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Speaking Out as a Caregiver

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Laurie’s Story

In life we take so much for granted. Most of us go through our day without a second thought to simple things such as getting up out of bed, getting dressed and looking forward to the day.

In 2005 I had an eye opener. I am speaking to you as a mother of a beautiful daughter. A girl who at the age of 25 was diagnosed with trigeminal neuralgia. I am speaking to you as a registered nurse who prior to my daughter’s diagnosis had no understanding of what this debilitating disease was. Needless to say, not any more.

It started on a snowy night in February with my daughter calling me. She was telling me about this “awful” pain she was feeling in her face. She described it as “knifelike”. I can still hear the words, “Mom make it go away. Help me. I am going to kill myself.”  This statement defines the disease. I now know it is also referred to as the “suicide disease”.

So it began. We started with the neurologist, who honestly really did not understand. He knew she was having some sort of “face pain”. After countless MRI’s and spinal taps, evoked potential tests, a referral was made to a neurosurgeon. Driving to Mass General, the big intimidating hospital and not knowing what to expect was a feeling of despair. I was searching for an answer for someone to help my daughter. After another MRI, the surgeon explained to us that she had trigeminal neuralgia. These are words that as a registered nurse you never want to hear, especially about your daughter. From that very moment in time, the world stopped.  He explained that after a series of medications that she had already tried her only chance at alleviating any of this pain was brain surgery. He suggested a microvascular decompression. (MVD)

It is not easy to write the emotions that have gone along with this new road we now travel. My daughter has had two MVD’s and a Radio Frequency Rhizotomy. When writing this, it seems so clinical and “matter of fact”. It is not. Between trying to balance her new life as a person who suffers from TN and still live the life she once knew, it is a constant struggle. My new life as a mother of someone who suffers from TN is also a road that not a lot of women find themselves on. It changes your whole perspective. The carefree, spontaneous life she once knew is gone. “What doesn’t kill you makes you stronger” and no one is stronger than her. She works at maintaining happiness in her life everyday despite being in constant pain and she never gives up.

As my daughter went through her twenties, she never got to experience what life might be like for a beautiful young woman without this affliction. Most people get out of bed and hop in the shower, turn the water on and go. Not her. She has to worry about the shower water hitting her face and stimulating pain. She sleeps a certain way to avoid too much contact with her face. I’ve seen my daughter go from being an affectionate, loving individual to someone who is afraid of hugging because of the pain it might create. If she can keep her pain level at a 4 on a scale of 1 to 10, she is having a good day.

She lives this life. Not a day goes by since February of 2005 where she has not had pain. Mornings are worse. I see her not being able to speak because she has difficulty moving her mouth. She hides her pain as best she can, but a mother always knows. I live this life as I stand beside her. Nothing is worse than being a mother and not being able to help relieve your child’s pain. No matter what age the child. As a registered nurse this is even more difficult to understand. I have been helping people for almost 40 years and yet I can’t help her. This diagnosis is now my lifetime challenge to help providers and caretakers understand how powerless one is when they have trigeminal neuralgia.

Trigeminal neuralgia inflicts physical pain on the person or individual but it is a family illness.  I have seen it destroy family, friendships, jobs, marriage and so much more. My highest admiration and respect as a mother and a professional is given to the young people who have trigeminal neuralgia. The accomplishments that they achieve on a daily basis are far beyond what most can do in a lifetime.

 –Laurie Tautfest

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