Suicidal

I should get off benzos too but it would be a double fight. I would definitely go through the withdrawal route if I were sure that at the end of the road, the tinnitus would improve. But how can we know...?

 

Wow, that's quite a story @Chinmoku. I have to say it made quite the impression on me. Hopefully it will turn out this way for us as well.

 

We cannot know for sure and this is very destructive. However, there is circumstantial evidence. I thought about your case too. It looks like a weird coincidence that after many years your tinnitus worsened a lot after going on Clonazepam. Of course it could have worsened for other reasons but why just after going on Clonazepam after such a long time? This is rather suspicious.

In my case whether I up or down the dosage it makes little difference. This is compatible with tolerance withdrawal but who knows if it is really that. Two years of Pregabalin may have impacted my GABA system in the inner ear and then Clonazepam may have worsened things further once off the Pregabalin. This is the only hypothesis I have, no other explanation has been offered by the more than 10 specialists I consulted.

For the first time I found a specialist who agrees it would be good to come off the drug if possible and see what happens, but how do I survive such a task when I'm already suffering enormously is beyond me.

Rationally, what we should do is come off the drug and stay off at least one year to see if the situation improves or if there are even brief windows of improvement. If you check Don's story above, he wrote elsewhere that after jumping off cold turkey his tinnitus was so loud at some point that he could barely hear conversation. It worsened further for seven months. It was both in the ears and in the head. The ears tinnitus went away after 14 months and at 2 years he was completely healed. He was put on Clonazepam for tinnitus, which gives me hope that even people who go on benzos for tinnitus can have their tinnitus aggravated due to benzos but can improve once they go off long enough. On the other hand this is not always the case and it's hard to know what to do. But what other choice do we have? Also, benzos keep you calm (when they work) and for some people (not for me) they lower the volume/intrusiveness but they don't really cure or treat the condition directly. Having no such benefit, I don't see the point of staying on them much longer. The problem is that there is a worsening of symptoms as one gets off, this I will have to consider carefully.

The only reason I could see for staying on benzos is staying alive while waiting for FX-322, OTO-413 etc, but if benzos are indeed wrecking havoc with the GABA systems in our inner ears then it's not clear to me it's a good idea staying on them, as ear cells or synaptopathy drugs might not help GABA issues.

It seems impossible for me to survive coming off, even with a slow taper. However Don above went cold turkey from a very high dose after 15 years and recovered. This gives me a spark of hope. Who knows.

 

I hope so, Lurius, with all my heart. I think often of you and of your aspirations and how this horrid condition has impacted us all. Let's hope we find a way out, however hard it can be in the transition.

 

These are the exact same thoughts that I have, I don't even know what to add.
Basically, we have no other choice than try and get rid of these drugs at some point. I've considered staying on them while waiting for regenerative medicine too, but when I'm being honest to myself, the more I up the dosage, the worse it gets after my body gets used to it. Yet I have no idea how I would do without them (it never lowers the sound during the day, but it prevents me from waking up at night).

My guess is there is something going on with brain plasticity that is not working properly while using benzos. During 13 years, even when I had light worsenings of tinnitus, it would always go back to baseline after a few weeks/months top. Or if it didn't go back to baseline, I could easily habituate, thus my brain would put the sound in the background. And when you're not suffering from the sound, even if the sound is there, it's not a problem anymore. No suffering = no problem.

I'm starting to believe that benzodiazepines prevent the brain from doing its normal habituation process, which would explain why at first you feel better while on benzos, but if you become tolerant, your tinnitus comes back with a revenge, making you need to take more benzos to feel better (but still worse than the first time), until the tinnitus comes back again with a revenge, etc. etc. etc.

 

Agreed. While Don was on Clonazepam, his tinnitus started worsening at a stable dose.

We know that the balance GABA/Glutamate regulates signaling inside the cochlea (it's not just a matter of brain, there is a direct impact of GABA/Glutamate in the cochlea). Benzodiazepines disrupt this balance. We need to get off to have the GABA receptors in the cochlea upregulate and thus the GABA/Glutamate balance start working again naturally. How can we do that? Benzo reduction should be very slow and that's why everyone recommends a geometric progression rather than an arithmetic one. This should contain exitotoxicity and permanent damage. However, Don could not reduce progressively, he was having paradoxical reactions and had to jump off. He went through 7 months of pure hell, followed by 6-7 more hellish months and then finally recovery. I can't afford that, I have kids to help grow. There is also a debate on whether natural GABA precursors, modulators and enhancers can help with benzo withdrawal. If you go to BenzoBuddies the consensus is no, you should not interfere with the withdrawal process using things like L-theanine, Taurine, Bacopa Monnieri, Valerian, Chamomile etc. On the other hand, Peter Smith disagrees with this and says you can use herbs to help withdrawal without compromising it.

He has a video on this.

Overall I think we need to do this experiment, I don't know how but we have to try to come off Clonazepam and stay off for long enough to understand whether upregulation and re-growing GABA receptors in the cochlea can help us renormalize the tinnitus from monster level to normal levels allowing for habituation.

