The Mouth That Roared and Roared

The Mouth That Roared and Roared
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Strap in: This is not going to be a fun one.

Even less so for me — though I’m writing this under the sort of drug load that Jack Kerouac and Hunter S. Thompson would have been proud of! Not for fun (or dependence!) but for survival.

“Since TN is a progressive disorder that often becomes resistant to medication over time, individuals often seek surgical treatment.”

I first wrote about trigeminal neuralgia (TN) on July 21, 2017. Unfortunately, like multiple sclerosis (MS), it’s also a progressive disease. In those with MS, TN can be caused by a deterioration of the trigeminal nerve’s myelin sheath. Ah, that ol’ myelin thang …

My wife gently shook me awake at 10:30 a.m. this morning. To give you a timeline, I’m writing this very paragraph at 2 p.m.!

The carers were coming in 30 minutes.

A TN attack erupted. For those of you who are lucky enough not to have experienced it, think Vesuvius and Krakatoa exploding in your mouth at the same time as the thunder god Thor throwing in lightning bolts. Just to make sure you’re really paying attention.

Normally I take two 150-milligram tablets of (Trileptal) oxcarbazepine to quell this disaster in my mouth. Nothing happened, so two more followed, plus two 300-mg tablets of gabapentin, which I was due to take anyway for my neuropathic right arm. Gabapentin helps with TN.

However, this attack lasted some 30 minutes!

It’s quite possible I’m moving from TN1 to TN2. Here comes the medical bit:

“The typical or ‘classic’ form of the disorder (called ‘Type 1’ or TN1) causes extreme, sporadic, sudden burning or shock-like facial pain that lasts anywhere from a few seconds to as long as two minutes per episode. These attacks can occur in quick succession, in volleys lasting as long as two hours. The ‘atypical’ form of the disorder (called ‘Type 2’ or TN2), is characterized by constant aching, burning, stabbing pain of somewhat lower intensity than Type 1. Both forms of pain may occur in the same person, sometimes at the same time. The intensity of pain can be physically and mentally incapacitating.”

As my myelin is being eroded, drugs may eventually wear out. Then surgery on the nerves themselves may help, but even this isn’t always successful!

At the specialist MS exercise gym I attended before you-know-what, I met a woman who used their TENS equipment to try to alleviate her pain.

Drugs had failed her. I didn’t get the chance to ask about surgery. I could see how hard it was for her to speak. It was wrong for me to keep asking her questions for my own benefit.

So no jokes this week, sorry.

It’s been seven hours since my attack.

Never had one this bad before.

My very own Ragnarok!

***

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

In the ‘80s, John created the first regular column about the burgeoning London stand-up scene. In 1990 he wrote a book about its effect on the Edinburgh Festival: “Comics: A Decade of Comedy at the Assembly Rooms.” That year he also devised and ran a live topical stand-up team show at The London Comedy Store, The Edge. (It was destroyed in 2020!) In 2009 John was diagnosed with RRMS, which cut short his main job as a TV casting director for “Black Books,” “My Family,” et al. Now, John writes “Fall Down Get Up Again,” an irreverent journey with MS, and also serves as MS News Today Forums co-moderator.
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In the ‘80s, John created the first regular column about the burgeoning London stand-up scene. In 1990 he wrote a book about its effect on the Edinburgh Festival: “Comics: A Decade of Comedy at the Assembly Rooms.” That year he also devised and ran a live topical stand-up team show at The London Comedy Store, The Edge. (It was destroyed in 2020!) In 2009 John was diagnosed with RRMS, which cut short his main job as a TV casting director for “Black Books,” “My Family,” et al. Now, John writes “Fall Down Get Up Again,” an irreverent journey with MS, and also serves as MS News Today Forums co-moderator.
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10 comments

  1. Kristin Hardy says:

    My sister who has RRMS for years had bilateral type2 trigeminal neuralgia. After 16 years of agony, she finally got the gamma knife procedure on both sides. It was a major success. She characterizes it as life-changing. You can also read a column by Jen DiGmann on the topic. Please check into it.

  2. Gale Langseth Vester says:

    Myelin, oh, my myelin. Would that I could guess at what song that would scan best as! But, yes, this is beyond torture.

    ‘My very own Ragnarok!‘

    Hope that it doesn’t return! Okay, not that Ragnarok does, but…

  3. Leanne Broughton says:

    OMG! I feel for you. I also suffer with TN. I had a rhizotomy 2011 and 2012 (relief – pain free). Pain came back to mandibullar part of nerve in 2018. Used to be in maxillary part of nerve. Take gabapentin. Hate the stoned feeling the drug gives me. I have trouble walking/standing but TN is the most difficult part of MS. I feel your pain.

  4. Wendy Hovey says:

    Don’t have MS or TN but my dad has MS. I read your column faithfully and appreciate your deep candor. Humor is fine when you can find it; straight on descriptions of your challenges are treasured even when you can’t.

  5. Peggy says:

    OMG! I have experienced the TN attacks myself and thankfully the drugs you’ve named are working. The wonderful MS Dr i have also injected Botox into my jawline (on his own dime) both sides and that helped! I now take 2 oxcarbapzine morning and night. Plus 1 Gabapentin at night. Have too, if don’t Zumues attack !!! Only problem is the Gabapentin will cause swelling of feet…which have propped up at this time…but the relief for TN is worth that. Might be part of yours swelling John

  6. Hattie says:

    Has anyone tried acyclovir?

    I get frrequent cold sores and found that the 5 day dose my GP used to give me reduced my TN symptoms. So now I take it daily and the TN is still noticable but bearable. Also when I get flares I eat more antiviral foods and take extra B12.
    Some geranium oil (mixed with a carrier oil) helps to calm my face at night if it’s playing up.
    Hope this helps. Been to the edge with this and these have been amazingly helpful.

    Hattie

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