A Neuroscientist Realises How Little We Know

[NeuroNut]

Hello all,

I've had this rather distressing condition for nearly 3 weeks now. Mostly left ear, a sort of hissing which occasionally breaks into a high tone. I'm still hoping it goes away of course, but starting to lose that hope.

Not really sure what caused it. I have listened to the radio for years with Bluetooth headphones, mainly at work. But not loudly. The thing actually started when my ear was blocked for a couple of weeks by wax, but sadly it stayed after the wax was removed. I hadn't used the headphones much at all in the week or so prior, as was on holiday. My job is sometimes stressful but not particularly so. And I am otherwise in good health, I think.

I can hear it almost all the time. I don't feel like I've had sudden hearing loss, but will see an ENT next week to confirm. There was one night last week where it felt like it was gone, but it was back when I woke up the next day. That was very hard.

I've suffered from extreme anxiety, for the first time in my life (I'm 40). I can't sleep. I tried propranolol to help me cope, but suffered extreme nausea and sweating, and also awful insomnia, so have them up after about 5 days. I'm now 4 days into a 7 day prescription for zopiclone, which I have to say has been disappointing. It does knock me out but I wake very early the next morning and can't get back to sleep.

My job has been ok so far because I am an academic neuroscientist. I have a research fellowship which means I don't need to teach, so in practice I can do very little if I want, day to day - in the short term at least. Longer term not so much. I honestly don't know how I'll cope longer term. Every day is a struggle right now.

What has surprised me, is how little we know about tinnitus. I know people who have it, but I never realised how awful it is. Perhaps I will habituate over time, but the idea that so many are going through what I am going through is astonishing. I've read all the research, or lots of it anyway, and I'm disappointed by it. The evidence for drugs or neural stimulation is mixed at best. There's nothing that reliably helps other than CBT, which is just learning to live with it basically. There is a promising animal model of tinnitus (with Guinea pigs) which was cured by transcranial magnetic resonance stimulation, but TMS has not been that useful in human trials.

So here I am. Another traveler on this rather awful journey. I would particularly appreciate optimistic stats about my chances for spontaneous remission, and references to new or experimental treatments that I might try. I will find out next week if anything scary but unusual is going on, and otherwise just get therapy to help me habituate. But I want to try every avenue to get better too.

If you're still reading this rather epic introduction, then thank you. I'm sorry you have this awful condition too!

 

[Contrast]

here's what science does know about tinnitus and it's connection to hearing loss.

If tinnitus can be treated by reversing hearing loss in the near future (cochlear hair cell regeneration/synapse repair) neuro-plasticity may very well be a two way ticket undoing the damage it caused.

No need to make people feel hopeless help is on the way.

 

[Contrast]

https://www.tinnitustalk.com/thread...igan-tinnitus-discovery-—-signal-timing.2805/

This could help a lot of people and soon.

 

[Tinniger]

I think that one should first describe the tinnitus complaints more exactly, before one guesses to any therapies.
Do you have any hearing loss?
Does your tinnitus affect both ears?
What does your tinnitus sound like?
Does your tinnitus have a pulsatile pattern?
Can the noise be influenced by movement?
Do you have hyperacusis?.

 

[NeuroNut]

@Tinniger

My T started in the left ear but seems now to be in both. It's about static hissing and ringing - very loud. It has no pulsatile pattern that I can detect, and although it changes a lot during the day I can't seem to change it with movement. I don't know about hyperacusis - things were not painfully loud when the T started, and then they were painfully loud after I had my ears unblocked, and now not so much (two weeks later). I'm not aware of any sudden hearing loss, but I've never heard very high frequencies that well.

My T is definitely worse when I'm anxious, as I am now because I can't sleep. But my life pre-T was not enormously stressful.

Thanks for asking.

 

[Alex Prime]

I think that you have to take vitamin B complex and maybe herbal remedy for sleep... I think that you can improve... it takes time, though.

 

[NeuroNut]

Thanks!

 

[NeuroNut]

So I thought I'd post an update. Nearly 4 months in, and things are a lot better. I can still hear a hissing whenever I listen for it, but I now go for hours at a time, most days, without listening for it. I don't 'try not to think about it', so much as just trying not to dwell on it. And it works. I suspect that the noise itself is also quieter than it was, but I don't know for sure as I don't really measure it any more.

Or in other words, I'm not free, but I am starting to get my life back.

Some thoughts that others may (or may not) find useful.

1. The first couple of months are the hardest.

I was literally going mad, totally unable to function. I couldn't really think about anything else properly. I considered suicide, and called the Samaritans. I was not coping. This is partly because the noise was so loud: I could hear it over my morning shower, and every other second of the day. But it's also partly because actually getting tinnitus is really distressing; it's natural to spend a lot of time, early on, thinking and worrying about it. Which certainly seemed to make it worse for me.

I read here and in other places, about people who have this condition for decades. Frankly, I don't see how I could have coped with this condition, as it was in those first couple of months, for even 1 year let alone 10.

