tinnitus

[kerri lyn angel]

since joining this forum ive learned a great deal about all the problems resulting from an's and also how extremely individual they can be. its also been a blessing to realize there are so many of you out there in the world who live similar lives due to this thing and actually understand what it is like. however i'm curious as to why i dont read more about the tinnitus thing. i think of all my post operative disabilities the noisees and pressure in my head has to be #1 on the list with balance issues running a close second. and for me sometimes simultaneous as they seem to be closely related. ex: have a real bad sound come on either sudden or constant and get a real bad balance problem and headache. my problem is my tinnitus is not static. multiple sounds in there that change randomly. makes me want to scream! it disrupts my whole existence, drives my family crazy, and is directly affected by external noise as well. does anyone else experience this? i had tinnitus along with balance issues and hearing loss which is how i found out about the an but the doctors told me that the tinnitus could either stay the same or dissipate after the translab surgery. ofcourse though i would be deaf on the left side which sounded ok because pre surgery everyone sounded like they were buzzing like bees sucking helium and that was truly disorienting but my tinnitus has worsened post op to the point of distraction with new sounds coming and going at regular intervals and the inside of my head is never peaceful and quiet. i was told that maskers cant help because the sound is not static. i believe it to be true from things ive read. it even interferes with the cross hearing aid iv got and so i never wear it. i have about 14 different sounds along with the regular siren. i can describe most of them but some of them i have no frame of reference for. these sounds actually and obnoxiously wake me up at night 4 to 7 times. ata doesnt seem to have any info on this. any input out there? thanks in advance.    kerri

[Palace]

Hello there.......


That was quite a description.  I will read that again in the morning.  I have to go to bed now, exhausted and can't think.  Your description was long and detailed.  I'm being driven "nuts" with the noises I hear but, what can I do?  It is making me crazy too however, what choices do I have?  I understand!  I will check back in the morning..........



Palace

[BevM]

Oh Yeh!  Tinnitus is a major issue for me.  I've done a lot of research and find little hope of it ever getting better.  I just try not to focus on it and that works a good bit of the time.  Distraction is what I find is best.

Bev

[kerri lyn angel]

dear palace. bruce and bev,  thanks for responding. sorry to have been so verbose. there are just so many topics that i havent had any sounding board for in the last year and a half. and no one ever seems to understand what the internal sounds can do to a person.i used to consider myself fairly strong and even tempered. worked hard, raised my kids almost on my own and was in charge of my life. now the noise is in charge of me. i dont even drive anymore because i have to concentrate on staying in my lines so hard it leaves little time for observing anything else. i never know when a bad noise is going to come and throw me way out of whack. i also use a cane in public because i live in constant fear of falling down when those noises come. i read the nov. threads bruce, and it seems as though you guys all have issues with tinnitus too. i guess i still have to adjust to having to live with fear and having no control over my life. do you find that noisy situations like parties, mall, movies, concerts mess you up and exhaust you for days?    kerri

[Gennysmom]

Kerri, tinnitus is something I've had for 25 years, so I think that's why I put it lower down on my priority list of things I talk about.  I've now had it so long that it hardly ever bothers me unless I think about it, and it's not quiet in any way, shape or form.  What I think is important to recognise is that researchers feel there is a connection between tinnitus and the limbic system, in other words, having tinnitus puts you at higher risk for issues such as depression and anxiety.  Please make sure you don't get to wrapped up into listening to your tinnitus so that it becomes a viscious cycle.  Find a way to get it out of your focus or it will drive you nuts!

[kerri lyn angel]

hi gennysmom,  thanks for the advice. i do try to ignore it as much as possible. and it works some of the time when the siren is constant. but do you get those intrusive random multiple sounds? dilemna for me cuz cant help but take notice. and i believe you are right about the anxiety because i have a great deal of that and i never had it before this. well almost never i did experience it one other time in my life during a divorce. i hated it then and i hate it more now. thanx again.   kerri

[Gennysmom]

I get very short bursts every once in a while of a different sound or the "my heads underwater" sound, but it doesn't distract me for long.  Right now I'm a huge proponent for talking to your doctor about depression/anxiety because, honestly, I had enough going on without having to deal with that too...I was having very pronounced anxiety symptoms and finally asked for a daily anti-anxiety, and it's making a huge difference.  It's amazing how much anxiety steals from your energy reserves.  I feel so much better now, which makes it easier to cope with the other AN symptoms.  We hope that it's temporary, and I can go off them in 6-8 months.  I would also keep a journal about it, as I've been told caffiene and refined sugar can increase the intensity, so you might find changing your diet a little might help, as does having some sort of other white noise to distract your brain with. 

[redgrl]

I didn't know sugar and caffiene can make it worse. I have coffee every day. Oops now i feel dumb! Anyways I know the Kerri. Mine keeps me up at night. I do what gennysmom says and try to ignore it. It's hard but after awhile you get use to it. It would be nice if it would just go away all together. 

