Electric storm

(firstly, apologize might mine English grammar not been good all the time since English is not my native tongue and the long story/intro ahead )

Hi dear members,

Let me introduce myself;
I’m a 38 year old guy (Dennis) from the Netherlands with a lovely girlfriend (Hanneke) and two wonderful boys (Mees, 5 years and Tijn, 3 years).

End august, when listening to music via ear buds (not to loud) I suddenly felt a kind of deafness in my left ear.

I thought ooops not good and rested my ears the days after. However, on the Sunday after when watching TV suddenly I heard a high frequency pitch (later I found out this was a 4 kHz tone) became noticeable and like the most of you I started to stress (what the f#! this can't be true, why me). During the days after the beep became louder and louder and was always noticeable (even when in a crowded environment). Get to sleep at a certain point was a nightmare!!!

At a certain point a became really anxious and frustrated, blaming myself (why didn’t I take enough care of my own ears, too much exposure to loud noises over a prolonged time which I believe is the cause for my ringing !) WHY WHY… (and yes the ringing became even worse) I told my girlfriend about my constant ringing and told her that with this level of sound I couldn’t live anymore (I never ever had this kind of thoughts in my precious life before which at the same time freaked me out even more… I always loved and still love life but that constant ringing, buzzing WHAAAAAAAAAAAAAAAAAAAAA!!!!!)

After a lot of internet search (yep like the most of us do, otherwise we weren't here which made me even more anxious of my future life ahead DAMN A LOT OF DOOM STORIES CIRCULATE THE INTERNET!)

Anyway, I decided to follow an infusion therapy treatment (this was in my 3rd/4th week of onset) in Germany (of which the effects are not confirmed). After the treatment it seemed that the noise level reduced to half of what it was during first noticing it. Whether or not it came because of this therapy or a kind of placebo effect, I dunno, but it helped!). Giving me some relief but it was still making me uncomfortable at certain moments (although I didn’t had real issues anymore going to sleep). Bad and good days followed (and still go own), when I had a good day I wasn’t happy as one would expect but it made me worry about the days after. I feel better but tomorrow I may be worse again (this leaded to real spikes of my tone (what a contradiction isn’t it) and moments of tears My girlfriend was a real help during those moments (putting me together again and told me to come back to sense!).


It is now a bit more than 2 months ago that the electric storm started in my head!
I have been realizing slowly that I already had for a longer time low level of electrical/buzzing sounds (kind of buzzing, like when putting a seashell against your ear) but it never annoyed me or think I had to be careful with my ears (damn why didn’t my brain warned me then!)


Some questions/concerns;
Since I now realize that I have had tinnitus already longer do I have to worry that my tinnitus worsens the coming years (that is my main concern and I believe for the majority of us) since I believe I got it already for a prolonged period of time (at a lower level).

These thoughts still cause some anxieties at certain points as well moments of tears (I never had such emotional rollercoaster feelings before).

For me, this level is acceptable, not fun but acceptable! However, I fear it worsens and get to a level that I really will break down (unable to handle any longer) .
For example, sometimes I have the feeling that a high pitch tone is developing in my right ear as well (since it pops in sometimes for a few seconds!) Thus some more tones are luring to break in!!!

Anyway I feel (much) better lately despite that the ringings still be heavy at moments), is this already a kind of habituation or isn’t this possible after ‘only’ two months and is it possible that the sound level drops even more in the weeks ahead? (I do not mean habituation but actual lowering of the sound).

Is it possible to measure by certain devices when I need to start wearing hearing protection (hearing threshold so to say). Of course I understand that when it gets noisy (club, crowded pub) I have to wear them for the rest of my live but what about cinema’s, theather’s, swimming pools, running events (all of which enjoy(ed) soooo much). It makes me feel so down.

I wonder if my threshold has shifted (lowered) and that I’m more sensitive to certain noise levels (e.g 83 or 86 dB???)

E.g. sometimes I also have the feeling that when driving the car and coming home the buzzing and beep is worse (do some have the same sensation after certain activities or noise exposure and does it normalize again after a certain amount of time?)

I want to avoid further risk but as well want to avoid to get an hermit.

If I knew that those increased buzzing was only temporary I would be relieved but I can’t let loose the idea/feeling that at one point it keeps at a new higher level!

I’m also concerned that I can’t go to events with my girlfriend and little boys anymore (like football matches etc…). That is also something which makes me down at moments. My lovely family ruined by myself. Sorry for the self pity but that is how I currently feel!


I will marry next year May (with a big party of course ) but hey you know my fear by now… what if… (isn’t this a ridiculous mindset!!!). It should become one of the finest days in life but I'm worried about my damn Tinnitus!

