Living This Nightmare for Two Months Now...

[Pianist_Will]

Hi everyone,

Hope you have all had a good weekend.

I am just sitting a pub while I write this to help mask my tinnitus (don't worry noise is relatively low and I don't think my tinnitus is noise induced). The irony being that I have always been very protective of my ears and super worried about tinnitus. My hearing has always seemed very good really. I don't go to amplified concerts or clubs (just not my thing) and general look after my hearing (whenever a loud ambulance passes by I plug my ears, etc). So the irony now that would now be struggling with tinnitus.

I strongly suspect I got my tinnitus a few months ago from a medicine. I won't say which one yet. There is a lot of misinformation not the inter and I don't really want a flood of replies from people saying the medicine I took is crazily ototoxic. In fact, I have been to see two ENTs who have both confirmed that the medicine is not ototoxoc and is a first line medicine they have both prescribed without issues. But I do think I have had a particularly unusual effect from this medicine and I have other symptoms too.

So basically in late September I noticed that there was a sort of low morse code type notice in my ear. I wasn't that bad really and I thought it would settle down. Wasn't super worried. Then I noticed when I plugged my ears there was actually two sounds. A week later, I woke up with pain in my ears and now the left ear had some strange sounds going on - crickets. I went straight to an ENT. He said my ear looked fine. The medicine I took was safe and highly unlikely the cause. Asked if I had any hearing loss or vertigo (not that seemed immediately apparent). Said I would very likely just go then. I left feeling a little better, but then it got worse. Other sounds started to come. These were more like background hisses, high pitched and would sort of come and go over and over the 'tones' in my left ear. I would lie in bed and the room would feel full of sound. It was literally terrifying! Indeed, I am still terrified.

Went back to another ENT and he said basically the the same thing. Not the medicine, probably anxiety. It would get better. Interestingly, my little brother had a similar thing - tinnitus secondary to panic attacks. He had it for six months. Started an anti-depressant and it all went away. He has silence now. This has sort of world against me a little because now everyone think I am just having the same. Tinnitus secondary to anxiety. But I can just tell this is different and there are other reasons to be suspicious. The ear pain, other other symptoms, the fact I've had anxiety for 36 years and only now I get an episode of tinnitus, etc. I can't 100% rule it but I think its the medicine.

The tinnitus has literally turned my life upside down. I have had such a strong emotional reaction to it. I would not describe my tinnitus as mild, but equally it is not crazily severe either. Nevertheless, it is never far from my mind and I've found life so hard recently. I have been living listening to masking nature sounds constantly it seems. I am lucky these provide some relief but I hate the fact that I can't have silence anymore. Its devastating. I hate always having to live in noise.

I do try to listen to the tinnitus and not mask but after several minutes, it just seems to get out of control and it scares the heck out of me and I have to do something to mask it or move on. I feel really insecure that I can't just live my life and do what I want without thinking about the tinnitus effect. I mean, will I be going somewhere quiet? A friends house? Will I be ok? I dread coming home and knowing I will have to listen to the masking track. I am already sick of the track! But I have no choice really.

So life is pretty awful at the minute with tinnitus. I want to believe that it will settle down and I might get some volume and noise reductions to managable levels. But it does scare me how many of the success stories take about habituation and the fact their tinnitus never actually improved. I know habituation is still something very valid to work towards. But given I am still so new to all this, I'll be honest it doesn't sound like much of a solution. I also have no idea how I will habituation to multiple tones, different ears, and variable volumes with these strange 'whooping' noises coming over me.

My Mum has tinnitus but I am not sure she really understands. She has never needed to mask her tinnitus and never seemed to have lost much sleep. In contrast, my whole life has been devastated by this, sleep is terrible and I have to mask everywhere. I really hope my tinnitus reduced to a more managable level and perhaps I'll be able to ignore it more then.

I have an NHS appointment (live in the UK) with Audiology on 18th December. Will probably see another ENT and do a hearing test. I was disappointed to see no TRT on the NHS. I really think my case is sufficiently bad that I might need the intensity of TRT to get over it. I just can't see how a few sessions of CBT with no sound therapy will really get me over this to be honest. Its all so scary.

