Naturally my TN is worse. I generally know how to deal with it. I also have hyperacusis, which I understand is fairly common with TN. Anybody else got it? Any tips for handling it?
TN has been one of my diagnosis after a few neurosurgeries. I’ve also had many issues regarding my hearing but never been told I have hyperacusis. I know, for me, loud noise certainly can be a trigger for a nauseating headache. I was told I ‘maybe’ hypersensitive but never had that confirmed. I have a few triggers, so trying it pinpoint a single cause is near on impossible. For me it seems it’s a combination of triggers, my hearing being just one.
As a music teacher, having issues with hearing would make things extra difficult. When it’s ‘music’ that can be pleasant, when it’s a bunch of instruments, all doing their own thing… I couldn’t manage that.
I think we should be asking you the question. How do you do it??
Merl from the Modsupport Team
I have hyperacusis after mvd surgery for tn. I had a musicians ear plug made by an audiologist. It decreases the loudness by 15% which helps. But it also decreases hearing in noisy places. Becomes a choice. I hope that helps.
Thank you! Just knowing that someone else has the same problem helps.
I will consider ear-plugs.
Just the ear with the hyperacusis uses the plug. I also try to sit near a wall in a booth or by what seems like a quieter table at a restaurant with my hyperacusis ear turned as much away from the loudness as possible. I also ask my partner to walk on my “good” side. It is nice to know I’m not the only one, either!
My ATN was caused by a rogue bone in my neck called Eagle syndrome….it caused teeth, head, neck pain and problems with my ears. Keep a diary to find out what helps you discomfort or makes your symptoms worse….this can help alot
BIG +1 regarding this suggestion.
Some medicos will take our verbal notification as hearsay, where having a documented diary can help in identifying triggers and showing patterns. Being documented it can no longer be classed as hearsay. It can also show the medicos that you are being proactive in your own care. Document everything from daily activity, medications, time of day of symptoms, diet, fluid intake, daytime temperatures etc etc anything you can think of that may vary your symptoms and their severity, document it all.
Merl from the Modsupport Team
I would like to share my experience with head and neck pain and TN. I have suffered with head and neck pain for about 25 years and with TN for about 15 years. I want to admit first that I joined this group thinking my pain was bad, but I quickly realized my pain was nothing compared to many of you. BUT HEAR ME OUT. I really hope I am able to help someone. I work at a school so I have summers off. This summer I planned to so something I had been wanting to do for some time. I made a plan to do a parasite and heavy metal detox and begin eating right - NO processed anything or refined sugar. I downloaded an app called Yuka and began scrutinizing EVERYTHING before buying it. If it had chemicals in it, I figured out how to make my own instead (soups, sauces, salad dressings, etc). I also suspected a magnesium deficiency (later confirmed by my doctor) and began taking magnesium l-threonate (the only one that crosses the blood-brain barrier), pomagranate seed oil, black seed oil, and tumeric. Within one month I no longer needed my blood pressure medication. Within two months I was able to get off of my Tegretol. I am not pain free, but it is greatly diminished and when I begin getting TN pain I take hypericum 30c (St john’s wort). Winter is typically my worst time for pain and so far I am doing ok. Like I said, not pain free, but so much more comfortable and feeling better without the meds. OH. Almost forgot, I also started drinking only distilled water, using only himalayan or celtic salt, and only natural toothpaste and shampoo/conditioner bars. These are small lifestyle changes you can make over time and I really hope some of you find at least a little relief. Blessings to you all.