No end to trigeminal neuralgia

b61ee3bf0e7ee52d0332a9f29cdf1143Oh dear.

It was indeed that time again.

“When I’m good, I’m really good, but when I’m bad, I’m even better,” Mae West once said. Now I don’t know much about Mae West, but I see her as an all-out cowgirl, slinging guns left, right and centre. In that respect, Mae, girl power, and let us all be great when we’re good, and even worse when we’re bad!

While I’m sitting here, typing fine long sentences, I’m almost giddy of pain, and the left side of my face feels like it’s being pulled way west in the direction of the Atlantic Ocean. My left eye feel like closing up shop for a week or two, and my brain is slowly being stir-fried. Yes, that is what trigeminal neuralgia feels like.

It’s not always like this though, as trigeminal pain can translate in different ways. It can feel like the ice bucket challenge, an earthquake, and monsoons as well as just… Mae West’s “when I’m bad, I’m even better.”

Silly girl, of course (me, not Mae West). I’m an idiot. Here I am, telling people to take care of themselves, telling them to take some time off from their MS as it’ll be there long enough, but do I listen to myself?


Oh no.

I keep on writing.


I cook over a hot stove, meaning my face gets even more of trigeminal nonsense.

(Well… one’s got to eat, right?)

I keep on staying up late.

(Well, again…not because I love to, but because pain keeps me awake)

I wake up, not because of a hot beau kicking my legs, but because pain wakes me up. Again.

I ramble on friends’ Facebook pages.

I call my mum in the middle of the night – by mistake, yes – because I half-asleep decided it would be good to check my emails and accidentally swiped from my mails to my recent phone calls.

You get the idea.

Chronic pain is no fun.

Not being able to fall asleep because of chronic pain, is no fun.

Finally falling asleep after being unable to sleep because chronic pain, is no fun.

Waking up again after finally falling asleep, after being unable to fall asleep because chronic pain, is no fun.

Finally sleeping again after waking up, after falling asleep, after being unable to fall asleep because chronic pain, is no fun.

Waking up again, after all that, because…

The bathroom calls me!

In other words, when I’m good, I’m really good, but when I’m bad, I’m even better.

© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2014. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.

16 thoughts on “No end to trigeminal neuralgia

  1. Sigh I’m sitting here reading this because I’m awake again and unable to go to sleep, because of what? The pain. I’m glad my restless night led me here. :) I enjoyed this.

    1. So sorry to hear, Isabella! I know all to well, so I’m sending you many well-wishes your way for a good night’s sleep (also sent you a FB request just now)

  2. Oh, Billie. I do feel for you. My Mother had M.S., and even the word ‘trigeminal’ makes me cringe. My Mom also had a very rare blood clotting disorder (only 2 others known to have it). So, when her trigeminal nerve pain became so severe, she decided to have the nerve severed. The Doc. had Lots of experience with this surgery, but it seems that the info. about the blood disorder was lost in the shuffle. (it Was in the charts, I don’t know if it was discussed again pre surgery). We were all stunned that she suddenly passed away the next day in the hospital, presumably due to internal bleeding. It will be 15 years ago, this October. I guess my focus w/ this post is that she would have just Loved you, Billie!! You are both an incredible example of strength with pain that most people can’t even conceive of, and I choose to focus on that strength that the rest of us can learn from people like you. Thanks so much for sharing your journey with us!

    Have you heard of Doctor Terry Wahls before? Her book came out in March, & it is a Must read: ‘The Wahls Protocol: How I Beat Progressive MS Using Paleo Principles and Functional Medicine’ by Terry Wahls M.D. and Eve Adamson. (Available on Amazon). I So hope you and anyone with MS will read it. I know, everyone hopes for a cure, but if this protocol can help at all with symptoms/ functionality, it is well worth a try. My Husband & I both follow Paleo eating/ principals, & it has reversed his type 2 diabetes, turned around his bad blood markers (he was a heart attack waiting to happen) + he lost 40 lbs. as a bonus. The blood test results don’t lie, so we have our own proof that a Paleo diet & lifestyle is a foundation for excellent health. I wish you All the best, Billie!

    1. Thank you so much for your kind words, Allison, and I’m so sorry you lost your mum this way. It’s just inconceivable because you put your faith (literally) in their hands, and some don’t put time in reading patient charts. I hope you got at least an apology and a reason why it went so wrong.

      Funny you should say this about Dr Wahls. I have her first book and have been reading about her paleo diet plan all week. I got annoyed because she keeps on saying that she “is cured from multiple sclerosis” when in fact there is no proof that she truly is (no MRI scan and spinal tap results that show that her MS is really reversed). What I do believe is that certain symptoms disappear with a healthy diet of organic food. Canned, processed food should be banned. I’ve had a healthy diet all my life as eating veg, fruit and fish was what my mum put on the table, whether I liked it or not. It should be common sense that a healthy lifestyle with decent food and exercise help, I am just not sure that it can cure MS as Dr Wahls says.

      Anyway, this morning I started a detox plan of one tall cup of fresh lemon juice and I will eat all the fruit and veg I bought yesterday (don’t want to throw it out :). When I do my shopping next week, I’ll look for organic food only and start Dr Wahls protocol. The only problem is that I don’t eat meat, only fish and chicken, so I will have to make an effort :D

        1. My mum would say the same, as she knows doing so if often very hard to do.

          I can imagine your mum is never more than a word away. My gran passed away 20+ years ago, but my mum and I still talk about her expressions and sayings quite regularly. She had a very funny way of saying things and it’s sad I can’t remember half of them anymore.

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