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New Diagnosis: Trigeminal Neuralgia or Tic Douloureux

20 Jun

Trigeminal Neuralgia

I am writing this after suffering from one of the worst pains in the world for nearly 3 days straight. (See McGill Pain Scale Photo Below)

I remember growing up as a child hearing that my grandmother had tic douloureux and never really understood what it was. I remember my grandmother also tried to take her life a few times from being in so much pain and suffering. She had numerous surgeries that only made her worse and she had nerves severed in her face leaving half her face with no feeling. She passed away many years ago and before I was old enough to really get to spend time with her getting to know who she was.

Fast forward many years later and I now know first hand what tic douloureux is! My poor grandma had to suffer from this all those years?! I would say this was easily my top 3 worst pains ever and I’ve had at least 5 of the worst pains in the world on the scale which make broken bones look like child’s play. Pain in the 45-50 range on the McGill scale. My CRPS/RSD is the worst, Trigeminal Neuralgia, testicular torsion, Kidney stones … are my other top followed by back pains and severe chronic pain from illness.

The Night it Happened

It started I would say 4 days prior to the “non stop pain”. I’ve always had sensitive teeth but something was worse in my teeth and I felt like I had a Charlie horse under my chin. It was very sore. I started feeling a slight pain behind my eye in the eye socket. It slowly crept down my face each day to my upper jaw. 3 days ago I was watching tv around 6PM when I noticed the pain went from dull, uncomfortable pain to a sharp, stabbing pain. Then it started burning as if each nerve ending was going crazy. Having CRPS I know all about nerves and the pains they cause. I started to get scared something was wrong.

I went to bed and the pain increased. I’m pretty tolerant to pain but on my scale this was about a 7 which might be a 10 for most. I can handle a 7 as I’ve dealt with severe chronic pain most of my life. But then the feeling moved down my face to my upper jaw and cheek which started to feel like I was punched in the face. Then it slowly moved into my teeth and deep into my jaw bone. This is on my right side only by the way as it usually occurs on one side of the face. It started to hurt so bad I was grunting laying in bed and my teeth started to literally feel like they were going to explode. My cheek bone started to feel more like it was cracked open or hit with a sledge hammer, I’m not exaggerating it’s that bad!

As the night went on the pain went up to a 12 on my pain scale which to me is crying, screaming in pain, pain is so bad you are nearly passing out from the pain, tremors, can’t help yourself and you lose all control of anything else but just feel pain. I don’t think pain could get any worse than this because I would have passed out and not felt it. I sat up in bed crying and contemplating waking my parents so they could take me to the hospital. As you know I’ve had no help or any luck going to the hospital so I avoid it when I can and I have nearly every Med they have here at home. Saline is the only reason I go. The pain was so bad I couldn’t think, I just cliched my sheets rolling around trying not to scream and wake my parents and little niece.

I drank my water and I noticed that water helped cool the nerves and the pain lowered to maybe a 9 after each sip of water I had to hold in my mouth. Then the pain would go back up within 2 minutes of fresh water to a 12 (again the highest I think pain can get before passing out). My upper jaw bone, teeth, tongue, under my tongue, cheek, eye socket, chin, lower jaw were all in so much pain each part felt like I had anything from a hook in my mouth, teeth being drilled with no novocaine, I felt like I had facial surgery without any anesthetic or lidocaine, novocaine …. it was horrible. It’s giving me flashbacks now. It is pure torture and evil.

I tried ice packs and heat packs which only made it worse. I tried cold bottle water which didn’t work but semi cold to room temperature water was the only thing that helped. At this time I had taken my nightly 75mg of morphine, 40mg of Norco, Benadryl and Ibuprofen. The pain meds didn’t even touch the pain (meaning it didn’t lower the pain scale by even one point). That’s when I got scared nothing would help. I felt there was nothing I could do but drink the water. I had to keep water in my mouth every two minutes all night. I would say I had at least 20 empty water bottles near my bed that morning. I had to pee often from drinking all the water but had to take a water with me in the bathroom because if I didn’t the pain got so bad if I missed that 2 minute window to take a drink. It was like clockwork. Without the water I was nearly passing out in pain so I never got any sleep. Next morning I told my parents what was going on.

My mom took me to the ER. I sat there in so much pain. Walking made the pain worse. The ER did the usual “why are you on pain meds” routine instead of actually caring about what was hurting me. The doctor saw me maybe 3 minutes and diagnosed me with Trigeminal Neuralgia and they gave me a shot of Toradol and prescribed Elavil and sent me home. I didn’t feel any better or any relief of the pain and they said “you will be fine have a nice day go see your doctor when you can”. So the fact that morphine & Norco didn’t touch the pain yet they thought this shot would is beyond me. Luckily my neurologist got me in today and my primary prescribed me a better med for Trigeminal Neuralgia (TN). He gave me Oxcarbazepine.

My neurologist said “why didn’t the ER do a CT scan and why did they give you a medicine that doesn’t work well on TN? So he was agreeing that the ER is a joke. He also concurred with my primary that oxcarbazepine was the best medicine for TN and diagnosed me with TN as well. I’m already on Keppra for seizures so now I have two more epilepsy meds now. There are plenty of side effects which I already have anyways so it just makes them worse if anything but so far the med has given me relief after 3 days of the worst pain. Always talk to someone who has the same diagnoses as you and ask what helps them as I find most of the time the doctor doesn’t prescribe the best medicine for the diagnoses and you will be a lab rat trying 5-10 meds before one works. I had a friend tell me what med to ask for as Elavil doesn’t work well. My starting dosage for oxcarbazepine is 150mg twice a day but working up to 300mg twice a day. It makes you dizzy and you have to follow instructions carefully.

After the days of pain my face felt like I was in an accident or fight or that feeling after having teeth pulled and surgery. I have been so anxious for that pain to come back, it’s not something I want to feel ever again but I’m sure I will. It’s scary. This is something I will have for life and it’s far from over but I’m glad the pain has calmed enough for me to write this so I can help someone else wondering what it can be. Pain meds don’t help much so make sure if you have TN get to the doctor right away and try to get a what I’m on or ask for others.

Web MD

Tic douloureux or trigeminal neuralgia is a severe, stabbing pain to one side of the face. It stems from one or more branches of the nerve that supplies sensation to the face, the trigeminal nerve. It is considered one of the most painful conditions to affect people.

The pain usually lasts from a few seconds to a few minutes. It may be so intense that you wince involuntarily, hence the term tic. There is usually no pain or numbness between attacks and no dysfunction of the muscles of the face.

Most people feel the pain in their jaw, cheek, or lip on one side of the face only. Pain is usually triggered by a light touch of the face or mouth on the same side as the pain. The pain is so severe that people can become afraid to talk, eat, or move during periods of attacks.

Although a flurry of attacks can last for weeks or months, there are usually periods of months or even years that are symptom-free. The pain of tic douloureux is usually controlled with medications or surgery.

Tic douloureux is generally a disease of middle age or later life. Women are affected more often than men. People with multiple sclerosis are affected much more frequently than the general population.