Really Bad Headaches with Tinnitus and Hyperacusis

[Sash]

For the first time I am really struggling with tinnitus and hyperacusis.

I have had tinnitus for a few years now and has gradually worse. My hyperacusis is around two years old and was getting better.

In the past very occasionally I have had headaches and feeling of nausea and fatigue. Last time this happened was back in December 2020.

For the past week I have had really bad headaches and a feeling of nausea/fatigue and my ears have hurt too. I can only think of one reason and it is the bike ride that I went on a couple of weeks ago when it was windy. It seems bike rides when it is windy causes issues with my ears, normally as a delayed reaction. There were also a couple of times during the week I went to a restaurant, where the decibel level was around 80 and maybe pushed me over the edge.

I think my headaches are linked to my ears though my neck doesn't seem as mobile as normal. I'm planning to see a Chiropractor next week. I don't think it is Meniere's disease or vertigo.

I wondered does anyone else have headaches and feeling of nausea/fatigue?

 

[Oabmarcus]

Nausea can be caused by many things, chiro might make things worse, so you should be careful about it. Usually nausea has its origins in the gastrointestinal system, so I would go to a specialist in that area and get things checked out.

 

[Bimmerboy]

@Sash, I'm also getting the same symptoms you have mentioned with the additional burning in ear and facial pain (cheeks, side of jaw, eyebrow).

Before it was just burning pain in ears but now I'm getting these symptoms as well. I'm assuming my setback started when I went to the pub last Saturday to watch England vs Ukraine. It was a lot of shouting when England scored and my 14 dB protection did not work. The crazy thing is my symptoms didn't kick in till at least 3 days after going to the pub so am very confused.

I'm hoping your setback isn't from bike riding, but perhaps due to the restaurant. I love bike rides myself and they are the only reason for me to get out at the moment, I would hate to give it up. Hopefully we both get better in the next few days.

 

[sydneygirl]

Hey Sash,

I am going through the exact same thing as you. I've had tinnitus since I was 13 (I'm 24 now) and developed hyperacusis after being in a loud bar without wearing earplugs 2.5 years ago.

I've noticed in the past year that whenever I go for my walks that wind causes my earaches + headaches to get worse, I thought it was just me until I spoke to my pain physician today that said he's dealt with people who suffer from Tensor Tympani Syndrome who experience ear aches when cold wind hits their ears. It's not just us!

From what you're describing, to me it seems like you have Tensor Tympani Syndrome as I have the same feelings of headaches, dizziness, fatigue (which is then exacerbated by wind + loud sounds). I was diagnosed this by Myriam Westcott who is a leader in academic research of hyperacusis. If you google her, she will come up. I had a Zoom session with her and she confirmed I had this. Myriam said that some people can habituate to their hyperacusis but I know for me it's been 2.5 years and I've had up and down periods where I've gotten used to it, and then it gets bad again. However, at the end of the day I have had a nonstop migraine for 2.5 years due to the hyperacusis + Tensor Tympani Syndrome and this seems like what you have as well.

Myriam advised me to get filtered earplugs, this helps with the migraine and dull earache pain as you can still hear what's going on but for me it gives a chance for my ears to 'breathe' as it helps filter out loud sounds that trigger the hyperacusis and migraines. I have also been prescribed Prednisone which is medication aimed to help with migraines but it hasn't helped, nor has 2 rounds of injections that was administered by a neurologist.

Myriam also recommended me to see a pain physician for my debilating migraines and I did that today actually, and my pain physician said that he would book me in for a day surgery of administering something (I forgot the name) to block the nerve that is causing me migraines. He then said that Botox would be administered in the neck (Stellate Ganglion) to help with the constant chronic ear ache pain.

I would recommend you to
1) book an on online session with Myriam so she can work with you on your pain,
2) Then find someone in your area that is a pain physician.

I'm happy to provide you feedback from my day surgery from the nerve block, hopefully that helps with the migraines.

 

[Juan]

I have the same feelings of headaches, dizziness, fatigue (which is then exacerbated by wind + loud sounds

Wind gives tinnitus or ear fatigue to pretty much everyone, even people who do not suffer from hearing problems.

Myriam advised me to get filtered earplugs, this helps with the migraine and dull earache pain as you can still hear what's going on but for me it gives a chance for my ears to 'breathe' as it helps filter out loud sounds that trigger the hyperacusis and migraines.

That makes sense. I received the same advice many years ago only to find out that my hyperacusis was too bad for filtered custom made earplugs, which block less sound. So I ended up using high-attenuation foam earplugs because I could hold a normal conversation wearing them, and still hear pretty much everything through them (severe hyperacusis!).

I have also been prescribed Prednisone which is medication aimed to help with migraines but it hasn't helped, nor has 2 rounds of injections that was administered by a neurologist.

In theory this is administered for noise trauma, and it helps some people and does not help other people. It is a bit random. I did not know doctors prescribed this for migraines... sounds a bit odd to me.

However, at the end of the day I have had a nonstop migraine for 2.5 years due to the hyperacusis + Tensor Tympani Syndrome and this seems like what you have as well.

Tinnitus and hyperacusis react to sound. If your ears react they will never get stable. You have to break the cycle. So hyperacusic ears need rest to be stable. 2.5 years is a short time as far as hyperacusis is concerned... this is - sadly - a long journey.