2. The prognosis is good.

It is estimated that 5-10% of the population have some sort of persistent (constant or waxing-and-waning) tinnitus: that's 3-6 million people in the UK alone. If you're like me, then you will be very disappointed by the state of the science of tinnitus, when it first starts. How can something so awful and so common, attract so little attention?

The answer is: because the prognosis is good. If every day, 3-6 million people were feeling like I felt when my tinnitus started, it would be a national health emergency. The country would cease to function, basically. It's not a national health emergency because almost all of those 3-6 million people are basically fine; only a tiny, tiny minority report tinnitus-related DISTRESS which endures over years. During the first couple of months, I frankly couldn't imagine how I might not feel distressed, unless the sound went away. But if your tinnitus is subjective, then not noticing it is essentially the same as it not being there: it might not last forever, but you can - and eventually very probably will - have relief.

3. The neurological model of tinnitus offers some answers

The neurological model of tinnitus was introduced in the 1960's, and as far as I'm concerned, no better model has since been proposed. The model defines tinnitus as a 'threshold effect'. Your brain is in a constant state of flux, with a lot of spontaneous neural activity, and the auditory cortices are no exception. You don't hear this spontaneous activity because your brain filters it out. Sudden hearing loss (often from loud noise, mine was from an ear infection) encourages your brain to open those filters up a bit, to make them more permissive - the aim being to increase the gain on your ears. If your unlucky, this means you start to hear that spontaneous activity. You hear what was always there to be heard, but which you simply never listened to before.

One consequence of the model is that the tinnitus sound itself, is basically random; in most cases (musical hallucination aside), there really is no point in trying to analyse what the sound 'means'. I read a lot of discussion both here and elsewhere on the net, on the details of these sounds. And while I understand the urge to find kindred spirits when you're feeling so awful, my current view is that this is at best a complete waste of time and energy, and may possible also aggravate the condition - because it makes you dwell on the noise.

Another consequence of the model is that recovery essentially involves re-setting the filters - which will not happen while one is sitting alone, listening hard to these new sounds while tearing one's hair out. Our brains filter out irrelevant stuff all the time; you want the brain to reclassify the new noise as irrelevant stuff. And it cannot do that if the noise is a source of threat or distress.

Finally, this model may also explain why more neurological interventions for tinnitus, like drugs or neuro-stimulation, don't really work - because these interventions are trying to change the 'spontaneous activity' which the tinnitus patient is hearing, rather than to change the filter that decides how much we hear. The point is, the neurons whose firing we hear, were also firing before we heard them; one might deliver relief by quietening them down, but this is not the same as reversing the original change.


4. SLEEP.

Don't endure tinnitus-induced insomnia; it makes the condition worse. Some people seem to get good value from the various herbal remedies around (Valerian and so on), and I may try them myself again in due course. But when I was at my worst, those things were a drop in the ocean: they made no noticeable difference to me at all. However, there are plenty of proper pharmaceuticals that will do the job. I took zopiclone initially, and it worked very well, but doctors get a little skittish about prescribing it for more than a few weeks at a time. Frankly, I know plenty of people who've taken it for months and months and then stopped, with no problem at all, but the stats say that dependence is a risk. I now take low-dose amytriptaline, which also works perfectly well, and which I can take over months or years if needs be, without the same worry.

Lots of people get very nervous about pharmaceuticals, and that's fair enough. But when your house is on fire, as mine certainly was when my tinnitus started, you can't sweat the small stuff. Personally, I would much rather take something which has been studied properly, under my doctor's guidance, than a herbal remedy supported by shaky, anecdotal evidence. But whatever you take, do please take something, if you're struggling to sleep. I struggled for weeks and went totally mad before I started, and I felt much better almost immediately after I began to sleep again. Obviously it's great if you can sleep with no problems, but don't try to tough it out, at least in those first months.

Conclusions

I am not better, but I am much better. If you're new to this, then you have my deepest sympathy: it's horrible. My experience, though, is that it really does get better for most people: the sound may never go away, but it will very likely get quieter, and you will almost certainly stop hearing it all the time. Remember that online forums will naturally attract the minority of sufferers who have the worst experiences; they will amplify the apparent risk that you will be one of those people, even if they try not to. And on a lighter note, I appreciate my life much more, now that I've stared into the possibility of losing it - or losing the love of it, anyway. Getting better is not wonderful enough to make it worth having T in the first place, but it's wonderful all the same.

 

[Bam]

@NeuroNut

May I ask what you make of Amitryptyline? How much you're taking etc. I presume 10mg a night. Do you think it helped the T volume?

Also how loud has your T reduced to these days? I know you said a hiss when you 'tune in to it'. This suggests very mild but can you hear it over a normal volume TV for example?

 

[NeuroNut]

@Bam

I take 25mg in the evening; I was put straight onto it by my doctor, so don't know if 10mg would have done the job. I had been prescribed zopiclone (7.5mg) for a couple of weeks before it, and that also worked fine for me, though it only knocked me out for about 6 hours. I tend to think my T volume has lowered because I can sleep again, because it started to happen before I started on the amitryptaline, but I guess I won't know until I come off that drug. I have no real side effects, so I'm not in any hurry, but it's obviously preferable to be off them rather than on.

