Benzodiazepines (for Life) as Treatment of Tinnitus? Is It Sustainable?

[grate_biff]

I have been a member of this board for over 2 years and this is the first tread I am starting!
This is mostly about me and my situation and what I have come to, but I am sure many can relate.
I really feel that I need some input on this.

After two and a half years of living with this painfully piercing, high pitch grating noise in my right ear(brain) along with debilitating H, it has come down to this! Kill myself, to end the suffering, or start a regime of continuing use of benzo, as to me it is kind of a miracle drug in fighting T and to an extent H.
Still both options scare me.

I´ve tried to avoid it coming down to this by trying hearing aids, noise generators, CBT, meditation/mindfulness, acoustic -neuro -modulation, acupuncture, physical therapy, chiro, and many different drugs including AD´s, glutamate antagonists, dopamine agonists, beta-blockers, anti-histamines, anti psychotics, CBD- oil and just trying to stay busy and involve my mind with different tasks. Everything to no avail, I get no breaks and habituation seems impossible.

Like many other on this forum I have also been researching anti-epileptic drugs as well, I have tons of Keppra and Trobalt next to my bed, but never dared to try it after reading many horror stories regarding their side- effects. I finally landed on Lamotrigine as a possible helpful drug and
I´m currently on it, sadly with no positive effect so far.

The only thing that will alleviate, in fact, at times totally quiet my T and to some extent ease the pain of my H, is benzodiazepines. In my case Diazepam. Only 10 mg will make it livable for 2-5 days. Often the positive effect won´t emerge until the third day after taking it which is surprising and has made me ponder if it is the muscle-relaxant properties of the drug being the reason.
Anybody else experienced this?

So, why is this still a difficult decision?

Well, I´m very sceptic to its sustainability. One will get tolerant to the drug, and it will take up-dosing to sustain its effect over time. The most scary thing is of course the withdrawal symptoms if one has to/tries to renounce. This is nothing new to me though as I´ve been more or less in protracted benzo withdrawal since 2012, thus I´m taking it very sparingly indeed. I´ve been suffering with general anxiety for most of my life and my typical encounter with doctors can best be depicted like this:


Never took it every day though and never at high doses. But over an extended period of time, 18 years.

When it comes to benzo and suppressing T, I think one will have take keep a regular and stable regime in order to keep the GABA levels constantly elevated in order to sustain neural inhibition within the brain.
The mechanism of action is described in this video, I find it very interesting, indeed(many may have seen it already though):


There is a member on this forum that have pursued such a treatment successfully for many years. He/she is supplementing benzo with two different glutamate blockers/modulators because of the brains natural reaction of wanting to counteract inhibitory GABA- with excitatory Glutamate- neurotransmitters. This because the brain wants balance. This mechanism is also what generates T too isn´t it? Filling in the gaps and balancing out for the lack of input. With no regards for its host. Stupid brain

Anyway, the doctor prescribing this is a psychiatrist who specializes in the treatment of all disorders of addiction. He should know what he is doing, right? Still this goes against common medical practice. The shortage of research in long term benzo use in treating T is also very limited.

Metaphorically, one needs to activate the brakes and ease off of the gas at the same time, thus suppressing T, in my case, effectively. In theory, this sounds ingenious to me, still I´m questionable to it´s sustainability and long term overall uncertainty.

But considering the other option, the choice should be an easy one!

Maybe me and my doctor simply are not brave enough to pursue this, even though I think he is ready to comply as he sees how I suffer, he is advising against it.

So, in summary, my life is torture where sounds have become my biggest enemy, both T and H wise. And I just can´t go on any longer like this.

If I thought this was purely a phycological problem I wouldn´t have written this. I don´t believe I am a catastrophic thinker. Im quite rational about all of this, I have just been living with severe unbearable pain for so long as many others on this and other forums have. You read about it every day!

I am, of course, aware of all the research going on now that can one day help us all. And this is mainly the reason for hanging on. I just can´t wait for any research to be fruitful. And the waiting game, the if´s and the when´s is in itself troublesome. I´ve reached a point of total physical and mental exhaustion.

Thank you for reading this! It´s not a "happy" tread, but maybe something fruitful can emerge. I know there are a a lot of smart and investigative members on this forum that may add something to this and the kind of treatment I am proposing.

