Just Had to Get This Off My Chest

Hi, sorry this is so long, but I just need to get it out. I hope you understand.

I don't know what caused my T. It might have been a trauma from an auto accident a very long time ago. Does T rear its head 25 years after an event? I don't know and neither does any doctor I've ever been to and there have been way too many.

It just appeared out of nowhere 9 years ago during an aqua exercise class. My anniversary of 10 years is coming up soon; May 5th; Cinco de Mayo. I remember, because I was to meet friends for Mexican food & Margaritas. Friends that really don't want to hear about the T anymore. I don't blame them, I feel the same exact way. My life has been more on the sad than really happy ever since. I really do try to be happy and some days I succeed, but the T is always there to ruin it whenever it can.

I've have so many treatments; I really can't remember them all. I do know I have spent about $50,000 on this horrible condition but to no avail.

I've had sound therapy, sound masking, acupuncture (3 rounds of at least 3-4 months each with highly recommended professional and experienced therapists; Eastern, Western and New-age, which was the most fun, by the way). They all helped with my anxiety so that was good, but did nothing for the T.

I discovered I had TMJ issues & had expensive dental treatment which included Botox, PT and custom made day & night guards & that helped my TMJ, but no help for the T.

I do have issues with my cranial/neck/shoulder/trapezius from that old auto accident.
I've been to neurologists, chiropractors, craniologists, osteopaths, physical & massage therapists, etc. Each has helped with my muscles and spine, but no help for the T.

I've seen ENT's, had MRI's & cat-scans, been to talk-therapists, tried psychiatric medications (HELL NO!), done mindfulness, deep breathing, and all the mumbo-jumbo recommended. I even went to a hypnotist! I had my chakras aligned, done holestic therapy, used organic CBD hemp oil, took probably every
supplement out there including "special" Tinnitus formulas and specially prepared concoctions, most have helped with anxiety, but no help for the T.

My doctor said I might have Sleep Apnea, so I took a sleep study & of course, was diagnosed with mild SA, so now I sleep with a freaking CPAP mask. But it's helping me get my energy back, so that's good, but no help for the T. I do use Xanax at bedtime to help me sleep. because its no fun putting a mask on your head with air blowing in your mouth every night to just try to get some sleep.

I do have hearing loss now from the T & wear bi-lateral special "tinnitus" hearing aids. When these wear out, I will go to Walmart & buy ones that cost 90% less. These do help me hear better, but no help for the T.

I have medication-controlled high-blood pressure. I do notice when I eat salt, have an occasional cocktail or wine, eat any type of sugar or carb product, use caffeine, eat chocolate (you know, all the fun stuff) the T spikes.. allot. I try to avoid these as best I can. Avoiding these doesn't make the T go away though. It just reverts back to it's annoying horrible steady buzz or siren; depends on its mood. It never goes away; its 24-7 and that's that. Anxiety, whether legitimate or just random for no apparent reason, makes the T spike for days.

Lastly; To the multiple doctors (especially those holier-than-thou ENT's) who have told me, mostly without compassion.. You have Tinnitus; live with it.

I think you know what I wish for them. I really do know it's not nice or appropriate, but Karma is a bitch.

 

Here's the most likely culprit for your T (since you claim you don't know where it is coming from): your hearing loss. You're not getting hearing loss from T, you're getting T from hearing loss.

Be careful with those: many cheap hearing aids will just blindly amplify sound with little to no regard for safety. They'll happily amplify above safe levels, and that could mean an acoustic trauma waiting to happen. I don't know which HAs you are thinking of at Walmart, but please be cautious and understand the safety they provide before wearing them.

Good luck!

 

That's a lot of money for sure. But, I would also say that if you are going to spend "big cash", then try to gravitate more towards experimental therapies that may remain unproven, but with a potential for working ‒ as opposed to those that likely do not work or have been proven not to work (e.g. acupuncture, tinnitus concoctions, adjusting of "chakras", and so forth). Treatment modalities like LLLT, stem cells, rTMS, ACRN, and perhaps a few other interventions (like local procaine injections for whiplash injuries) is what anyone should be considering if they are keen on attempting a course of action which might help...

Patient history, as opposed to objective diagnostics, is the way to go when trying to find the cause.

 

GregCA, I thank you for replying. I almost agree with you about the hearing being the cause of the T. I’ve read about the auditory nerves trying to make up for the phantom sounds it thinks it hears, or whatever the exact explanation is. But when I first got T, one of my very first tests was a complex hearing test with an audiologist. I had no hearing loss & it remained within the normals ranges for 3 more years with the testing coming back slightly off after I’ve had T for more than 4 years. Does that make sense? If it does, I’d like to know why if you do know. Thanks!
I was joking about getting aids from Walmart; just frustrated with the $6700 price tag & the second the Warrenty ran out, I needed about $800 “fixes”! Ha

 

Attheedgeofsvience,
This money was spent in quiet desperation in the beginning years. I did neglect mentioning that I did have several injections. I don’t think I had procaine, but I know I had Lidocaine & one another cocktail, of steroids, I believe. I also did do a sound therapy, which did nothing for me.
These experimental modalities; have you tried any and did any work for you?

