Abraham Shulman Tinnitus Protocol (Clonazepam Plus Gabapentin)

Discussion in 'Treatments' started by Chinmoku, Oct 9, 2020.

    1. Chinmoku

      Chinmoku Member Benefactor

      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      Unknown, possibly medication
      This is the old Shulman et al paper:

      GABAA-benzodiazepine-chloride receptor-targeted therapy for tinnitus control: preliminary report

      That, based on brain imaging, argued that for some types of tinnitus the combination of Clonazepam and Gabapentin works. I have read that some forum members are on this combo, for example @linearb, @Carlos1 and a few others. I have also read that a lot of Tinnitus Talk members had problems coming off Clonazepam or other benzos.

      None of these drugs are good drugs long term. They inhibit neuroplasticity and may change the brain in bad ways long term, potentially leading to dementia. However, if the alternative is jumping off a bridge when one has kids and family, one may want to do a pact with the devil.

      Now some questions from a personal point of view. It is taking me a great effort to write this post. When tinnitus hit me due to a ear infection I was on Pregabalin, a stronger version of Gabapentin, for other reasons. Not sure about this drug, suspecting that it was not good for me it took me more than one year of pain to wean off. It has been terrible with a crazy list of withdrawal symptoms worthy of the worst benzos, and the tinnitus has increased a lot. Perhaps coming off was a mistake as I had no side effects and it probably didn't aggravate my tinnitus in the first place on a stable dose. However, when I came off completely some bereavement hit my family and I was put on Clonazepam, also to help with the last stages of Pregabalin withdrawal. I have been on Clonazepam for 7 months now, at doses ranging from 0.25 to 0.5. It lost completely any effectiveness after two weeks and the tinnitus has been worsening constantly, with a horrid electrical screaming static that now forces me to mask most of the day with some very special sounds. In turn, the masking makes it worse. It's a horrible catch 22. The other problem is that if I try to stop the Clonazepam the tinnitus becomes even worse and I become anxious. So I'm sort of trapped. Note that I don't know if it's really the Clonazepam that is causing this constant worsening.

      My days are agony. I'm facing a family crisis, I am hanging to my job by a thread but I'm nor really functioning, and do my best for my kids but I suffer in agony all day, every day, and it's turning darker and darker. This level of tinnitus is giving me severe stress symptoms. I tried many many things to improve, pharmaceutically, supplements, physiotherapy, osteopathy, acupuncture, Len ire, steroid injections, oral steroids, vasodilators, antivirals, diets, hypnosis, mindfulness, vagus nerve stimulation, hearing aids... nothing worked. The worsening pattern continued and no doctor has been able to tell me why. They only say "anxiety" but this is utterly unconvincing. I can relax, during one of the acupuncture sessions I feel asleep, rarely I tend to fall asleep during mindfulness, but the tinnitus never diminishes or even fluctuates.

      There is a possibility that I'm in gaba withdrawal from Pregabalin and now Clonazepam. I'm not sure though, there is no serious research on this, we have the Ashton manual but that's it, and for gabapentinoids we don't even have that, only anecdotal accounts. The thing to do would be to come off the Clonazepam with a super-slow taper and wait a few months to see if it is the drug and if I am in tolerance withdrawal. It's already agony now, I can't face a slow taper in this state. With the neurologist we tried a few medications to see if they helped with the tinnitus, in a way to allow me to drop Clonazepam easier, but nothing worked and every attempt worsened things further. I'm now agonizing and seriously don't see a future. For me it's basically over, unless I find a way to make this tolerable quickly.

      Yes, before anyone mentions it, I know that we have FX-322, OTO-413, SPI-1005, XEN-496, Hough Ear Institute, Dr. Susan Shore, Prof. Thanos Tzounopoulos etc to look forward to, but we are talking years and I don't think I can make it for much longer. Weeks look like centuries to me, I can't even conceive living like this for 5 years. I feel a huge rage mounting for the fact that the medical establishment waited for ages to get to a serious set of possibilities, even more so when I think about all the people who paid dearly for this delay. It has been two years of hell for me but in the last couple of months it has become 24/7 agony with zero windows. Without improvement and with this worsening trend continuing, I have perhaps weeks, maybe a few months at best.

      Now, seeing how poorly I'm doing and seriously concerned for my safety, a doctor has proposed me to go on the Shulman protocol.