I suggest this tread to be where we can discuss this, share our experiences, comprising what kind of benzo works for you/or not, what dosage will it take to find relief, what kind of relief are you experiencing and for how long etc..
All inputs and sharing of own or anecdotal experiences with benzo as a treatment is appreciated.

My feeling right now is I´m damn if I do, and damned if I don`t, regarding both options, really!
I find it extremely difficult and it is all I have been thinking about the last few months.
I just had to let it out!
Thanks again!

 

[PaulBe]

If you've already researched the threads here that relate to benzos you'll know that they apparently cause it, except for when they apparently cure it....and all points in between.

 

[ChineseHazel]

Please check this out.
https://www.tinnitustalk.com/thread...om-anxiety-tinnitus-associated-anxiety.22257/
I think it may bring something new for you. Best wishes

 

[grate_biff]

If you've already researched the threads here that relate to benzos you'll know that they apparently cause it, except for when they apparently cure it....and all points in between.

Sure, but that does not help. Down-regulated GABA- receptors(in withdrawal) can probably cause T. Elevated Glutamate levels in benzo-withdrawal probably plays a part to. But I´m sure there must be a underlying damage to the cochlea first. As explained in the video, they claim that T stems from excited fusiform cells from the Dorsal Cochlea Nucleus and GABA as an effective way to stop this excitation, thus quieting T.
To me its like living in two different worlds, on or off benzo, regarding T and H.
So, to me, the big question is to find a way to make this as sustainable as possible i.e. prolong its effectiveness and minimize side-effects.

My dilemma is that I have severe HL and T and being in protracted benzo-withdrawal at the same time. I´ll tell you it´s no picnic! I have waited since decmber 2014(when I relapsed) to see how much the benzo-withdrawal contributed to the severeness of my T and H. Though it has gotten a little better, my ears really feel destroyed.

I realize these are all difficult questions to answer, and maybe there aren´t any.
The fact that this tread have had 56 views, but only one replay, which was a very general take, I might add, shows this.
Maybe people just see this as just another benzo-tread and don´t bother reading it.
And maybe it is.

 

[ChineseHazel]

@grate_biff
I have been taking Tandospirone 30mg per day for 3 months.I haven't saw the side effects.Maybe you can ask your doctors about it?

 

[3ri0w]

The only thing that will alleviate, in fact, at times totally quiet my T and to some extent ease the pain of my H, is benzodiazepines. In my case Diazepam. Only 10 mg will make it livable for 2-5 days. Often the positive effect won´t emerge until the third day after taking it which is surprising and has made me ponder if it is the muscle-relaxant properties of the drug being the reason.

Do you mean you take diazepam one day and 3 days later your ears are better? And it lasts for 2-5 days after that third day?

 

[grate_biff]

@grate_biff
I have been taking Tandospirone 30mg per day for 3 months.I haven't saw the side effects.Maybe you can ask your doctors about it?

The problem is the anxiety you get from benzo-withdrawal is very much different to generalized anxiety and even the anxiety one will experience from the T and H itself. All though I´m sure much of my anxiety stems from having this affliction, but I really feel it is the pain of T and maybe especially the H in itself that kills me, not the anxiety that goes along with it. Maybe that is difficult to understand. But pain and anxiety are two different things.

I´m all ready on two different AD´s and its called "California Rocketfuel" for gods sake, and is considered a very potent way to fight depression and anxiety. I do not think they do much for me. In addition I´m on Lamotrigine, which also supposed to have anxiolytic properties for many different reasons. It also seems to be futile regarding my anxiety. Benzo-withdrawal is a very strong force indeed.

Still it is the brutal pain of T and H that kills me.

 

[Fabrikat]

Never took it every day though and never at high doses. But over an extended period of time, 18 years.

I think you've answered your own question. If you've taken a benzo for this long and it works for you with no real issues, then do as you've always done. I'm no benzo expert, but 10 mgs over two to five days, doesn't sound like a lot to me. However, you are right to be concerned about withdrawal and loss of efficacy over time. Perhaps your regime could include short periods of abstinence. You have a sympathetic doctor who's willing to supervise your regime. As long as you don't start increasing your doses, sounds like you're fortunate to have something that at least helps. See what other folk have to say. Benzos seem to affect everybody in different ways.

