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Chronic Conditions/Trigeminal Neuralgia

Updated on January 30, 2014

Facial Pain

Trigeminal Neuralgia is a reoccurring facial condition that has been called the greatest chronic pain known to man. The information that I will write about comes from my own personal experience with my autistic daughter who has this conditon and lots of reading and gleaning from public websites and book research. Trigeminal Neuralgia is also referred to as "Tic Douloureux" because the pain is so great that it causes the person's body to tic or move involuntarily, even whincing or crying out in pain. It causes extreme, sporadic, sudden burning/searing shock like face pain that can last a few seconds, up to 2 or 3 minutes per episode. A lot of times the attack can occur in rapid successions and the physical pain can be mentally incapacitating. A person experiencing an attack can have seizures, as my daughter experienced from time to time and vomiting and fainting can also occur. My daughter also has urinated on herself because of the debilatating pain. Sometimes this pain can continue off and on for more than an hour and there is no warning of an oncoming attack, the pain just hits. Something as natural as a smile can cause an attack, a breeze touching the face, chewing, combing hair, extracurricular activities, etc. Trigeminal Neuralgia is a chronic pain condition that affects the trigeminal or, 5th cranial nerve that is one of the largest nerves in the head. The trigeminal nerve is one of 12 pairs of cranial nerves that come together at the base of the brain. This nerve has 3 branches that carry or conduct sensations from the upper, middle and lower parts of the face as well as the oral cavity to the brain. The upper or (opthalmic) branch supplies sensation to most of the scalp, forehead and front of the head. The middle(maxillary)branch passes through the cheek, upper jaw, top lip, teeth and gums, also to the side of the nose. The lower(mandibular)branch passes through the lower jaw, teeth gums and bottom lip. More than one nerve can be affected at one time by this disorder. I used to think that my daughter had dental issues and that was why she was experiencing so much pain. I began taking her to dentists and none of them saw a problem that would cause such great pain. I was then instructed by her primary doctor to take her to see a neuralogist. Before I took her, I got on the internet and just did research on facial and head pain according to my daughter's symptoms and thats how I found out about trigeminal neuralgia. Her neurologist confirmed it through numerous specific tests. My daughter has had 3 cranial rhizotomys to try and ease the pain. A rhizotomy is a procedure where select nerve fibers are destroyed to block pain. The most common is microvascular decompression. A small opening is made behind the ear, while viewing the nerve through a microscope the surgeon moves the vessels that are compressing the nerve and places a soft cushion between the nerve and vessels. This did not work for her. The second surgery which involves cutting away the nerve was performed during microvascular decompression and this worked a little better but the pain was still great and frequent. The last surgery involved cutting away branches of the trigeminal nerve in her face which can lead to some numbness in areas of the face that is permanant. My daughter has some spots on her face that are permanantly without feeling but that is a small concern based on the fact that she is doing somewhat better and there are more times now than in the past that she does not have pain. The nerves can grow back and the pain can start again, in many instances the pain occurrences are continuous with no break inbetween. T1 is what my daughter has where there can be months with no pain and then all of a sudden it returns. T2 as I stated earlier, is when the pain is continuous. My daughter went through three cranial surgeries and having part of her hair shaved, coupled with immense pain like a real trooper! She takes medication, including morphine for pain and a seizure medication that works to keep the nerve calm which helps to decrease pain. She is taking one day at a time and she makes herself have a good day even when she's not.. She is learning how to cope more and more each day. (SN-This condition mostly affects elderly adults. My daughter has been going through this pain since the age of 6 years old but I had no clue as to what it was. She was not diagnosed until the age of 11. There is help! Research can be done online and seeing a neurologist is a great start. There are many options to treat this conditon. I hope this helps someone who may be experiencing this type of pain or know someone who is.)

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    • msburgman profile image

      msburgman 6 years ago from Williston, Florida

      Thank you for sharing your experiences and not giving up on finding an answer for your daughter's pain.I suffer from a chronic pain condition in my back that can be set off by seemingly unrelated actions, so I have some idea of how it can throw you off. As you have read my hub you know that I have an autistic child as well. We have been blessed that he has not manifested any chronic medical problems. Take Care!

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      ladyt11 6 years ago

      Thank you for your kind comment. I love your hubs on autism because they are very informative. Thank you for stopping by my page and you take care as well.

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