      I hesitate to do that, mindful of all the problems that people had with these two medications, especially in terms of coming off, given also all it cost me to stop Pregabalin, but my situation is simply not sustainable. I have kids depending on me and need to face a big family crisis. If I don't feel better short term my life will be completely destroyed. There is no guarantee this will work but there is nothing else I can try. However there is also the risk that these medications may worsen my tinnitus, especially if I'm in tolerance. If that happens, it's over.

      There are a couple of final attempts I could make before succumbing to the protocol, I could try psilocybin microdosing (some had luck with psilocybin in terms of tinnitus elimination or improvement) or the peptide BPC-157. I have concerns on the peptide, shared by other forum members, while given clinical trial data I'm more open to psilocybin, especially in the micro-dosing formulation where one can monitor progress and stop early in case of problems. Psilocybin reportedly cured people of anxiety and depression, addiction, PTSD, and even fear of death in terminally ill patients. If it can cure fear of death perhaps it can help with tinnitus? But if psilocybin does not work, and it's a crapshoot really, I won't have anything else. I don't have the strength to travel, to try TMS, stem cells or similar things, it's a monumental effort already to go out to bring the kids to school. It takes all I have.

      I am staring at this Shulman protocol as a pact with the devil. I don't know what else I can do.

      I have also a specific question: my other doubt is that my tinnitus is very strongly localized on my ears, the left ear especially. I understand that the Shulman protocol may work for "central tinnitus" (whatever that means) but my tinnitus is not central. Does that mean it cannot work? Do people with unilateral tinnitus or ear tinnitus benefit from the protocol? Anyone?

      Sorry for the long post. Any feedback welcome. I know no one can give medical advice here, and it's not what I'm asking. I'm asking for general opinions and experiences. Thank you in advance.
       
      • Hug Hug x 4
      • Informative Informative x 1
    2. all to gain
      No Mood

      all to gain Member Podcast Patron Benefactor

      Tinnitus Since:
      -
      Cause of Tinnitus:
      -
      I feel for you so much @Chinmoku. This thing is a beast, and you seem to have the beast of all beasts.

      I so hope you can find a way through this and get even a little relief.
       
      • Agree Agree x 2
    3. Pitseleh

      Pitseleh Member

      Location:
      France
      Tinnitus Since:
      2007
      Cause of Tinnitus:
      Unknown
      This is not necessary an answer to your question, but I've been on Clonazepam for 3 years now (0.3 mg at first, 0.7 mg now) and while my tinnitus was mild back then, it's now a terrible nightmare of multiple tones including a loud low hum, an unmaskable static and 2 high pitched pure tones.

      I have had tinnitus for 15 years and it only started getting real bad 1 year after I started Clonazepam.

      I tried to slow taper (really slow): nope, bad idea, made it even worse.

      Tinnitus reached a terrible level a few weeks ago and I had to up my Clonazepam dosage to be able to function, but it's not quieting the tinnitus anymore.

      Is the worsening due to Clonazepam? Who knows... At the same time, I can't function without it for now.

      Regarding the Shulman protocol, I know there was one study that couldn't find any proof that adding Gabapentin to Clonazepam made a difference vs Clonazepam only. But who knows, it may do the trick for you.

      From what I read in the link you posted, it says "predominantly central". That doesn't exclude non central tinnitus. When I started Clonazepam 3 years ago, my tinnitus was lateralized and it did lower the tinnitus level. I don't think it's an exclusion criteria.
       
      • Hug Hug x 1
    4. AUTHOR
      AUTHOR
      Chinmoku

      Chinmoku Member Benefactor

      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      Unknown, possibly medication
      Thank you, @all to gain, I hope to survive for my kids.
       
    5. AUTHOR
      AUTHOR
      Chinmoku

      Chinmoku Member Benefactor

      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      Unknown, possibly medication
      I'm so sorry it got worse. Was there a particular reason why you started the Clonazepam when your tinnitus was stable? My story is similar but more progressive, after two weeks of benefits I started worsening more and more on a steady pattern. It's hard not to think the medication is related but there is no way to know for sure.
      May I ask, did you get to 0 or how close to zero? How long did you taper overall? Was the worsening with all tones or just the static? Had you switched to Valium or stood on Clonazepam?
      Does it help you focus less on the sound at least?
      I cannot forget the story of Don, a guy who was on Clonazepam for 15 years, upping his dose up to 6 mg. He was on it for tinnitus. After 15 years he was in full blown tolerance withdrawal with many horrible symptoms and he was cold turkeyed in a clinic. They gave him Remeron and Propranolol. He went through 11 months of literal hell, with his worse symptom hellish tinnitus but many others. To distract he would take many showers each day. After 12 months he started having some windows and at 14 months his tinnitus faded to a very low hiss that was milder than his initial tinnitus.
      It's just one case but I always found it very suggestive.
      Yes I saw that but I think Shulman replied to that rebuttal. I'll try to find the papers to add to the thread.