BOTTOMLINE (if not already noticed ); my biggest fear is the future ahead and how well I have to protect myself (I want to avoid over protection but of course even more under protection!)


Thanks in advance for some advice etc…


I will add a profile photo soon !


Kind regards & all the best wishes fellow sufferers,

Dennis

Ps I.m currently testing on my phone Audio Notch music and white noise. It seems it helps but it could easily be an placebo effect as well. As well sound at night (rain).

I never realized silence could be golden !

 

Dennis,
I too have just joined our group today.
I guess with my long years of dealing with this - I can offer you some suggestions.
First of all - please try not to fall into fear mode.
Anxiety is bad for tinnitus.
Tinnitus will not kill you and thinking about it constantly and worrying about will make it seem worse.
It is like a merry -go - round.
The more you think about it the worse it seems.
Don't predict that you can't enjoy activities with your little ones.
When you do stuff with them you will find that the T fades or at least you will be distracted.
Another thing - it is a good thing to always have some soft background noise in your environment.
Silence is not good for tinnitus.
Loud noise is not good either.
I always have some ear plugs ready for situations like loud restaurants, music etc.
Not so great for conversations, but I am honest with people and they understand.
You have not ruined your family life at all.
You are just in a phase of adapting to something new and it is important that you don't turn this into a catastrophe that may not even happen.
Just saying.....
Jill

 

Hi Jill,

thanks for your quick reply and welcome on board as well !

I know that T will not kill me.... it is yourself who does the killing (proverbial of course ) so to say!
I know what I should do but that is easier said then done especially in the early weeks.
It sounds so unreal to get used to this beep (4kHz), buzzing and one intermittent kind of beep plus the uprising of another beep at my right ear!

And I understand that T is not the same for everyone. Maybe there are people out there with a T far worse than mine who life lovely lives! I hope so for them.

So you do the same things as before (with protection of course when needed) and it didn't became worse over those years. Do you get a kind of trigger when the sound becomes to loud. I know some people ears start to ich when the sound is to loud. The problem for me, I do not get a warning I believe. Of course I didn't exposed my ears to high noise levels anymore!


**********

In general: I find this a really encouraging website/forum. If I compare it to some other website/forums; if you aren't depressed yet you wil become it by reading the threads there!!!
Markku congrats for suchs an inspiring website!

 

Welcome to the forum Dennis, go through the posts, lots of good information.

 

hey dennis,
i am kevin and have had tinnitus for about a half year,my dream as a child to play in a rock band came true,but i never dreamed of tinnitus as i never knew about it.....but, you have to try not to dwell on negativity,positive thinking is the first step, i have activities and my main hobby is astronomy,i have telescopes and observe the universe, and do not forget there are others who have worse problems than us, positive thinking over in canada,kevin ( astronomer)

 

My story is similar to yours I had it before in the head but didnt know, then a virus 2 years ago and my life changed.I have a hope to the Mute Button from a Company in ireland. for sale first in 2014 in Irland and uk.

 

Thanks for the replies.

I know that I have to try positive!

I have a lot of hobbies , no problems with that, see some below;
Indoor soccer (plus to the pub afterwards *)
Running
Music
Games (like WoW, Diablo, StarCraft, the Witcher, Anno 1404 to name a few etc...)
Video editing
Cinema *
Going out *
Family life
Hanging out with friends *
Etc....
So no shortage of enjoying life (since we only live ones, I believe!)
But a lot of those hobbies also contributed to my current T issue I believe (never ever thought about protection)

if a put an * behind 'm afraid I may expose myself to loud noises!
I know you can get yourself protected with earplugs (which I have now from the brand ACR) but I'm afraid that might not been enough too (some stories on the net, although protected BAM the T worsened) and at the other hand I want to avoid overprotection (risk of Hyperacusis) (do you understand the complexity!!!).
The fear is also partly because I now release that I had it already for a prolounged time but at a lower level/intensity. Maybe since my youth (a had a lot of earinfections and problems back in the days!).
Thus maybe a next trauma and BOOM new sounds or better noticeble (That whats makes me afraid/crazy!!!)
I know no 2 persons are the same and for 1 person Cinema is not a problem (even with T) but another one has ringing afterwards. And the thought of testing going to the Cinema without protection and than afterwards being hit with a new everlasting sound.....??????? I dunno how to act....
I'm even afraid that a crowded Birthday party or family event, Swimming pool, Amusement Park may be at a certain point too much???

For the above I really need some advice. Thanks in advance!


Jes - thanks for pointing to Mute Button. I'm wondering whether the principle is the same as ACR or that it does use a different approach. Couldn't make out yet. And what the market price of the device will become!

