I’m sure this is a story you’ve all heard a million times but I’m deep in the thralls of it and needed to reach out somewhere, but I’m too scared to go down the rabbit hole that is Tinnitus Talk, just lurking on that forum has had a disastrous effect on my mental health and yet I can’t stop doing it, then again I’m obsessing over the tinnitus in general…like I said, doubt any of this is new to you.
For years I’ve had what one what might describe as the “liveable” tinnitus, the kind that is easily masked by background noise or a fan, resided in my head and is still as masksble as ever, but I was recently diagnosed with testicular cancer and am in my second cycle of chemotherapy, it’s resulted in a new high pitched ring in my left ear and I don’t know if my right ear is going to follow suit.
The tinnitus has given me a level of anxiety the likes of which I never thought imaginable and I don’t even know what my base line will be come the end of the treatment. I can’t sleep without Zopiclone and my family can only fixate on how well the physical side of my treatment is going but mentally I can’t stop thinking about my long term quality of life.
In contact with the hospital’s psychologists to try and get therapy to manage the anxiety, even if it doesn’t lower the tinnitus volume I know I need to at least get that under control.
Emotional support much needed.
Written by
Masterfox66
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Hi Masterfox66, sounds like you are doing all the right things to get this under control. I'm sorry to hear that you are going through a rough time. This forum is a magnitude better place than tinnitus talk and its positive that you have recognised the anxiety that reading peoples woes can have. There are a good amount of people on this forum that, like me, have had or are going through tinnitus and can offer support and maybe some guidance.
In my opinion you are right to address the anxiety part. As you most likely know, the tinnitus puts you in a state of fight or flight for a good long while and this causes a huge amount of stress and anxiety that is hard to get a grip on but know, once you have got this under control, your world will be become a much more manageable place. tinnitus raises stress, which raises tinnitus, which raises stress..... by doing all you can to lower your anxiety will likely be a key part of your recovery.
Its very normal to look forward with worry that your quality of life will be affected. This may be out of your control, but then it may not. I personally found that a mix of CBT, meditation and sound therapy via hearing aids got me from a very dark place to a 95% normal life again. This took roughly 2 years but i got there, seeing progress along the way kept me going.
Keep a strong mind, work on the acceptance of Tinnitus, calm the body and seek out people like here and your family and friends that can help you along the way.
I can’t realistically start any proper treatment until my chemotherapy is done. I need to have another hearing test post chemotherapy and that’ll determine if I need hearing aids or not, I’m happy to try sound therapy if it’s available to me, I was told my oncology hospital has a tinnitus specialist under its umbrella?
Also, where and how did you access CBT? Not sure how much virtual/web cam therapy will help me, even if it isn’t CBT the therapy from the psychologist is going to be face to face. Expecting a phone call from them tomorrow.
Hi Masterfox, where I live access to CBT can be arranged by the "psychological wellbeing service" when an assessment has been carried out by them following a referral from a GP. There are private counsellors aplenty, but my suggestion is to ask a GP for a recommendation before going down the private route if you don't have private medical insurance, such as Bupa, through which you could seek a consultation right away.
Another thing; take T one day at a time. Habituation happens over years, not days or weeks. At this stage, try to notice when you haven't noticed your T for a few seconds while you're engaged in activity and build on that "not noticing". It's training the brain which is sometimes extraordinarily resistant to change.
Your mind will adapt given time, but you're absolutely right about the need to remain calm and relaxed to help achieve this. There's a difference between 'accepting' T and 'resigning' yourself to it. One is growth; the other is giving up. Normally, I would say that meditation might help with acceptance/habituation, especially audio guided CDs, but it might be a tad early for you to try and you do have other, serious, issues that you're having to deal with as well.
Nonetheless, if you're feeling so inclined, here's a web reference for you to explore when (if) you feel ready to do so.
This link might lead you to other offerings that might prove of interest/relevant to you.
You're right; many of us went up the walls and across the ceiling when our T began. You are at the top of a "change" curve and also treading a well worn path. Take it steady and slow. Adaptation/habituation is key - you will get there but it takes time, persistence and willpower.
I learned about the change curve many years ago at work. It is relevant to many areas of life, particularly crisis points. Here's another reference to read in case you've not come across the change curve before:
You will, I'm sure, be able to place your current emotional state somewhere along that curve. The important thing to note is that the curve is not static; you will move along the curve and things do get better the further you go.
Meanwhile, be very kind to yourself. I hope you find a little peace very soon.
The psychologicist hasn’t called just yet so getting a little bit distressed about that, was really wanting to get the ball rolling on proper face to face therapy for my anxiety.
I too had cancer and during treatment the tinnitus did pop its head over the parapet and sneered at me. But until you mentioned it I had totally forgotten about that aspect of chemo. Everything else from hair loss to dark days was far worse - for me,
But here I am eight years since chemo and radiotherapy and the tinnitus has gone back to its usual.
Have a look at the post that Gloomster has just made.
How loud was it for you? Mine is really high pitched and I can hear it even in the shower, if I listen out for it. Still stuck listening out for it, few days removed from my second Cisplatin infusion.
Speaking from experience of having seen someone go through chemo rather than personally going through it myself, I know that chemo treatments can result in sleeplessness/insomnia. If the zopiclone is not doing the job of getting you to sleep when you need it, I suggest it's best to have a word with your oncologist to see if there's an alternative drug to zopiclone that works better with chemo medication. The clinic should certainly be aware of the insomnia aspect of chemo and be able to advise you about an appropriate drug alternative that either your GP or oncologist can prescribe. You might have to try different drugs to find the right one for you, i.e. one that works to get you to sleep without further exacerbating the tinnitus.
CBT can help with getting off to sleep, but its effectiveness will I think depend upon to what extent the chemo is stimulating your brain. It might be a case of needing a sedative drug as well as CBT to counteract the side effect of the chemo.
If you have not been able to get hold of your clinic or GP and are in crisis right now, call 111 option 2.
It's a very tough situation for you at the moment, but you can get through it, one moment at a time.
I started taking Sertraline and it initially seemed to help me regulate my anxiety, lessen my hyper ventiliating and general sense of about to have a panic attack so I was optimistic for a few days.
Now I’m getting paranoid that the Zoloft might be making the tinnitus worse. I don’t know if it’s just my anxiety messing with me or not but with me going into hospital tomorrow I can’t really contact the GP for a few days, and if it does increase I won’t know if it is the anti depressant or the Cisplatin doing its usual thing. I hope it isn’t the Zoloft because I’ve been really needing it to control my hyper ventilating.
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