I'm still early-ish days - about two months since it all started. However, I noticed no improvements and if anything its gotten worse. Its hard to see how with all these different types of tinnitus that it will just go away. I feel I am very much in the denial stage and can't see hope in habituation but also can't see this just going away. Its a very unique form of hell really.

Please only nice replies. I don't want people saying I'm doomed. My sensitive emotional side can't deal with it at the moment. Hope you are all doing ok. Thanks for reading

 

[billie48]

A warm welcome to the forum. There is no need to worry too much about the future. Your tinnitus is still very new and with many new T the ears tend to be quite unstable and the T sound can morph into many symptoms and possible jumping tones, multi-tones, switching ears, ear pain, cracking or morse code like beep, spiking easily by the slightest external stimulation/irritation etc. There are many causes of tinnitus. Drug ototoxicity and acoustic trauma are the common ones. Prolong stress and anxiety are also quite often cited as the cause. One cause that may produce morse code beeping and possible ear pain is TTTS.

Here is an informative post by a member about TTTS with link to a site to explain how these symptoms relate to each other. Check it out to see if you have similar symptoms. Take good care. God bless.

https://www.tinnitustalk.com/thread...t-over-sudden-hearing-loss.19273/#post-223119

 

[Contrast]

Do you still have ear pain?
have you had loudness sensitivity or spasms with the muscles in your ear?

or balance issues?
any known hearing loss, trouble hearing in excessive background noise?

 

[Striveon]

I am 3 months in, I know how you feel :/ but let's take things day by day. I know how hard it is to have to deal with tinnitus, but try to stay active even if you have no energy. I hope you start feeling better as days go by, give it some time. Try to drink some teas, cbd oil, exercise, etc to get some sleep. If you need someone to talk to, you can always pm me, i hope you feel better, try to distract your mind with what you used to love. Try to bring little by little the old you. I still have a long way to go but baby steps are still progress

 

[Lane]

I have been to see two ENTs who have both confirmed that the medicine is not ototoxoc. ... I can't 100% rule it but I think its the medicine.

Hi @Pianist_Will,

I'm sorry to hear how difficult things are for you at the moment. Just to mention, I strongly suspect you're right about the medicine causing your tinnitus, and that the two ENTs are wrong. They generally don't seem to know very much about tinnitus and its various causes.

I'm about nine months into tinnitus/hyperacusis at this time, and have discovered mHBOT to be the best thing that has helped me cope with it. I think we all need to follow our gut when it comes to experimenting with different things that might help us. It's often very different for each of us. -- All the Best...

 

[Pianist_Will]

Thanks for the reply Lane. Noticed any improvements with the oxygen therapy? Has your tinnitus got any better over the past 9 months?

 

[Pianist_Will]

Thanks Striveon, your encouragement means a lot Let's hope we can both get better together!

 

[Pianist_Will]

Hi Contrast,

No balance issues luckily. Still some ear pain which is upsetting. I think worst part is I don't know how much damage has been done to the ear since we can't see it, just the pain. But pain is not a good symptom.

I don't think it's hyperacusis as I seem to be alright around most sounds.

Not had audio tests yet but hoping they will be fine. I've done a few on line ones and they said no I was ok. Also run a few high frequency tests and I think I can hear up to 15khz which I think is about normal for my age (36). But I suppose the hearing tests could show loss. My day to Day hear when out and about seems the same.

I went out with some friends on Friday night and I was very aware of how I hear them in background noise since I've heard about hidden hearing loss. I was nervous about it but I think I did alright really. We all seemed to be able to talk in bars with lots of chatter in the background. I don't think it was too different or hard.

I'll know a bit more when I haven the audiology appointment at the hospital

 

[Pianist_Will]

Thanks for the welcome Billie48! And it's encouraging to know that the early days of tinnitus can be unstable because that isn't how mine feels! I would feel a bit better if it was at least stable to give me the chance to get used to it. Of course, still hoping for improvement generally. I think it's then nerves which have been affected and I know they take a long time to heal (if at all). I'm not sure if it's the hairs with me which are affected? Who knows!

