Tinnitus Support Group

Wendy, I have had high pitched weeks - in fact I came here and posted because I had a full throttle week and I wept - it sounded like a dentist drill in my head. I begged people to pray for me.

Shortly afterwards, it came back down to its old self.

during my worst weeks, I use Xanax to keep calm - it sometimes lowers the tinnitus.

I used to wake up in the middle of every night and with the house dark and quiet - I would get up and pace weeping because the tinnitus felt louder - I don't know if it was lack of sleep and the absolute quietness of the house - oh, it was torture.

I now use Ambien - I take 10 mg every night without exception - I sleep all the way until morning and I feel rested - like, okay, I am ready for those four kids.

Without a good night's rest - the next day was a blur and the tinnitus felt louder.

It's been two years - in January 2010 - I go up for TRT - this is tinnitus retraining therapy -

I am hoping to use sound therapy to get off xanax forever and perhaps back off ambien.

They tell me to expect two years of doing the therapy

I had a full audiological work up by a tinnitus specialist - my tinnitus at all times is on par with the high frequencies I lost in my hearing - almost an exact match.

Apparently, my brain is starved for stimulation it cannot get anymore because of the inner ear damage - so random signals are generated and interpreted as sound inside my ears and head.

I read "Tortured by Sound," found the lady to be helpful - very helpful - but warning, she is whiney - I have whined as much as she has but everyone in my world has been impatient -

So also, she can be annoying - but she was in a car accident - had some chiropractic work done and shortly afterwards woke up with screaming tinnitus - she had perfect hearing - and doctors could not tell her anything.

She swallowed piles and piles of herbal medicine and poured stuff in her nose and ears - but the noises stayed.

She now says she can ignore it.

She went through some sort of depression of "if only I didn't have that car accident...." and lamented about it a long time.

I woke up with sudden hearing loss - moderate - and with the tinnitus - no ENT can explain it to me and they can't tell me if I will experience it again.

Shortly afterwards, I found out my thyroid quit working - info on the internet suggests thyroid problems lead to hearing problems and tinnitus and they are connected.

I berate myself - that if I went for my yearly physicals like my husband does - they would have found it - I would have avoided this pain - I play it in my head about once a day.

I have friends with thyroid problems for the last 20 years and no hearing loss and no tinnitus -

I have taken Elavil before - and no tinnitus from that - but another person takes it and wham, tinnitus.

I would go to an audiologist separate from an ENT and get a full work up on my hearing -

I would also get with my psychiatrist and on the bad days when my nerves are flaring up - I would take some xanax - I would also consider taking ambien at bedtime for awhile - I would see if sleeping through the night would help my nervous system the next day -

I would consider both treatments to be temporary - just to get through the present.

I would then look around for someone working with tinnitus - The US has doctors that have worked with it for decades - keep up with treatment plans and can actually measure your tinnitus - they can also examine your inner ear and look for abnormalities - they can also measure what will mask the tinnitus.

This kind of information can help you feel more proactive - they also offer counseling to take the mystery out of tinnitus and such.

I am thinking you should calm your nerves and get some sleep first though - bad sleep patterns does make this worse - I don't know why - it just makes it feel worse the next day.

Thank you so much MandieGrace.
I only found this site on Monday.

After seeing an ENT who could do nothing, I am scheduled for an audiologist/tinnitus specialist consultation. But, was yours able to offer you ANY help--masking, etc. anything? Just not to have to have it driving me to distraction 24/7. Mine is 99% of the time so high and intense I can barely function and have stopped being able to live my creative life, well, almost any life. And, like you, I have no empathetic support . Then there is the despair and frustration. Why for absolutely no reason, no know change in my habits, anxiety, food, etc does it decide on it's own while I am unconscious to get terrible? That's when I know I'm powerless and get driven to despair. I too tried a bunch of useless homeopathic stuff. Just as you keep thinking about thyroid that you didn't check, I likewise think if only I hadn't taken my doctors advice and went off caffeine none of this nightmare would have happened. I can't take Zanax but have been using Activan. Ambien gives me morning after headaches so, as much as I hate doing, I go with a shot or two of bourbon.

Thank you so much again for taking so much time. I will check out the book but, quite frankly, I cannot imagine every being able to ignore what I've got going on in there.

Wendy,
I have only been on this site for a couple of weeks but I can tell you you have come to the right place.
I, too, beat myself up for ages thinking what I could have done, what I should have done and what I would have done. I have come to the conclusion that it's just something way beyond our control.
I went to my check ups, I visited the dentist regularly, I ate right, exercised, yada yada yada. I still woke up in the middle of the night with tinnitus and total hearing loss in my right ear.
I can offer you emotional support. It's nothing you have done or haven't done. It just happens.
It, too, changed my life. I got to where I rarely left the house except for work and the must do's. Don't do like I did and waste all those years. Get back out there. Find the things you can do to make you life easier and go on from there.
I will pray for your peace and quiet. Let me know if you need to chat.

Thank you Lizzie55. But right now I'm just crying. I would tell you more, but we are supposed to be positive and supportive and right now I just can't do that. But thank you so much for your kindness. My grown daughter and other miscellaneous family members offer zero support.

Wendy212,

You have to understand that T is a hidin ailment and no one can truely understand how bad you feel except for you, your family members just dont understand. Dont feel bad if you are feeling low. Thats why we are here, vent away. This is one of the worst things a person can go thru. We all go thru good and bad days, especially in the beginning. It is very rough for anyone. Just hang in here and keep talkin and posting. Find yourself some distractions. Hopefully soon we will have relief. Go out and rent a bunch of funny shows, laughing helps alot. I have a lot of neuralogical issues aside from tinnitus, yet I try to stay away from the pain killers and just quit my lexapro cause it seems to be agitating my condition.

Pat

Thank you Pat. I will keep coming back. God, its just so hideously, inexplicably, unrelentingly, unpredictably horrible. There seems to be no way to understand it and no basis for hope.

Wendy - you came to the right place for understanding and support. I won't go into details, but I've had T for 25+ years (I'm older than dirt! ~ Well, actually almost 66). Some days the T is screaming (see last week's post) and others it is very low. It is always there, but not thinking about it is the trick. Obviously it is a Catch 22 situation, as soon as you think about it (like reading these posts), there it is. I, too, take Ambien every night and an grateful for a full night's sleep although I occasionally experience a morning headache. Hang in there - and like DarkSon said, vent away. Pat

Forgot to mention - my 37 year old daughter got T after one dose of an anti-biotic about six months ago. It was only after the fact did she check out WebMD and "ringing in the ears" was the first side effect listed.

All of what you just said is true. Thats why I feel its a disease and not related to anything we eat/drink, or breathe. Whether we are born with it or it is viral who knows. We just have to try and cope with it until there is relief. The only thing I have noticed lately is that I have better days when I eat less. Dont know if its related or not but I cant starve myself very long.

Pat

Well, I'm dirtier than you --- 67 tomorrow. How can you have lived a life with this for 25 years!!! It's inconceivable to me. I've been through a lot of badness in life, like anyone on earth this long, but right now this is more than I can accept as a permanent torture and just don't see a way forward.

I am so sorry about your daughter as well. Yeah, Elavil is right up there on the Physician's Desk Reference List of Ototoxic drugs. Not, of course, that I knew anything about that. Too bad that "neurologist" never bothered to read the list.