Ciprofloxacin Induced Tinnitus 2 Years On

[JonSta]

Hello, here is my story, it's actually a positive story I want to share with those who are struggling with tinnitus.

I live in the UK and experienced sudden onset bilateral loud tinnitus midway through a course of Ciprofloxacin to treat a UTI in January 2017.

I'm in my early forties, healthy, happily married with young family and had never had any hearing issues before. On day 4 of the treatment I'd gone home early from work feeling a bit under the weather and went to bed early that night. I woke suddenly around 1am with the loudest most frighteningly intense hissing ringing in both my ears I'd ever experienced. I leaped out of bed shouting to my wife asking what was happening in a complete panic.

She calmed me down and reassured me id be fine but to try and get some rest. I managed to drop off again but 20 minutes later the intense ringing woke me again and this was the pattern that repeated until the morning.

The ringing completely filling my head continued the following day so i went straight to my doctor who told me to stop the cipro course and reassured me my symptoms would subside as the drug left my body. Unfortunately they didn't.

In those first few weeks the ringing would be at its most intense, ramping in volume, as I was falling asleep and even if I did fall asleep I'd wake with deafening ringing 20 minutes later. I also had other neurological side effects from the cipro reaction - tremors and a feeling my whole body was vibrating. It was truly awful. After two weeks i was totally exhausted and broken. I couldn't go to work, I couldn't think or function. I was losing my sanity and genuinely wanted to be submitted to a psychiatric institution. I was at the lowest ebb of my life and was desperate and so was my wife trying to care for 2 kids under 2 with a hopeless shell of a partner.

I saw numerous doctors an ENT specialist, an audiologist, I had an MRI scan to rule out a tumour, the consultant confirmed I'd experienced moderate hearing loss in my left ear with mild in the right and high frequency loss across both ears and as well general hyperacusis. He reported the Cipro reaction via the uk yellow card system, he said he could help with the hearing loss with a hearing aid but essentially there was nothing he could do for the tinnitus other than the masking effect the hearing aid may provide.

I found my tinnitus was so variable day to day with layers of humming, high frequency ringing/hissing, buzzing and rumbling that was not constant in any one ear so didn't think a hearing aid would really help.

Those first few months were dreadful, I was back at work but not myself, I was constantly exhausted, and so upset I was not able to be the supportive husband and father I needed to be. Low doses of Valium were the only way I could get sleep. I was struggling to accept this had happened to me, I was angry and realised many many people have had terrible reactions to cipro and other fluoroquinolene antibiotics. Tinnitus was consuming me and robbing me of any joy and the ability to be strong and there for those who needed me so much and I loved more than anything. It felt so unfair but I was adamant I wasn't going to let this control me and ruin my life.

I gradually weaned myself off the Valium at night finding I could sleep, albeit not that well, With ocean and storm sounds playing. I focused on the things I loved - my family, planning trips and days out, work, doing the activities I enjoy like running and cycling. I tried to stay as distracted from the tinnitus as I could.

It was slow progress but gradually my sleep improved, I began to understand the pattern of my tinnitus more and became more used to it and less bothered by it. It has 'evolved' somewhat with less intense surges during the night but perhaps a higher volume during the day.

1 year later and I realised I felt a lot less preoccupied by my tinnitus than those early months, sleep was back to normal and my mood had much improved overall.

Now it's over 2 years later and I'd say life is almost like it was before this happened to me. I'm still aware of my tinnitus but now go for hours without thinking about it and when I do it's a bit irritating but doesn't bother me. Importantly, It doesn't stop me doing anything. I sleep well now albeit in the spare room more often than I did (my wife is less keen on the crashing wave sounds!)

So if you are in a bad place with tinnitus right now please have hope.

Try to be patient. Habituation is a slow road but focus on your loves, on staying distracted from it and on living your life right now.

Try to accept what has happened. You are unfortunate and it isn't fair but that sadly is life - there are others who have been dealt a much crueller hand than you.

You'll have good and bad days but try not to wallow and catastrophise, put your thoughts instead into trying to stay positive and in appreciating what you do have and also those in your life who care about you.

Put your energy into things that help you manage and stay distracted from your tinnitus. The more you do this then over time the more your tinnitus will ebb away into the background.

Belief will get you through the dark times, I promise.
X

 

[Lane]

many many people have had terrible reactions to cipro and other fluoroquinolene antibiotics.

Hey @JonSta -- Thanks for sharing your story. Any story highlighting the extreme dangers of fluoroquinolone antibiotics like Cipro, Levaquin and others need to be exposed whenever possible. This is a particularly compelling (and tragic) story -- Cipro Is Poison.

You're probably aware that these antibiotics target bacterial DNA instead of the cell wall like most other antiobiotics. Is it any wonder these things have such devastating effects? -- Cipro is also used in eardrops that are often used to treat childhood ear infections. You may find this article interesting as well. -- Ciprodex -- Poison Marketed to Children.