 

[grate_biff]

Do you mean you take diazepam one day and 3 days later your ears are better? And it lasts for 2-5 days after that third day?

Well, I mean it differs and it is very confusing. For a while I could set the clock to it not having any effect until the third day which really baffled me. The last few times it seems to work right away and last from 2-5 days.
I only take benzo maybe every 2 to three weeks. Sometimes I´v gone months without.
Still the, tremors, shaking and anxiety won´t let go.
I really have a love/hate relationship with this drug, as I am sure many others have.
To me, they do miracles with my T though, which makes them even harder to avoid.

 

[3ri0w]

Well, I mean it differs and it is very confusing. For a while I could set the clock to it not having any effect until the third day which really baffled me. The last few times it seems to work right away and last from 2-5 days.
I only take benzo maybe every 2 to three weeks. Sometimes I´v gone months without.
Still the, tremors, shaking and anxiety won´t let go.
I really have a love/hate relationship with this drug, as I am sure many others have.
To me, they do miracles with my T, which makes them even harder to avoid.

What do you mean tremors and shaking? Do you mean like you go to withdrawals every time you use diazepam one time?

 

[grate_biff]

I'm no benzo expert, but 10 mgs over two to five days, doesn't sound like a lot to me.

I agree, but still they seem to maintain my withdrawal. But there is no way to be sure. Maybe taking it sparingly is like shooting myself in the foot as I´ve read that will down regulate your receptors even more than if one takes it regulary. Then of course, what will happen in the long run? And what if you never stopped? and just kept updosing, like one of our member have done for years, so far without any problems and totally free of T?

Benzos seem to affect everybody in different ways.

You are right about that. Thats why I thought this tread could be useful and enlightening.

 

[grate_biff]

What do you mean tremors and shaking? Do you mean like you go to withdrawals every time you use diazepam one time?

Well, thats what it feels like, but I am suffering from Protracted withdrawals (kindling effect) and benzo will of course alleviate it for some time. But the effect it has on my pain with T and H is what gives me the most relief.
Without T and H, the withdrawal Im thinking would be a walk in the park as it overshadows everything in my life. I have a theory that in order to be well from withdrawal, one has to find spaces of time to be able to relax. I never relax bc of T and H. Even a long run of jogging does not help. And that used to make me very relaxed indeed.

 

[Pleasure_Paulie]

According to my Psychiatrist, many people do take benzodiazepine for their life for conditions like epilepsy. Like you I've tried many drugs, including Klonopin and Xanax which both don't give me silence; though I'm tempted to give Valium a try if it helps you! I'm currently on Pramipexole (dopamine agonist) and overall liking this drug.

 

[Fabrikat]

The thing is, you're taking Mirtazipine, Venlofaxine and Lamotrigine. How can you really know exactly what the true effects of Diazapam is having on your body, unless you take it in isolation? No wonder your doctor isn't too keen about adding more drugs to the mix. It's cocktail hour at your house!

 

[Fabrikat]

I'm currently on Pramipexole (dopamine agonist) and overall liking this drug.

I know this isn't the correct thread for this discussion @Pleasure_Paulie, but when you say you're 'liking this drug', does that mean you're enjoying Pramipexole's overall effects on your body, or is it actually reducing your perception of tinnitus?

 

[grate_biff]

I'm currently on Pramipexole (dopamine agonist) and overall liking this drug.

I know you are, I started that myself. But my GP wanted me to stop that when I wanted to try Lamotrigine. I did not reach higher dosage than 3*0,088 mg

verall liking this drug

Could you please elaborate!

 

[Pleasure_Paulie]

I know this isn't the correct thread for this discussion @Pleasure_Paulie, but when you say you're 'liking this drug', does that mean you're enjoying Pramipexole's overall effects on your body, or is it actually reducing your perception of tinnitus?

There is a dedicated thread for the medication here -- https://www.tinnitustalk.com/thread...onist-pramipexole-in-presbycusis-patients.84/ and happy to answer any questions there so its easier for new members to find information if required

 

[grate_biff]

The thing is, you're taking Mirtazipine, Venlofaxine and Lamotrigine. How can you really know exactly what the true effects of Diazapam is having on your body, unless you take it in isolation? No wonder your doctor isn't too keen about adding more drugs to the mix. It's cocktail hour at your house!

