In Loving Memory of Allan1967

I wish you well and hope that you will get some lower volume days so that you do not have to think about death each day.

This may be a brutal saying, but if we could cure tinnitus 100% guaranteed, I would call for everybody living with moderate tinnitus for 1 year as part of education. I believe we wouldn't have wars if this happened because everybody understood what real suffering is. There's no easier way to foster compassion.

 

You are entirely correct, Sevv:

Here it is 20 years into the New Century, and Medical Science should be held accountable for not having recognized the dire seriousness of this condition and done what was necessary to develop an effective treatment.

 

I'll never forget when I went to my first ENT and she said "you have some sound sensitivity," clearly not really knowing what hyperacusis is all about. I am not blaming her for her training. But jeeze, people are not suicidal with these conditions for no reason or that they are confused and don't understand that sounds can't harm them.

Getting severe tinnitus and/or hyperacusis is more like being terminally ill than people realize. Your body isn't dying, but your brain sure is. AND drugs that help the brain often make it worse.

 

I always get angry when people say that tinnitus can't kill you.
Yes it can.

Maybe not directly, but when people are mentally and physically exhausted with nothing left in the tank and no way to reset due to lack of sleep, bad things will happen.
Either that, or if lucky they die of a heart attack from the extreme 24/7 non stop stress, which has no analogue.

If tinnitus is severe enough, it can be quite literally a death sentence.
If I'm going to take the figure of two million people in North America alone being debilitated by extreme tinnitus, those are 2 million death row inmates waiting to die.

Abandoned, broken, isolated and often ridiculed by the very people whom are supposed to help them.
This is why extreme tinnitus is by far the worst thing that can ever happen to a human being.

 

As Harley says...

 

I fully understand how you feel Chinmoku, but please try and hang in there. Tolerance/withdrawal can exacerbate suicidal feelings. Withdrawal can really exacerbate tinnitus too, unfortunately it usually takes quite a few months for things to settle down once the drugs are ceased.

I am not saying screeching tinnitus is not enough to make people consider taking their own life because we know this horrid condition can do exactly that, but benzo withdrawal can mess with your brain even more!!!

Irrational thoughts and deeper depression can be caused in both tolerance and withdrawal, please do whatever you can to keep yourself safe. We are all here for you, no judgement, but please give it time

 

Life can subject human beings to many types of hell. Severe tinnitus is just one of them, if the person doesn't like noise. It's not a good idea to make assumptions about the suffering life can inflict on us.

 

Definitely we have a reponsibility towards our families. They are supportive and do all they can to help us.

 

Just my view..........x

 

Phony experts are infinitely more dangerous than a lack of experts. Imagine if the literature said, "Unfortunately, we don't understand this disease. Take common sense approaches and follow the patient's evidence." As opposed to every article, where like the first sentence is about the importance of not overprotecting, and how the patient needs to be counseled (like they are 5 years old) that sounds can't hurt them.

It's like, try living with severe hyperacusis. Your opinion would change real fast.

 

It's true, there are other horrors, a person I met suffered from regional pain syndrome, she claimed this was one of the most painful conditions known to man.

This is the list of the 20 most painful conditions according to the NHS:

Appendicitis
Shingles
Frozen shoulder
Cluster headaches
Broken bones
Complex regional pain syndrome (CRPS)
Heart attack
Slipped disc
Arthritis
Sickle cell disease
Migraine
Sciatica
Kidney stones
Trigeminal neuralgia
Acute pancreatitis
Endometriosis
Gout
Stomach ulcer
Fibromyalgia
Pain after surgery

Severe tinnitus is not even in the list
No wonder we sometimes overreact by saying it is the worst. For sure it's continued torture.

I suffered from appendicitis, I had surgery, but compared to severe tinnitus or psychiatric drug withdrawal it was much lighter, at least for me.

I cannot fathom the amount of suffering we humans can endure. Medicine is still in the middle ages in many areas, and some areas of medicine like neurology or psychiatry are at the level of bloodletting. In particular, whatever involves the inner ear and the brain is in the dark ages. Things are starting to move but it will take decades for neurology and psychiatry to become real sciences.

 

Thank you Star, I was thinking that Allan had been taking antidepressants and I always wondered if they might also have played a role in worsening his tinnitus. Some of these drugs were serotonergic and serotonin may increase tinnitus.