I thought about TTTS initially for the morse code and it gave me some hope! I thought that might settle down. But when I plug my ears it's more of a continuous noise so perhaps it just feels like morse code when my ears are open.

Lets hope I see some improvement soon!

 

[VictorDedalus]

@Pianist_Will Your avatar of Kierkegaard got me thinking. I'm seated on my living room sofa, and just to my left on the wall hangs a framed print of the same portrait (sans shades). Perhaps it's presumptuous of me to draw inferences about your personality and world outlook from so modest a clue, but I can't help wonder if in some cases certain types of people are prone to anxiety-induced tinnitus. I'm not suggesting that, after the onset of tinnitus, ridding oneself of the affliction is merely a matter of alleviating the anxiety. But for me, who spent 4 years in graduate school studying philosophy and who possesses a certain existential bent, I suspect that my anxiety and Weltschmerz contributed significantly to the spontaneous onset of tinnitus 1.5 years ago. I think that my despair over a divorce and sudden diagnosis with a brain tumor overwhelmed me emotionally and psychologically and triggered a permanent state of tinnitus that has never once abated. I suspect intense anxiety can indeed induce tinnitus, but of course have no clinical data to support such a claim. In my case, I think the depth and magnitude of my sorrow broke my brain.

While the intensity of my tinnitus has not wavered, I have adapted. It still plagues me incessantly, but I have learned to live a productive, if tormented, life. Wishing you the best.

 

[Tommi_boi]

Howdy, just my two cents (or pence, coming from the UK!).

I agree with what all the others say, early days and try not to listen out for it.

I remember when I had this (used to play in bands) I used to obsess about it.

I first injured my hearing and then I had a static TV sound followed by the hissing version of Tinnitus and I struggled with this.

This forum really helps from a mental point of view because you very quickly realise that this condition is extremely common and you are not alone. Naturally , this is extremely comforting !

In time you will notice that this will most likely subside if not completely dissapear if you are one of the lucky ones.

I was lucky in the sense that my T is mostly gone, but I have also been left with a little sound sensitivity (most cars braking) but nothing that cannot be handled

Morale of the story is :

1) give it time
2) don't obsess
3) see how you go

 

[Pianist_Will]

Hi VictorDedalus,

I do agree that anxiety or an existentialist view of life probably does give a certain predisposition to tinnitus. But I do think there is hope. My little bro had bad tinnitus which seemed to start after panic attacks. His completely resolved when he was able to get control of the panic attacks. So I think this is a positive story. I am usually kind of sceptical of these types of stories but since its my own family member and I don't think he would exaggerate it to me - I do believe its true. Lets hope we all get something similar!

 

[Pianist_Will]

Hi Tommi_boi, thanks for your message and encouragement! Great you've had improvement in your tinnitus. Really hoping I get lots of improvement too over the coming months. How long did it take for you to show some improvements in your tinnitus?

 

[Lane]

Has your tinnitus got any better over the past 9 months?

Hey @Pianist_Will -- With daily (home) mHBOT use, I'm now currently sleeping better than I have in 20-30 years, and am able to completely relax. My tinnitus volume is decreased by about 10-20%, but its impact on my brain and nervous system is reduced by probably 75% or more. In just the past week, I've been able to discontinue using white noise at night as well. -- I'm also taking curcumin and CBD oil, which I think are helping as well, but I believe the majority of my improvements are from the mHBOT. -- Best!

 

[Pianist_Will]

Great you're getting some relief Lane! Pleased to hear it

 

[PortalNaut]

@Pianist_Will I just wanted to welcome you to this undesired fellowship and wish you the best.

It's interesting your brother had anxiety and T and what you have seen in his turnaround. Perhaps take something from his experience to guide you.

Since Kierkegaard has come as a possible influence, I found a quote of his to share:

"Face the facts of being what you are, for that is what changes what you are."​

The above statement is very hard to do at times, particularly with T, but I believe it can set us on the path to health and freedom and hopefully healing.