      EDIT: I found title and abstract perhaps:

      Gabapentin and Tinnitus Relief
      Author(s): Abraham Shulman
      GP has been positive for achieving tinnitus relief over the long term in a particular cohort of tinnitus patients. Specifically, selected tinnitus patients are those who have accurately diagnosed clinical, predominantly central-type severe, disabling subjective idiopathic tinnitus (SIT). GP has not been recommended as a single therapy for tinnitus patients, but as part of a combined therapy attempting tinnitus relief after identification and treatment of factors known to influence the clinical course of the SIT. GP, a drug designed originally as a supplement for seizure control, was considered for those SIT patients in whom objective evidence of abnormal electrical and metabolic brain activity was identified. Initially, nuclear medicine imaging with single-photon emission computed tomography (SPECT) of the brain provided objective metabolic evidence. Since 2000, quantitative electroencephalography (QEEG) has provided electrophysiological evidence. Both tools have been used not only for diagnosis but as a monitor for objectively identifying the efficacy of GP and combined treatment.
      Is you tinnitus now more central?
      Thank you for taking the time to respond.
       
    6. GBB

      GBB Member

      Location:
      NYC
      Tinnitus Since:
      2020
      Cause of Tinnitus:
      Microsuction / Additional Acoustic Trauma in Close Proximity
      Can you go on short term leave from your job? I did this for health reasons for 6 months at about 85% pay. It is not a government benefit - rather we have a private insurer for circumstances such as these. It might give you some breathing room to operate more effectively.
       
    7. AUTHOR
      AUTHOR
      Chinmoku

      Chinmoku Member Benefactor

      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      Unknown, possibly medication
      I have been working from home and in a reduced capacity, so lot of time for potential rest, but this horrible tinnitus makes quiet environments unbearable, so I haven't really benefited from this. Thank you for the suggestions though.
       
      • Hug Hug x 2
    8. Rjbookworm
      Brooding

      Rjbookworm Member

      Location:
      Western United States
      Tinnitus Since:
      05/08/2020
      Cause of Tinnitus:
      Ototoxic medication
      I'm sorry that you feel so hopeless and I can understand your hesitance to take benzos. Benzo withdrawal can be torture for some people and it can trigger tinnitus even for people who didn't have tinnitus before. I've felt hopeless about my own tinnitus recently and I'm very new to having it. I keep telling people that they're not alone in many of my posts, but it's true. You're not alone in your fight with this monster.
       
      • Creative Creative x 1
    9. Ken219
      Frustrated

      Ken219 Member

      Location:
      New York Area
      Tinnitus Since:
      Summer of 1990
      Cause of Tinnitus:
      Noise exposure?
      @Chinmoku I have been on Xanax, Prozac, Ambien for 25 years. It has helped me survive my severe tinnitus.
       
      • Like Like x 1
    10. AUTHOR
      AUTHOR
      Chinmoku

      Chinmoku Member Benefactor

      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      Unknown, possibly medication
      Thank you. It's not just the benzos, I have a lot of problems with going on gabapentinoids too. I had very bad experiences with Lyrica when trying to stop it.
      We are not alone, that's true, but even if we are not alone, we should find better ways to help each other although I can't think of anything.

      The forum organizers are great with research updates and the Tinnitus Talk Podcast, and this forum is a very good place, but in the end there is very little that works for many of us and the agony risks to destroy one person over the long run.

      I need a lot of luck or even a miracle. I need it for my kids. I wish you well and I hope you improve soon.
       
      • Hug Hug x 1
    11. AUTHOR
      AUTHOR
      Chinmoku

      Chinmoku Member Benefactor

      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      Unknown, possibly medication
      Ken, did you find they lost effectiveness with time or not? Klonopin worked for me for two weeks and then it seems to do nothing but if I try to reduce it... boom!
       
    12. Ken219
      Frustrated

      Ken219 Member

      Location:
      New York Area
      Tinnitus Since:
      Summer of 1990
      Cause of Tinnitus:
      Noise exposure?
      I've stayed with the same doses. When I have a spike I increase the Xanax by .5mg until the spike appears to go lower. I then take away the .5mg. I, like you, fought to keep my career (computer programmer) and see my children to adulthood. I have two grandchildren and would love to see them grow but If the lord takes me now I'll gladly welcome the relief. I still pray for better treatments or cure and that all illnesses are treated better or cured. Is that too much to ask? G-d bless.
       