As for me I'm not even sure I'm in withdrawal or tolerance. By exclusion that seems to be the only reason for my constant worsening and the transition from mild to severe in the 9 initial months, but differently from pregabalin, reducing clonazepam is not giving me any other symptom than more intrusive tinnitus and we know of people who are not on medication and whose tinnitus keeps worsening for no apparent reason anyway. I just don't know if it's the drug, I'm going by exclusion.

I was also thinking that as much as both you and I don't like benzos, Allan is one of the cases where a short course of benzos might have helped possibly, in the state he was there was nothing to lose. It's so sad his GP didn't realise this. He could have tried the Shulman protocol. That might have bought him some time, but there is no point in speculating now.

This is a very sad thread, let's all stay strong.

 

Don’t tempt fate jazzer. I know how much you’re suffering with loud tinnitus. Mine is super loud many days too. But it’s not my only condition and not the worst. And I know how many suffer worse than me.

 

Agree.

I have very severe high pitched tinnitus with 80 decibel loss in both ears.
I also have severe mouth pain from damaged nerves and palate with severe mouth sores covering all of soft and hard palate.
For me, my mouth is more torture.

 

Yes understand your comments and you are right.

It is far from my only condition also, but it causes me the most grief.
I used to have a head full of musical improvisations to play, artistry, a passion and a career.

All I am left with is endless loud noise and head pain.
I’m not superhuman - sometimes I have to let out my despair.
I never mean to upset anybody, by the way.

 

I don’t think saying tinnitus is one of the most “painful” conditions is correct wording as it’s not actually bringing you physical pain unless you have hyperacusis.

It’s definitely emotionally taxing and the distress it brings about is absolutely terrible. Extreme tinnitus brings on a lack of sleep, anxiety, depression (which may lead to using meds which bring about more conditions) so it can be a domino effect.

Some of the painful things on that list are painful but temporary and curable - I’d rather have a month of terrible pain vs severe tinnitus for the rest of my life for sure.

But even taking that list above, I know for a fact that things like Trigeminal Neuralgia and CRPS are WAY worse than severe tinnitus. A good percentage of these people actually have hyperacusis & loud tinnitus on top of neurological pain that meds don’t even begin to touch. With Trigeminal Neuralgia you’re forced to live off of heavy meds that usually induce tinnitus, brain fog, extreme fatigue. Many have teeth crumble and fall out due to the meds. It’s horrifying. Many experience ear fullness and pain as well due to where the nerve is.

This is why I say I don’t think it’s right to say tinnitus is the most painful, horrifying thing in the world. It certainly is horrifying but I think what many don’t consider is there is a huge list of ailments that can leave you with incurable pain and horrific tinnitus & hyperacusis on TOP of it all.

Check out @firebutterfly8.27 on Instagram if you wanna see what it’s like to live with CRPS. I believe she suffers from tinnitus & hyperacusis on top of it all.

 

As I wrote above I know a person with CRPS and I have seen what kind of horrors it gives you. I agree also on the fact that you can get severe tinnitus on top of other horrible condition, you can get it from cancer drugs as well. However, really severe 24/7 tinnitus leads to a such a continued torture that it should be in that list, of this I'm 100% sure.

 

You do have some good points.
There are other horrid conditions of course.

Some time ago (before tinnitus), I had a very bad tooth infection, which resulted in wall climbing, excruciating pain.
Due to the infection, the pain killers would only give me about a 5 minute window, during which I felt no pain.
Some would say it's only 5 minutes, therefore somewhat insignificant.
But at that time to me that 5 minutes meant everything to me.
It gave me a chance to reset and take a few breaths before being overcome by the pain again.

What I'm getting at is this:
Most of those conditions above can be subdued for at least some short period of time, due to the wide variety of available painkillers (anything from cannabis to morphine and beyond).
Most of them also get taken more seriously than tinnitus, as I doubt that any medical practitioner would dare to say "just learn to live with it" (or even make some kind of a lame joke) about any of the conditions on that list.

The problem with tinnitus is the fact, that there is absolutely nothing you can take (or do) to stop it even for 5 seconds and it never goes away.
Not one single thing (aside from suicide).
From the psychological standpoint, this is a huge game changer, because of the relentless permanency with which you get tortured 24/7, with no chance for relief.

That is why I insist that this condition is simply the worst in existence.
And I'm no stranger to adversity and pain either.