Good luck!

 

[Tommi_boi]

Hi Tommi_boi, thanks for your message and encouragement! Great you've had improvement in your tinnitus. Really hoping I get lots of improvement too over the coming months. How long did it take for you to show some improvements in your tinnitus?

So for me, I had tinnitus for a few months. Then it got better.

All in all, it's amazing what the human body can come back from. I'd say I'm 95% better from this.

How you getting along ?

 

[Pianist_Will]

Hi Tommi,

Thanks for the message and checking up on me So I'm probably about 2.5 months into my tinnitus journey. Thought I might have been making a bit of improvement recently but to be honest today it just feels as bad as a few weeks ago.

Still really hoping I have the potential for some natural improvement over the coming months and this is still early days. I'll be honest, it's been awful. For most of the last month I've have had to have sound literally everywhere since I can't deal with the tinntus. It's so draining to live your life like that! And there's is something about it being incurable and no treatments tk directly address then sound which just makes me feel awful (I know there are habituation treatments but immune still struggling to come to terms with them really).

So still very much in the denial and horrible early phase! Your story gives me hope though so thank you so much for posting on my threatening. Mine is medicine induced so not sure if that mean my chances of recover are lessened. Let's hope not.

I think most people get some degree of reduction in their tinnitus sound so really just hoping that I am one of them!

 

[Bill Bauer]

people saying the medicine I took is crazily ototoxic. In fact, I have been to see two ENTs who have both confirmed that the medicine is not ototoxoc and is a first line medicine they have both prescribed without issues.

Is it listed on one of the lists below?
http://hlaa-sbc.org/wp-content/uploads/2013/11/Ototoxic_Brochure.pdf

http://www.ata.org/sites/default/files/Drugs Associated with Tinnitus 2013_Updated2017.pdf

 

[Bill Bauer]

I want to believe that it will settle down and I might get some volume and noise reductions to managable levels.

Check out the studies cited in the thread below
https://www.tinnitustalk.com/threads/spontaneous-recovery-stats-many-recover-3-studies.21441/
There is still hope.

Also, check out
https://www.tinnitustalk.com/thread...eone-else-who-has-tinnitus.26850/#post-307822

 

[Lane]

Mine is medicine induced so not sure if that mean my chances of recover are lessened.

Hi @Pianist_Will,

I went to an acupuncturist early on to try to get some relief, and he told me he has the best luck with tinnitus when it's been caused by ototoxic medicines. As I recall, he works on the liver and kidney meridians to help the body excrete these medicines, some of which can get stuck in the body for long periods of time.

Unfortunately, I didn't get much relief. I've now come to believe that even though my tinnitus started with an ototoxic drug, the reason for it was that it created huge muscle spasms all over my body, including some in my neck, head, ear, and TMJ areas. So I'm working it from that angle now.

Do keep in mind that you're in the very early innings of this. I had somewhat of a milestone at about 5 1/2 months where my body and nervous system was able to let go of most of the fear and anxiety surrounding my tinnitus. And after I got a home mHBOT, I'm now able to relax deeply on a daily basis. Now at about 9 months in, I feel the tinnitus has improved about 10% or so, but my ability to not have it affect me so much has improved by about 50-75%.

Again, these are still the early days for you (and me). I just read a POST by a man who tried prednisone after about two years tinnitus onset, and it made a really big difference for him. -- All the Best!

 

[Lane]

I went to an acupuncturist early on to try to get some relief, and he told me he has the best luck with tinnitus when it's been caused by ototoxic medicines.

