For Those Who Suffer...

[Zimichael]

Some of you may have noticed that I have been "off board" (not contributing to TT) for a long time. Without going into details, the answer is very simple...The word for it in English is "suffering".
Depending on the degree of that, it can be all encompassing, highly debilitating, soul destroying...and even deadly. For sure it can squash life down into a very, very small space...Those with long term, severe chronic pain probably know of what I speak.

Severe tinnitus, and certainly added hyperacusis can cause intense suffering. Fortunately for most who get either, or both, the vast majority "recover" and get on with life after varying periods of "adjustment".
Like me. Three times in my life...though #3 was harder to adjust to than the first two volume increases, as the added hyperacusis is a very difficult beast to deal with. Volume level #4 with "Sound Reactive Tinnitus + Hyperacusis" is a life destroyer. Fortunately for most, this combo is very, very rare in the Tinnitus spectrum.

In fact many "experts" claim it does not exist, or that it will respond to conventional T treatment protocols.
Quite frankly, that assumption is just arrogant, hurtful and naive...and assumes almost by default, that my (our - as there are a few others here on TT with this) 'condition' is entrenched from lack of will, or mojo, or whatever, re methods of 'getting better'. The undercurrent can be that we are just dumb-arses and are not trying hard enough, etc., etc.. As one sufferer put it: "Why is it considered our fault for not getting better despite trying everything under the sun...like we want this???!!!"
Those who know my involvent in TT know that there has been no lack of "trying".

OK, so why am I posting this now?

Well, it is something I have thought of sharing for a few weeks, but hesitated with as I did not want to deal with the 'ignorance factor' and 'habituation mantra'. I don't have the strength, or the desire to 'defend' myself. A quick read of my Profile and how long I have had T will show I am not some ignoramus that needs spoon feeding this kind of "advice". Thanks, but not thanks!
Also @derpytia has a post up right now that illustrates this all quite clearly...that suffering with this condition can indeed be just goddam awful...AND that just because you get tinnitus once, does not mean you cannot get it worse again later! This is worth remembering and is also not taken seriously in some circles.
It should be...though as above, most T sufferers do not seem to get "repeats" and "higher volumes". Thus the millions who say: "Oh, yeah, I have that too but it does not bother me!"
Lucky them.

So, for those that do suffer, and specifically those who have difficulty longer term (as who does not suffer initially with T??? It's a freak out at first for nearly everyone isn't it?!), I have an article that came up which I find highly useful as a reference. I send it to well meaning friends who "just don't get it". It seems to have an impact, though is written with reference to chronic pain.
Same deal...in my book one can substitute "chronic pain" with "chronic suffering" in most instances.

Here it is attached as a pdf file, which is much clearer to read than the 'online' article. However, if it does not open for you, just Google: A Letter to People Without Chronic Pain, and you will get the links...The pdf link seems not to work with some browsers.

The reason I am putting this in a new thread is that it is "non specific" to any one individual. Suffering is suffering, and I don't care what shape or form it comes in. It sucks. And it can be even harder to cope with when those around us 'just don't seem to understand'. I think we have a human need to 'be understood'.

Thus I hope this will be of help to someone...(@derpytia you may want to add it to your desktop). It has been to me, and those I have sent it to.

Best, Zimichael

 

[RichL]

Awesome post Michael, and perfectly worded, I have wondered what happened to you and was hoping for the best, sad to see you have been suffering bro.
I have been doing allot better since I have my depression sorted.

Have you considered giving Keppra a try for your H, I know Trobolt wasn't the best experiment for you.

I did have an appointment with a neurologist but felt I was recovering enough and did not want the disappointment of an arrogant doc not even wanting to do any research on it for me, had my family Doc just brush me off and not give keppra the time of day for me.

I will get that appointment in the future some time but for now I am semi enjoying life again.

It's good to see you back bro.

 

[Telis]

Yup great post as usual, great to see you back.