 

99% who have tinnitus deal with it fine, it's a non issue, just some background noise.

That's why tinnitus will never be taken seriously by medical professionals, and will never be on such "worst conditions to live with" lists.

 

Stress, the constant ringing especially when loud and even ear pain can impact health, whether mental or physical.

It can also lead to suicide. So, yeah, it literally kills people.

 

For some the Shulman protocol of Gabapentin plus Klonopin can knock out the noise temporarily. It used to work for me until I fell asleep and awakened and then it reared its ugly head. I’m looking more into my left TMJ now causing the noise. Definitely annoying for me atm.

 

I don’t disagree that even the worst pain in the world is easier to cope with than severe permanent Tinnitus (assuming there are meds that help). Such as your tooth example.

What I was getting at is saying severe Tinnitus is worse than something like Trigeminal Neuralgia isn’t right, because neurological conditions such as this for the most part aren’t curable nor easily treatable, AND you develop Tinnitus on top of it. So just severe Tinnitus isn’t “the worst in existence” as it’s possible to have severe Tinnitus on top of pain that isn’t treatable. Morphine and opioids aren’t the solution to all pain, and neuropathic conditions are notoriously resistant and hard to tackle.

Take it this way, you’re saying you think severe T is worse than...severe T, 12/10 shooting nerve pain down your face, taking meds that make your teeth/hair fall out, forgetting things to the point where you can’t hold down a job? Endless doctors appointments that you have to pay out of pocket fees for because you can’t hold down a full time job but since your disability is invisible you’re not granted government assistance? Doctors saying they can’t help you because your MRI comes up clear? Taking 3-4 different meds that are adding to liver damage daily, on top of anti-depressants?

Severe T is hell and I’m not saying it doesn’t deserve a place on a list of the world’s shittiest conditions. But it could be a hell of a lot worse.

We can agree to disagree on this and it’s okay if you don’t share my opinion, this is a Tinnitus forum after all so I’ll take my losses here.

Also if you think all conditions are treatable and doctors/family members believe and support you...join some
Trigeminal Neuralgia support groups and you’ll be in for a treat. There are plenty of terrible invisible conditions that are minimized by doctors because they can’t be “seen” and patients are seen as overly emotional instead

 

Again I’m not arguing that severe tinnitus isn’t brutal. It’s not on the quoted list because tinnitus isn’t PAINFUL and if we’re strictly discussing pain, I’m not sure that tinnitus deserves a place. If we’re discussing pain as in overall well being/quality of life/mental pain, etc then it certainly belongs.

The real issue I see here is that hyperacusis or noxacusis isn’t on that list.

 

Tinnitus, dizziness and chronic pain are the worst conditions a person can endure... full stop!
Anything else fades in comparison!

 

My appologies if it sounds like I'm arguing, as that was not my intention.
Yes having screaming, unmaskable tinnitus on top of any of those condition would be beyond horrifying.

It takes all of my coping skills just to fight tinnitus day in and day out, as it all seems just like one long, exhausting blur of a day that never ends.
I would give anything for a good night sleep, which is something I have not experienced in about 4 years due to loud, high pitched industrial sand blaster inside my head.

I cannot possibly imagine having anything on top of this, as it would make my situation 100% non-survivable even with the best of optimism.
This is the base for my statements.

For me, this is as bad as it gets.
The next stop is death at some point soon since I'm just beyond tired of this pointless suffering with no possibility of getting better.
I hope this makes some level of sense, as I find it hard to string even a few simple sentences together these days.

 

No need to apology to anyone!
Anyone trying to tell you that what you have is not as bad as things can get doesn’t have what you have!

 

That was clearly not what I was saying and in no way am I implying that people aren’t suffering because there are worse conditions out there.

 

I didn’t mean to diminish your suffering at all and MY apologies if it came off that way. Tinnitus is hell on itsown. I’m not here as a bystander to the issue, I struggle with it daily myself.

 

If you want to assess how bad severe tinnitus is just look at the suicide rate among veterans.

 

I see what you mean but I'm not sure about the difference between physical and mental pain. It's not well defined. Depression can come with terrible physical symptoms, really terrible. Similarly, for me tinnitus is physically painful. It's not just a noise, at this level it is an aberrant electrical signal on the brain that destroys you. I feel it more than hearing it. I don't know how to explain it.