Discussion in 'Treatments' started by Chinmoku, Oct 9, 2020.
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Do keep us updated!
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?