Approaches in Dealing with Typewriter Tinnitus in the UK?

[Ken Jordan]

Hi all.

I have only just joined Tinnitus Talk after a recent diagnosis of 'typewriter tinnitus' in my left ear. This is my label rather than just a 'tinnitus' diagnosis provided by the consultant.

I'm in the UK. My tinnitus started about 8 weeks ago. I would describe the tinnitus as 'machine gun' ticking over and then going at full pelt at various intervals throughout the day. Essentially, there is always a sound there during the day and his goes up and down. Woke this morning and without moving I realised I had no tinnitus at all. After an hour I sat up and 10 minutes later the tinnitus returned. If I lie down, after a few minutes the full-pelt machine gun will disappear or slow down considerably. Machine gun re-appears often when standing.

An MRI which found no benign tumours. I asked whether the MRI suggested any micro vascular compression of the cochlear nerve and was told no. My reading of various online resources suggests that my tinnitus maybe related to vascular compression of a nerve, and from what I read, confirmation is likely if I were to respond to Carbamazepine within about 2 weeks. Carbamazepine is not a recognised go-to in the UK and any surgical decompression approach is also not on the cards.

I understand that Carbamazepine may abate typewriter tinnitus by interfering with sodium ion availability; does anyone know whether this is a similar mechanism to CBD oil?

Would very much welcome any comments on my story so far?

Many thanks.

 

[Soo]

Dear Ken,

I am also new to this forum.

Having had 'normal' tinnitus for 30 plus years,I developed self diagnosed (from finding research papers) typewriter tinnitus about 6 months ago.

The most recent bout started in March and has stayed. I got loud crescendo of tapping that lasts for about 10 seconds and then suddenly cut out. They occurred every 1 to 2 minutes. At the peak of the episode, I briefly felt disorientated and unbalanced. I couldn't drive or function normally at all.

I told my GP and literally begged him to prescribe Carbamazepine. He hadn't heard of the condition but after discussing with the hospital ENT dept, agreed to prescribe it. I was feeling suicidal by that point.

The relief was instant, I was walking around proclaiming a miracle... for about 2 weeks. Then it all started up again, slowly at first but rapidly worsened. I upped the dose and once again it relieved it for a while. I realised I can't keep increasing the dose so I am now taking 150 mg twice a day and putting up with the tapping. The Carbamazepine seems to be stopping the worst of the crescendos but I don't see myself being able to live with this.

I am seeing an ENT consultant in a few days... but it seems rare so I'm not sure they will have experience of this.

I would prefer to have my cochlear nerve cut and be deaf than live with this. If I have to stop taking Carbamazepine for any reason and the severity of the episodes return, I really don't know what will happen...

I totally empathise with you Ken and really recommend asking your GP to try Carbamazepine. I pray it will work long term for you.

Soo

 

[EDDTEKK]

I have typewriter tinnitus too. I did surgery and it didn't help me. It's even worse after! It's so unbearable that I consider assisted suicide. I cannot live with it.

 

[Esra47]

I have typewriter tinnitus too. I did surgery and it didn't help me. It's even worse after! It's so unbearable that I consider assisted suicide. I cannot live with it.

What kind of surgery did you do? And how long have you had typewriter tinnitus? I don't want to try Carbamazepine because of the side effects and my doctor here in Germany wouldn't prescribe me it.

 

[EDDTEKK]

What kind of surgery did you do? And how long have you had typewriter tinnitus? I don't want to try Carbamazepine because of the side effects and my doctor here in Germany wouldn't prescribe me it.

I did microvascular decompression surgery. I have had the typewriter tinnitus for 2 years and I still have it after the surgery.

Most of the time it is worse than before the surgery.

Carbamazepine is a safe drug, you should try it. Unfortunately it helped me only for 5 months, then the effect vanished.

 

[CABE67]

Dear Ken, not sure if you are still struggling with typewriter tinnitus. Mine came on suddenly one night while in bed when I was 7 months pregnant. I had no experience with tinnitus before that.

