Hyperacusis, tinnitus & headache

[CalleLaurel]

Hi, not been on here for a while but I suffer from Hyperacusis & tinnitus daily. Not sure if the tinnitus is worse or the Hyperacusis which does make it worse. I now have bad heads every day, these are from the top of my head down over my forehead and eyes. Does anyone else have this or is it a separate issue altogether? I have taken numerous things for headaches but absolutely nothing works at all.

[Happyrosie]

Hello CalleLaurel. I remember your name from posting before so I had a look at earlier posts and replies.

I don't know if you've done this already, but there was quite a bit of information there on how you can help yourself - might it be a good idea to go through these posts and replies again?

Another point is that headaches are not necessarily associated with T, so you might want to go to your doctor about these.

Doctors should be following the guidance given by NICE (National Institute for Clinical Evidence) when their patients go to them with Tinnitus, assuming you live in the UK. These guidelines having been introduced just as Covid got busy, two years ago, some doctors may not be aware of these. You can look at these yourself by going to the NICE website and inputting 'Tinnitus' into their search box.

my final thought is, have you been in contact with the British Tinnitus Association? They are friendly and helpful if you phone or webchat between 9 and 5 on a monday to friday.

[CalleLaurel in reply to Happyrosie]

Hi Rosie, I believe I have done everything possible and I have seen a doctor re my headaches. Nothing gained there I am afraid.

[Happyrosie in reply to CalleLaurel]

Has your doctors gone down the route recommended by NICE? If. It, can you nudge him or her?

I can’t remember if, during previous posts, you were recommended the following book “tinnitus, from tyrant to Friend” ? It’s by a doctor who suffered from T , Julian Cowan Hill. Lots of good advice there.

You are not alone with this, but you are clearly under stress and are anxious.

By the way, whenever I get a headache I drink lots of water!

[CalleLaurel in reply to Happyrosie]

I have been to see lots of people at the hospital, scans hearing etc. I have been very lucky. I haven’t been on here much because it doesn’t help to talk about it only brings it to the forefront of your mind.

[Graham-E]

Hello and welcome,When I started out with all this I had both Hyperacusis and tinnitus with a loss of smell and taste. My hyperacusis caused almost pain at the crinkle of say a crisp packet or the plastic wrapped supermarket flowers. It faded away, for me, after about a year. Occasionally, certain crinkle noises can feel a little unpleasant but not so much as it was. I don’t know if I somehow accept it and habituated or it went away.

I keep hoping that the tinnitus would do the same one day.

Take it easy

Graham

[Upbeatmap]

Hi

Do you have any other symptoms such as hearing your voice reverberating in your ear or dizziness with loud noises?

The reason I ask is that I was diagnosed with SSCD and am waiting for my second surgery to rectify it.

It took a while to get the diagnosis and I needed a second opinion as the first ENT did very little. Diagnosis involves a specific CT scan (MRI generally won’t find it) and something called a VEMP test. As soon as I described all of my symptoms to the second ENT he suspected SSCD.

The symptoms I have are: pulsatile tinnitus, hyperacusis, headaches, dizziness with loud noises, reverb in my ears when talking and a few other things.

I’ve already surgery on the worst affected side which seems to have resolved it by around 75% and have surgery on the other side in a few weeks.

Good luck

[CalleLaurel in reply to Upbeatmap]

Hi, very interesting, I have had a scan which I believe was for the nerve endings, I do get dizziness a lot but only occasionally do I get voices with reverb. Have a headache every day since before Christmas. I will be talking to my doctor about my headaches so will perhaps mention a VEMP test.

[Upbeatmap in reply to CalleLaurel]

The CT scan is normally the first step. It has to be at a specific angle and at a specific resolution, otherwise they can't see the holes in the temporal bone(s). From what I understand, they have to be specifically looking for the condition. Before I had the CT scan I had an MRI and it did not show up.

The VEMP test is generally used to confirm the diagnosis after the holes are seen in the CT scan. It seems that some people have the holes in the bone but it does not affect them so they generally want the VEMP test to back up the CT scan.

Good luck. The surgery for SSCD is pretty intense but I was happy that I had a chance at getting a resolution. My first ENT told me I should go to the BTA website and live with it. It was only when I saw a 2nd ENT that I got the diagnosis.

