Member- Jun 13, 2019
- 1,108
- Tinnitus Since
- 10/2018
- Cause of Tinnitus
- Started with a cold, possibly worsened by medication/noise
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.
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.