For anybody who is open to acupuncture and TCM for tinnitus, the following story should provide hope. Perhaps especially for those whose tinnitus is of unknown origin. -- The man in the story got major relief after 14 years of non-stop tinnitus. -- @Striveon

TINNITUS: HOW AN ALTERNATIVE REMEDY BECAME THE ONLY WEAPON AGAINST THE RINGING
It was only in desperation that Peter Popham opted to try an alternative remedy, and to his astonishment, it's the only thing that has ever worked​

 

[Striveon]

For anybody who is open to acupuncture and TCM for tinnitus, the following story should provide hope. Perhaps especially for those whose tinnitus is of unknown origin. -- The man in the story got major relief after 14 years of non-stop tinnitus. -- @Striveon

TINNITUS: HOW AN ALTERNATIVE REMEDY BECAME THE ONLY WEAPON AGAINST THE RINGING
It was only in desperation that Peter Popham opted to try an alternative remedy, and to his astonishment, it's the only thing that has ever worked​

Wow! Thank you so much for sharing. I will look for a good acupuncturist and give it a try

 

[Tommi_boi]

mine is medicine induced so not sure if that mean my chances of recover are lessened. Let's hope not.

I think most people get some degree of reduction in their tinnitus sound so really just hoping that I am one of them!

Hi Will,

Medicine induced is one type of Tinnitus I havent yet had, but apparently you need a lot of medicine for it to actually do permanent damage to your system.

Even things like paracetamol and ibuprofen is supposed to "irritate" the auditory system.

It's the ones that end in "mycin" which are the most damaging to your system apparently. My doctor tells me, you need a lot of that before it's going to have an impact.

I've personally had all sorts of ear issues including sound sensitivity (used to play in a band which damaged my hesring), tinnitus a few times and at one point I even heard my own heart beating (pulsatile tinnitus) , the last one was the worst. Luckily it went away.

I actually feel positive for you, but I'm afraid it will be a waiting game.

Tinnitus is a different beast for all of us but usually all get better I'm time!

 

[Lane]

apparently you need a lot of medicine for it to actually do permanent damage to your system.

It depends on the drug and the individual. I took only one dose of the ototoxic drug that gave me tinnitus. I read an account online of a man who took only one dose of Benedryl, and four years later was still suffering from t.

 

[Pianist_Will]

Thanks @PortalNaut! I really like that quote! I only wish I was a bit better at putting it into action! As I said earlier in this blog, still very much in the denial stage. Hoping a time goes by I'll get better at facing all this really. Lets see.

 

[Pianist_Will]

Thanks for the advice @Lane . If I'm not making any improvement as time goes by, I'll consider some more alternative approaches. Although I'm pretty sure my tinnitus is medicine related so not sure how relevant it would be really

 

[Pianist_Will]

Thanks @Tommi_boi . You've been a super big help to me in keeping me optimistic!

So I might as well say what the drug or drugs were - Ciprofloxacin (antibiotic) and Finasteride (hair loss drug, blocks DHT which is a form of testosterone). I'm almost certain it was the Cipro which has done this because I am suffering from other neurological side effects - peripheral neuropathy type symptoms. I had never heard of fluoroquinolone toxicity before I took the drug (or post finasteride syndrome). I suspect I have suffering from both. I hope time will be a healer for me. I think I might get more improvements on the neuropathy type pains than the tinnitus. The peripheral nerves seems to be able to heal so long as the damage isn't too bad and the original neurotoxic medicine is taken away (of course, I have stopped both drugs). With regard to the nerves cells in the ears, my understand is they are more like the central nervous system and one they die - they die. Very little capacity to repair. Nevertheless, I still have some hope. It does sound like people do improve and I have to stay hopeful and think that i will.

Its hard to know what the damage is with me. I suspect I won't have much hearing loss since my hearing seems pretty good really. I wonder if it is the nerves of the auditor part of the ear which are effected? I still haven't had an audiogram yet so its all speculation. Got an ENT and audiologist appointment in a few weeks.

 

[Pianist_Will]

Thanks @Bill Bauer ! Those are great post and really encouraging! Just what I need! I think everyone needs hope in these early days. It would be so good to hear silence again! Thanks again for taking the time to post. Have you noticed any improvement in your tinnitus with time?

 

[Lane]

Ciprofloxacin (antibiotic)

You may want to check out the following discussion:

Fluoroquinolones are too dangerous for common infections (article)