 

I'm sorry that you are suffering You have tried so many things and tried to make your tinnitus better. It's totally understandable how you feel. For many years early on, I use to try everything as well and thought maybe something was going to make my tinnitus better.

Tinnitus is a horrible ordeal and it can cause so much stress and simply make our lives difficult. I have been to many ENTs as well and they had no solutions for my tinnitus either. For me audiologists were more helpful than ENTs. One of the things I suggest is that you keep a diary/journal of your activities. Try following some good practices and see if your tinnitus get better.

It's not always the case but if you:

have a better diet
less stress
possibly some exercise (safe for you and your tinnitus)


I really do feel for you and I have been in your shoes before and it does break my heart, that you are suffering like this. Please hang in there

*Remember that you are not alone, we all walk together in this*

 

Hi. I don't want to impose my opinions but I also think that your tinnitus is from hearing loss bc all of these treatments you have mentioned work for people whose cause of tinnitus is not hearing loss.... You may have had a perfect hearing, but maybe you lost your hidden hearing..... As far as I know these audiograms that even measure the hidden hearing are not very reliable since the hearing is a complex thing...... Who knows what is going on in your ears since no one can really look at it..... Still, this is only my opinion.... Maybe , others know more.... Good luck!

 

For example, look at me... I had an acoustic trauma and I got tinnitus and even hyperacusis... still my hearing is normal.... I guess my hidden hearing is damaged (the synaptic damage)..... But no one can confirm me this since there are no real tools...... How do you explain this phenomenon???

 

I think it does yes: that's because there is such thing called hidden hearing loss, ie damage to your hearing that is not visible on an audiogram. You can read up on it in Charles Liberman's research, and also Roland Schaette's talks.
What I think happened to you is that you had damage to your auditory system that was not visible on an audiogram, so you thought your hearing was "perfect", but it wasn't really. And that damage triggered T, and you kept thinking that your hearing was good but then you saw it degrade and it became visible on audiograms, so you blamed the T for the loss.

 

@Quiet please - you can do a search in the forum on attheedgeofscience name and you'll see his posts on the stem cell treatments and LLLT that he tried. Also he's experimented with some drugs - namely Trobalt (which you cannot get anymore) - and has experienced almost complete remission from his tinnitus.
I have had a stem cell treatment also however it has done absolutely nothing for my tinnitus and by far the best "treatment" for me so far has been habituation. I just want to get on with my life and when I changed my mindset, everything got better. Easier said than done, I know as you've been living with this for a long time now, longer than me.

 

Quiet please you have been through a lot!! When you found the anxiety level lessened did it have any positive effect on your tinnitus? Did it bother you less without anxiety?

I so remember in 2002 sitting in the dentist specialist office saying "do your realize the amount of money I have spent on this?"

 

@Quiet please, Why don't you use an oral appliance for TMD and sleep apnea? I don't like CPAP either. This one pulls your jaw forward to open your airway and repositions your jaw so the condyle is in the proper place. I am just as disgusted as you with no solutions to this obnoxious noise.

 

Justonemorething, I guess I didn’t mention my CPAP oral appliance saga/nightmare from hell. After spending thousands of dollars at this fancy dental TMJ office, I finally had my TMJ stabilized after 1 1/2 years of treatment.
Fours years later along came sleep apnea & I was given the option of the dental apnea oral appliance you see here or a traditional CPAP machine. My very experienced sleep doctor and my new less expensive but still outrageous fee-based oral surgeon both recommemded it although they were both told I had a severe bout with TMJ years back. One wrote the script & the other took the molds. $2,200 later, I had this colorful beauty. The sad part is it actually worked for the Apnea, but of course it retriggered my TMJ and upon waking each morning, I could barely close my jaw. Several adjustments and shavings did nothing to change that sad fact & no refund, of course. I’m thinking of using it as a paperweight now.

 

Equalizer, BINGO! That’s exactly my point. I was desperate and my pocketbook was my enabler. We made a fine team.
By the way, the chakra alignment was a gift from a dear friend who wanted to help me out of my misery. I think it cost her $70.00 and I must say, I enjoyed it immensely. Of course it did nothing to quiet the T, but it was fun and distracting.

 

You have strange friends.

 

Starthrower, Yes; most definitely when my anxiety is reduced and sometimes, but rarely temporary diminished, it’s heaven. The T behaves like an admonished child caught with their hand in the cookie jsr. But it always comes back. Of course it does.

 

GregCA, Thank you. I will look up the research you mentioned. What do you think I should do now?
I was thinking having my auditory nerve completely snipped and be done with it. Maybe being in a totally quiet place is what I crave. It’s my name after all.
Just kidding; I’m slightly off these days, but still not entirely stupid. Thanks again. I look foreward to speaking again. Probably after a good cry.

