Hello from Poland

[Fish]

Hello, I'm 22 and I live in Poland.

I had mild symptoms of tinnitus as early as somewhere in 2007-2008 but back then the noise was really quiet, and since I had no idea about a condition known as "tinnitus" I thought it's natural, it's sound of blood flowing in my head or something.

It worsened around two months ago to the point I started searching for it on the internet and found out about tinnitus. It's really depressing since I've always been rather cautious about my ears and I generally avoided loud noises.

In my whole life I was literally only 3 times in the club with loud music and that's probably when most damage has happened. Other than that I've been to 2 rock concerts and both times I wore ear plugs to avoid the ringing in my ears the day after!

Sadly, the high pitched noise I tended to hear from time to time started being impossible to ignore two days ago. It doesn't give me a minute of relief and I'm going INSANE!!

I don't know what to do. It's already hard as it is with other illnesses I have (LPR and asthma), and now I'm really depressed with everything piling up on me I already read enough articles about tinnitus here and on other websites to learn it's unlikely to ever go away.

Worse yet, the country I live in is really underdeveloped compared to the west. Doctors here are rather clueless about tinnitus and I need to wait several months for a visit!! Also, should any cure ever be found in, say, 5 years it won't get here any soon and I simply won't be able to afford it overseas.

I had so many dreams and things I wanted to do but I feel like I'm losing it I can't stand it any longer...

 

[Karl]

Fish -
I was reading about an opportunity for a new treatment posted by Symphonic Silensio. See his thread posted under an "Opportunity for New Treatment", under "Support".

Keep pushing, trying new things.
- Karl

 

[Fish]

Thank you for your reply. I doubt I could ask Silensio for help since I'm new here.

The noise woke me up at 3:00 AM, since I couldn't stand it anymore I called an ambulance.

They did some basic ENT checks to rule out ear infection, ophthalmologist looked in my eyes, I had head CT done, everything looks fine so far. They prescribed me Betaserc (Betahistine) and Piracetam 2x a day. If there's no relief I'm supposed to go there again for more thorough ENT and audio tests.

I'm back home, haunted by a screeching noise that seems to have appeared for no reason. I've never been so tired and depressed at the same time.

 

[Markku]

You must be going through an exceptionally bad time with the tinnitus if you had to call an ambulance. I've never before heard of anyone calling 911 because of tinnitus.

You will survive this though. Make a pact with yourself. It's not worth it giving up yet, promise to yourself that you will stay around for 15 years. You will only be 37 then. You are so young now. It would really surprise me if your tinnitus didn't become better within a few months/years. And tinnitus will not dictate how you live your life. You can accomplish all the things you wanted before. You really can. There are so many examples of just that on many tinnitus forums.

I mean, it's not rare for tinnitus to get worse. It's possible. But most of the time it subsides over the time and you will become just as accustomed to it as before.

I can see that you are really quite tired, anxious and depressed right now. It's really important that if you are feeling very low, you try different kinds of approaches. Many people need to take Xanax or other benzos at the start. Because they would go crazy otherwise.

It's a vicious cycle. If you can't sleep, the tinnitus will seem only worse. You need rest. Maybe some sleeping pills.

Use a lot of ambient noise. When sleeping, listen to some nice natural sounds or other tracks that soothe you. You can use masking just as well on daytime.


While it's not the most original thing to say, it's all going to be okay.

 

[Fish]

Thank you so much Markku. It matters a lot to me, I do appreciate your words and really need this kind of support right now.

I had a panic attack of some sort last night. It's just hard to cope with this new situation since just a week earlier I was symptom-free. I think I could manage the noise throughout the day, but any attempts at sleeping are a real disaster. I'm very afraid of what is going to happen tonight, I'm going to use xanax. I slept for 30 minutes today but whenever I lie down in my bed the noise becomes so unbelievably loud! How do you manage to sleep with T? Is there anything else that could help besides masking? I already downloaded some rain and white noise sounds and have them prepared on my cd player...

I know it's not helping but I think about tinnitus all the time. I've spent 3 whole days reading about it. I can't help but wonder, what happened that set it off? What did I do wrong? Will the meds help or it won't ever go away? I'm full of anxiety and regret...

