OK, so I give the ENT two choices...either control these horrible sensations (+distortions) in my right ear or risk me ending it

[Flynnal]

I've been taking clonazepam and antihistamine on and off for the last 5 years, and need to continue taking it to take the edge off the nasty sensation (and distortion) I am experiencing in my right ear and have been for a while now, it has gotten worse over the last few years, it all started in 2020 but has gotten worse.

I can see on my audiogram that there is a much bigger difference at 250Hz and 500Hz, which is consistent with what I'm experiencing. It could be conductive and it could be sensorineural. I am guessing it's a nerve involvement because taking the clonazepam at say 1mg and the antihistamine at 25-50mg usually resolves a lot of the miserable sensations and the distortions. Sometimes 0.5mg is effective, sometimes not, but 1mg is almost always effective.

The MRI came back, no nerve lesions were found (yes, there probably were but they were just not detected by the MRI though) apparently there is some dilation of the saccule which connects the cochlea to the vestibule. And here's the thing, it's in BOTH EARS. It's +0.2mm bigger in the left side than maximum normal range allows for, and +0.4mm bigger in the right side. This is likely not the only thing causing this problem. I feel a nerve sensation, like a burning sensation on the right side. I KNOW this is nerve damage, and the hyperacusis that it causes is significantly dampened by clonazepam at around 1mg. The antihistamine helps with vertigo and imbalance.

Over the last few days I've become increasingly angry, agitated, and smashed up a few things in my home. I broke two glasswares, smashed the leg of a chair against the side of my leg in a fit of rage, because I know that I will soon no longer be able to relieve this horrible sensation. Betahistine is expensive and clonazepam is getting harder to get prescriptions for despite having no problem for several years. I was in such a brutal rage I was almost about to smash the leg into my head I was in such a terrible state. I have hydrocephalus treated with a shunt so this is a very, very, very, VERY bad idea. This burning sensation in my right ear is...the distortion as I mentioned earlier.

Okay, so here is what I will do. I am basically giving the ENT literally ONE chance to ensure that I can realistically treat this horrible, sleep and mood-destroying problem with my right ear. The tinnitus will never stop, but that wasn't really the biggest problem, it was the distortion and this constant fucking burning sensation that just will never stop. The distortion just never fucking goes away, and this sensation is always worse when the distortion is worse, they both come together. I know that it's a nerve problem it cannot be anything else.

Clonazepam (provided I'm taking a liberal dose of betahistine or other antihistamine along with it) stops the problem literally fucking dead in its tracks. It takes about an hour to kick in and when it does my right ear feels so much relief. It's like most of the misery caused by that ear is gone. I can actually fucking enjoy music whereas without it I get lots of honks squeaks and buzzes and distortions in that ear, it just sounds like shit, and the sensation is almost unbearable when I'm trying to sleep. It's almost like someone put something hot in my ear and it feels like a burn. It just doesn't stop. It just never goes away unless I take something to wind down the nerves.

So it's either I am able to get access to medications or I'm going to walk under a bus. I have two choices here, and I've chosen to no longer tolerate this bullshit. I have put up with it for long enough.

I cannot keep living with this constant distress and not being able to sleep, not being able to feel a connection to anyone because of this constant fucking pain.

I will die unless I am able to treat and manage this neurological problem. I will be informing the ENT of this next Tuesday. I am at the point of no return if this shit keeps up, and it will unless it is appropriately treated.

If I cannot treat this fucking ear problem that 1/ keeps me awake, 2/ keeps me miserable and 3/ makes me want to snap my own fucking neck when I'm exposed to sudden loud noises, then I'm going to have to seek some solace in something that is sadly, quite lethal. I really don't want to die, but I cannot continue to live like this. This "economising" medication cannot fucking continue. I have to treat this problem or I'm going somewhere that I won't be coming back from, EVER.

 

[helpingout]

I've been taking clonazepam on and off for the last 5 years, and need to continue taking it to take the edge off the nasty sensation (and distortion) I am experiencing in my right ear and have been for a while now, it has gotten worse over the last few years, it all started in 2020 but has gotten worse.

I can see on my audiogram that there is a much bigger difference at 250Hz and 500Hz, which is consistent with what I'm experiencing. It could be conductive and it could be sensorineural. I am guessing it's a nerve involvement because taking the clonazepam at say 1mg usually resolves a lot of the miserable sensations and the distortions. Sometimes 0.5mg is effective, sometimes not, but 1mg is almost always effective.

The MRI came back, no nerve lesions were found (yes, there probably were but they were just not detected by the MRI though) apparently there is some dilation of the saccule which connects the cochlea to the vestibule. And here's the thing, it's in BOTH EARS. It's +0.2mm bigger in the left side than maximum normal range allows for, and +0.4mm bigger in the right side. This is likely not the only thing causing this problem. I feel a nerve sensation, like a burning sensation on the right side. I KNOW this is nerve damage, and the hyperacusis that it causes is significantly dampened by clonazepam at around 1mg.

