A Life Changing Experience...

Waking up one morning, four years ago now, to loud intrusive hateful Tinnitus, was the vilest thing that had ever happened to me, the very worst kind of luck.

I just knew within the first ten seconds that this would be permanent, the soundtrack to my life, that would change that life for ever.

There is no other experience in life that seeks to rob us of our peace and quiet, our peace of mind, our composure, our ‘joie de vivre,’ our very beautiful ‘calmness of being.’

It places us, in total isolation, on a battlefield of hostility.
We will always have to fight this battle, and fight it alone.

Being so catastrophic, so detestable, it raises instantly huge questions in our minds.

Do we want to go on living?
Can we go on living?
Do we even have a choice?

We all deserve to live in peace.
It is our birthright, and we have been robbed.

“Okay - that is quite enough Doom and Gloom - in fact, more than enough....”


I am a small part of a large truly wonderful family, every single member of which I love with all my heart.
I live in a most lovely part of the world.
Just so beautiful.
I have some lovely friends and neighbours.
(Need I mention three exceptional pussycats?)

One of my lovely daughters, a school teacher, has developed chronic Tinnitus.

In answer to the questions posed above, I want to say:
I know that life is now very different for me,
it will always be this way,
but I want to live,

I want to enjoy the love of the people around me,
I want to look after those pussycats,
I want to show Tinnitus that life is still possible, and can be enjoyed,
and I want to be the encouraging example to my lovely daughter that we can all win through.

(Reading this - those of you with mild Tinnitus will wonder what the hell I am talking about
- those with ‘the real thing’
will know the truth.)

 

it's my suicide story being played out

 

Well said Dave.

 

.....very best wishes buddy

Dave x

 

.......but not quite......

 

Tough luck indeed, I absolutely have no will to live anymore.

 

Hang on buddy - I would say experiment with meditation.
Not easy to start with, but it gets better.
Perhaps read Dr Hubbard’s Story....

Very best wishes
Dave x
Jazzer

 

@Jazzer For myself with pain with somatic influence, medication is not recommended by some professionals. For myself with somatic pain influence massage with oil is better and helps me to sometimes sleep. Brown University did a study which was published in all the leading Psychology journals on the dangers of medication for some. I do think that medication would be helpful for you, but certain therapy for tinnitus isn't safe for all.

https://mentalhealthdaily.com/2015/06/17/dangers-of-meditation-list-of-possibilities/

 

I have mild to severe 4/10 to 7/10, depends on the day. I've just accepted it. I have a medical condition that is very serious—I just don't have time for my tinnitus—this other condition if not treated could be devastating (not saying that tinnitus isn't—I felt like the world had jumped it's axis when I first got it, I didn't want to accept it, but had no choice). I have to take a lot of meds for my other condition (I've probably mentioned this in other posts—old story). So if the meds are making it worse, I just have to pick my poison. I've had to face my tinnitus and move on, not that that is easy, you habituate and some have spikes—like me—and then it's back 'on the mind' again.

I like your quote 'the soundtrack to my life'. I felt the same way. I like the positive ending/outlook to your post. The idea of 'not letting your tinnitus rule you'. You are you, not your tinnitus. That's the way I feel about my other condition, it's not who I am, it's just a part of the picture of my life—I put a frame around it, put it on the wall, and walk on. I have no choice—the T is not going away, nor is the other condition, and I can't pause my life.

p.s. I have a kitty too, as you can see in my pic. I love him. I'm also thankful for my family, they are most wonderful, they add richness to my life—a richness that I don't want to let T (and my other demon) rob me of.

Cheers!

 

Dear JMI
- I loved your post, you have a great heart,
and great courage.
I feel that we are both cast in the roll of heroes, a roll we would never choose, of course, but we were not given any choice in the matter.

You have an adorable pussycat, and great support from your lovely family - thank goodness.

We are both doing our level best with this wretched condition, and are coming through the best way we know how.

Much love,
Dave xx
Jazzer

 

So I have just read a list of the immense dangers of meditation.
For me the dangers of medication (chemicals) far outweigh the dangers of meditation.

In fact the only danger of meditation that I can think of, would be......

- ‘Not Doing It....’

 

As you’ve shown me yours,
I’ll show you mine.........


Annie


Percy

 

In layman’s terms - what my meditation actually does is ‘speed up the process of acclimatisation to the sounds.’ (I avoid the word habituation.)

As we can get used to a change of climate, so we can get used to a change in soundscape.

The willing exposure coupled with the experience of deep relaxation seems to do the trick, for me at least.

Best wishes to everybody

Dave xx

 

Dave you obviously have a sound mind so I believe that your meditation methods as we had talked about privately is a major plus for your well being. I also agree that your thoughts on the use of benzos and ADs may not be right for you. Many of us with ongoing severe tinnitus need more than short term assistance.

I have had many discussions with old pharmacy friends and I will never again use a benzo beyond a very limited short term period. For me a small piece of a benzo may be helpful for a night or two after a crisis that has nothing to do with tinnitus.

I have an open mind with SAGE medications for depression and insomnia as they have apparent focus on the same brain activity as tinnitus does. The safety profile of the SAGE drugs could not get any better. They are not benzos, a first and they don't need to be tapered for more than three to five days. It remains to be seen if their present indications will help with tinnitus volume. I will never try a new version of Trobalt /Retigabine - but out of respect for others I'll keep my thoughts to myself.

We do need completely safe drugs for serious pain and infection and I wish that the tinnitus community would focus more on that.

 

So true. One year ago here and still trying to figure out how to live with it. Thanks for sharing. Hugs!

 

This thing is so hateful Margaret, so unkind, a crime against humanity, and often caused by the negligence, stupidity, or aggression of others.
But as we only get one shot at this life, we owe it to ourselves to still try to make something good come out of it.
Personally I do not have a faith, but that does not prevent me from thinking of you, and wishing you the very best in life,
love
Dave x
Jazzer

PS - is your profile picture a self-portrait by any chance ?

 

Thank you Dave. I appreciate your kind wishes and I wish you the very best too. As for my profile picture, it’s not a self portrait but it’s something I drew for distraction. ❤️

 

Beautifully drawn
xx

 

Thank you