Congratulations on emerging from your nightmare experience with such a positive attitude. And thanks again for sharing your story. -- Best...

 

[JonSta]

Hi, thanks so much for your message. I never knew the risks and took cipro in good faith. Too late for me but there was a European public hearing in November 2018 regarding concerns with the rare but life changing reactions to fluoroquinolones and the UK government has just restricted their usage and issued health care and patient warnings - finally.

https://www.gov.uk/drug-safety-upda...lly-long-lasting-or-irreversible-side-effects

 

[linearb]

I think that fluroquinolones have their place, in the treatment of life threatening conditions which are resistant to other drugs, but the idea that they're given out routinely for stuff like UTIs is just insane.

I literally had to fire a doctor because she wanted me to take cipro for nonspecific (neuromuscular) pelvic pain. I refused, so she gave me levaquin instead... and I quickly found a new doctor.

 

[tac]

My regular doc wasn't available after a colonoscopy a few years back and an on-call doc whom I had never heard of or met prescribed cipro over the phone after I complained of some pelvic discomfort. Never filled it, crazy.

 

[Lane]

there was a European public hearing in November 2018 regarding concerns with the rare but life changing reactions to fluoroquinolones and the UK government has just restricted their usage and issued health care and patient warnings - finally.

@JonSta -- Regarding the word "rare", I guess it that would depend on the definition of rare. From my understanding, severe reactions are not rare at all. Many thousands of sufferers are on fluoroquinolone support forums. That means of course that many thousands more have suffererd but aren't on the forums. And this only includes the group that KNOW they've been harmed, Much of the damage doesn't show for years later, and many people don't know any number of health maladies they're experiencing are a result of a fluorquinolone antiobiotic they took years earlier.

It appears to me almost everyone who takes these drugs damages themselves to some degree. I think it's similar to the people on this forum who expose their ears to loud noises--sometimes for years with no apparent damage--until one day they wake up with tinnitus. The damage didn't happen overnight, but over a long period of time. -- I would urge anybody with tinnitus or injured ears to never, ever consider taking one of these drugs. There are almost always very suitable alternatives that are MUCH safer.

 

[JonSta]

Rare is classified as 1 in 100, very rare 1 in a thousand (and underreporting is also assumed) but when there are several million prescriptions a year for this group of drugs you can see why so many people have been affected

 

[JonSta]

The testimonies from the public and medical professionals in the European hearing transcript (all available via link) and the devastated lives make for sad reading. The facts are real and at least action has been taken but in my view the drugs should be banned.

 

[GregCA]

You're probably aware that these antibiotics target bacterial DNA instead of the cell wall like most other antiobiotics. Is it any wonder these things have such devastating effects? -- Cipro is also used in eardrops that are often used to treat childhood ear infections. You may find this article interesting as well. -- Ciprodex -- Poison Marketed to Children.

Doesn't seem to be supported by scientific literature.
See Ciprofloxacin Dangers

 

[Tamara]

They can say the opposite because they do not know. There are several medications that make tinnitus worse, and even doctors who prescribe them do not know it and, worst of all, do not even care to know that.

 

[JonSta]

The good news is that the European medical board and now wider medical profession have set these new restrictions on FQs and new guidelines and fact sheets with warnings for both medical practitioners and patients based on medically proven concerns and evidence (adding to black box warnings already in place in the US). I'd like my story to give hope to T sufferers rather than fuel another cipro debate. The FQ dangers facts and evidence are out in the open now and being recognised by the medical bodies so no further debate is really needed.

 

[Dennis Price]

Wow just reading all these comments has made such a difference for me . in December 2017 , halfway through treatment for bladder cancer , unfortunately had a problem due to treatment and succumbed to prostatis. Treatment for this was Ciprofloxacin!
Shortly after had sudden onset tinnitus ( still have it today )
Saw GP who's attitude was you've got tinnitus get used to it . Contacted my cancer nurse and specialist to ask about connections between cancer treatment and tinnitus , their comments were there were no recorded cases of tinnitus between bcg treatment and tinnitus , but after reading these posts it seems that my thoughts all along that ciprofloxacin was the cause has been borne out !
The cancer department would not answer my questions about the use Ciprofloxacin. Now I know why
Because of their reply I've spent a fortune in seeking out the cause of the tinnitus .
Had numerous scans , physio and been to chiropractor who reckoned I might have TMJ issue that's causing tinnitus . Saw a dental surgeon said I needed implants at £14000.00 yes £14,000 that might help in relieving tinnitus .
Have found that tinnitus is a money making machine , with no answer to a cure or relief ! Time is the only healer , as stated before by others Habituation and sheer determination to enjoy life and not forgo any of your pleasures !
it's taken me a few years to get here , but coming across this post last week , believe it or not lifted a great burden off of my shoulders , finally finding all along that Ciprofloxacin was the culprit Thank You