You are right, and I really feel awful about the regime of drugs I´m on. Been on Effexor For 17 years and Mirtazipine for 6. Don´t seem like they are doing much for me any more, even though the latter helps me sleep, only benzo have any real effect. Still the AD´s are also hell to wean off of. Severe withdrawals. As I understand it, generally withdrawal symptoms are connected to elevated glutamate levels within the brain, which in turn elevates stress hormones. Thats the reason for trying Lamotrogine to maybe help me get off of the AD´s.
At least, in theory it seems like a reasonable way to go. And believe me, I´ve done my research.

 

[linearb]

I may yet go back on Klonopin, but keep in mind that I took it at 2mg/day from the ages of 19-25, and have some suspicion that my brain basically developed to depend on it. That may put me in a different situation than other people.

I would absolutely rather take a benzo than a bunch of other kinds of drugs (SSRIs probably, definitely antipsychotics, seizure drugs) but that doesn't make it an easy decision. It reduces my tinnitus significantly and also changes my outlook such that I just don't obsess about sensory stimuli the same time.

I have other tricks up my sleeve first, though -- I'm going to pursue IV Ketamine infusions this fall to see if that makes a difference. If not, I might think about first trialing Klonopin for one week out of every 6, which should give enough time in between for near-complete clearance of the drug. I am also going to look into "2 weeks on klonopin, 1 week Flumazenil detox, 2 weeks off, repeat".

Basically the stuff still "works" amazingly as far as reducing (though not eliminating, by a long shit) the intensity of tinnitus and also close to obliterating the fixation and distressed. I'd still be a loooot more comfortable trying to find those happy GABAergenic states through meditation and herbalism, but so far I have yet to find a protocol which works nearly as well.

 

[TuneOut]

Maybe taking it sparingly is like shooting myself in the foot as I´ve read that will down regulate your receptors even more than if one takes it regulary.

This sounds counterintuitive. Where did you read this?

 

[grate_biff]

This sounds counterintuitive. Where did you read this?

Think I read it on benzobuddies. No documentation to back that up. I agree it sounds strange. But what is true is that taking benzo intermittently can give you what is called(transelated from norwegian) "breakthrough anxiety", ie once the effect wears off your anxiety will be even worse than it was in the first place. And if one do this over a long period of time, it can probably trigger what is called the "Kindling" effect. I´m positive this is what have happened to me.
https://en.wikipedia.org/wiki/Kindling_(sedative–hypnotic_withdrawal)

This is of course dependent on duration and dosage! And everyone reacts very different indeed.
There are even people that are not able to be addicted to benzo or alcohol. This is also something I´v learned anecdotally. Have not researched it. If true, it would be very interesting to incorporate this effect chemically through drugs and make benzo-use more sustainable.
Anyway, that is the big question I´m trying to find : "Is that possible?"

 

[grate_biff]

I might think about first trialing Klonopin for one week out of every 6, which should give enough time in between for near-complete clearance of the drug. I am also going to look into "2 weeks on klonopin, 1 week Flumazenil detox, 2 weeks off, repeat"

I´m not sure if complete clearance of the drug in your system is what will make it more sustainable though. I think its all about how our neurotransmitters and receptors in the brain takes time to "heal" and balance out after benzo use. And in my experience and probably yours, it is a painfully slow process.

Thank you so much for bringing Flumazenil to my attention, I find that very interesting indeed. This have somewhat gone passed me in my research. I know it is used to counteract overdose, but after a closer look it is actually used to up-regulate GABA receptors and actually stimulate growth of new receptors.
https://en.wikipedia.org/wiki/Flumazenil

"In Italy, the gold standard for treatment of high-dose benzodiazepine dependency is 8–10 days of low dose, slow infusion of flumazenil."

I would think this also aplies to long-term benzo dependency!