    13. AUTHOR
      AUTHOR
      Chinmoku

      Chinmoku Member Benefactor

      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      Unknown, possibly medication
      It wouldn't seem too much to ask, Ken, not to me. In any case you have been much more valiant than me given the time you have been holding on. I really hope you can find silence soon to enjoy your grandkids, it would be a super-deserved warrior repose. If you are stable you could at the very least hope that FX-322 works for you. If you can hang on 3-5 more years you could finally hear silence again. I don't know how long I can resist myself, I would need 12 years to put my kids to safety, but these days it looks like I can hang on 12 days maybe. It's horrible. I may have to increase the benzos or do something else, I can't go on like this. I'm using Klonopin 0.5 x day rather than Xanax, but it does nothing now, the tinnitus is unbearable.
       
      • Hug Hug x 2
    14. Martin69
      Artistic

      Martin69 Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      10/2013
      Cause of Tinnitus:
      (Health) Anxiety
      @Chinmoku
      Seven years here with unbearable tinnitus (3-4 ultra high-pitched sounds in ears and head). First two years with huge anxiety (a feeling that I could jump out of my skin non-stop). With Lexapro, anxiety became better. I am also 100% home worker (computer support) luckily. Otherwise, I could not really work.

      I oftentimes mask with cricket sounds or something else. When I have finished work, I go outside bike riding (and listening to audio books). If it gets too much, I take a Tavor (same as Xanax). But not on a regular base.

      Usually, tinnitus gives me a break every some days and becomes lower for 2-3 days. But for 2 weeks now, really 10/10 tinnitus. Don't know why. Maybe too much sugar too calm my nerves.

      This is just to let you know you are not alone. I really hope that the device of Susan Shore will give us some relief.

      I believe in a relief some day - that a bimodal device will make tinnitus lower.

      Take care.
       
      • Hug Hug x 3
    15. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      @Chinmoku The use of anticonvulsants including gabapentin in treating tinnitus was analyzed in a Cochrane review, which showed no evidence for a clinical effect and doubtful clinical significance as well as a high rate of side effects (18% of trial participants) in the treatment of tinnitus. Beneficial effects were only reported in the subgroup of tinnitus patients with hypertension, diabetes, or dyslipidemia,

      Eating a high intake of salicylates in diet may contribute to the onset of tinnitus, hearing loss, and neurotoxicity. Neurotoxicity won't decrease with intake of salicylates. Tinnitus may start to dissipate days or weeks after discontinuation of foods with salicylates from neurotoxicity tinnitus increase. Salicylates potentiate NMDA receptors response. Salicylates also cause an increase in corticosterone, which interacts with stress making tinnitus and hyperacusis worse.

      Technical:
      • Following exposure to a high dose of sodium salicylate, tinnitus onset occurs between 1 and 3 h post exposure and typically dissipates within 1–2 days following the exposure. R
      • Another reason for this is that salicylates decrease GAD, resulting in less GABA in auditory nerve transmission inhibition. R
      • Salicylates (over the long term) cause ↑BDNF/CREB, upregulated synaptic efficacy, and changed synaptic ultrastructure in the AC. R
      • Pentoxifylline or Sulodexide for neurotoxicity may have some benefit.
       
    16. AUTHOR
      AUTHOR
      Chinmoku

      Chinmoku Member Benefactor

      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      Unknown, possibly medication
      Thank you, Martin. What worries me is the worsening, if at least it were stable! And I never get a 2 days break with lessened symptoms, and I also don't practically benefit from benzos at current dosages. A nightmare. I just passed the two years mark but it's worse and worse. I need to find a framework to continue living but I'm pushed into a corner. Let's hope things turn around at some point, you have been very brave to keep going for so long, you are another hero like Ken. I hope I can make it like you.
       
