My Battle with Tinnitus.

Introducing myself

Hi everyone, my name is Tayla and I'm 21 years old. I've been battling with tinnitus for about 8 months now, although it feels like I've had it for a life time! This is going to be a long post, so bare with me please! And if you read the whole thing then I thank you and I appreciate it!

The tinnitus

It started so suddenly for me. I got home from work and lay in bed, just to relax for a bit. I noticed that my ears were ringing. I still remember trying to put my fingers in my ears to see if it was actually my ears or if it was something else because it sounded like a hissing, electrical buzz and I thought that the sound mighty have been a broken fridge or appliance. I was a bit freaked out, but I ignored it and hoped it would be gone in the morning, but of course that was not the case! I was very stressed out and anxious when it first started, so I thought my stress was the cause of my T, so I didn't see a doctor and thought it would go away when life had calmed down a bit. But again, of course it did not stop, I didn't know who I was trying to fool!

When I decided to seek help

I went to my GP after about 2 months of having Tinnitus when I realized that it wasn't going away. She checked my ears and throat and told me that my tonsils were infected. I assumed my infected tonsils were causing my tinnitus because everything is connected and what not. She gave me some antibiotics to take and after the course was complete, my ears were STILL ringing!! I went to the same doctor a week later with the same issue and at the time I was writing university exams, so the stress and anxiety was not making my T any better and I was having many sleepless nights. She checked my ears again and said that she could not see any damage so she gave me some nasal spray and sleeping tablets and she told me to try ignore the ringing because it's "all in my head" which made me pretty angry because I KNEW it wasn't in my head. The sleeping tablets did help me relax and sleep the whole night through, but the nasal spray did not help one bit! The doctor told me to see her again if my ears were still ringing after the finishing the nasal spray and she said that she would refer me to an ENT. Even though the ringing continued, I didn't go see her again because I felt like she wasn't very helpful at all.

The ENT

I took it upon myself to find a good ENT and book an appointment with him. Luckily the one I saw did not need a referral letter. He asked me about my symptoms and what I was experiencing. He asked how loud the tinnitus is and if it's only in one ear, or both. He then conducted a hearing test which showed that my hearing was fine for my age and there was no damage. Because he couldn't visibly see anything wrong, he requested that I have an MRI scan. The thought of the MRI scan and what they were looking for during the scan freaked me out and caused me major anxiety! Of course, Google freaked me out even more because I learned what an acoustic neuroma was and I convinced myself I had one and that I was dying! My MRI scan results came out clear, (thank goodness) which left me wondering what the heck was going on with me and what was causing my ears to ring like this! The ENT told me that I was young and it should probably go away, I think he was just saying that to give me some hope!

Psychologist

Since I was not able to get medical help, I sought the help of a psychologist because I was starting to think that my tinnitus was psychological. We did Cognitive Behaviour Therapy and tried to find ways to help me relax and change my views and thoughts about tinnitus. It did help me slightly, but it's only helped me to relax, it hasn't actually stopped the ringing.

The whole time this was happening, my wisdom teeth were giving me issues but I didn't pay much attention to them because I was more focused on the ringing in my ears! After all the appointments I had with still no hope of figuring out what was the cause of my T, I began to think that perhaps it WAS my teeth causing the issues. I know this seems silly, but I had ruled out every other possibility already and I just did not know what the cause was.

The dentist

I booked an appointment with a dentist so he could see what was going on with my wisdoms. He took an X-ray and said that my wisdom teeth definitely need to come out, but he noticed something wrong with my jaw on the X-ray and referred me to a Maxillo-Oral and Facial Surgeon (a jaw and head specialist). I felt like I had been to so many appointments in the past few months trying to figure out what was causing my tinnitus and I was just so OVER IT! I told myself that I had to do it and I booked an appoitment with the specialist. He was very busy at the time, so I only saw him a month after my dentist visit.

The Specialist

The Maxillo-Oral and Facial Surgeon checked my teeth and my jaw. He put a stethoscope on my jaw and asked me to open and close my mouth while he listened to my jaw. I explained all my symptoms to him and he told me that it sounds like TMD (not sure how to spell the whole thing, but basically it's a jaw joint disorder.) My jaw's cartilage was out of place and it was causing my ears a lot of pain and it was possibly causing the ringing too because this jaw joint is located pretty close to the ears. When I bite/clench my teeth really hard, the ringing is louder, so it's possible that the jaw and the ringing is connected. My jaw joint is out of place due to clenching/grinding my teeth when I sleep. The specialist did not have any solutions for me. He told me that my wisdom teeth need to come out and that I should get a bite guard for when I sleep to prevent grinding, but those things cost R2000 in my country (probably about $200) and medical aid does not pay for it, so I'd need to pay for it with my own money!