 

threefirfour, Best not to judge lest we be judged. Yes, she is a bit eccentric but very sweet. This lady lost her husband and only child in an auto accident and went slightly mad for a while. We visited salt rooms and had psychic readings too. The very sad part is she really believed in it and I just went along for the ride.

 

Well that's a bummer. I feel sad for her but very mad at people like that for taking advantage of a clearly devastated woman. Some people have no values.

And to reply to people, you quote them or put an @ at the beginning of their name. This is how they get notifications that you mentioned them.

 

SamathaR, you seem to be a lovely young lady. I thank you for your insite and recommendations. At my age & for as long as I’ve had this whirlwind in my head, You would think I’d have been habituated by now. Sometimes I think I am because there are times when I can completely ignore it. But that happens only when I’m at work. I’m rather busy and the flurry of activity keeps the T at bay. But when I’m home with family or out with friends, it doesn’t work. I’m sure it’s me. I’m defective somehow. I used to love to sit quietly with my dog and read a good book or listen to soft music. Thats just gone now for me. But I still try.

 

I am thinking you are joking regarding cutting the auditory nerve since that is actually more likely to make your tinnitus worse. It’s very difficult to hear around tinnitus when you cannot hear.

 

@Apollonia, If what you say is true. Of course I have no reason to doubt you. Then it’s truly hopeless. It will never leave me. I rage against it mostly. I should grow to love it. Maybe it would be nicer to me.
I do most of what you say. I watch my diet carefully. I bought an indoor bike for the horrible NY winters. I use a tranquilizer every night & drink only herbal teas. What more does it want? Who knows. Nobody.

 

@TinkerBell. Love your name btw.
Yes, a macabre joke; I would never do that truthfully. Sometimes I get like that especially when I can’t sleep like now. It after midnight now in NY & I should take my tranquilizer and go to sleep with my CPAP mask firmly affixed to my face. What a sight! It’s quite comical.

 

@threefirefour. Thank you, I learned about the @ just now from you.
The holistic center we went to was really a fun wacky place. The “psychic” really did no harm. She just assured my friend that her loved ones were at peace & I was grateful she left there with a smile on her face. Something I hadn’t seen for months. She hasn’t been back except for the chanting sessions. I don’t go, because they annoy the T.. of course. It’s done by Tibetan monks & I was told it’s quite lovely to hear.

 

The harm is the money they're taking off of her. Using someone's vulnerability as a means of getting their money is never good.

Weird your friend is going to chanting sessions with Vajrayana monks. Having grown up in a Buddhist family I'm definitely very friendly to it, but it's still full of serious woo. Your friend sounds like a great person, I don't want her going down that path.

 

@Apolonia, Yes. It makes sense. But why (like anyone knows) would I have hearingnloss when all my life I listened to soft music & never went to loud events.? As a matter of fact, I was VERY sensitive to noise. Maybe that’s a clue. But what’s the difference st this point? Until they can regenerate ear hair cells, there is nothing that can change it. 2 years ago I woke up with SSHL in my left ear. Fortunately my ENT was in his office & told me to come in immediately. He gave me steroid shots in my ear for three days in a row & I recovered 60% in that ear. I was lucky.

 

@threefirefour, Thank you for your kind words and concern. She has family & friends who look out for her and love her, including me. We’re meeting tomorrow for a massage & lunch. It’s been several years now & she’s better. She shifted her grief to a kind of gentle sorrow for me. It’s sort of my job now to tell her I’m ok. I find if I say it enough, sometimes it’s true. Friends help friends; it’s good. The monks only come to the place once a month or so. Richard Gere has something to do with it. He owns a restaurant in the area and is very friendly with the locals. She has a good time & money is not an issue. It’s more important she’s happy.

 

Pretty much like the rest of us who are in the same predicament: figure out a way to "live with your T" the best you can, make sure you have healthy habits (diet, etc), protect your ears from loud sounds, and finally, keep an eye on the research (you're likely to be interested in research related to hearing restoration, but also what can help tinnitus, like the device worked on by the Susan Shore team). Optionally you can also be an advocate and raise awareness of T, or donate to research: basically give time and/or money to the cause so that we can all get better sooner.

 

Hi Quiet please
You’re not defective at all. T just loves a low mood, tired and feeling down? it just laps it up.
When we are able to be busy and not attend to it then we manage but when we’re underpar it’s so difficult to manage as I know.
Eve

 

Oh. I didn't know that. Thanks threefirefour.

opps @threefirefour


@Quiet please

Same here Quiet. My brother was in the hospital with pancreatic cancer for an entire year. He was hooked up to all kinds of different machines. I took him a few crystals that were meant for healing knowing he was into that stuff and it made him happy. I told him he could throw them at people who annoyed him. He is now cancer free and one of the 2% survival rate. Why? Who knows. Who cares. He thinks it was his religious beliefs and if that is what he believes so be it.

People will call or send me different things they come across regarding tinnitus. I always thank them because it makes them feel better or something.

I enjoy your humor. Not that this is something humorous.