One thing that brings me some faint hope right now is something I found today - recently there's been a medical trial for electric stimulation for tinnitus that apparently cured some people!

http://www.ncbi.nlm.nih.gov/pubmed/22682958

It was done in my city and I decided to find the three doctors responsible for this study. One of them has a medical office and accepts patients so I'm going to start with him this monday. I don't know what will happen but maybe he'll think of something.

EDIT: this particular video seems to work best for me, after listening to it my tinnitus seems to be a bit lower for few minutes?

youtube link

 

[DezDog]

Hi Fish,
I was in your position in April. My breakdown was mostly related to the belief that I wouldn't ever be able to sleep again; I'd be too tired to work, I'd lose my job and not be able to take care of my family. As one person on this forum put it; I didn't think I'd survive.

The key for you right now is to give yourself hope that things will get better. Look in this forum (and others) for the recovery stories. Find some of those stories, and allow a small part of you to believe in them. This hope and belief in a better future is very important.

Secondly, use some masking to get a little relief. The youtube link you've got is good, but even better are the nature sounds you can get, they are less harsh. There are some linked on this forum from a post by Jim. We can look them up for you if you can't find them.

Use masking in these early days to allow yourself to be distracted by other activities; perhaps working at the computer, or getting to sleep. More and more often you'll find yourself forgetting about the T; for a minute, 10 minutes. You'll always remember and test yourself by listening for it, and you'll always hear it, but the point is, you did forget it, and that's the state you were in two weeks ago. I don't know why you're hearing it now, but it could be an anxiety event that has made you latch onto the sound that was perhaps always there, perceived at a lower volume. You've already admitted a sensitivity and perhaps anxiety related to your hearing. Be happy when you realize you've *not* been thinking about your T; you might have noticed that thinking about it makes it louder. It's a vicious cycle. Distraction allows you to start dismantling the cycle. You'll take it down piece by piece, each time you succeed in a period of distraction from T.

Did you stop doing anything you enjoy doing because you're worried you won't cope, or might damage your ears "further"? You might not be up to getting back to those things, but promise yourself that you'll do them once again after you've worked on these initial steps. You don't want to go forward feeling victimized by the T.

So what about getting to sleep? This was a big deal for me. I mourned the loss of being able to take a nap, and just being able to sleep at night. How could I have taken that for granted?! Everybody can do it, but I couldn't. I used amitryptiline for about 6 weeks. When I finally got on top of this, I was still on it, and it was a stick that I'd beat myself with ("Yeah I slept well, thanks, but only with the help of drugs") - an indicator of the way my mind works.

So, I bought a book called "Coping with Tinnitus and Hyperacusis", purely for the section on sleeping. I recommend getting this book, but I can tell you that the technique they teach is "sleep hygiene". Get a routine; go to bed when you want to sleep; don't read in bed; teach yourself that bed is for sleeping. If you can't sleep, get up. Do something for a while, go back to bed. When you do sleep, and you wake up, don't look at the clock. You only do that to find out how long you slept, and it's never good news! Each day, record how long you slept by noting the time you went to bed, the time you got up and then subtract your *estimate* for the time you spent awake. The book says you will be surprised at how much sleep you *are* getting. On the worst nights, when you tell people you were awake all night, you'll see you actually got perhaps 5 hours. What you are doing is making the process objective, and not subjective (recording data, not how you feel about it). Over the week, on bad days, you can look at your sleep diary and it will be a reminder and source of comfort that you are getting some sleep (perhaps not as much as you'd like, or used to have, but that will come).

In everything I've written, it's about finding the root of any anxieties you have, and using your own thought processes to combat them. Sometimes you need to talk it through with someone. Your inner voice can run you around in circles, but talking with someone seems to make you objectivise things better, and you can feel yourself being reassured even as you talk it through. I'm not a talker, I don't feel the need to talk about my problems, but I can say this was a big part of getting better. Talking to my wife, and talking to my doctor.

I hope at least some of this will help. For the record, I am on fluoxetine now; I think my T came on when I tried to come off it, as a result of anxiety. However, I am off amitryptiline, and last week I had a nap on Sunday afternoon, and *amazingly*, didn't even think about my T as I drifted off. This is unusual, because I still note it when I go to bed, and kind of say to myself, yeah, it's still there but I don't care about it. It's not just bravery either, it's true.

All the best to you
DD

 

[Fish]

Thank you DD for all the support and advice. All you guys are great!