Over the last few days I've become increasingly angry, agitated, and smashed up a few things in my home. I broke two glasswares, smashed the leg of a chair against the side of my leg in a fit of rage, because I know that I will soon no longer be able to relieve this horrible sensation. I was in such a brutal rage I was almost about to smash the leg into my head I was in such a terrible state. I have hydrocephalus treated with a shunt so this is a very, very, very, VERY bad idea. I've been able to manage this anger with the remaining clonazepam that I have on hand (I only have 8 remaining 2mg tabs, and apparently the GP won't give me more than 0.5mg x 20 which is only going to last me three weeks if I am careful because I am frequently taking it to control the nerve pain or whatever this burning sensation in my right ear is...it also stops the distortion as I mentioned earlier. The asshole won't prescribe it again, apparently. So that's fucking it. That's fucken it. No more.

Okay, so here is what I will do. I am basically giving the ENT literally ONE chance to ensure that I can realistically treat this horrible, sleep and mood-destroying problem with my right ear. The tinnitus will never stop, but that wasn't really the biggest problem, it was the distortion and this constant fucking burning sensation that just will never stop. The distortion just never fucking goes away, and this sensation is always worse when the distortion is worse, they both come together. I know that it's a nerve problem it cannot be anything else.

Clonazepam stops the problem literally fucking dead in its tracks. It takes about an hour to kick in and when it does my right ear feels so much relief. It's like most of the misery caused by that ear is gone. I can actually fucking enjoy music whereas without it I get lots of honks squeaks and buzzes and distortions in that ear, it just sounds like shit, and the sensation is almost unbearable when I'm trying to sleep. It's almost like someone put something hot in my ear and it feels like a burn. It just doesn't stop. It just never goes away unless I take something to wind down the nerves.

So it's either I am able to get access to medications or I'm going to walk under a bus. I have two choices here, and I've chosen to no longer tolerate this bullshit. I have put up with it for long enough.

I cannot keep living with this constant distress and not being able to sleep, not being able to feel a connection to anyone because of this constant fucking pain.

I will die unless I am able to treat and manage this neurological problem. I will be informing the ENT of this next Tuesday. I am at the point of no return if this shit keeps up, and it will unless it is appropriately treated.

I'm going to keep looking for that vinylbital sodium, because I say this, if I find it, I will use it. If I cannot treat this fucking ear problem that 1/ keeps me awake, 2/ keeps me miserable and 3/ makes me want to snap my own fucking neck when I'm exposed to sudden loud noises, then I'm going to have to seek some solace in something that is sadly, quite lethal. I really don't want to die, but I cannot continue to live like this. This "economising" medication cannot fucking continue. I have to treat this problem or I'm going somewhere that I won't be coming back from, EVER.

If you tell the ent “give me clonaz or I will inalive” they’re not going to give clonaz

You need to pursue any solution to your ear problem.

If you insist that giving you clonaz will fix the ear problem they will label you drug seeking and they might even mark your file as drug seeking.

Just fyi search for the reason why you’re ear is doing this and pursue a solution.

Pursuing a solution to just the symptom will get you labeled as drug seeking.


And don’t kill your self dude

Figure out what’s wrong with your ear.

 

[Flynnal]

The ear is doing this because the nerve/cochlea has been damaged. And yes, I do plan to unalive if this shit continues, especially if it gets worse. If it continues to get worse I am not giving this any more chances, I'm fed up.

I know what's wrong with my ear, it's a nerve problem and needs nerve medication. There can be no other cause, why does my ear canal tingle when I rub my ear, why does it tingle and burn? Why does that ear distort more when the burning sensation is worse?

It all points to a nerve problem. That's what's wrong. I've already figured it out and I want to treat this fucking thing before it drives me insane and I do something that I don't come back from, such as punching myself in the head until I end up in a coma, or some shit like that. I cannot enjoy life in this condition. I cannot function.

 

[helpingout]

The ear is doing this because the nerve/cochlea has been damaged. And yes, I do plan to unalive if this shit continues, especially if it gets worse. If it continues to get worse I am not giving this any more chances, I'm fed up.

I know what's wrong with my ear, it's a nerve problem and needs nerve medication. There can be no other cause, why does my ear canal tingle when I rub my ear, why does it tingle and burn? Why does that ear distort more when the burning sensation is worse?

It all points to a nerve problem. That's what's wrong. I've already figured it out and I want to treat this fucking thing before it drives me insane and I do something that I don't come back from, such as punching myself in the head until I end up in a coma, or some shit like that. I cannot enjoy life in this condition. I cannot function.

