Discussion in 'Treatments' started by Chinmoku, Oct 9, 2020.
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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 thought the same. I keep wondering whether the ears/brain healed in spite of the benzo, or because of it.
Sorry, just to clarify, is the effectiveness the same as it once was?
Yes. It could be a placebo effect, I don't want to know. All I know is I do habituate.
I am considering this approach but I'm really hesitant. I see some have been helped and one person in the tinnitus support group I am a part of states this combination helps her.
I have been on Klonopin since late August (30 days of 0.5 mg per day) and then about 3-4 weeks of 0.5 mg cut in half 3x a day. I have been trying to wean off Klonopin for about a month now (down to 0.125 mg per day) and can definitely feel it but trying to push through and I felt the need to updose very quickly.
I have tinnitus in my right ear only and have right side TMJ. It started in January with facial pain which I thought was a sinus infection. I started taking Augmentin (as have done before), then got tinnitus about 5 days later and inner right ear fluid. Fluid cleared up, then my jaw pain started to take off. Jaw pain has gotten better with splints (since 7/1) but no change in tinnitus.
I can see Klonopin and Gabapentin are some serious drugs.
In the category of "What It's Worth", I've suffered from tinnitus since c. 1983; the same time I started developing other significant, chronic, acute (as diagnosed) Ganglion Neuropathy, i.e., a very screwed up Ganglion Nerve trunk.
I can tell you tinnitus is "brain", neurologically related and not 'ear' related. The reason I say this is that an ear infection 'ate away' my left eardrum completely in the 2000s; the same side I experience "both" types of tinnitus. While awaiting eardrum reconstructive surgery, the types, level, etc. of the tinnitus never changed.
I have been on Gabapentin and Clonazepam for ~25 years for the neurological issues. No dosing changes during this time. Gabapentin 1800mg daily; Clonazepam 0.25mg to 0.75mg daily, with 0.25mg being the norm.
Neither have had any impact on the tinnitus but they are just part of a long list of meds I take, both prescribed and directed OTCs. These are in addition to Botox and Lidocaine PUSH, not infusion every 8 to 12 weeks, to keep pain manageable (most of the time). My normal pain score is 7-8. My scale was expanded to 15 in 1997.
Back then, my belief was "Choose to lose; Will to win". In the 2010s, I learned my paradigm was wrong. Today, it is "Will to lose and, Choose to Win". It was learning that "you" (me) can give up... lose. But, it takes a conscious effort to win (never give up, never give in.
(C) Sl F, 2010 (May be used without permission.)
I hope this helps someone.
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.
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.
You take those meds everyday?
Every day for 25 years. They help me. Still praying for better treatments or a cure.
I can also name some of the supplements that genuinely lowered my tinnitus.
Creatine (noticeable difference)
Silica (a little bit)
Curcumin (a little bit)
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 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?
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.
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 have been taking Clonazepam and Mirtazapine daily for 2 years since the onset of this condition. Trying to get off them, it’s hard.
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?
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.
I've tapered all the way off benzos twice, it's miserable.
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.
Interesting to read that you started making music after tinnitus. Did you ever have problems with hyperacusis over the years?
The worst thing about Shulman's protocol is he doesn't mention an exit strategy.
I don't think there is one when you're in that deep.
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.
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
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.
Don't get on any benzos IMO.
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.
Yes, not saying you can't come off benzos and be fine afterwards.
I did after 4 years and felt great.
Second time is much harder.
I assume there is a synergistic effect of Clonazepam and Gabapentin. People who have taken a low dose of Clonazepam for years, I wonder if the Gabapentin slows tolerance to the Clonazepam? I don't know if it's something @linearb or @Carlos1 or anyone who has used this protocol could comment on from experience. Did @linearb in his original stint use Clonazepam on its own and so can compare with his 2nd stint when he added Gabapentin to the mix?
My tinnitus is severe and bilateral. It reacts to many things. My quality of life has been very low for 7 months.