I don't know exactly how this relates to plasticity. Most people talk about GABA effect on the brain rather than inner ear specifically (Peter Smith above included) so it's very difficult to understand what Benzos do to the inner ear.

 

As a hypnologist, neural plasticity is of high interest to me, because helping a person to find her own way, via hypnotic transe, to "re-wire" her brain is basically what we do during a hypnosis session.

Although tinnitus emerges from cochlear damage, it is the interaction between the brain and the ear that is an issue with tinnitus.

As to your question, this is how it would relate to plasticity:

"The GABA Receptor Complex and Benzodiazepines Receptors: γ-Aminobutyric acid is the major inhibitory neurotransmitter in the mammalian central nervous system, eliciting its physiological effects through interaction with several distinct classes of cell-surface receptors: GABAA, GABAB, and GABAC receptors. The GABAA receptor is the most abundant and is a member of the super family of ligand-gated ion channels. The interaction of GABA with this receptor determines the opening of the intrinsic chloride ion selective channel, which is followed by an increase in chloride flux, with the result of a hyperpolarization of the neuronal cell membrane and a concomitant decrease in neuronal transmission.

This means that under BDZ action neural networks are, in general, less responsive. At this point, we think that this fact implies not only a reduction in the mental performance of the individual, which is understandable due the known effects of these drugs, but that there may be also restrictions for the development of the network itself for adapting to new life challenges. The ability for neural networks and systems to re-configure their internal connectivity in order to modify its performance is known as neural plasticity."

Full link:

http://www.remedypublications.com/o...-development-and-adaptation-processes-291.pdf

Although I'm struggling with all the technical terms (English is not my mother tongue), from what I understand, using benzodiazepines for tinnitus is basically the worst idea ever and until a cure is found.

I would compare it to scratching when it itches. It feels good to scratch but you're actually making the skin itch more.

If I had known about hypnosis before I started Clonazepam, I would have first gone through the hypnosis route or any kind of way to naturally rewire the brain (meditation, sophrology, you name it) and never taken benzos.

 

I've been using Alprazolam once a week for about three months to give myself some help when I have spikes, either from lasering or accidental noise exposure. I feel comfortable doing this based on the experience of people like @flobo and others who have used short effect benzos judiciously over long periods of time - the half-life is 6-11 hours depending on what source one refers to.

Do you recognize a difference between continuous use of Clonazepam, where it is present in the body at all times for months or years, as compared to occasional use of Alprazolam, where it fully leaves the body for some time before being re-administered?

 

I would say it cannot compare, because we are neither using the same molecules nor in the same way.

I am just saying that in my case, I shouldn't have started benzos and stayed on them that long. They are drugs that aren't supposed to be taken on the long run.

If you are using it once a week and you're feeling OK, well that's really good It is just important to be aware that they are highly addictive, and you won't know before you get in trouble

 

@Pitseleh means tiny

 

It does.

 

Today I feel like I've gone insane. It's just not something you can ignore. I challenge you to ignore me while I have you pinned to the ground and I punch your face repeatedly. That's how tinnitus is, no joke.

 

I've realized about 3 months in that the worst part currently for me is the dynamic nature of the tinnitus - it does not allow me to habituate. Oscillating tones like the EEEEEEEEEEEEEUUUUUUUUUUUU, EEEEEEEEEUUUUUUUUUUU, distract my brain. Compounding that is the fact that each day I seem to have different "instruments" assembled - even now there is constant novelty.

I feel like if I just had one constant tone, I could adapt that as my new silence, but this continual change is maddening...

 

Not sure why I didn't unplug my fire alarm as soon as I got home. This exposure seems to have taken me back 2 months of the 3 months I've been recovering in terms of reactivity, hyperacusis pain, tinnitus loudness, tonality vs atonality. Fuck setbacks... even with Prednisone and Xanax today is just a gauntlet of suffering.

 

I'm on really high dose Prednisone right now and have been on it for a while. Prednisone is an absolutely brutal drug for our bodies and minds, even if it can help the ears.

 

Nice man, I hope it's working for you! For me this is my second time and I'm noticing a weird U shape with loudness on the y-axis and time on the x-axis, whereby at first the Prednisone induces a large dropoff, but then it slowly returns over a matter of days. Not really sure why that is but it seems to be a recurring theme for me.

 

I also notice fluctuations and I think it's because the Prednisone is really good for the inflammation, but really bad for the brain. Not to mention really bad for electrolyte balance, blood pressure, etc. After all, to have hyperacusis and/or tinnitus, though one typically has an ear issue, they must also have a maladaptive brain.

 

Time to drop shrooms and LSD and blow my maladaptive brain up.

I was taking Lion's Mane mushroom for months before my tinnitus was induced. It's just a pet theory but because my noise exposure was not extremely loud but my tinnitus is moderate/severe, I think via BDNF/neurogenesis I may have ingrained tinnitus in my brain. There are stories of people inducing central sensitization syndrome from ingesting Lion's Mane, which basically lowers the nervous system's tolerance for touch, making innocuous physical contact very painful. To me, that reads as an analog for tinnitus/hyperacusis, but who knows...

 

$300 spent on a tank of 99.8% helium.

Damn shortage.

