I know the story of Don is quoted as a cautionary tale, but isn't it interesting he receded to lower than baseline after withdrawal? It's almost as though his ears/brain kept healing in the meantime when he was on benzos.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.
I thought the same. I keep wondering whether the ears/brain healed in spite of the benzo, or because of it.I know the story of Don is quoted as a cautionary tale, but isn't it interesting he receded to lower than baseline after withdrawal? It's almost as though his ears/brain kept healing in the meantime when he was on benzos.
Sorry, just to clarify, is the effectiveness the same as it once was?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.
Yes. It could be a placebo effect, I don't want to know. All I know is I do habituate.Sorry, just to clarify, is the effectiveness the same as it once was?
I have generalized anxiety but also panic anxiety.I had been on .5mg Klonopin for almost a year when my tinnitus started. I was originally on 1.5mg for about 6 months but weened down to .5 with no problems. I had been on the same dosage before when I had a long bout with IBS and weened off with no problems. My doctor is ok with me staying on .5mg for the rest of my life.
I am 52. I see no reason to stop it. I have generalized anxiety disorder and Tourette Syndrome. Klonopin has been a good med for me. I asked my GP to add Gabapentin and I am taking 300mg Gabapentin with .25mg Klonopin in the morning and the same at night.
It has only been a few days since I started the Gabapentin but the tinnitus is softer and more in my ear than in my head.
I also take Amitriptyline at night and sleep a solid 8 hours or more a night.
I have also been doing TRT now for 8 months. I am still struggling but the meds have been a lifesaver and allowing me to function normally. Yes I am far from habituation but I believe I am making progress slowly. I hate reading these nightmare stories about Klonopin and Gabapentin because for me they have not given me any problems, especially at these small doses. Seems to me people have issues when they try to come off them, which I don't see a reason to do until I habituate, and if I have trouble weening I will just stay on them.
You take those meds everyday?I have been on Xanax, Prozac, Ambien for 25 years. It has helped me survive my severe tinnitus.
Every day for 25 years. They help me. Still praying for better treatments or a cure.You take those meds everyday?
I can also name some of the supplements that genuinely lowered my tinnitus.I thought the same. I keep wondering whether the ears/brain healed in spite of the benzo, or because of it.
My GP recently prescribed me Nortriptyline. He said it could help with some of the issues I'm having as there is a vague distinction between migraines, mental health, tinnitus, etc. The one thing he said that I cannot agree more with was being able to give our bodies the chance to heal. His suggestion for Nortriptyline was to take the edge of mentally so that my body and mind could use the resources to fix what was wrong.I thought the same. I keep wondering whether the ears/brain healed in spite of the benzo, or because of it.
I agree with the general sentiment, that's why I tried a lot of relaxation, guided meditation, body scan, walks, massage, acupuncture. I can relax but the symptom keeps getting worse. I tried a couple of ADs but they spiked the tinnitus, worsening my already battered mood. I would agree with you if the AD didn't risk worsening the very symptom that is causing anxiety etc, but if they do, what do you do? That's why this condition for some is hell on earth, because most medications that would allow you to relax make the symptom worse.My GP recently prescribed me Nortriptyline. He said it could help with some of the issues I'm having as there is a vague distinction between migraines, mental health, tinnitus, etc. The one thing he said that I cannot agree more with was being able to give our bodies the chance to heal. His suggestion for Nortriptyline was to take the edge of mentally so that my body and mind could use the resources to fix what was wrong.
I think that what we don't realize is that when we are in a constant state of anxiety and panic, we don't heal. Instead, we perpetuate the problem both mentally and physically. It's known today that psychological stress manifests physically in a variety of ways. So maybe as much as we don't want to go down the rabbit hole of benzos, SSRIs and other ADs, maybe the break they offer in the short term is exactly what we need to heal and get better, at least for some people.
