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A woman squinting in pain with the trigeminal neuralgia nerve highlighted on her cheek. There is a call out showing a tooth in pain, an ear with drops, and a brain with light radiating to one spot.

Dealing with the Never-Ending Unknowns of MS is Such a Pain for Me - Literally

I’d be a liar if I said I didn’t think about ending it all a little over 6 years ago. I was so scared and anxious. I also was exhausted and completely drugged up. I could barely function throughout the day. Between the sleepless nights, relentless zings, and intense pain, I felt so hopeless and helpless.

I wondered if my multiple sclerosis-related trigeminal neuralgia misery was ever going to end.

Piercing pain in my jaw

It felt as though I was rapidly chewing on tinfoil as though it was gum anytime the back teeth on my right side touched. Zing! Zing! Zing! Shockwaves relentlessly pierced my jaw in the middle of almost every night. All I could do was cry and scream, and all my husband, Dan, could do was hold me. Most husbands would offer comforting words like, “It’s going to be OK,” but he knew better because he knows how heartless MS is.

I couldn’t eat or brush my teeth

Talking and smiling most always were painful. How exactly was I supposed to go on with my life? Those fears were so real and all-consuming.

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Simple online searches made it sound as though this was not a common symptom of MS, but communications with other people throughout the MS community made it seem that it’s not such an uncommon reality. For nearly 3 years of pain and numerous doctor visits, no medication eased my trigeminal neuralgia terror. In a big move, I underwent gamma-knife radiosurgery.

Gamma-knife surgery for my trigeminal neuralgia

It has been almost 6 years since my successful gamma-knife surgery to relieve my excruciating trigeminal neuralgia pain. I had surgery on July 9, 2014, and for the most part, I’ve lived a largely pain-free life.

Sure, I am still fearful that my pain may come back, but I try not to let that fear slow me down. Slow us down. Dan, who also has MS, and I always try to move forward and not let our MS diagnoses hold us back.

Is my trigeminal neuralgia back?

At least that was true until this combination jaw/earache pain started bothering me about 3 weeks ago. Between an intensely sharp, stabbing pain in my right ear and a constant, nagging jaw soreness, I was fairly convinced that my trigeminal neuralgia was back.

Considering reaching out to my neurologist

Maybe my MS was flaring up? Especially because, like many other Americans this year, I’ve been feeling almost constant stress and fatigue. But this felt different. I wondered if it was time to call my neurologist? Ask for some help. Maybe get a boost from a course of Solu-medrol?

No, Jen, slow down. Take a breath, pause. After all, you know she’ll ask you if you called your primary doctor. Stop and take the time to rule out any other problems before you call. Don’t rush to blame your MS.

Visiting my primary doctor

So, that’s exactly what I did. I visited my primary doctor, who discovered an INCREDIBLY plugged right ear. He tried to flush it out. No success. So he scheduled an appointment for me with an ENT.

I was hopeful that this ear, nose, throat specialist would discover an ear infection or something easily treatable, but please, no MS exacerbation or reoccurrence of trigeminal neuralgia. It seemed like a simple request. But after spending 23 years with multiple sclerosis, I know the disease presents no such thing.

No success flushing out my plugged right ear

At our appointment, he also tried to flush my ear, and then even kind of vacuumed it. He also was unsuccessful, and sent me on my way. “Come back in a few weeks. Maybe we’ll have better luck if you keep putting drops in your ear.”

What? That’s it? I didn’t get the answers I was searching for, but I also didn’t get the answer I was fearing.

Hoping for the best

I left and, being a compliant patient, I’ve followed the doctor’s orders. My pain has lessened, and I will just sit tight being frustrated with my MS, but forever grateful because I know from past trigeminal neuralgia experiences it could be so much worse.

Don’t you hate that? But I guess that is life with this frustrating chronic illness. Just appreciate and celebrate the good (aka bearable) days. Right?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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