Suicidal Levels of Anxiety from Cisplatin-Induced Tinnitus Worsening, Now Back to Living My Life

[Leon K Fox]

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 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 (Zoloft to Americans) 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 50 mg to 100 mg 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.

To anyone who supported me when I posted in the Suicidal thread, thank you. We're total strangers but I really appreciate it, looking back

Best of luck to everyone on here, and may we someday have an effective treatment for this god awful disease.

 

[Cmspgran]

Congratulations, Leon. Sincerely pleased for you and I hope the severe tinnitus starts to take a back seat as well.

 

[ErikaS]

Hey @Leon K Fox, I cannot tell you how happy I am for you to have read this. I don't really partake in the Suicidal thread as I try to keep my mind elsewhere, but I read your posts and although I didn't comment, your situation really stuck with me. I am a faithful person, so I specifically prayed for you for a few nights after reading your situation. Completely fine if you are not a faithful person and I don't mean to offend if you are not, just wanted to say I am just so happy for you because you were SO deserving of this relief. As we all are, but you know what I mean. Take care, and kick that cancer's ass!

** I think this post and others speak for itself with regards to the positive effects of medication. Each person is so individual, but many have been "saved" when they had no other choice but to try something. My heart completely goes out to those who worsened from meds, it's so cruel and unfair and it angers me. But this and others stories show meds have the potential to help someone survive these awful conditions until someone comes up with something to directly treat us all.

 

[4Grace]

I am having a hard time with everything I need to give up. I tried meds but had to give up for fear of the meds making it worse. It is great news that the meds worked for you. I think about going back on them everyday but can't seem to do it. I am so happy to hear they are working for you. Awesome courage. So happy for you.

 

[Leon K Fox]

Hey @Leon K Fox, I cannot tell you how happy I am for you to have read this. I don't really partake in the Suicidal thread as I try to keep my mind elsewhere, but I read your posts and although I didn't comment, your situation really stuck with me. I am a faithful person, so I specifically prayed for you for a few nights after reading your situation. Completely fine if you are not a faithful person and I don't mean to offend if you are not, just wanted to say I am just so happy for you because you were SO deserving of this relief. As we all are, but you know what I mean. Take care, and kick that cancer's ass!

** I think this post and others speak for itself with regards to the positive effects of medication. Each person is so individual, but many have been "saved" when they had no other choice but to try something. My heart completely goes out to those who worsened from meds, it's so cruel and unfair and it angers me. But this and others stories show meds have the potential to help someone survive these awful conditions until someone comes up with something to directly treat us all.

I am not a person of faith, no. Nonetheless I appreciate the sentiment, thank you. And yes, I know people can worsen from taking medication but it basically saved my life.

I am having a hard time with everything I need to give up. I tried meds but had to give up for fear of the meds making it worse. It is great news that the meds worked for you. I think about going back on them everyday but can't seem to do it. I am so happy to hear they are working for you. Awesome courage. So happy for you.

I hope you're able to overcome your fear of taking them, and that it doesn't make it worse. I totally understand the apprehension but I was desperate and on the verge of doing something drastic. Thankfully it paid off for me, but I added the disclaimer for a reason.

 

[Jupiterman]

@Leon K Fox, well done on your major improvement with anxiety.

By the way, how you describe it, it's as if the Zoloft accelerated your habituation process by about 25x.

Is your intention to stay on Zoloft indefinitely? Are you concerned you would become more aware of the noise again when you come off the Zoloft, that you could "unhabituate"?

 

[Leon K Fox]

@Leon K Fox, well done on your major improvement with anxiety.

By the way, how you describe it, it's as if the Zoloft accelerated your habituation process by about 25x.

Is your intention to stay on Zoloft indefinitely? Are you concerned you would become more aware of the noise again when you come off the Zoloft, that you could "unhabituate"?

I honestly don't know, the GP is going to review it sometime in autumn. If I don't develop any side effects and I still feel good (i.e. able to engage and not suicidal), I may just stay on it for the foreseeable future.

 

[4Grace]

Do you still have the same noise, just not bothered by it so much? My tinnitus is getting louder by the day. I am worried to death.

 

[Leon K Fox]

Do you still have the same noise, just not bothered by it so much? My tinnitus is getting louder by the day. I am worried to death.

I would say that accurately describes my current situation, yes. I'm sorry to hear you're struggling though

 

[Leon K Fox]

I wasn't quite sure where to post this update of sorts, even if it isn't entirely a positive one, it isn't to do with my tinnitus and this seemed like the best place for it.

I am still "habituated" (whatever that means) to my new tinnitus baseline so that's all good. Recently I had a PET scan to make sure the chemotherapy worked as intended, and while it shrunk my germ cell tumour (from testicular cancer) down significantly from something like 5 inches down to half an inch, the results were in what the doctor called a "grey area" where they can't be 100% sure if any cancer cells remained.

I was very briefly scared this meant more chemo and I am deathly afraid of Cisplatin at this point for fairly obvious reasons. Mercifully I need to have radiotherapy though, no more chemo.

Relief aside though, the news was still pretty disappointing as I was hoping to put this whole episode behind me, though the absolute worst of it (i.e. my suicidal thoughts) has been behind me for a while now.

It could have been a lot worse, I know. I was also assured the radiotherapy won't affect my tinnitus, since it isn't being administered to my head anyway.

 

[Tweaker]

I wasn't quite sure where to post this update of sorts, even if it isn't entirely a positive one, it isn't to do with my tinnitus and this seemed like the best place for it.

I am still "habituated" (whatever that means) to my new tinnitus baseline so that's all good. Recently I had a PET scan to make sure the chemotherapy worked as intended, and while it shrunk my germ cell tumour (from testicular cancer) down significantly from something like 5 inches down to half an inch, the results were in what the doctor called a "grey area" where they can't be 100% sure if any cancer cells remained.

I was very briefly scared this meant more chemo and I am deathly afraid of Cisplatin at this point for fairly obvious reasons. Mercifully I need to have radiotherapy though, no more chemo.

Relief aside though, the news was still pretty disappointing as I was hoping to put this whole episode behind me, though the absolute worst of it (i.e. my suicidal thoughts) has been behind me for a while now.

It could have been a lot worse, I know. I was also assured the radiotherapy won't affect my tinnitus, since it isn't being administered to my head anyway.

How are you doing now?

 

[Leon K Fox]

How are you doing now?

No real changes since my last post. The cancer diagnosis and subsequent treatment did derail plans my family had to go on a cruise for the first time with us all there, but considering where I was back in May it's hardly worth complaining about when looking at the bigger picture, given I was full blown suicidal.

Just hoping the radiotherapy does nip it in the bud and I can well and truly put this behind me (while still being careful with my ears obviously). It starts on the 18th and lasts for 3 and a half weeks.