I want to preface this by saying that I do not intend to minimise or downplay others’ suffering. There are lots of people on here with cases far worse than mine is and I am all too aware of this. Also what worked for me may potentially not help you at all or in a worst case scenario make your own tinnitus worse, I’m simply stating what happened to help me.
With that said, I was briefly a bit of a regular in the “Suicidal” thread on another Tinnitus support forum which is probably a good indicator of how I was feeling when my tinnitus initially worsened due to Cisplatin chemotherapy. It had been mild/quiet room only for 15-16 years and then it suddenly wasn’t, to say that the impact it had on my quality of life was severe is an understatement, even if looking back it’s probably moderate tinnitus at worst.
I became an insomniac for the better part of 2 months, sometimes going for 3 day stints without sleeping and I was unable to not hyper fixate on it, I lost the ability to engage with conversation, my hobbies and just…life in general. It all contributed to me almost rejecting the third and final chemo cycle and just letting myself die of the cancer if it came to that (a sentiment I expressed in the aforementioned Suicidal thread at the time) so yeah, it was pretty grim at one point.
My anxiety was so intense I was physically shaking, teeth clattering and throwing up whatever I tried to eat. I was started on Sertraline which I knew had the potential to worsen it but I was beyond desperate and felt I had nothing to lose so I accepted the prescription.
Then a few days into it on May 28th I actually felt like myself for the first time in over a month, I had a friend over and was able to have periods where I ignored/forgot about the tinnitus, which I didn’t think would ever be possible again.
It wasn’t all uphill from there, I definitely had setbacks and after 2 weeks I upped the dose from 50mg to 100mg a day, using Diazepam not out of habit but as and when needed when I was especially panicky, using that less often now. But eventually I found my new normal was essentially like it was pre chemo, just with the occasional distraction from the heightened noise.
I am now back to living my life as it was before, just with a pair of earplugs always in my pocket. I wear them in the cinema or in loud/crowded spaces just to air on the side of caution.
I count my blessings it isn’t severe enough that it is possible for me to have gotten to this point so quickly and I deeply feel for anyone who has it worse than me, especially those with hyperacusis.
I am also sleeping again even though the noise hasn’t gone down any, which for me feels like nothing short of a miracle. I was going stir crazy from getting so little sleep.
Best of luck to everyone on here, and may we someday have an effective treatment for this god awful disease.
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Masterfox66
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I feel very similar about my journey although it started from loud noise exposure. The noise I have now I couldn’t tell you if it’s a little better or little worse than when I was first hit with the increased volume and intensity of my T. But my emotional response to it now is absolutely poles apart from the worst moments. I go in to quiet offices and quiet rooms to sleep, I hear the noise instantly and quite intensely in these environments. But I have zero or at worst a very very slight emotional response to it. Occasionally (couple of times a month) I have trouble sleeping which can usually be soothed by a combination of a familiar relaxed film and some white noise or similar over the top. Usually I know off fine though with no masking at all, which like you said, still feels like it shouldn’t be possible/ feels like a miracle. I remember speaking to someone on the tinnitus helpline when I was desperately struggling and they said something like “your body and mind will adapt, and you will be able to sleep again”. I didn’t really believe her but here we are.
I find sleep impossible. Just over 3 months in. Persistent T. Sleep is the hardest part. I’m very anxious and hyper focused on the T. In fact, even though I no longer have hyperacusis - I still have extremely high anxiety towards my T. Mostly heard when it’s in quiet places. I can’t find a definite cause - recent ops, TMJ, spine issues, etc. It came about suddenly & brutally overnight. I wish I was able to accept it. I can’t at this point. I’m so glad you have had some improvement. I feel guilty when others say theirs is loud. Especially when mine is 24/7 - but can’t hear it when I’m outside, driving, etc. The level I hear now has been the same for 10 weeks. Left ear louder than right. Still in the habit of checking how loud it is though. Clicking jaw and tight SCM muscle in neck/shoulder make me panic about it even more. I hope things improve. I’d settle for sleep. Glad you now get some rest at last.
I know how intense the insomnia and associated anxiety can be. Really hope you’re able to manage it eventually, I was genuinely scared of night time for those 2 months.
if you aren’t using masking for bed time resound GN app (or similar) it allows you to make your own masking audio loop. For me mine is masked best with the sound of crickets/ cicadas chirping. It was for awhile the only time I would feel relaxed at home was when I was masking. Btw I’ve been on the hard part of my T journey for 2 years. If it’s only been a few months try and feel comfort from the fact you are still new to this and I’m sure you can get to the same place others have got to. Acceptance and calm.
I am finding masking such a chore. It makes the sleep anxiety worse. I told my audiologist this too. She still kept saying that it’s possible to habituate. I don’t see how when my anxiety is sky high and I barely sleep. It’s a vicious circle.
I can mask my old mild tone but not this newer louder one, I learned to sleep without masking. The only thing that semi worked was cricket or cicada sounds which were just as if not more annoying than the actual tinnitus so I gave up trying.
I have it in left ear,7th year, I sleep on my left side, the best advise I was given, listen to it without stressing, your brain starts to ignore it, also concentrate on the noise you ignore everyday,traffic, planes trains etc. You just don't notice them, it's taken ages,but if you listen without stress, your brain will ignore it.
Thank You for your post. It was very reassuring to read. I started with Tinnitus about 10 years ago and learned to live with it, but about 2 months ago it increased in volume and is so much worse than before. I have had some really dark days the last few weeks and really struggling to cope. I am too on Sertraline but everyday I worry I am making it worse by taking them. I think sometimes I imagine it is getting worse but maybe my perception is just worsening. I have Hyperacusis, so not sure if this makes it seem louder.
I’ve used sertraline and found it helped a lot. Definitely wouldn’t have said it increased my symptoms, very much the opposite as it was relieving all the emotional and stress/ depression symptoms, that in turn helped me not focus on the noise so if anything the noise appeared less intrusive/ loud . The only reason I’ve stopped taking it is I just want to try and move forward without the help the drugs were giving me if possible as I’m only 35 so hopefully have many long years ahead dealing with this condition. And so far go good. But I wouldn’t hesitate to take them again personally if I started to feel distressed again.
Thank You so much for your reply. It is good to know that other people have used Sertraline and it has helped them. I am going to carry on with them and try and lessen my stress levels.
I am sorry that you have had Tinnitus at such a young age, but you seem to have controlled it really well. I was 55 when mine started.
I’m only 32 and I had it mild (i.e it didn’t bother me) since I was 15-16. It only worsened towards the end of April after my first chemotherapy hospital inpatient infusion.
It's important to share such positive experiences. I could have written this post. All these things have helped me, but Im currently experiencing a relapse due to pressure at work; insomnia (as you say two or three days at a time); I can't switch off despite habituation.
Good luck everyone in your journey - stay positive. In fact, only at positive outlook can get you to accept this. Although we may need medication or other strategies.
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