[OceanSun]

Hi CalleLaurel,

Sorry to hear about what you're going through. I've been suffering from something similar for 2 and a half years now and your symptoms could be linked if my own situation is anything to go by. I have tinnitus, hyperacusis and photophobia 24/7 with fluctuating headaches unlike anything I used to have before this started.

The way you described your headaches sounds a lot like my own - from the top of my head down to behind my eyes. The only diagnosis I have so far is chronic migraine, although I'd never had a migraine before in my life until this started.

I'm sometimes able to take the edge of the head pain with painkillers but I've found no medication to be useful for combating the hyperacusis or photophobia. I sometimes have to wear high fidelity earplugs and I avoid using screens in bad light.

I'm on a neurology waiting for a second opinion and desperately hoping that leads to some progress. I wish you the best of luck.

[CalleLaurel in reply to OceanSun]

Hi, sorry too that you are suffering. It is bad enough coping with the Hyperacusis & tinnitus but now the bad heads is another level. My bad heads never subside & nothing helps either. Have you tried anything for migraine? .I have been referred to the neurology department but have been told it will be a very long wait & they may not see me at all. I find it so hard to believe there is nothing at all that can ease the heads at all. Good luck with getting your appointment.

[MOLKO1972 in reply to CalleLaurel]

Hi CalleLaurel,

Have you tried Sumatriptan for your migraines? You have to be prescribed it by your GP. It's the only thing that works for me. I am a terrible sufferer and suffered for 2 years. Tried every preventative treatment going, but I just ended up with really bad side effects. Then my GP prescribed Sumatriptan and it changed my life. I also saw a Neurologist who said to keep taking the Sumatriptan.

I'm not sure if Sumatriptan can spike T. Sometimes I take it and my T spikes and sometimes it doesn't, but it could be the migraine causing the T to spike...just another one of those mysteries that I can't seem to get an answer for.

All the best

[CalleLaurel in reply to MOLKO1972]

Hi, Dr hasn’t diagnosed migraine so haven’t been prescribed Sumatriptan. I might suggest it and see what he says. Thank you

[OceanSun in reply to CalleLaurel]

Yeah it's a horrible combination of things to have to deal with. I've normalised waking up and going to bed with these symptoms every day but I'm still so desperate to find something that will help to break the cycle.

The first neurologist gave me a list of standard migraine prevention meds to try, which I've now worked my way through unsuccessfully. Also tried abortive meds like Sumatriptan with little to no success.

The only thing I've found that reliably takes the edge off the bad head is co-dydramol. I take it when things are at their worst and it gives me some relief, but doesn't help with the hypersensitivities.

[CalleLaurel]

My dr has prescribed Propranalol to help with my constant bad heads as nothing I have taken has worked at all. I am not sure if this will make my tinnitus worse or not. Has anyone else taken them & did you find the tinnitus got worse. When investigating some say yes and some say no. Would be good to hear from someone who has actually taken them.

[MOLKO1972 in reply to CalleLaurel]

Hi CalleLaurel,

I have taken Propranalol for migraines and I found they worked at the beginning, but then I started to get headaches again and my blood pressure went too low and I generally felt rubbish. They may work perfectly well for you. I can't comment on whether they could possibly make your T worse, as my T started a couple of years after taking the Propranalol.

[CalleLaurel in reply to MOLKO1972]

Hi, it appears after investigating, Propranalol isn’t good for tinnitus sufferers.

[MOLKO1972 in reply to CalleLaurel]

Don't you feel as a T sufferer that you have to check everything you take? Just in case it might make your T worse. The T is tiring enough!

[CalleLaurel in reply to MOLKO1972]

Yes we do need to check medications ☹️

[Toughmathew]

Sometimes really dont know what headache is coming from ... If go to gpParacetamol......

[Persevere99]

Hi

Sorry to hear you’re struggling with your T, after reading your upbeat post from 2 years ago.

If it helps, please read my T story, where I describe how I managed to drop my T rating from 50 to 0.

And, in so doing, was able to come off the benzos I had been taking for many years.

What really helps me is saying this to myself many times a day - T is nothing…….compared.

All the best!

Persevere99