Last Ditch Effort: Loud and Painful Tinnitus — Also Have a 2 mm Aneurysm

[KCMoe]

Hi. I'm K.C., 44 year old male. I have had tinnitus since I was 10. Started out after a doctor nicked my ear drum during a surgery causing scar tissue. I have great deal of hearing loss with it. Growing up I always just ignored the buzzing by listening to loud music in my headphones or just keeping my mind off it. For years it was always something I could manage and almost ignore at times.

In November 2017 I was at work conducting a phone interview for a possible new hire. It was already difficult to hear and understand due to my hearing loss, but as I was trying to pay close attention and focus I suddenly lost vision in my left eye. Completely black. After 5 minuets my vision came back. During break while I was talking to the other panel members I started getting a very massive headache.

That is when the ringing came back and for close to three years now it is every day, every minute of the day. I cannot hear conversations, TV, music or anything over it. It is a constant, very high pitched, ringing. Wakes me up in the middle of the night.

I have tried hearing aids with the newest masking technology, apps on my phone with all colors of noise, everything. Nothing touches it.

In 2017 they found a 2 mm aneurysm in my head but they doubt that it is the cause of any of it. They refuse to remove it or do anything to address it.

I joined today to just see if I can find anyone that may have some idea of what else might help. I am desperate. The ringing is not only loud, but it is also painful. During my last MRI this past week, it has become even louder and now causes major headaches daily. I just need someone to help.

 

[Kendra]

I would get a second and even third opinion. For them to just dismiss your symptoms especially with what the MRI is showing seems ridiculous. Also, is your hearing loss sever enough for a cochlear implant?

 

[DebInAustralia]

Hi there,

Sorry you're going through this. Sounds very stressful.

The headphones (as Michael Leigh points out) worry me, even at low levels (cumulative damage). Recent extended audiogram?

I presume you have seen a neurologist regarding your vision and migraine? I know you said your MRI revealed an aneurysm, with no indication of surgery. I would be getting a second opinion about that. Did the doctor ever give you an explanation for your vision loss, headache, and now loud tinnitus?

I really think you need to either press for answers with your existing neuro or seek a second opinion.

 

[Lilah]

Wow, such a scary experience especially with the temporary vision loss. Have you narrowed down the possible causes of the tinnitus?

 

[UKBloke]

Hi K.C.,

Sounds like you've been going through the mill recently. Sorry to hear about that.
The headache symptoms you describe, particularly the visual disturbance, sound like classic migraine. I've suffered from migraine with visual aura, strangely though without the pain of migraine, for about twenty years. In certain circumstances I can sense an episode coming on (each one lasts about 30 mins.) sometimes a couple of days beforehand. One gets a portent.

There seems to be some commonality between migraine (certainly the visual disturbance aspect of it), tinnitus and even epilepsy, in as much as they're all essentially neurological conditions. Specifically relating to tinnitus though there has been much discussion regarding treating it with the now-discontinued anti-seizure drug, Trobalt. Even though Trobalt is no longer available there are exciting developments in the pipeline to translate aspects of Trobalt into a tinnitus defined treatment so I think we're all waiting with baited breath on that one. What we have left in the meantime are various anti-seizure drugs that may or may not affect tinnitus but can be indicated where migraine is concerned.

Being that you're situation involves tinnitus and perhaps migraine, if I were in your position I would now discuss all of this with my doctor as well as the potential for off-label use of one of the anti-seizure drugs that may be indicated in migraine prevention. A quick Internet search brings up, Topamax, Topiragen, Depacon, Depakote. I would make it very clear to my doctor that although the aim of considering an anti-seizure medication is to help prevent migraine an equally important reason is to see if it also helps calm the tinnitus.

It may or may not work, and for sure I'm certain your doctor will have a view on it. But as I say, if I were in your position right now this is an avenue I would be exploring. I hope you find a way through. Let us know how you get on.

 

[KCMoe]

Thank you all. The support is amazing to feel. Often I wonder if I could ever make anyone else understand just how painful this ringing really is. Not just annoying, but painful.
September is always a busy month in my line of work, but I plan to check up on this site more often. I have seen 5 doctors of all kinds of specialties, and still none able to give any ideas what to do next. The headaches continue, but not as bad. After the MRI it took a few weeks to settle down. The ringing is still as loud as ever.

Next stop is to the VA, to see if my military service left me any benefits. Perhaps I can get in over at Stanford to talk to some of those smart people.

I understand the use of the headphones is bad, but at this point I crave those few minutes where I feel like the only sound in my head is Learning to Fly by Pink Floyd. I will keep trying to figure it out, and keep checking on anything you all can offer.

 

[dan]

@KCMoe do you have hearing loss? Have you had an audiogram?
Do you mean psychologically painful or do you have actual ear pain?