So, even after taking xanax and turning on some white noise overnight, I woke up at 1:30 with bad T and another panic attack. It also made my other health problem worse, I got intense heartburn. I actually turned my music player off and just lied there in bed, trying to focus away from the noise in my head.

I managed to sleep through the night, woke up at 9:30 and what was really great is that my T was sooo quiet for a second I thought it will really go away. It didn't but at least I got some sleep and I'm in better mood this morning

It's also thanks to you really, it's good to have forums like this where you can get support and read about other people's stories.

---
I guess it doesn't matter anymore but I think I've found the reason of my T. It was likely the antibiotic I used for my bad flu one month ago - Ciprofloxacin. For all the people out there, be very careful with meds and I'd say don't take anything unless you really, really have to. Ciprofloxacin can cause tinnitus and it potentially made mine much worse As I said, before that my T was really quiet and it only appeared from time to time. Now it's 24/7.

EDIT: I found Jim's masking tracks. I'm going to try them out today. Thank you!

https://www.tinnitustalk.com/threads/masking-track.16/

 

[DezDog]

You seem in better spirits, great news. Keep at it!

 

[Fish]

Ok today's update: that morning was pretty bad, loud noise from the start. I also failed to meet prof. Olszewski today. Turns out he charges around 45$ a visit and I'm currently low on cash... Now he's gone on holiday too so I'm not going to see him any soon.

I also realized today that my GP, as nice as she is, is an idiot. First she prescribed me an antibiotic that might have caused my T in the first place, today she gave me sleeping pills that can cause tinnitus as a possible side effect. wtf

It's my third day on Betaserc 24mg + Piracetam 1200mg. I take them twice a day.

Maybe it's all in my head (pun intended), but the noise seems to have subsided a little bit. If it can't be gone, I wish it stayed like it is right now. I'm also in a bit better mood. It's difficult but gotta stay positive. Wish me luck guys!

 

[erik]

Depends on the antibiotic, most are ototoxic but not all are bad. Penicillin and Amoxicillin are not ototoxic. Why are you using Betaserc? Are you having vertigo or dizziness? I found in the beginning when anxiety and distress is highest, the best drugs and supplements that help are the ones that help you sleep and calm you down like Lorazepam or Xanax and supplements like Magnesium (not magnesium oxide which is poorly absorbed), Vitamin D, Passionflower, Valerian Root etc. Though Benzo drugs like Xanax is listed as causing tinnitus 6.6% when tested against a sugar pill placebo in a clinical trial, the sugar pill caused tinnitus in 10% of the subject.

 

[Fish]

Thank you for your reply erik!

I always take all information on the internet with a grain of salt, but there's literally whole websites set up to warn about dangers of fluoroquinolone group of antibiotics (the one I took) and lots of people seeking legal advice. Several antibiotics from this group have been taken off the market due to being dangerous. Let me quote wiki too:

Fluoroquinolones have been shown since 1998 to cause irreversible peripheral neuropathy. Typical symptoms involve fasciculations, paresthesia, tinnitus, hyperacusis, and other sensorimotor problems. Symptoms usually occur after a delayed onset, and continue to worsen.

source: http://en.wikipedia.org/wiki/Adverse_effects_of_fluoroquinolones#PNS_effects

Of course, I'm not 100% sure what caused my T. But all that sounds serious enough for me not to take this antibiotic ever again unless my life would depend on it. And, had I known this prior to taking cipro, I would ask for another, safer antibiotic instead.

Ah, regarding Betaserc - I'm not really sure to be honest. It improves the blood flow in cochlea. I know it's mainly used to treat Meniere's. From what I see on various polish websites it seems like it's here a standard drug prescribed to fight tinnitus symptoms.

 

[erik]

Hi Fish,

I was just wondering. I know Betaserc is common for Meniere's and since you didn't mention you had it, I was wondering.

I also took antibiotic prior to getting T, but I think my cause was more stress related than anything.

 

[Fish]

Erik, I think "stress related" is a term overused by doctors who have no idea what the real problem is. I've heard it way too many times before.

New update: yesterday it was really great. My T was so mild at times I really believed my meds are working and T will be gone soon. Sadly, loud noise woke me up at night again and it didn't stop yet. It's 8:07 AM in Poland right now. I'm losing hopes my T is temporary. My arms are getting numb recently too.