 

Karen thanks.

The positive things of the last two days is that is relatively quite in my head.
But I didn't expose myself to 'noisy' environments.
Thus is seems that I can softening my T.
Also, and I don't know whether this is a placebo effect, but it seems notched music decreased my high pitch sound in my left ear (I removed the 4kHz freq out of my music) to only hearible when putting fingers in my ears! or that this is still part of my ears recovering naturally? I'm still in the so called acute state.
Should I consider this as something positive that my T is not constant?

And the strange thing is that now sometimes when it is quite my T is also mild/softly, however when it gets noisy my T also get noiser? Is this because of me focusing?

Again thanks and sorry for the questions maybe already answered 100 times before!
You are all great persons on the same damn boat!

 

Thanks Karen,

I don't believe it is Hyperacusis because I don't have any unpleasant reactions to any real sounds. At least that is what I believe but I could be wrong of course and don't known yet that I'm might be sensitive to (certain) sounds!?
However, one of the tones (the intermittent one) competes with external sounds. If it gets noiser that one is still noticable and afterwards still is louder for a certain amount of time (I don't no yet if the duration depends on the time of the noise levels before). The beep and buzzing are also more available just after a noisy event but not at the moment when it is more noisy I can't hear them! hopefully you understand what I try to explain, again English is not my native language )

Undoubtly I'm very careful in noisy environments but than again what are noisy environments for me (a not to crowded pub, restaurant) still have to find out (but I hope not to late so to say!).

Regarding the Cinema. does it mean that you don't wear earplugs anymore or continue to use?

Thx

 

Thanks Karen for your nice words.

The good thing about T is that you appreciate certain things in life more (things you always took for granted!).
Nevertheless, I learned my lesson so my T may vanish now .

OK that some kind of relief regarding the Cinema, however, I will do some test first (not putting myself on risk)
1. using earplugs with the highest level of protection (i believe i got around 26 db)
2. using earplugs with 15/17 db of protection.
3. do not use earplugs during the movie itself (after 1 and 2 been succesfull of course!)

The problem is that I love action/sci-fi movies which do a lot of time have some rough actions/explosions.

At the other hand, maybe I do not have issues wearing earplugs during a movie or continue to use (why put myself at risk) and what I read somewhere it isn't the level of sound but the vibration which gives the kick so to say!

 

Thanks but it is such a rollercoaster ride at the moment. I know you should not think about T all the time thus the contradiction of this forum is although it helps it also focuses you on the T!!!!
I think I will limit myself to certain timeslots.

Also after 3 months it becomes chronic thus again maybe I have to stay away the coming weeks (not trying to focus and give my brains some relief!!!) and see what it does for my well being....


However, see also my experience today (from another post [Discussion in 'Support' started by Meestijn, Today at 11:21 AM.] ... it really really gives me bad, scary feelings....

I do not believe it is anxiety alone. If so, than it is quite a dirty sniper! It could be, but I'm really wondering...
e.g. today I went to the companies restaurant. It was crowded with people. I tested the noise level with my iPhone and the noise fluctuated between 85/90 DB (maybe not 100% trustful but it should give a good indication). After approx 1. hour leaving the restaurant my head is full of electricity so to say! I really do not believe it is because me are focusing (of course this may contribute a bit) but certainly is not the only thing. Maybe I should consider this sound as my basic sound and everything lower as a benefit!!!! But so frustrating.... I'm afraid I become a house person as basic sounds are even too much.
I always liked to be social (going out, doing things outdoor....)

Thus an example of my greatest fear... that simple things like a restaurant already too much for me. It is something I have difficulties to cope with! Only 38.... life ahead (I hope). Feels like the old Batman tv series - SMACK, BOOM, SPLASH!!!! into my face.

WHY WHY WHY... currently I can not really handle this...

Hopefully I'm able once to habituate but now.... pfffff.... I really can't imagine.

Now some 2 hours later (after the restaurant visit) it looks like the storm is going down again but it is so so frustrating not able to get a grip on it and simple things already causing increase in intensity!

Thus based on my current restaurant experience, I do believe I never ever can enjoy things like a Cinema without earprotection which saddens me!
Doing crazy things with my boys/family (I'm in tears at the moment.....)

Karen, you really been a help so far, somebody listening to me, understanding the frustration, pain, anxiety etc...

 

I love reading Karens posts. Always compassionate with excellent advice.

 

Yes her words really helped & still helping! I never thought I could become emotional only because of written words but that is one of the side effects of my T. Im far more emotional.

Darren I read your introduction and you are inspiring too!