      • Agree Agree x 1
    17. AUTHOR
      AUTHOR
      Chinmoku

      Chinmoku Member Benefactor

      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      Unknown, possibly medication
      Thank you, Greg, very helpful, as always. If I understand correctly, Shulman had answered this study with a brief note where he explained that Gabapentin was not to be taken alone (because ineffective) but only coupled with Clonazepam, and only for some types of tinnitus that he thought he could identify with brain scans. This is an old paper. I don't know if I would benefit from the combination but I tend to doubt it. I was taking Pregabalin previously, and it wasn't helping my tinnitus even when I re-upped the dose. What worries me is that the shrill/intrusive static scream got much worse while being consistently on Clonazepam, as if the drug were doing something bad. One possible crazy theory is that the drug calms my brain a little, thus allowing me to tolerate this horror with less anxiety, but is wreaking havoc with the GABA receptors in the cochlea (as opposed to the brain). When I tried to reduce the Clonazepam the anxiety skyrocketed and I could not stand the tinnitus. Shulman says there is a common pathway sound/mood that he would be targeting with the drug combination but it is an old paper and I don't know really how effective this is and how damaging.
      I started already eliminating all salicylates following your earlier suggestion. Unfortunately the worsening trend continues, I suspect it might be also the daily masking I do, but without masking I can't stand this horror.
      My problem is that I never get an oscillation. It is steady and it gets worse. I never get a break or some benefit. I don't understand this relentless pattern, most people get some variations but for me it's constant and more and more intrusive every day. I can't understand what is doing this. By exclusion, the only thing I can think of is the drug but I have no power to stop it, I'm already on the brink. I'm stuck with this medication and masking but the situation keeps going worse and worse. I don't know how to survive this.
       
    18. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
    19. AUTHOR
      AUTHOR
      Chinmoku

      Chinmoku Member Benefactor

      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      Unknown, possibly medication
      Thank you, I'll try it. I had tried Betaserc a couple of times to improve the blood flow in the inner ear, with no effect, but I guess this is different.

      At the moment I'm avoiding these foods:

      • Almonds
      • Apples
      • Apricots
      • Berries
      • Cherries
      • Coffee
      • Cucumbers and pickles
      • Grapes and raisins
      • Nectarines and oranges
      • Peaches
      • Peppers
      • Plums
      • Tea
      • Tomatoes
      I need to see if my GP is willing to prescribe Sulodexide, otherwise I'll need to find a specialist. A friend told me he had benefited from Sulodexide actually. Melatonin I do have. I found a couple of studies where patients benefited from Sulodexide and Melatonin.
       
    20. AUTHOR
      AUTHOR
      Chinmoku

      Chinmoku Member Benefactor

      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      Unknown, possibly medication
    21. Rjbookworm
      Brooding

      Rjbookworm Member

      Location:
      Western United States
      Tinnitus Since:
      05/08/2020
      Cause of Tinnitus:
      Ototoxic medication
      Does Lyrica cause withdrawal symptoms the same way that benzos and antidepressants do?

      I can't think of anything that's helpful either. Sometimes empathy can only go so far.

      I hope that you improve soon too for both your sake and the sake of your kids.
       
      • Friendly Friendly x 1
    22. xyz
      Alienated

      xyz Member

      Location:
      Germany
      Tinnitus Since:
      2006 mild T 2019 T worsening H onset
      Cause of Tinnitus:
      unknown / probably noise induced
      Is tea really bad for tinnitus? On the BTA's website it is actually promoted to drink a cup of tea.
       
    23. Contrast
      No Mood

      Contrast Member Benefactor Hall of Fame

      Location:
      Clown World
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      noise injury
      • Like Like x 1
    24. AUTHOR
      AUTHOR
      Chinmoku

      Chinmoku Member Benefactor

      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      Unknown, possibly medication
      It might be that the quantity of salicylates in a cup of tea is very low and does not impact you. Who knows with this horrid condition.
       
    25. AUTHOR
      AUTHOR
      Chinmoku

      Chinmoku Member Benefactor

      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      Unknown, possibly medication
      Not for all people, but a non negligible set of people experience withdrawals that are worse than benzos. That also happens with Gabapentin. That's why the Shulman protocol is worrying.
       
      • Informative Informative x 1
    26. Rjbookworm
      Brooding

      Rjbookworm Member

      Location:
      Western United States
      Tinnitus Since:
      05/08/2020
      Cause of Tinnitus:
      Ototoxic medication
      That makes sense. People need to be careful about the medication that they take.
       
    27. tpj
      Depressed

      tpj Member

      Tinnitus Since:
      08/2008
      Cause of Tinnitus:
      probably noise
      I've read that salicylates in food shouldn't affect tinnitus unless you are sensitive to it.
       
    28. AUTHOR
      AUTHOR
      Chinmoku

      Chinmoku Member Benefactor

      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      Unknown, possibly medication
      I don't seem to have spikes when I get a fresh orange juice or some fruit, so perhaps I'm not sensitive. I'll stay off them for a few weeks to see if I improve but I am not holding my breath.
       

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