 

I prefer as Will Sedley puts it: "a brain that's too good at predicting."

 

I want to die. I have been surviving with tinnitus since May 2019 and it isn't getting any better. This is no life. I can't picture myself living the rest of my life with this torture. The only possible hope I may have is FX-322 and I can't purchase any of it because "reasons".

I can't wait for 3+ years until they deem us worthy of purchasing the only possible way we can keep on living.

I am strongly considering just ending it. I don't know how long I will last, but I fear it won't be long. I wanted to enjoy life a bit longer but I can't take the torture anymore.

 

My tinnitus is so loud right now my only outlet is to come here and vent. It's an insane level of volume and I hate it...

 

Do nerve meds like Lyrica or Gabapentin help any? Sometimes it’s hard to know what to do to stop the suffering. Yesterday I had some weirdish swirling hissing noises in my head that were hard to bear.

 

I haven’t tried them yet for tinnitus - hyperacusis is really not a problem. Have you had any benefit from them?

 

@FGG @Greg Sacramento

What would be a remedy for this chronic excess Glutamate condition? Magnesium citrate/glycinate 400mg or something more invasive?

 

Some people have success with these drugs making tinnitus more bearable and Gabapentin is part of the Abraham Shulman protocol with Clonazepam, advocated for some types of tinnitus based on neuroimaging. However there is considerable risk of physical dependence and for some people tapering Pregabalin is worse than tapering benzos. Damned if you do, damned if you don't. God help us all.

 

It's not as simple as "excess Glutamate". For instance, people with benzo withdrawal (I don't know your history, I'm giving this as a for instance), have a GABA/Glutamate imbalance which is technically more of a GABA problem.

Neuroexcitability in the cochlea involves excess Glutamate stimulation at the IHC/ SGN junction but there isn't a treatment for this yet. A few different approaches are being tried in trials.

One is blocking the NMDA receptor (Otonomy has an intratympanic drug in trial for this called OTO-313 which reduced tinnitus in the population they tested--under 6 months. They hope to expand that time frame though per recent presentations).

Some people have been treated systemically with Ketamine and related drugs (blocks the same NMDA receptor) for this with mixed results (seems to work better acutely). There are people who have had very dramatic results with this.

There are systemic prescription Glutamate blockers of various types (mostly Parkinson's drugs) but they can have a ton of side effects. Some people with tinnitus have had success however and others haven't. I think there are threads on this here.

Another drug is trial is Sound Pharmaceutical's SPI-1005 which seems to dampen Glutamate related hyperexcitabilty without binding to the receptor itself. It gas passed two trials for Meniere's but is being tested for acute noise induced injury too now.

I think the success or lack of in these treatments depends on how much of a component their tinnitus is due to neuroinflammation/ excitation. It seems like everyone acutely is damaged by Glutamate surges and it contributes to tinnitus (which is a big reason for many/most tinnitus greatly fades during the first year or two) but over time, unless you have a more chronic inflammatory (and i don't mean necessarily "classic inflammation" with vascular recruitment of immune cells), this should be less of the issue and structural losses should be the bigger factor.

Magnesium is probably one of the better OTC things you can try to help (because it does make the NMDA receptor have less affinity for Glutamate) but I would say its role would be minor.

Eg: Phase 2 study examining magnesium-dependent tinnitus

I do wonder if IV Magnesium would be more helpful though (dangerous if not done under medical supervision).

What are your thoughts, @Greg Sacramento?

 

@Chinmoku is right on his post. I had exercised my neck over the edge of my bed the other day and it was sore this morning. I believe I took Gabapentin 600mg plus Clonazepam .5mg. Also I used a towel over the back of my neck to do Dr. Mandell’s method. I’m doing pretty good right now. There is quite a few YouTube videos on neck tinnitus. I hope you can find relief as I know how brutal it can be.

https://www.tinnitustalk.com/threads/tinnitus-tmj-headaches-neck-pain-facial-pain-etc-—-possible-treatment.500/page-38#post-306391

 

In the time I've been a member of this forum, I've really tried to avoid this thread let alone post on it. But after eight months of a screaming, piercing hell, I'm exhausted. Lately I've noticed that I have been experiencing relatively better days more frequently. Yesterday, I had about four hours of comparative respite from the T, which is a first. The fact of the matter is my tinnitus always comes back with a vengeance. It's always loud and it's always intrusive, even during the short and infrequent times that its not, if that makes any sense.

I'm just growing more and more tired and some days don't know how to channel the stoicism required to keep pushing on. Living with unmaskable tinnitus isn't living at all, it's a miserable existence and no matter how hard I try to accept what has happened and re-frame my mindset, I keep coming back to a terribly unwanted way of thinking.

I truly hope regenerative methods such as FX-322 return very positive phase 2 results this coming year as they relate to tinnitus. I don't want to get my hopes up and remind myself that there's a chance it won't do anything for us at all, but if the news is good, maybe it will help myself and others find the strength to carry on until a full release.

I just really needed to vent as I haven't spent much time in the support section during the last three months, but I'm drawing more tired as the days pass on. Many nights I go to sleep and pray that I either wake up without tinnitus, or simply don't wake up at all.