Trigeminal neuralgia is like lightning! Often, there is no warning sign. It comes on suddenly like electrical nerve pain striking me in the side of my right eye or forehead. The pain hits me all at once – very high on the pain scale. Then it gradually calms down – lingering. Lingering much longer than I want. Sometimes it takes 10-15 minutes for that one strike to go away. Then there may be other strikes! When the trigeminal neuralgia (TN) takes my breath away as it strikes, I have to remember to breathe, otherwise the stiffness in my body and anxiety makes the pain that much worse. “Breathe, and don’t cry,” I tell myself. Touching aggravates the pain. So does the wind and people hugging and kissing me on my right side of my face. Everyone hugs me on my right side; so, I gently guide them towards the left. If they’re confused, I say that I have severe nerve pain on the right side of my face that is made worse by touching. If you look at the picture to the left, I have the kind of trigeminal neuralgia that is in all three sections of my face – everywhere you see a branch of the nerve. That’s my trigeminal neuralgia; it entered my life in October 2000, weeks before my 30th birthday.
(This post focuses on how TN feels; for example – What would it be like if you were to suddenly wake up tomorrow with this condition? There will be other posts in this series in which I will discuss my treatments and other aspects of trigeminal neuralgia.)
In my first post on Optic Neuritis, I mentioned that trigeminal neuralgia (TN) was the second symptom, (a diagnosis apart from MS), the neurologists used as part of my diagnosis of multiple sclerosis (MS). Trigeminal neuralgia is a nerve disorder in which only 5% of people with TN have MS, and 2% of people with MS have TN. (Is this confusing? Essentially, not many people with MS have TN, and not many people with TN have MS. They are separate disorders/diseases.) TN affects the trigeminal nerve [see picture above]. It can affect one or more of the three regions: 1) Mouth, lips and jawline; 2) cheek and bottom-part of the nose; and 3) top of nose, eye and forehead. It usually occurs on one side of the face – on my right side for me. However, there are cases when it develops on both sides of the face (Even I find this difficult to imagine! At least I can sleep on my back and left side; but if I had TN on both sides, if I turned in my sleep the pain would wake me all the time!!) There are triggers that cause the TN pain: touching, smiling, laughing, eating, brushing teeth, shaving – basically anything that triggers all those little nerves in one side of the face. For the first 10 years I had trigeminal neuralgia, my face was so sensitive – even anxiety would set off an attack. During the summer, when it would get hot and humid, my multiple sclerosis would trigger my TN symptoms. In my body, it is like a vicious circle between the MS and TN.
How It All Started…
One afternoon, in early October 2000, I was at my job when a jolt of electric-like pain in the side of my right eye – almost as if it was in my eye coming from within my head. It caught my breath! Then I started to breathe again, rapidly and wondering what on earth had happened. Is this what a migraine feels like – after all my mother and brother have migraines. After a few moments, the pain started to dissipate. As I started to relax and think that maybe it was just a fluke, the same sudden flash of pain attacked along my cheekbone towards my hairline. This time I cried out – I couldn’t control myself because the pain was intolerable! I suddenly became so scared because I had no idea what was happening to me. Another lit into my forehead, but not quite as bad this time. First optic neuritis and now this unbelievable pain? I started breathing so fast that I became light-headed and grabbed for my desk chair. My co-workers ran into my office and started throwing questions at me: “What’s wrong?” “Are you ok?” What can I do?” “Do you want me to call someone?” All I wanted was to breathe and for the pain to go away. After what seemed like half an hour (but was probably only 6-7 minutes), the pain started to descend and my breathing slowed. But I noticed again, as with the optic neuritis, that the office lights were starting to hurt my eyes. I saw my purse under my desk and reached for my sunglasses. When I put them on my face, that same pain sparked and tore into my right eye and cheek. I threw the glasses to the ground as as if they were on fire. Tears started streaming from my eyes. As the tears came, so did some more pain. It was a bit less, but still almost unbearable. The pain was like it was searing through my right side of my face – like a zap!
Someone suggested that my neurologist should be called. A co-worker, who I had become friends with, offered to call the neurologist but I knew I would have to talk with him because how could anyone explain to him what I was feeling?
How Could I Say What Trigeminal Neuralgia Felt Like?
(The following poem is from Suzanne Grenell’s edited book End The Pain)
This poem and the image on the right are the best ways for me to tell and show you what trigeminal neuralgia has felt like to me for so long.
TN AttackIt wakes you[…] Like a bolt of lightning You feel like your head is splitting It is so frightening It zaps you again and again and again Electrical shocks Over and over and over You wonder how you can stop it You move your head From [the right] side to [the left] Relief at last For only a few seconds Only to have it start Again You call for help You need water and medications They are hard to swallow But you manage to keep them down Then you lie still As still as can be Waiting for the medication to take effect Waiting and waiting One minute, two minutes, three minutes Four You don’t dare move for fear of it Starting Over and over again and again When will it stop? Will it stop? Finally Your faith is restored You fall asleep for a couple of hours Or more Then it starts all over again. You want to cry, you cannot cry Tears add to the pain It hurts so much, you wonder Will I be normal again? Without the medical profession You cannot survive If you had to live with the pain like this You question being alive. by Rosanne Borgfjord Winnipeg, Manitoba, Canada
Also, see Carol Levy’s blog: The Pained Life. Carol has had trigeminal neuralgia and chronic pain for 30 years.
Do you have any poems (or have written any poems) and/or quotes that describe any bends in your life’s road – anything that you were or are currently dealing with that pushed your life into a different direction (a push that was beyond your control)? How do you describe how this bend has impacted your life?
I would love to hear your own stories, and any comments, and/or questions you may have. Please do not hesitate to contact me on the CONTACT page, or CONNECT with me on Twitter, LIKE me on Facebook, FIND me on LinkedIn, and/or ADD me on Google+.
Being able to share with you about how my trigeminal neuralgia feels has been a valuable experience for me. Thank you for your open eyes and ears. Please remember that my eyes and ears are open for you.