[Louzilla]

Hi Kerri,
Your Tinnitus sounds a lot different from anything I've read about on this site.  Mine is now twice as loud after surgery, but it tolerable.   It's a white noise type of constant buzz.  Your sounds much different and more intense.  I hope you can find some answers and relief. 
Take care,
Lou

[Patti UT]

Hi Kerri,
  I feel your pain.  Your's sounds allot like mine.  Of all the post op issues, the tinnitus is the most bothersom. SO bad that there have been days that I felt if I didn't have my kids to raise, I might just want to take something so I would go to sleep and not wake up.  Sleep is my ONLY escape from it, it is so severe it wakes me up several times a night, and keeps me up for hours most nights. It is disrupting every aspect of my life.  I have the vertigo/balance real bad and the headaches are horrible too, but I am adapting to all that, I just want some quiet.  I've read where people say to mjust learn to ignor it.  Ther is NO WAY TO IGNORE something this intensely loud, ALL THE TIME.  Wish I could.   I sure wish someone would find a solution for this.
Good Luck to you in adapting to the noise. It really stinks.

Hugs
Patti

[kerri lyn angel]

hey patti,  well in a way its a relief to hear that someone else can understand what seems to be impossible to understand but i feel bad that you have this horrble thing too. you know it is so bad that when i still had insurance coverage i visited a couple of doctors about it and they didnt understand either. they were used to severe tinnitus but the kind that is static not the kind we have that jumps around from sound to sound . man i just want to rip my own head off most of the time! its maddening. sometimes i think it could really and probably has somewhere in the world drive a person totally insane. lord knows i sometimes think im'm losing my mind!i can take the headaches and the wibbly associated with it but the sound! especially the real nasty one that has no description cuz i just can't think of anything to compare it to. i'm just sick of getting so snippy with my poor husband (its just me and him now since the surgery) he can't understand but its not his fault and i feel so guilty sometimes for being *****y. there is no cure so i guess i better get used to it. i did read once though in the ana notes that a lady was having horrible headaches and some bad tinnitus and that she had a plate, titanium, i think put where they left the stupid fat filled hole and low and behold it not only cured her headaches but also her tinnitus. i don't know if i ever want anyone inside my skull again and i couldnt do it without insurance but it seems to make sense.

[Bob Partak]

Hi Kerri,
I was impressed at how well you described tinnitis. Mine started in 2002 as I woke during the night thinking the smoke alarm went off.Yes, that loud. Like you I thought i would go crazy. I still have tinnitis but over time the brain learns to filter it out IF you don't get overly tired and if you can learn to stay mentaly focused on something else i.e. reading. soduko puzzles, etc. If I think about it, it's there. Like you, if I wake during the night, it's there. Over time you will place this lower on your list of distractions as it will fade - but very slowly. I'm on an anti-depressant and maybe that is helping me to be less anxious and a bit calmer. I  agree with those who say tinnitis gets worse with increased fatique, anxiety, etc.  So don't despare I predict you will expierience the same thing. Keep the faith.  Bob P.

[nannettesea]

Kerri,
Crazycat found a website that attempted to play the sounds people hear when they have tinnitus.  Search tinnitus here and find the thread from 10/21/06 entitled "Does anyone who does not have tinnitus want to hear it? "  It was fascinating.

I don't much trouble with tinnitus, but I would recommend trying acupuncture, which was mentioned by a specialist I saw in Chicago.  I do it once a week and don't have much trouble, except in crowds and noisy environments when it ramps up.

Hope that helps.  We are thinking of you.  BTW, when you say you are disabled, is it mostly due to tinnitus, or all the issues you mentioned?

Nan

[kerri lyn angel]

thanks bob                                                                                                                                                                                              dear nan, the tinnitus is just among the multitude of bad things that leave me unable to do my job of 31 years as a florist. that and the balance thing are what keep me from driving, standing all day, hauling heavy buckets, and dealing with noisy environments. the single sided deafness prevents me from being able to handle phone orders and take care of customers because when i'm on the phone i can't hear anything at all of what's happening around me and that is a crucial part of a busy shop. i am still a great designer but tire easily and become disoriented easily too so i cannot "produce the way i used too at an acceptable pace. also i have headaches, bouts with nausea and have to do the eyedrop thing every 15 to 20 minutes. in and out of noisy cold refrigeration units drives the pressure in my head wild and no longer can handle stairs which were plentiful where i worked. i can do it but real slow and careful and definitely not carrying buckets or big heavy tras of arrangements. down is worse than up. so i am on ssd and have to just look at it as early retirement to keep my sanity and sense of productivity. i wasn't prepared to be this way post surgery but its my life and there are no alternatives. thanks for asking and i hope your holidays are wonderful.   kerri

[Patti UT]

that site had only one or two of the sounds that my tinnutus sounds like. I really wish I could find something that I could let my family listen to that would show them whay I have to hear all the time. It might help them understand.

Patti UT