I'll see if they respond.
       
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    28. Christiaan
      Inspired

      Christiaan Member Podcast Patron Benefactor Hall of Fame

      Location:
      The Hague, the Netherlands
      Tinnitus Since:
      2016
      Cause of Tinnitus:
      2016: headphones, 2020: worsened thanks to Rammstein
      @JPGL, @Ela Stefan:

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

      Capture d’écran 2022-05-04 à 16.34.50.png

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

      Ela Stefan Member

      Tinnitus Since:
      11/2018
      Cause of Tinnitus:
      Ear Infection
      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!
       
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    30. Christiaan
      Inspired

      Christiaan Member Podcast Patron Benefactor Hall of Fame

      Location:
      The Hague, the Netherlands
      Tinnitus Since:
      2016
      Cause of Tinnitus:
      2016: headphones, 2020: worsened thanks to Rammstein
      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.

      Capture d’écran 2022-05-04 à 19.12.19.png
       

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