The Patient’s Perspective
By Pamela Unverzart
The Facial Pain Research Foundation (FPRF) often receives emails from people around the globe who are suffering with agonizing facial pain. It pulls at the heart strings to read them, especially since most of the volunteers of The Foundation are TN patients themselves, either currently in some type of remission from different surgeries or in full-fledged, daily pain. It pulls at the heart strings because we know there is little we can do for these wonderful people except lend an ear in the moment of their need, to hold out an understanding hand, sometimes being able to assist in suggesting them toward a direction that may lead them to some type of relief.
In those instances, we usually explain that the FPRF’s mission is to find a cure for this dreadful disease. That is our goal, our every day mission…the reason we exist. But we can’t turn away from the need of those patients that have become so desperate that they reach out for our help, so when it’s advice on doctors or possible surgical or medication treatment being asked of us, we usually send them a person to contact within TNA-The Facial Pain Association. TNA-The Facial Pain Association is set up for helping guide the suffering patient through the courses of treatment, bringing further awareness to the needs of the patients.
Recently Ms Jillie Abbott, Chairman of TNA-UK, asked if we could share some of the stories she has been collecting from patients in her region that have found dead-ends in their travels for discovering pain relief. She felt they were quite poignant and clearly depict the need of continued research to find a cure. We would like to share a few of those stories with you.
First is a story from a woman having suffered now for 10 years. The following are her words, no editing in any way. You can feel the frustration in every word written. You can feel the lack of hope for her future. Read with a quiet heart…
“I suffer from what is probably the worst pain known to man. There have been times when I have seriously considered suicide because I know there is no cure. These times occurred when I have tried to change medication or when I have tried reducing the medication. The pain is truly unbearable and what makes it worse is that other people don't know much about Trigeminal Neuralgia.
The medication may control the pain but taking it in large quantities, as is often required, may induce serious possible side effects. Frequent blood tests are required and, as I have been on medication for at least 10 years, I wonder what unknown toll this is taking on my body. Further, taking such quantity of medication daily affects my ability to function normally; drowsiness, tiredness, and mental 'fogginess' are the norm. Of the drugs available, apart from Tegretol, who knows which of the various drugs on offer is the best? I am on a cocktail of Tegretol and Gabapentin and can't reduce the dosage of either without pain. I imagine fellow suffers are in the same plight.
The surgical options on offer do not guarantee a permanent cure. Many doctors (and dentists) know little about the condition or medications. I know that thousands of people in the UK are affected and vast numbers more worldwide. If the disease was terminal maybe it would get more attention. The fact remains that we are alive and face many years ahead of suffering. Pam E”
Another story comes from a caregiver, a wife who obviously very much loves her husband. We must remember that caregivers sometimes suffer even deeper wounds from this disease than we do as patients.
“ My husband has had Trigeminal Neuralgia for over four years and I know how this condition and the woefully inadequate available drug treatments impact on sufferers and their families.
This is a nightmare condition. TN is known as the suicide disease for a reason. I have seen my husband wracked with repeated agonising spasms of pain for hours on end, so exhausted with the agony he is barely coherent. His quality of life at these times is non-existent.
The idea that there is already a drug cure is very far from the truth. I have seen my husband on three different types of medication - carbamazepine, oxcarbazepine and pregabalin. None of them have fully controlled the pain and all of them have debilitating side effects. I shall talk about the impact of the side effects have on my husband’s life from the perspective of a partner.
I feel that I am gradually losing my husband to this condition. When he is in extreme pain he is unreachable and in survival mode. All I can do is offer a touch on his hand to let him know I'm there. All the drugs he has been prescribed have had debilitating side effects. He describes feeling like he's wading through treacle mentally and he has to fight the torpor these drugs produce in order to function in the workplace. This battle leaves him exhausted by the end of the day and he falls asleep as soon as he reaches home.
I have seen how his memory has been affected and he finds it difficult on occasions to retain new information. He is learning French and when he is on pregabalin he struggles badly to make progress. He is an articulate man and it is awful to watch him trying to remember common words. Cathy F”
Many of the stories have one common thread…they all are asking for something else to be done, pleading that a cure be found.
“As a sufferer from trigeminal neuralgia for nearly 30 years, I have used the drugs that are currently available and I can assure you that they are by no means truly effective and that they have some bad side effects. There are certain invasive surgical techniques for relieving the pain, but these are, I gather, neither very safe nor guaranteed to succeed. So more research is needed.
Having experienced the pain of trigeminal neuralgia I can only say that I would not wish it on my worst enemy. There is no quality of life for the sufferer during an attack, which can be of indeterminate duration. The fear and the depression that go with this inhuman pain are indescribable. Not for nothing is TN called "the suicide disease". Leela H”
Don’t just read and turn a blind eye or a cold heart to this issue. The Facial Pain Research Foundation is working day and night in order to fund the type of research that will find a CURE for this devastating disease. Help us spread awareness. Open the floodgates of knowledge. Push the need for monies for this type of funding hard and strong. Be an advocate for your own future pain free self. Help us help you in any way we can. Let’s stop the pain together…..forever!