I agree. It's a very slippery slope and I guess we can never know what helps and what doesn't. Ultimately, if it works for the person, mindfulness and meditation seem to be the best way to handle it. I think some drugs are safer than others in regards to exacerbating tinnitus but still we never know until we try, unfortunately.I agree with the general sentiment, that's why I tried a lot of relaxation, guided meditation, body scan, walks, massage, acupuncture. I can relax but the symptom keeps getting worse. I tried a couple of ADs but they spiked the tinnitus, worsening my already battered mood. I would agree with you if the AD didn't risk worsening the very symptom that is causing anxiety etc, but if they do, what do you do? That's why this condition for some is hell on earth, because most medications that would allow you to relax make the symptom worse.
Also, if you read carefully Don's story, he suffered badly for about 5 years as he was in tolerance withdrawal and even 6 mg of Clonazepam didn't help him, he had to go cold turkey in a clinic. After that he went through seven months of absolute hell before things started slowly improving and reach a hopeful place at months 12-15. He was under prolonged stress for so long that if the recovery had depended on his ability to calm his nervous system he would be dead.
Having said that, I agree with your general statement that getting the nervous system to settle helps. The problem is how do we get there?
Agreed, everyone should try mindfulness before criticising it. I did it for years, but with this level of tinnitus it's super-tough and it hasn't stopped the progression.I agree. It's a very slippery slope and I guess we can never know what helps and what doesn't. Ultimately, if it works for the person, mindfulness and meditation seem to be the best way to handle it. I think some drugs are safer than others in regards to exacerbating tinnitus but still we never know until we try, unfortunately.
I have been taking Clonazepam and Mirtazapine daily for 2 years since the onset of this condition. Trying to get off them, it's hard.Every day for 25 years. They help me. Still praying for better treatments or a cure.
How does music sound for you? I'm just curious how it sounds for others with bad tinnitus. Some say they have severe tinnitus and can still enjoy music. Does music sound distorted?Agreed, everyone should try mindfulness before criticising it. I did it for years, but with this level of tinnitus it's super-tough and it hasn't stopped the progression.
i subbed out the SSRI for Gabapentin and I use cannabis for sleep instead of Ambien but we're in a similar boat. I'm gonna start tapering the Gabapentin soon.Every day for 25 years. They help me. Still praying for better treatments or a cure.
I can speak to this because I've gotten into making music as a direct result of my tinnitus. When it's bad, I am listening to stuff "through the wall of ringing". When it's not bad, the tinnitus is barely a thought and just kicking a synth pad to go drone out some ambient stuff that peaks in the 14-16 kHz range totally takes my mind off it. Almost impossible to control.How does music sound for you? I'm just curious how it sounds for others with bad tinnitus. Some say they have severe tinnitus and can still enjoy music. Does music sound distorted?
Interesting to read that you started making music after tinnitus. Did you ever have problems with hyperacusis over the years?I can speak to this because I've gotten into making music as a direct result of my tinnitus. When it's bad, I am listening to stuff "through the wall of ringing". When it's not bad, the tinnitus is barely a thought and just kicking a synth pad to go drone out some ambient stuff that peaks in the 14-16 kHz range totally takes my mind off it. Almost impossible to control.
Using studio headphones even at extremely low volumes can cause me to notice it more because of the noise isolation but I do not believe they're causing any long term problems, I also listen at very low decibels, generally.
My father who does not have tinnitus but went through age related hearing loss said that starting in his early 40s music sounded "different and not as good" and it took him 5-10 years to get used to it. He's in his late 70s now and still plays guitar and accordion.
My sister has tinnitus, plays violin, wears an earplug on the violin side but still says her ears ring like a bastard for a while every time she's done playing. She's been at that for decades now, and as far as I can tell she still hears well.
I don't think there is one when you're in that deep.The worst thing about Shulman's protocol is he doesn't mention an exit strategy.
Funny, I had the same thing. I started playing banjo after tinnitus as both the twang and the outward focus on a sound that isn't in my head was kind of pleasant.Interesting to read that you started making music after tinnitus. Did you ever have problems with hyperacusis over the years?