My T is quieter than a TV at normal volume, but I can hear it over the TV if I listen to it, just because it's a totally different frequency. I can't hear it in the shower even if I listen for it. And I have to strain to hear it (which I obviously don't do much) while walking down a busy city street. That said, it still feels super-loud if I try to sleep in silence. As I write this, the hiss feels to be about the same volume as my office air conditioning.

 

[Nick M]

Hello all,

I've had this rather distressing condition for nearly 3 weeks now. Mostly left ear, a sort of hissing which occasionally breaks into a high tone. I'm still hoping it goes away of course, but starting to lose that hope.

Not really sure what caused it. I have listened to the radio for years with Bluetooth headphones, mainly at work. But not loudly. The thing actually started when my ear was blocked for a couple of weeks by wax, but sadly it stayed after the wax was removed. I hadn't used the headphones much at all in the week or so prior, as was on holiday. My job is sometimes stressful but not particularly so. And I am otherwise in good health, I think.

I can hear it almost all the time. I don't feel like I've had sudden hearing loss, but will see an ENT next week to confirm. There was one night last week where it felt like it was gone, but it was back when I woke up the next day. That was very hard.

I've suffered from extreme anxiety, for the first time in my life (I'm 40). I can't sleep. I tried propranolol to help me cope, but suffered extreme nausea and sweating, and also awful insomnia, so have them up after about 5 days. I'm now 4 days into a 7 day prescription for zopiclone, which I have to say has been disappointing. It does knock me out but I wake very early the next morning and can't get back to sleep.

My job has been ok so far because I am an academic neuroscientist. I have a research fellowship which means I don't need to teach, so in practice I can do very little if I want, day to day - in the short term at least. Longer term not so much. I honestly don't know how I'll cope longer term. Every day is a struggle right now.

What has surprised me, is how little we know about tinnitus. I know people who have it, but I never realised how awful it is. Perhaps I will habituate over time, but the idea that so many are going through what I am going through is astonishing. I've read all the research, or lots of it anyway, and I'm disappointed by it. The evidence for drugs or neural stimulation is mixed at best. There's nothing that reliably helps other than CBT, which is just learning to live with it basically. There is a promising animal model of tinnitus (with Guinea pigs) which was cured by transcranial magnetic resonance stimulation, but TMS has not been that useful in human trials.

So here I am. Another traveler on this rather awful journey. I would particularly appreciate optimistic stats about my chances for spontaneous remission, and references to new or experimental treatments that I might try. I will find out next week if anything scary but unusual is going on, and otherwise just get therapy to help me habituate. But I want to try every avenue to get better too.

If you're still reading this rather epic introduction, then thank you. I'm sorry you have this awful condition too!

When I complained about my T to my ENT. He told me "So what? I have patients who come here daily who are suffering from cancer". It really rubbed me the wrong way and made me angry but the more I thought about it, our own problems seem to be worse than other people's problems. That's not to say that we can't find a solution but he basically told me to deal with it. There's nothing we could do...

This only adds one more condition to my already incurable condition of stuttering. Now I'm a stutterer who also has to deal with T. Medicine has come a long way but it's still in infancy.

 

[NeuroNut]

@Nick M

With the benefit of hindsight, I feel a little less annoyed about this than I did at the beginning. Tinnitus hasn't been the focus of a huge research effort simply because most people who have the condition don't struggle to lead normal lives. I'm not sure the same is true of stutterers, though it's also a less common condition.

I would say that, despite the general sense that T is permanent, almost everyone I've spoken to during the last few months, who has had it for more than a few months, now does not have it. So anecdotally at least, there's still every reason to hope your new incurable condition will cure itself over time.

 

[Nick M]

@Nick M

With the benefit of hindsight, I feel a little less annoyed about this than I did at the beginning. Tinnitus hasn't been the focus of a huge research effort simply because most people who have the condition don't struggle to lead normal lives. I'm not sure the same is true of stutterers, though it's also a less common condition.

I would say that, despite the general sense that T is permanent, almost everyone I've spoken to during the last few months, who has had it for more than a few months, now does not have it. So anecdotally at least, there's still every reason to hope your new incurable condition will cure itself over time.

I've learned to deal with stuttering at this point at age 38. I've developed methods and word substitutions that often work. What breaks my heart is that 3 year old daughter appears to have the condition as well and I know how difficult it is to get through life. Fortunately me and my daughter stutter at a lower rate of the spectrum at about 20% I have seen some pretty extreme stutterers and I can only image what they have to go through... As to my new friend tinnitus, it's not that bad. It comes and goes and typically gets worse when I have the cold/flu or if it take any type of drug or lack sleep. If it exercise regularly, eat healthy and get good sleep, it's almost not noticeable. Strangely enough, the T has improved my speech. When I hear my T while speaking, it has some positive effects on my stuttering and reduces and sometimes eliminates it completely.

For the first time in my life after getting T, I'm glad we are all mortal beings because I wouldn't want to live forever suffering from this condition as that would be torture.