The Solution

For now, I have no solution! I'm just trying to live with this tinnitus and hope that it goes away. I have been using techniques I have learned from the psychologist in order to relax and calm myself down when the T is too much. I'm wanting to get a bite guard, but like I said, they're really pricey and I don't know if it will work or make my situation any better. Do any of you have TMD or problems with grinding your teeth at night? And if so, how many of you use a bite guard and see results?

Tinnitus and Mental Health

I have recently been thinking that tinnitus and mental health are closely linked. I have been looking online and a lot of the things I read say that there is definitely a connection between tinnitus and depression. How many of you have tinnitus and have been diagnosed with depression, anxiety or any other mental health issue? Did your tinnitus start before or after you were diagnosed or has the tinnitus caused you to become depressed/anxious? I have read that lots of people have found relief with the help of a psychiatrist. Tinnitus that is not paired with hearing loss or damage could possibly be psychological or could be the result of an underling psychological issue. I know that living on tablets is not the way to live, but sometimes you gotta do what you gotta do! Are any of you on any sort of anxiety or anti-depressant medication? If so, is it working and is it helping with the tinnitus? If I do see a psychiatrist, then which meds should I take and which should I avoid?

If you have read all this way, then I thank you! Feel free to message me whenever you need to, my door is always open! I love to help fellow sufferers because nobody else really knows what you're gong through! ❤️

 

Sounds like you went through the whole run down of the doctors who don't have any solutions. Like you, I went to every doctors and heard all their BS about what was causing the tinnitus. I tried all their medicines, their jaw relaxing techniques for TMJ, did stress relieving meditation, even bought the $1,500 headphones to mask and cancel out the tinnitus noise. None of that crap works. None of it. There are plenty of people out there ready to make a few bucks on the desperation of sufferers, but the simple fact is, we don't have the technology to "cure" tinnitus.

There is only one thing on this planet that actually relieves the stress of tinnitus. That is to stop fighting. Stop hoping that it will go away. 99% chance it's not going away if you have had it for 8 months. Once you accept that and you truly come to terms with it, you will begin the process of healing and assimilating the tinnitus into yourself. After 6 months or so of this mindset, you won't really hear the tinnitus much anymore.

 

Hello Tayla - I have been through exactly the same you. I still have Tinnitus but I'm not bothered by it any more - mainly because I am now on Amitryptaline which makes me feel like a normal person again and the T noise is now only a -- so what--!!

The other thing that has helped tremendously is that because I have hearing loss at the high tone level, I have been persuaded to give hearing aids a try. So I have been wearing these now for a month and unbelievably, they have masked the sound of T and I hardly notice it now. They are also very small and not noticable - I love them.

There's no one solution - each of us has had to work out the solution for their particular situation. There may well be something out there that will give you relief.

Hope this helps you.

 

Thank you Tyler and Andrea for taking the time to read my story and reply! Tyler, I have accepted it now and I have accepted that this is the new silence for me. It took me a while to accept it and to learn to live with it, but I think I finally have. Like you said, you can't fight it because you'll only do yourself damage and make it worse. I feel like I have days where it's really unbearable and debilitating, but I try my best to stay calm when I have days like that. Lately I've been feeling like I'm not myself and I just don't feel normal as much as I try to act normal. I've been thinking of seeing a psychiatrist just to maybe get something for when I'm having a really bad day. The shit thing is that I don't want to have to rely on meds all the time to make me feel better. I'm usually a person who's against all that and I usually go for a natural approach, but natural doesn't seem to be working for me. Andrea, you mentioned that you're taking something that helps, what are you taking and how do I go about getting that? Do I see a doctor or psychiatrist?

 

Hi Tayla,

You wrote a very informative post.

You definitely did all your due diligence by taking the medical route. Prior to the onset of your tinnitus, were you exposed to loud music, sick, or did you take any medication? Did you go on an airplane or driving long distances in a convertible or with open windows?

As for treatment, the best solution offered is just to stop fighting it, accept it, and ignore it as best you can. When I first got tinnitus (via noise trauma - car with load motor roared by and my ear popped) back in March 2016, I was beside myself with stress and anxiety. I was having silly suicidal thoughts until I said to myself "hey idiot, you are 43 and want to end it all due to this nonsense?" About a week or two went by and I gradually stopped fighting it. It takes time, but you will habituate to the ringing and your nervous system will not react to it in a manner that will cause anxiety. This is what they call 'habituation'.

Needless to say, when (not if) they find a cure to tinnitus, it will be a multi-billion dollar business. Not sure if it will be performed as an outpatient procedure (ie. lasik) or via pill (ie. Harvoni for Hep-C cure), but there will be a cure. Until then, we are to live our lives, be kind to others, and smile!