I have sound and noise sensitivity and there are things other people tolerate fine that are "non damaging" which I find physically painful but my overall noise tolerance is okay. If I am gonna really absolutely bang on a guitar (even an acoustic), I will wear earplugs (and maybe provide some to family members, too, even if they're in another room :-P) but part of the magic of synthesizers is that you can produce stuff at extremely low volumes if you're in a quiet room and have decent hearing, and you don't even have to really worry about what it sounds like loud unless you're trying to perform somewhere. I'm just a hobbyist, really I got into synthesis because of tinnitus, because I have another friend with tinnitus who used sound synthesis as a way to explore it.Interesting to read that you started making music after tinnitus. Did you ever have problems with hyperacusis over the years?
Strongly disagree; I'm as dismal on the general trajectory of benzos as anyone else, but this just isn't true. I've tapered off benzos twice in my life after years of use, and if we get some other effective tinnitus treatment, I'll calmly and extremely slowly do the same thing again.I don't think there is one when you're in that deep.
Thanks for the info. I'm into electronic music making / synthesis myself, so this gives me hope I'll eventually be able to return to my gear at low volumes if/when my hyperacusis calms down.I have sound and noise sensitivity and there are things other people tolerate fine that are "non damaging" which I find physically painful but my overall noise tolerance is okay. If I am gonna really absolutely bang on a guitar (even an acoustic), I will wear earplugs (and maybe provide some to family members, too, even if they're in another room :-P) but part of the magic of synthesizers is that you can produce stuff at extremely low volumes if you're in a quiet room and have decent hearing, and you don't even have to really worry about what it sounds like loud unless you're trying to perform somewhere. I'm just a hobbyist, really I got into synthesis because of tinnitus, because I have another friend with tinnitus who used sound synthesis as a way to explore it.
My noise tolerance gets worse with anxiety and I think this might be as physical as psychological; anxiety correlates with tight muscles which has all sorts of implications for a certain type of hyperacusis.
Strongly disagree; I'm as dismal on the general trajectory of benzos as anyone else, but this just isn't true. I've tapered off benzos twice in my life after years of use, and if we get some other effective tinnitus treatment, I'll calmly and extremely slowly do the same thing again.
When I was tapering I spent a bunch of time on benzo recovery boards and I noticed a decent number of people in their 60s who had been on for decades deciding to get off so that their end-of-life had more clarity to it, and in almost all cases they were able to do so. Yea, there can be long term problems that take months or even years to fully resolve, and sometimes people end up with permanent problems.
If I live to see 65 it's going to be into the 2040s and I don't have much confidence that the basic structures of global capitalism or federal government will even still function at that point, I am anticipating a much broader and more worryingly existential set of problems than I am looking at now
Don't get on any benzos IMO.I have generalized anxiety but also panic anxiety.
Debating on if I should stay on Buspar or go on Klonopin?
Does Klonopin make you tired?
It's a benzo, and I don't have a good history with benzos. The benefit of Buspar they say is less withdrawal symptoms but the drawback is it takes a while to take effect compared to Klonopin. And Klonopin helps with panic attacks. I'm still debating lol.
I don't think there is one when you're in that deep.
I interpreted this as - if one has severe tinnitus and Shulman's protocol works for them, there really is no point coming off of it because they'll just be back at square one with horrible tinnitus... until there is a better treatment of course.Strongly disagree; I'm as dismal on the general trajectory of benzos as anyone else, but this just isn't true. I've tapered off benzos twice in my life after years of use, and if we get some other effective tinnitus treatment, I'll calmly and extremely slowly do the same thing again.
Yes, not saying you can't come off benzos and be fine afterwards.I interpreted this as - if one has severe tinnitus and Shulman's protocol works for them, there really is no point coming off of it because they'll just be back at square one with horrible tinnitus... until there is a better treatment of course.