 

[Fish]

One-and-half week in, my T is still there. I have some ups and downs, my mood swings a lot. Nights are still disasters, duh. Sadly it's difficult to engage in some activities to stop thinking about T. All my hobbies involve music and thus painfully remind me of "it"... I get paranoid not to play anything at the volume too loud.

I'm absolutely sure my T really does change in volume and pitch. Sometimes it's pure high tone, sometimes it sounds like cicadas, or like whistling kettle. I thought if it stayed constant, I could use it as a reference tone to tune instruments by ear. That would be impressive lol

But thought I'll share - today's been a good day. T was quite low for the most part, with few spikes here and there. As I'm writing this, it's really acceptable I wish it stayed the way it is right now.

Meds I take at the moment:

- Betaserc + Piracetam 2x a day
- nasal spray + antihistamine pill 1x a day
- inspired by Erik, large doses of magnesium 1x a day + other vitamins

I'm going to spend this week ruling out possible reasons of my T. List of suspects:

- TMJD. I brux at night and my jaw is messed up a bit (elementary school accident, lost all my teeth back then lol)
- chronic sinusitis, well I had a runny nose for several years now, nasty allergies!
- neck/spine, gotta do an x-ray.
- cardio? I am aware of some circulation problems, though I never investigated them before. Now is the time.
- thyroid, I've read hormone imbalance can cause T. And sadly, there is some genetic load in my family.

If none of the above is confirmed, I will assume my T was caused by noise or ototoxic drugs and nothing can be done. But for now, I have no intentions in getting used to tinnitus. I want to cure it!

And again, thank you a lot for all the advice and support. You guys are awesome!

 

[calin]

One-and-half week in, my T is still there. I have some ups and downs, my mood swings a lot. Nights are still disasters, duh. Sadly it's difficult to engage in some activities to stop thinking about T. All my hobbies involve music and thus painfully remind me of "it"... I get paranoid not to play anything at the volume too loud.

I'm absolutely sure my T really does change in volume and pitch. Sometimes it's pure high tone, sometimes it sounds like cicadas, or like whistling kettle. I thought if it stayed constant, I could use it as a reference tone to tune instruments by ear. That would be impressive lol

But thought I'll share - today's been a good day. T was quite low for the most part, with few spikes here and there. As I'm writing this, it's really acceptable I wish it stayed the way it is right now.

Meds I take at the moment:

- Betaserc + Piracetam 2x a day
- nasal spray + antihistamine pill 1x a day
- inspired by Erik, large doses of magnesium 1x a day + other vitamins

I'm going to spend this week ruling out possible reasons of my T. List of suspects:

- TMJD. I brux at night and my jaw is messed up a bit (elementary school accident, lost all my teeth back then lol)
- chronic sinusitis, well I had a runny nose for several years now, nasty allergies!
- neck/spine, gotta do an x-ray.
- cardio? I am aware of some circulation problems, though I never investigated them before. Now is the time.
- thyroid, I've read hormone imbalance can cause T. And sadly, there is some genetic load in my family.

If none of the above is confirmed, I will assume my T was caused by noise or ototoxic drugs and nothing can be done. But for now, I have no intentions in getting used to tinnitus. I want to cure it!

And again, thank you a lot for all the advice and support. You guys are awesome!

Hi Fish,

So sorry - I see you have your challenging moments.

I think your list of possible causes are good ones.

I like your attitude about the T being temporary. I share that!

 

[Fish]

Almost 2 months in, damn.

For some reason I had a very bad spike yesterday. The piercing, loud tone in right ear that stayed until now. The masking sound I use every day is not enough to mask this new T. I am anxious it might become even worse. I feel like all (if any) progress I've made over those weeks is now gone. I, we really need some solution for T, and fast...

When you think of it, it's kind of ridiculous that plain ear ringing could cause such distress and be untreatable.

 

[erik]

Fish,

There will be up's and down's, I have them, I think most everyone here does. Some days are bad, some tolerable and some good. Unfortunately, it is hard to know what kind of day you will have until you wake up. Yes, I don't think anyone except those with T know how debilitating a condition it can be, how anxious it can make you nor how annoying it is, but we must fight the good fight and not let T control us or tell us what we can or cannot do.