For New and Old Tinnitus Sufferers, Please Read My Story. From Living Hell and Back.

Hey all,

If you go back and see my posts you will probably see an extremely desperate person seeking for help and being caught up in an extreme amount of pain. For you who haven´t read my posts I will tell my story.

I have contemplated a few weeks if I would write this and if I would write this under the support or success story forum. But considering I do not think of wanting to die every waken moment I do have to put this under the success stories.

I had what I now can call extremely mild tinnitus for 20 years before I realised what real tinnitus was in late September 2018. The old tinnitus was like a leaf falling in a forest. Whereas the new tinnitus was like a truck honking right next to your ear. I speak to you all that have this feeling that the tinnitus penetrates your whole brain and thought process.

For about 5 months I was in desperate pain. My tinnitus was quickly accompanied by hyperacusis which made even turning a page in a book a painful endeavour. On top of all this I had an extremely reactive tinnitus that reacted on every single sound around me. I managed to take walks 30-60 minutes long per day. During these walks even with earplugs, I could suddenly hear single frequency tone coming from a car or a tractor standing on standby, which disappeared when they pressed on the gas.

I tried to survive by playing games on my cellphone 10-14 hours a day because it was the only thing that didn't make a sound and also kept my mind occupied enough to not get consumed by the concert from hell.

I was also during this time reading a lot in these forums regarding ANY type of treatment for easing my tortured state. I could probably attach a photo here of my extensive cabinet of B12, NAC, Ginkgo Biloba etc.
Basically anything I did it either aggravated the situation or made no difference. Also, any type of Benzo or Antihistamine sleeping pill aggravated the situation extremely.

I got Mirtazapine prescribed and it made my tinnitus situation worse and most of all it made me tired which put my mind more focused on my inner self. Which in my future experience was probably the worst thing that could happen.

After 3 days of the Mirtazapine, I quit it and went on the internet to find more alternative treatments.
I then managed to get a hold of Keppra. Which for a time really did manage to clear one particular hard part of my tinnitus and that was the one tinnitus that literally was vibrating through my whole brain.
It was of course not a solution since the dent it made was so small that I still was contemplating of ways to die.
I was posed a question, how does your tinnitus sound like. My answer was: It is like a symphony from hell where you always find some new sound without even looking. Crickets, Beeps, Tensor Tympany, Roaring, you name it... I am surprised I didn´t die...

In regards to dying. My saving grace was this, failing a suicide could keep me immobile or incapable of talking. So each and every waking hour of these 5 months of torture I told myself, there is no way out because if you fail, you might sentence yourself to an even greater hell than you are in.

My savior was a combination of Zoloft + Acupuncture and exposing myself to sounds again.
It was an extremely long process but my conclusion from my experience is this:

If your tinnitus is causing you panic, intense despair, thoughts of suicide, extreme lack of focus or anything resembling the above. Your first line of defense will be antidepressants of some sort. Which ones, I can´t tell you and for sure, your MD won't be able to tell you. This is a hit or miss game since no one knows how it exactly works.

When I went on the Zoloft, I started with 25mg. 3 days later I didn't have any reaction so I figured I will raise to 50mg on my own. Tinnitus got a little bit worse but my reaction to the tinnitus went down extremely.

I did feel so extremely disrespected when the specialist told me about that my reaction to my tinnitus is what is the worst part, not the tinnitus itself. It was a hell that I wouldn´t wish on my worst enemy and during the worst times I would have taken one month of freedom from it and then instant death.

It has now been 4 months since I started experiencing an improvement.
It started about 2 weeks after my Zoloft + acupuncture to expose my ears to the sound of waves hitting the shore where I live.

Mind you that I could not listen to any sound for 5 months. It was literally tearing my ears and brain apart.

I am now on a low dose of 25mg of Zoloft and continuing to lower it. I do not protect my ears in environments that are below 80 dB. I also make sure that my ears get their dose of full spectrum natural sound by walking outside in the city sprawl. The only thing I take note of is any emergency types of vehicles that are extremely uncomfortable to my ears. Although even when I have gotten exposed to it a few times it hasn´t worsened my situation.

When I write this, my tinnitus is extremely present, but I don´t care as much as I used to.