"Flumazenil was shown to produce significantly less withdrawal symptoms than saline in a randomized, placebo-controlled study with benzodiazepine dependent subjects. Additionally, relapse rates were much less during subsequent follow-up"

"Laboratory research studies using tissue cultured cell lines have shown enhancement of the benzodiazepine binding site after chronic treatment with flumazenil where sites have become more numerous and uncoupling/down-regulation of GABAA has been reversed. After long-term exposure to benzodiazepines GABAA receptors become down-regulated and uncoupled. Growth of new receptors and recoupling after prolonged flumazenil exposure has also been observed. It is thought this may be due to increased synthesis of receptor proteins"

Wow. This is something I really need to discuss with my GP. How did this get passed me?
so much @linearb. This really gave me hope, both to maybe handle my present withdrawal problem and for future help should I choose to go for a constant regime for a while and then stop, for instance if Frequency TX proves successful. Maybe what you say about taking the two every other week is a sustainable way to go as well.
Did you come up with this on your own?

This all sounds to good to be true, though!

 

[linearb]

This all sounds to good to be true, though!

It may be. The main place in the US offering Flumazenil detox is the Coleman clinics, and I have seen some ugly things about them online as far as being profit driven and prioritizing getting paid over good outcomes:
http://www.benzobuddies.org/forum/index.php?topic=21764.0

[
Wow. This is something I really need to discuss with my GP. How did this get passed me?
so much @linearb. This really gave me hope, both to maybe handle my present withdrawal problem and for future help should I choose to go for a constant regime for a while and then stop, for instance if Frequency TX proves successful.

It's good to be able to think outside the box, and remaining positive against all odds is pretty important to the benzo thing.

Maybe what you say about taking the two every other week is a sustainable way to go as well.
Did you come up with this on your own?

No and yes. I was for a long time very active in various benzo withdrawal oriented boards, so I know a lot about both the chemistry and people's anecdotal experience.

I have experimented with Flumazenil, but only sublingually; I did this without medical supervision, and thus was not confident about trying to experiment with injectable drugs. I was also well past the point of acute withdrawal by that time, and was mainly curious to see if there would be any impact on my tinnitus (no).

Word of caution: do your homework. Older data indicating that Flumazenil is a pure antagonist at the BDZ receptor may be incorrect. There is conflicting data indicating that it's a partial agonist/antagonist, which changes some of the theory here a bit. That said, some people certainly do seem to be able to withdraw using these protocols, and if I decided to go back to regular benzo use, I would be very tempted to try 6-8 weeks on followed by one of these 8-day infusion protocols, to see what the comparison is with a more protracted, painful withdrawal.

Benzos are really, really bad news -- they also "fix" nearly every problem I have with the world, at the expense of leaving me horribly dependent on them for regular functioning. They are unlike any other drug, I would not call them euphoric or even especially intoxicating* or altering. Yet, they change the fabric that reality is woven out of in a subtle, but dreamy and calming way.

* high doses are intoxicating but also not medically useful

 

[grate_biff]

Benzos are really, really bad news -- they also "fix" nearly every problem I have with the world, at the expense of leaving me horribly dependent on them for regular functioning. They are unlike any other drug, I would not call them euphoric or even especially intoxicating or altering. Yet, they change the fabric that reality is woven out of in a subtle, but dreamy and calming way.

I could not agree more! It just very effectively makes you feel normal with minimal side effects. Until it hits you with a bang of dependency and hellish withdrawals cause every medical professionals tells you to wean off of it and just wait it out. And it can be a very long and painfully wait, indeed!

And, I agree I need to definitely research Flumazenil further and talk to my doctor.
The problem though is that medical professionals seem to live in the dark ages when it comes to this.

It´s weird that this is a common treatment option in Italy, but not a single one I´ve been in contact with over the years, have even mentioned Flumazenil. I understand that this drug only exits in IV- format and should be administered at a hospital. So I suspect a lack of/will of resources could be a keyword here.


Thanks again for bringing this to my attention!
It was really something like this I was hoping for when i made this tread

Still, T and H is a bitch though. But I believe a calmer CNS equals T and H to be less painful.

 

[linearb]

I expected Flumazenil to be anxiety producing, but if anything it was slightly sedating (though also caused an odd sort of insomnia, also without anxiety). Just based on that, the agonist/antagonist idea makes sense to me.

