Living with Trigeminal Neuralgia: Liz’s Story

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Guest post: What It’s like Living with Trigeminal Neuralgia by Liz

I live with a facial pain condition called trigeminal neuralgia. I have other pain issues too including a back problem which resulted in me having to take early retirement when I was twenty-eight. My back pain is extremely debilitating, but trigeminal neuralgia is just as debilitating, if not more so at times.

I lived with facial pain for over twenty years, but it was undiagnosed. It had been mistaken for toothache, migraines, sinus pain and very often ignored by the medical profession. About ten years ago, a new dentist recognised it as nerve pain and I was later diagnosed with trigeminal neuralgia by a hospital consultant.

What is Trigeminal Neuralgia?

Trigeminal neuralgia occurs when the trigeminal nerve sends pain signals to the brain. There may be a reason such as pressure on the nerve from a blood vessel, a tumour or trauma to the face or head. However, very often, the cause is unknown. It can be horrific pain. Some people’s pain feels like a bolt of lightning or electric shock going through their face. Others have constant pain which can ache, throb, burn, sting or stab. Many people have both types. Normally just one side of the face is affected, but some people have pain on both sides.

My Pain

There is no known reason for my facial pain. I have constant pain with occasional shocks on the right side of my face. The pain is always there, but the severity changes. On ‘good’ days, it is background pain. On bad days, it can be severe, off the charts type of pain. However, most of the time, the level is somewhere in between. I also get some pain in my left side but, thankfully, that’s not constant.

I’ve often said that it feels as though I have been kicked in the face by a horse. My face aches constantly. It often burns so much that it turns crimson red. I get sharp, stabbing pain just out of the blue. It can also be painful to touch.

The worst part for me is the pain in my teeth. It often feels as if a sharp knife is wedged between some of them, slicing through my cheek or as if someone is trying to extract my teeth with pliers. I sometimes feel a sensation like sizzling electricity running along each of my teeth. They feel extremely sensitive and I have constant toothache type pain. They throb as though I need emergency dental treatment, but I don’t. I see my dentist regularly and he assures me that they are perfectly healthy. People often consider having healthy teeth removed in the hope that their pain will go. However, that doesn’t work. The teeth go, but the pain stays.

How Trigeminal Neuralgia Affects My Life

Normal daily activities which most people take for granted are difficult for me.

Eating and drinking can be extremely painful at times. Biting, chewing or eating crunchy food can worsen the pain. Eating or drinking anything too hot or too cold will do likewise.

I’m almost ashamed to say it, but some days, I don’t clean my teeth. If my pain is already high, I refuse to make it worse by putting a toothbrush inside my mouth. On better days, I clean them, but very often doing so means my better day changes to a bad day. But, I can’t avoid cleaning my teeth every day. Although they are painful, I want to keep them.

Washing my face and my hair are also painful tasks. I let my hair dry naturally because blow-drying and styling will always increase my pain. I never wear makeup because it would be too painful to put on and take off.

Talking will normally cause my pain to increase. When my pain is bad, I don’t talk much and prefer to use Facebook messenger rather than the telephone. Even smiling and laughing can cause my pain to worsen.

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I have to try to control my stress levels as high stress can also increase my pain. Some of my most severe pain has come about after a period of stress.

Even things which are outwith my control can affect my trigeminal neuralgia. The weather can be a huge trigger. The cold, a breeze, rain, snow or a thunderstorm always trigger my pain. In the winter, I almost become a hermit.

After an activity, my pain can worsen straight away, but very often, it doesn’t flare up until the next day. Although many things can either trigger or exacerbate my pain, sometimes it just flares up for no reason whatsoever.

It Doesn’t Just Affect My Life

My husband is my greatest ally in dealing with my pain. He makes soups and other soft, delicious food and encourages me to eat on the really painful days. He is a constant support and does his best to keep me smiling and laughing. Doing so can trigger my pain, but the therapeutic benefits are worth it. Laughter is always good for the soul.

Medication and Coping Techniques

Standard pain medication doesn’t normally help trigeminal neuralgia. Since my diagnosis, I’ve been prescribed various anticonvulsants and antidepressants to treat the pain. Some have helped more than others, but they’ve all come with side effects, some of which are very difficult to live with. I’ve had memory problems, extreme fatigue, dizziness, low blood pressure and balance issues. I’ve had to weigh up what’s more important – pain control, staying upright or remembering my name. It’s not always a simple choice.

Over the years, I’ve also learned many coping techniques such as breathing and relaxation exercises. My pain never goes away, but using those techniques alongside my medication, I have managed to get through some really bad days.

There is research being done, so my hope is that scientists will find better treatments, meaning that trigeminal neuralgia sufferers lives can become easier. I live in hope. We all need hope, don’t we?

Where to Find Liz Online

Blog: https://despitepain.com
Twitter: https://twitter.com/DespitePainBlog
Facebook: https://www.facebook.com/despitepainpage

If you loved this post (and I’m SURE you did, considering you’re reading this), you NEED to check out my eBook 10 Things You Need to Know About Living with Chronic Illness!

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7 Replies to “Living with Trigeminal Neuralgia: Liz’s Story”

  1. I was just diagnosed with TN. My doctor thought it was originally a TMJ flare up or dental abscess. After going to the ER and having a CT scan I received this diagnosis. I was relieved at first to know there was actually something diagnosable going on, but the more I researched it and the worse my pain becomes I’m heartbroken. I already have enough on my plate health-wise with migraines, multiple herniated discs, degenerative disc disease, lactose intolerance, and IBS (to name a few). The pain from this though 1000 times worse than any of the other issues. It doesnt just affect my face, but my jaw, scalp, teeth, and lips too. I cant have anything touch my face or I’m in tears. I can understand why this is referred to as the suicide disease. There isn’t any decent treatment options and I’m realizing this only a few days in.

  2. Great post – I’ve only been hurting for 2 weeks and have been diagnosed with this. I have had some really bad bouts and some days where it is my teeth that is horrible. I can’t even imagine living with it for 20 years, but I guess it is one day at a time and pray someone somewhere finds a cure.

  3. I have had TN for over 20 years and hit the point where I can have no more surgeries for treatment. So, medication only for my pain management. I am on disability for my TN. Everything, everything here describes life for those of us who have this disease. So thank you for bringing to light what life can be like for us! More “voices” out there helps people feel less alone and builds awareness of our rare disease. You’re awesome!

  4. Oh Ami, I’m sorry about your husband. There are lots of medications and some treatments which could help more. I hope he can be persuaded to see his doctor. I’m glad my post and blog are helping you to understand.

  5. Thank you for sharing, Liz. I’m still struggling to persuade my partner to rebook a doctors appointment (he forgot about it) and will not help himself. Pain relief does not help him, he drinks until he is numb then he can no longer feel the pain, which worries me. Reading your post here, and on your blog have helped massively in understanding TN more so thank you 💚

  6. Thanks for sharing my story about trigeminal neuralgia, Georgina.

    1. Thank you for writing it!

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