Nearly a Year...

Hello everyone. My name is Elliot and I have Tinnitus. I’d like to begin by saying that it’s approaching a year now, 22nd January around 2:45 2014 and 9 days before my birthday. I’ll be 23 this year and I want to share my time of personal hell with you guys if you care to read.

It started when I needed a brain scan for slight double vision in my eyes, the scan was on the 5th January and naturally thoughts creep into your head while waiting for results “Is it a brain tumour?” “Is it MS?” Music and video games were my only distraction from these thoughts and on one of those nights, after listening though my headset, I stopped to go to bed and it was there, in my right ear, this high pitched noise. Scared, I tried to wash it out with water, leaving some in overnight. Next morning my ear was blocked with water and I could not get it out. In my panic I used earbuds and drops to try and get it out, I eventually did a few days later, with a days before my birthday and doctor’s appointment. Who knows what damage I’ve caused?

The doctor confirmed it, I had T. Whether it was the volume of the music or the leftover water I’ll probably not know, but I have it. So now begins my pursuit for a cure/treatment and I truly believe science will help. I applied for drug trial AM-101 and was seen by the ENT investigator at the beginning of March well within the 3 month period they say it would be effective. However I was not allowed on the trial due to my medication: Citalopram (for anxiety) and Amitriptyline (for sleep), That was a huge blow to me, as I felt my one chance had gone… but I didn’t give up. I tried again at a different hospital while cutting down the meds and they said I couldn’t because of some social/communication type interview when I was, I dunno 4 or 5 maybe, I’m “not autistic but I’m on the spectrum” whatever the hell that means. Anyway they kicked me out after labelling me as Autistic and in that anger I tried again, but in a bad way. I asked permission from someone to assume their identity as a means to get in the trial, looking back I realised that was a stupid decision but one out of desperation. And, guess what? I got in, but after all that time it was up to 5 months and after 6 the treatment was considered less effective and so I ultimately decided not to go through with it since there was the possibility that it could make it worse.

That was the best decision I made for a while and I believed I could learn to live with it along with the hope of the QUIET-1 clinical trial would help me. During that summer I was somewhat happy I got back into the things I enjoyed. At the beginning of August I started getting this weird pressure in my right ear, the pressure was there the next morning and the morning after until it suddenly got to the point where it was rumbling at the touch around my ears. I had an upcoming appointment at the hospital for a review about my TMD and I thought it might relate to that. The mouth specialist was no help at all and wanted me to refer myself to the ENT. That’s right, she couldn’t do it herself. So I made an appointment with the GP and they said that my ears were heavily blocked with wax, which made sense, since I daren’t to touch them since I got T. After routine olive oil drops and one ear syringing later, no change. This weird rumbling continued and slowly but surely I began living my life again sudden loud and high pitched noises make my ears uncomfortable.

Then came the ear infection, (yeah I know, it keeps getting worse) after continuing to use olive oil after the doctor told me it was the best way to get rid of wax. I don’t know what caused the Infection really but now I had to take antibiotics. It cleared up, but by then I was sick and tired of my condition, when I asked the GP about the ENT appointment, it seems I wasn’t referred. This being October time lasted into December where the GP and hospital tried to make each other refer me.

November and my final blow recently was when I discovered the QUIET-1 clinical trial was no longer recruiting. I decided to do leave the trial for the Christmas period if it was, as suggested, temporary treatment. Seems the drug wasn’t as effective as they thought and they stopped the trial halfway through. Whether it was a good thing to know that without having to be disappointed by participating and finding out that way was irrelevant, my last hope was gone and I sank into a deep depression, wondering if I’ll ever get better physically and mentally. I’m on new pills now, Sertraline. They’ve helped a bit. They’re not making me happy, but I’m not sad either. I have the ENT appointment now, on the 21st January, the last day of a year-long tinnitus struggle.

But in some aspects I consider myself lucky… to an extent. My hearing hasn’t been effected, at least not that I know of. The rumbling is still there and doing the dishes is uncomfortable but otherwise fine. And the T itself isn’t too severe, I’d say mild to mid-range if there is some way to measure it.

There is one more trial I want to give a shot and I know it works. But I don’t know if I can take another rejection. Should I do it?

I have hope for the future, we will find a way. Humanity always does.

Thanks

AM-101 - You can give this a shot if you want.
QUIET-1 - These guys tried (and failed) to meet expectations, but claim they are going to continuing development.

 

Can't really say what you should or shouldn't do here. Just keep in mind though that all these experiments and doctors appointments could be adding to your stress. Maybe the best thing for you right now is to simply allow time to deal with the issue. But, again, it's your decision and if you're up to keep chasing things then knock yourself out.