 

[Ambassador]

Anxiety brought on by Benzo withdrawal scares me more than tinnitus. Clonazepam is pretty effective for me but the side effects aren't worth it, for me. I found out I can live with tinnitus but I found it very difficult to live with the anxiety and depression that drugs seem to cause me. Maybe I've overly sensitive but I don't tolerate any psychotropics very well and I think I am better off in the long run for that. Tinnitus is enough of a problem to deal with without adding a list of side effects too.

 

[grate_biff]

Tinnitus is enough of a problem to deal with without adding a list of side effects too.

I´ll tell you, Tinnitus, hyperacusis and protracted benzo withdrawal symptoms at the same time is hell on earth.
I really can´t understand how I have survived it so far. Especially since there is no help to get for any of the ailments. Its a long and lonely road.

 

[Believin' Steven]

According to my Psychiatrist, many people do take benzodiazepine for their life for conditions like epilepsy. Like you I've tried many drugs, including Klonopin and Xanax which both don't give me silence; though I'm tempted to give Valium a try if it helps you! I'm currently on Pramipexole (dopamine agonist) and overall liking this drug.

Can you go into detail of the effects of this drug? My brother takes it for restless leg syndrome and it works for him in that regard. Thinking about inquiring about it with my doctor.

 

[TuneOut]

I´m not sure if complete clearance of the drug in your system is what will make it more sustainable though. I think its all about how our neurotransmitters and receptors in the brain takes time to "heal" and balance out after benzo use. And in my experience and probably yours, it is a painfully slow process.

Thank you so much for bringing Flumazenil to my attention, I find that very interesting indeed. This have somewhat gone passed me in my research. I know it is used to counteract overdose, but after a closer look it is actually used to up-regulate GABA receptors and actually stimulate growth of new receptors.
https://en.wikipedia.org/wiki/Flumazenil

"In Italy, the gold standard for treatment of high-dose benzodiazepine dependency is 8–10 days of low dose, slow infusion of flumazenil."

I would think this also aplies to long-term benzo dependency!

"Flumazenil was shown to produce significantly less withdrawal symptoms than saline in a randomized, placebo-controlled study with benzodiazepine dependent subjects. Additionally, relapse rates were much less during subsequent follow-up"

"Laboratory research studies using tissue cultured cell lines have shown enhancement of the benzodiazepine binding site after chronic treatment with flumazenil where sites have become more numerous and uncoupling/down-regulation of GABAA has been reversed. After long-term exposure to benzodiazepines GABAA receptors become down-regulated and uncoupled. Growth of new receptors and recoupling after prolonged flumazenil exposure has also been observed. It is thought this may be due to increased synthesis of receptor proteins"

Wow. This is something I really need to discuss with my GP. How did this get passed me?
so much @linearb. This really gave me hope, both to maybe handle my present withdrawal problem and for future help should I choose to go for a constant regime for a while and then stop, for instance if Frequency TX proves successful. Maybe what you say about taking the two every other week is a sustainable way to go as well.
Did you come up with this on your own?

This all sounds to good to be true, though!

Could it be that your tinnitus is worse because you have developed a protracted withdrawal syndrome? And that part of the benefit of valium for you is the result of reversing this withdrawal? If so, one possibility could be to discontinue all benzo use and start a course of fumazenil. Basically just try to restore your system back to normal.

 

[grate_biff]

Could it be that your tinnitus is worse because you have developed a protracted withdrawal syndrome? And that part of the benefit of valium for you is the result of reversing this withdrawal? If so, one possibility could be to discontinue all benzo use and start a course of fumazenil. Basically just try to restore your system back to normal.

Probably the withdrawal acted as a trigger and amplifier regarding my T and H.
I had a terrible acoustic trauma, using headphones, while working with video-editing on the 23 of september, 2014.

Five days later, while playing golf, BANG the T appeared. My H took about 6 month to develop though.
In december, the same year, the withdrawal relapsed, probably bc of excessive alcohol-consumption, and after a bad flue everything took a turn for the worse and I´ve been in hell ever since.

Regarding benzo it really is all or nothing for me now. Difficult decision, as I´m sure you´ll understand if you have read all my posts, indeed! !

I will certainly have a talk with my GP if he would consider Fumazenil being effective in what I would think is a late stage of withdrawal. Still hell though, and I am physically and mentally worn out.

Thanks for your input!