It was terrible for months and it was all I could focus on day or night. I thought there was no way I could go on living like that. I thought it would go away once giving birth but it stuck around. I started using white noise to sleep and tried to avoid quiet places during the day. If there was enough background noise I could avoid thinking about it too much.

I started seeing an osteopath specialized in TMJ about 9 months after the typewriter tinnitus started. I had a few sessions with him and it temporarily helped (meaning maybe for a day or so the tinnitus went away but then it came back just as strong). I gave up on the osteopath but he did give me some exercises to regularly practice where I would very subtly move my jaw right and left (the smallest movement possible), and make sure I didn't clench my jaw (a bad habit of mine), plus a few other tips. I kept those practices up and with time, my tinnitus became less and less noticeable. I am not sure if it's related to the exercises or not. Every once in a while it does come back but usually only lasts 1-2 days and then fades away again. I consider myself pretty lucky that I only had to deal with the "tough" part for a year or so. I know how debilitating it can be.

If you haven't already seen an osteopath specialized in this, you might want to try. Who knows.

 

[Ken Jordan]

Firstly, thanks @Soo and @CABE67 for the comments and sorry it has taken so long to come back to the forum – life!

In May this year I flew into Luton – other than flying out 7 days previously I had not flown since I started the typewriter tinnitus earlier in the year. I had at the time, what I thought was a head cold and once landed the pain in my ears was intense from the failure to release the pressure. I returned home within the hour and used a Nasal Balloon and was able to release the pressure in my non tinnitus ear with the tinnitus ear releasing about a couple of hours afterward. The typewriter tinnitus had abated a little and within the week it had gone completely. As an aside, the day after landing I tested positive for COVID-19 and suffered with very heavy cold symptoms and headaches etc for 3-4 days but was fine after two weeks.

At the time of writing this note, the typewriter tinnitus has not returned however, my original tinnitus (which started two months prior to the typewriter tinnitus) returned in September, however, I can live with this as it's only a problem sometimes at night. When I lay on the affected ear it also reduces or goes away for a period of time and sometimes disappears all night.

The tinnitus I now have is bubble bursting sounds in my ear at a low level. During everyday activities I don't tend to notice it.

I am unsure whether the flying and pressure issue was responsible for eliminating the high noise typewriter sounds I was experiencing or whether it was just coincidental! Any comments on the potential mechanism at play welcome.

My fear is that with restarting of the low-level bubble sounds the full-blown typewriter tinnitus will return – I will just have to wait and see!

@Soo – Many thanks for your comments – I do hope you are in a better place now.

@CABE67 – Many thanks for your comments – very interesting. If it returns, I will try the TMJ route – nothing to lose.

 

[Ken Jordan]

Since my last post in November 2022, my tinnitus has returned with a vengeance! The return happened in December 2022. I cannot tie to a time or circumstance it goes up and down at will. As previously described, when lying down it can disappear for a short period... often for enough time to get to sleep. Turning from side to side turns it on and off for short periods.

Any updates from fellow sufferers of this type of tinnitus?

 

[Nick47]

@Ken Jordan, did you start treatment with Carbamazepine? It's the gold standard treatment. Only other option is microvascular decompression surgery. If you have the surgery, Dr. De Ridder is very experienced in this.

 

[momus]

Woke this morning and without moving I realised I had no tinnitus at all. After an hour I sat up and 10 minutes later the tinnitus returned.

This happens to me too, although it returns much more quickly. I'm not sure why it happens, maybe it's just not being awake enough to hear it first thing in the AM? Fortunately, my good 20" old box fan that lives next to me in my apt deals w/ the tinnitus quite well.

As for meds that might mitigate my tinnitus, nothing has really worked. I stay away from things that make it worse such as loud noises, stress and weed, that's the best that can be done, apparently. Once I move, I'll get a small apt waterfall to mask the tinnitus, it should work better than the fan. There's a small pet water dish that has a constant refill thing going, and that worked really well when I was cat sitting last year in a friends apt.