 

[Mad maggot]

Good post. I'd like to say to all the doctors who diagnosed me with MS and freaked me out before doing the MRI scan ruling it out some similar things. They said I had a brain tumor or MS. But when my scans came back clear I was told there was nothing wrong with me and to go home. I couldn't walk to the toilet! But there was nothing wrong because they'd made asses of themselves diagnosing me and then finding their scans proving them wrong. So it wasn't them. It was ME!
Now any time I try to see a doctor and tell them my symptoms they look at me and say: "well you don't have MS and there's no brain tumour. Your scans are all good news so I'm sure you're happy about that?" NO IM NOT. I'd love to have a brain tumour or to have MS - seriously I would because you'd all be jumping up and down trying to do something about it. And they keep on saying you don't have MS as we'd see that on your scans. I never mention the bloody word ever - they do! I've not once said MS to a single doctor. But I've not had one doctor who doesn't bring it up as if I'm trying to tell them I have it and they're trying to prove I don't.
Any normal human being might think, oh the scans show we got that wrong. Perhaps we better start again and look for the right answer. But instead I was told: "It's all in your head, go home." Yes yes yes!! It is all in my head, that's what I'm trying to tell them while I'm lying in a pool of vomit on the floor and can't stand up!
A bit like being told you're not habituating I guess and to hurry up and get over it?

 

[Telis]

Good post. I'd like to say to all the doctors who diagnosed me with MS and freaked me out before doing the MRI scan ruling it out some similar things. They said I had a brain tumor or MS. But when my scans came back clear I was told there was nothing wrong with me and to go home. I couldn't walk to the toilet! But there was nothing wrong because they'd made asses of themselves diagnosing me and then finding their scans proving them wrong. So it wasn't them. It was ME!
Now any time I try to see a doctor and tell them my symptoms they look at me and say: "well you don't have MS and there's no brain tumour. Your scans are all good news so I'm sure you're happy about that?" NO IM NOT. I'd love to have a brain tumour or to have MS - seriously I would because you'd all be jumping up and down trying to do something about it. And they keep on saying you don't have MS as we'd see that on your scans. I never mention the bloody word ever - they do! I've not once said MS to a single doctor. But I've not had one doctor who doesn't bring it up as if I'm trying to tell them I have it and they're trying to prove I don't.
Any normal human being might think, oh the scans show we got that wrong. Perhaps we better start again and look for the right answer. But instead I was told: "It's all in your head, go home." Yes yes yes!! It is all in my head, that's what I'm trying to tell them while I'm lying in a pool of vomit on the floor and can't stand up!
A bit like being told you're not habituating I guess and to hurry up and get over it?

Do you have hearing loss? I lost quite a bit very quickly in the upper frequencies and could hardly walk for a while. I have since been able to regain my balance for whatever reason but I still struggle with technical things like sports. I get dizzy and my timing is all off. It's like I have had to relearn everything I knew before.

 

[MattK]

Do you have hearing loss? I lost quite a bit very quickly in the upper frequencies and could hardly walk for a while. I have since been able to regain my balance for whatever reason but I still struggle with technical things like sports. I get dizzy and my timing is all off. It's like I have had to relearn everything I knew before.

Just curious, but what sport did you okay? Was it your living?

 

[Martin69]

@Zimichael
Great post, as always.
I know many people who have T, but don't complain. Am I weak?
I know people who know other people with T, and those just do not listen to T. So why do I?
I visit my psych doc on a regular base, but I don't know what to tell him anymore. I don't talk about T.
I am waiting for habituation, like it is for many others. But it does not happen. Is it my fault?
I guess I have catastrophic T and have to live with it.
But I try to get better, every day.

 

[Mad maggot]

Do you have hearing loss? I lost quite a bit very quickly in the upper frequencies and could hardly walk for a while. I have since been able to regain my balance for whatever reason but I still struggle with technical things like sports. I get dizzy and my timing is all off. It's like I have had to relearn everything I knew before.

No. Ive got super hearing