Hi and THANKS!

Before I go into my story, I want to thank all of you for helping me survive (so far!) this truly awful condition. You really have been a lifeline that I was grateful to grab while drowning under the sound of T.

I think I had some mild tinnitus in the past, but around the middle of October 2013 and into November it suddenly got worse. Like most of you, I went to the ENT (hearing normal, no wax buildup) and then to my GP (blood work normal, carotid ultrasound normal) for answers. All I was told was to try lipoflavinoids and avoid extra salt. The ringing was horrible and I suffered from dizziness, which I think now was a result of lack of sleep and the anxiety I was feeling. My GP prescribed Antivert which helped with the dizziness and somewhat helped me sleep. The dizziness subsided once I started to sleep better.

Looking back, I'm pretty sure my somatic T was caused by heavy-duty dental work I had at that time: 2 crowns in the back of my jaw. When I told the dentist about the T, he said it was probably jaw related, and gave me the name of an orthodontist/TMJ expert. I went for a consultation and they did X-rays. The recommendation was to have dental splint therapy that would cost $2700 and was not guaranteed to help. I researched everything I could about this type of therapy, and when I saw that the TMJ Association was NOT in favor of it, I decided to wait for a while. I was hopeful that the nerves that were affected by the dental work might repair themselves and the T would go away. (So far that hasn't happened.)

Meanwhile, I was in a terrible state…wishing I could die; depressed about the future; crying and literally banging my head on the wall at times when the T was particularly screeching. I also suffered from Hyperacusis; the loud parties over the holidays were hard to bear, even with earplugs. My niece (a psychiatric nurse) wanted me to go on Zoloft, but I've never taken antidepressants and really didn't want to start now. I thought I'd tough it out for a few weeks, and if I couldn't handle it, then I'd try the pills.

The surprising thing was that many times when I mentioned I had Tinnitus to friends or acquaintances, several would say "Oh, I have that". However most didn't have it at the severity I was experiencing at times…a high-pitched electrical screeching which seemed to permeate my entire brain. Just touching my skull sends a "zap" through my head. Luckily, I was having some low T days which helped me survive the bad ones. When it first started, I called my brother who has had T for over 20 years. He told me I would get used to it. "Never!" I cried. He said he hardly ever notices it now, and even when it's particularly loud he can ignore it or play jazz to mask it. He actually didn't want to talk about it with me much, because just the mention of it brought it into his awareness again.

One of my friends recommended myofascial therapy/massage, so I started going in mid-December twice a week. The therapist seemed to think my neck and jaw were the culprits, as well as bad posture from sitting at a computer 9-10 hours a day for many years (and before that, a typewriter…yes, I'm that old). The massage did make me feel better, and I think it helped me emotionally and mentally, but it didn't have much affect on the T. I stopped going last week.

I stumbled across the Tinnitus Talk forum about 6 weeks ago and have been reading just about every post for suggestions, reassurance, vitamin recommendations, etc. I can't tell you how much it helps to read your stories – just knowing that other people have experienced this and have habituated gives me so much hope. I now feel I've turned a corner. I CAN cope…even on the bad days when I want to cry. And when a day is particularly bad, I say to myself "tomorrow will be better", and usually it is. Plus the Hyperacusis has gotten better, altho I still can't stand loud restaurants and haven't attempted going to a movie since the T started.

As far as my dos and don'ts, I haven't quite figured them out yet. I'm taking a lot of the vitamins suggested on this forum, but can't tell if they're helping. White noise does help…I use a humidifier at night and the motor hum helps me sleep. I pretty much changed my entire diet (no caffeine, no processed foods, no sugary foods, no salty foods) and altho I lost 10 pounds (yay!), I can't say it helped the T. Lately I've tried some of my "forbidden" foods and don't really notice any spiking. I do think staying active is important; I felt the worst when I huddled on the couch feeling sorry for myself. I still sing in the church choir and I'm actually in a bell choir (torture at first, but not too bad now with earplugs). I sure would like to know why some days are relatively quiet, and others just the opposite. For a while, I was sure that barometric pressure was responsible, but now I don't see any correlation. Oh, well. T is a mystery and I sure wish Sherlock could crack the code so we could all live in peace.

Sorry this was so long, and thanks again.

DebS

 

Nice post!!

 

Thanks, Carol...
Of course yesterday when I wrote this I was having a low T day and felt pretty optimistic. I didn't get much sleep last night, so today T is medium bad and annoying and I'm not feeling nearly as hopeful. Are you habituated yet?

 

Hi @DebS
Thanks for your post - and it's great you are having low days mixed with some bit so low days ... Every low day is a blessing

I'm 7 months in and the road to habituation seems like a very slow one for me, an excruciating slow crawl but I'm optimistic I'll get there.

You will too