 

Thanks Tayla

I have spent time looking at options to help me minimise the T. I have actually gathered up quite a long list which contains info about what has worked for some people - all of which will have some kind of side effect - but then again, sometimes there is just a tiny risk of that.

Once I had some idea about the options, I checked them all to see if there had been any clinical research on them and the results, I would also check with WebMD to see what the risks are.

For example, I have tried rTMS (repeat transcranial magnetic Stimulation) - it did not work, but the evidence
shows it has worked for about half the people who use it. There are some drugs (Retigabine/Trobalt, which have been shown to be very effective in reducing T, but they come with very high side effects - and in fact these drugs are going to discontinued for that reason. But, these drugs are going to be refined to be more effective and targetted and with reduced side effects - this will be time in the making as they will have to start clinical trials all over again. These drugs appear to provide the only real positive effect on T.

The simplest, easiest and most cost effective thing that I did was to come up with a shortlist of drugs that could help with both depression and T and to discuss them with my GP. I can share that with you if it helps - they were -

1. Amitrityline - see PUBMED 11771024
2. Nortriptyline - see PUBMED 2817678
3. Mertazapine - no PUBMED reports, but recommended by Psychiatrist

Off-label drugs (designed for another purpose but found to help with Tinnitus)

1. Clonazapem - see PUBMED 22628945
2. Cyclobenzaprine - see PUBMED 22541838
3. Acamprosate (Campral) - see "Tinnitus 1-2-3

My GP is wonderful and we have agreed that we will do our own clinical trials on what will work for me. So we started with Amitrityline and I feel completely normal now - at some stage I will come off it, but for the time being I am enjoying "quiet times" although when I do hear T, I am not phased by it.

I mentioned to you about hearing aids, and they made a huge difference. Spookily they reinstate the "Tinny" sound of life, which is almost the same noise of my T, but the high sound is now in the right place.

I now have data about many other things (too big to put on TT.) But happy to share this info a bit at a time. The main headers are -Technology based, Supplements and Anti depressants. Also, websites that provide information Let me know if this is of interest. The critical thing is - we all have to find our own way through T, and each one of us has different responses to treatment options.

Keep your spirits up . I am able to forget about T for long periods, but that is always when I am brain engaged, rather than brain idling - if you get my meaning.

best wishes
Andrea

 

Hi Mike, thanks for reading my post and responding I was not exposed to loud noise or any of that, my T was very sudden when it started. I feel like my feelings about T go up and down during the week. One day, I'll be feeling fine and positive and I won't let it get me down and then the next day I'm in such a state and wanting to die! I've also been having those thoughts, but then I feel really stupid for thinking that way. Im 21, I have so much to live for. I really can't let this T get me down as much as it has been. I have definitely come to accept it and I do feel like I'm used to it now and that I've "habituated" to the noise, but lately I've just been having days where I let it get me down and those days are really shitty! Andrea, you've been so helpful! Thank you so much for explaining everything to me. Are those tablets you listed used for depression and anxiety? Is there any chance that they could make T worse? I have a job and work Monday - Friday, so my mind is occupied most of the time. I get anxiety thinking about going home because I know I'm going to hear the ringing once I'm relaxing!

 

Hi Tayla

I am on Amitriptyline - its a Tricyclic anti-depressant, also used for pain relief. I understand that its not habit forming - it just makes me feel normal. There are no drugs that are entirely free of side effects. So I can't say that this one will not make T worse, but it has not made mine worse.

To get over the quietness of being at home (and hence the loudness of T) I use an MP3 and I've tuned it to listen to Radio 4 in UK, where we get an unbelievably good range of interesting, funny and informative programmes - I just have it on low and it tinkles in my ear and I can focus on it and enjoy myself.

Tayla, I do hope this helps you.

 

Tayla read your post and no exactly how you feel. I did the MRI, had dentist check my teeth, took every vitamin and suppliment known to man and nothing had any positive impact on my T. Presently I take a low dosage of xanax in the day and low dose of nortrypliline befor bed. I feel much better than I did in the first few monthes of T. I plan to ween off these drugs when I feel that im completely habituated. When im busy I dont hear it at all and since the starting the meds I get some periods where the T isnt as loud. I also have the high pitched T almost electrical sounding and is very hard to mask. At night I play nature sounds like birds chirping and really helps alot. I have always been a gym rat and my ENT suggested I take a few weeks off and see if it has any effect on my T. Anyhow I hope that you find some relief and that your T goes away witch at your age and no hearing damage it very well may..

 

Thank you Andrea and William for being so great and helpful! I will definitely take what you said into consideration thanks so much for all the advice guys, I'm so glad I found this forum!