I hear you. I know that you’re feeling like you’ve got a handle on what’s going on and how to fix it. Nerve pain meds, clnz, but if you tell a health care provider that they may label you as drug seeking. So I’d prepare to go without benzos for a bit and maybe start the process of getting help before you run out. The doctors will want to do their own fact finding and make their own judgement about what medication will help you.

I’d let them do that without saying “these meds will fix this problem” because then they won’t give you those meds. Even if they will fix that problem.

Got to let them work

 

[TheUltimateFixx]

You should be seeing a neurologist, not an ENT in this case. Can you get an appointment with one -?
(btw if you have had a recent covid infection, this virus can and does directly infect nerves, and can damage and destroy them. It also tends to exacerbate any physical problems you have had prior.)

In the meantime can you get hold of gabapentin or pregabalin? Baclofen is another possible option. Those meds have helped people with your symptoms. If no relief is had from them you may want to pursue a nerve block. But see a neurologist because this very clearly is a neurological problem. Very best of luck.

 

[Flynnal]

I have taken those other gabapentin-type meds, but they cause horrible sexual dysfunction. I literally cannot orgasm with baclofen at 10mg taken twice daily. Pregabalin is just as bad. It works to a point but never gives any real relief.

The only combination I've found that gives relief is 0.5 to 1mg clonazepam plus an antihistamine (eg. betahistine, 24-48mg or 25-50mg of an easy to get antihistamine). I've since edited the posts to clarify, because I accidentally (in a fit of rage) left out the antihistamine/betaserc doses. Those are essential in wiping out any chance of any nausea/vertigo when the tinnitus and distortion/recruitment are at their worst, and also make me feel better.

Taking either on their own doesn't work as effectively, for best relief I take both. I know I have Menieres due to the height of my vestibular saccule. In the right ear the height is 2mm and it's supposed to range from 1.2 to 1.6mm. That's way, way too big. In the left ear it's also not great, it's 1.8mm so it's out of range too.

So, here it is. I am a musician, and I have bilateral Menieres disease. Worse in the right than the left, no doubt, but here it is. My life seems like it's over. I'm not interested in taking clonazepam every day if it's going to lose its effectiveness over time, that's why I take it 2-3x per week, and often it's one week on and one week off, because I don't want to risk dependence, but hey these fucking doctors want to ensure that my life is destroyed anyway it's like I can't fucking win, that's why I want to kill myself, because I cannot win, doctors don't care about me they think I'm just some fucking lunatic autistic, that's my take on it. Someone somewhere in the government has decided "hey, fuck you, I don't care if you suffer" and that's it. I'm not addicted to any drug of any kind, but I do use it to get relief from this horrible sensation.

I have one true way out of this, and if this gets worse, I'm afraid I'll have to pull the pin. I get another MRI in another couple years. I'm literally giving this a couple years to get better. If by 2027 this hasn't gotten better then that's it I think. I hate to say this, but if you take away my way to relieve the problem I will find something much more brutal to deal with it, and I absolutely will, it's a sincere threat.

 

[neversickanymore]

?Have you tried noise canceling ear buds. possibly high end ones like bose.. some of the other ones are pretty solid. Probably should negate that Hz with little problem.

 

[TheUltimateFixx]

Some patients also receiving hearing aids or cochlear implants, which despite the hearing not being impaired in the usual sense, appears to help.

There isn't an outright cure for this type of problem, but several ways in which symptoms can be brought under control to the point where you have quality of life.

 

[paranoid android]

I remember reading that xanax was the drug of choice for tinnitus when it came to benzos. Dont know why though

 

[Flynnal]

Xanax is highly effective, however, clonazepam lasts much longer, and is almost as potent if you compare doses. The problem with Xanax is that it doesn't last long, the effect lasts about 4 to 6 hours whereas with Paxam it lasts all day and into the following day, which makes the Paxam much better and less likely to cause problems.

I do understand there is a risk of dependence, which is why I only take it twice a week, sometimes taking one week off between doses. I usually take it when I'm doing something social where I'll be around people and where I will feel much easier being around them as my hyperacusis isn't nearly as bad whilst I am taking it. Anyone here can rest assured that once the medication wears off, it all comes back. This isn't like throwing huge amounts of steroids at it within the first like 3 days after onset where it can go away for good (sometimes, not always). This piece of shit whatever it is has decided it's here to stay.

This isn't hearing loss as much as it is screwed up hearing. My audiogram looks reasonably normal with a 10dB difference at 250Hz, which is the most problematic area, the right ear of course being the one with the higher threshold and of course, the one that has the lion's share of the problem. But the left ear also causes me grief at times too. The right ear is the main problem.