To all you sufferers out there. I truly feel for you. If you ever need to talk to anyone, I am here for you.
This disease is so different for all of us, but rest be assured, there is a way for each and every one of us.

I am far from ok, but I am far from dead.

God bless, although I don´t believe in God.

 

I believe that there might be a connection between the two facts above...

 

How many sessions of acupuncture before you started noticing improvement? Did you do general acupuncture or for tinnitus (ears only)?

 

In what way Bill?

 

I did clinical acupuncture at hospital that was specifically tailored towards the muscles and points around neck and head.

There were 3 things I was doing at the time of the acupuncture.
Zoloft + acupuncture + exposure to real life sounds of waves.

 

Hi
Why it has worsened so much in 2018?

 

I have identified a combination of 3 things.
Ultra sound cleaning of teeth at the dental hygienist, total ear wax blockage of the ear canal. These two are definitely the biggest culprits. On top of this a stressful life probably added to the severity of the tinnitus.

 

In those 20 years have you been do the dentists before?
And that particular ultrasound cleaning, was it very long and loud?

 

When I began to religiously protect my ears, my tinnitus began to fade. This was reversed when I pressed a loud phone to my bad ear, but that is another story. Having said this, if the sounds below 80 dB haven't sounded too loud to you, and your exposure to the sounds hasn't resulted in any (even minor) spikes, then perhaps you did the right thing by not avoiding those noises. I believe that people ought to listen to the signals given to them by their bodies - if a sound feels too loud, or gives one spikes, it is a good idea to avoid it, even if, objectively, the sound is not even that loud.

 

I think I might have not been clear I my text. I was literally isolated from noise for 4-5 months since I couldn't handle even turning a page in a book without feeling pain. Even turning my head on pillows was uncomfortable. And my tinnitus didn't get any better, almost felt it got worse. I also developed Tensor Tympani Syndrome.

But after starting on Zoloft, after reluctance, together with acupuncture I gave up the isolation and started to expose myself to the sound of waves at a beach near where I was staying. It was painful but in a more being sore after training type of way. I pushed through this and could finally turn on speakers with some talk radio on the lowest setting, barely audible. I continued this process for a few months and my LDL went from 43 decibels to about 60. And it has continued to get better. I do have 3 sets of plugs with me just in case there is a situation that needs extra care.

I feel truly blessed that it all helped and I have some theories regarding it all but a bit too late to write them now.

 

I did it a bunch of times before without feeling any issue. The only big difference was the totally clogged ears with wax...

 

Sorry, I didn't realize how bad your hyperacusis used to be. It sounds like you did the right thing. I am glad that you were successful in getting over your hyperacusis. I hope that eventually your tinnitus will follow your hyperacusis and will also get better.

 

I hope from all my heart that tinnitus and hyperacusis will fade for you.

 

Wish you a healthy life and never having to go through all of this again...

 

Is your tinnitus still reactive? Has your hyperacusis decreased?

 

Tinnitus is not reactive anymore. My hyperacusis is still around but it is basically uncomfortable in a full bar environment. Tinnitus is still there with some good and some bad days. I'm working and studying to keep busy and working out. I've been on quite a few different regimens with various effects.

 

Do you still use Keppra? Glad things have improved for you!

 

Does this mean that you have had success with something? Please tell more

 

Well it is hard to say really but things I use: NAC, Niagen, Taurine, Lenire, a YouTube channel with tinnitus treatment, meditation, ALCAR, GABA tea and Oxazepam.

All have different uses and I don't use everything at a time. Depending on how my tinnitus and my sleep is, I use different remedies.

In regards to sleep meditation, Taurine, Melatonin and Magnesium works wonders.

 

Nah. I dabbed with Keppra for a month but wouldn't touch that in a million years now.

 

Why? Did you have bad side effects or trouble stopping?

 

Why do you think like this?

I have been using Keppra for 5 days but I haven't noticed any side effects.

What was the side effect you faced?

 

How long did it take for you to lose reactivity?

 

Weighs heavy on the liver and such and didn't see any changes worth that.

 

There are patients who use this drug in high doses for a very long time. I do not think that a 2-month use will have a very heavy effect on the liver.