Trigeminal neuralgia

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KayTheCurler

KayTheCurler

Well-Known Member
One of my younger generation has developed this painful problem. Has anyone here experienced this? Got any coping strategies that can be helpful? At the moment shots are given at the ER when the pain strikes hard. This patient needs to go to work - how should this be dealt with?
HELP?
 
My mother has it as did a family member of @chansen

For my mother, the name suicide disease rang true.

Moms life had become hell.
The slightest breeze could set it off.

I hadn't realized how bad it was until we ended up in ER. She was neglecting health issues in hopes she would die

I started to attend appointments

She ended up adjusting meds. After one adjustment, she woke up pain free, it was a miracle
 
My father has been living with this since 1992. He left work at 52 (my age) on long term disability.

It started as undiagnosed shingles in his inner ear. Incredibly painful right there, as one might imagine. It left Trigeminal Neuralgia behind.

I drove him to Royal Victoria Hospital in London a month ago to see a specialist in head pain. He last went to that clinic 25 years ago. Somehow, he ended up at the headache clinic, not the head pain clinic, but they saw him anyway and sent some new medication suggestions to his family doctor, who has not been a big help. When London suggested Tylenol 3, he provided a prescription for only 10 of them, and told him to go back to London to get more. It can take a year to get an appointment.

My dad has tried all the marijuana derivatives, which is hilarious to me, but to no avail.

Back in the 90s in London, he was told that if anyone said they could operate, run. He'd likely be disabled from the attempt.

The pain got worse in the past year. He really can't do much. It's pretty rough.

I'm pretty sure he's been on Pregabalin. He's tried a lot of things. I'll ask.
 
chansen said:
Somehow, he ended up at the headache clinic, not the head pain clinic, but they saw him anyway and sent some new medication suggestions to his family doctor, who has not been a big help.
Click to expand...
That's supposed to be a pretty good program. Hope their recommendations help. I do find family doctors are fine for routine stuff but anything out of the ordinary throws them into a tizzy. My current guy is a fairly new grad, too (finished his residence just months before he took us on) and that does not help, either. Unlike my old doc, who would refer at the drop of a hat, this guy needs prompting and cajoling.

I have a buddy from high school with chronic pain after a head injury years ago who comes from Kitchener to the LHSC headache clinic. We had dinner with him and his wife one time when they were here.

(PS. it's just Victoria Hospital here. Royal Victoria is Barrie. We actually have a joint venture in Barrie called "Royal xxxxxx" due to their involvement.)
 
Here is a thread from the old site from 2010: Trigeminal neuralgia -- "The Suicide Disease" | WonderCafe

Here is what the solution was for my mom.

Mom had been on lyrica. A few years ago she was on carbamazepine (tegretol) but the meds made her loopy and wouldn't work. Lyrica took the edge off at first...but wasn't working. So the switch was to have her take the lyrica and the carbamazepine..... and since she did, she has been pain free.
 
JayneWonders said:
Here is a thread from the old site from 2010: Trigeminal neuralgia -- "The Suicide Disease" | WonderCafe

Here is what the solution was for my mom.

Mom had been on lyrica. A few years ago she was on carbamazepine (tegretol) but the meds made her loopy and wouldn't work. Lyrica took the edge off at first...but wasn't working. So the switch was to have her take the lyrica and the carbamazepine..... and since she did, she has been pain free.
Click to expand...
Was the dosage amount also changed?
 
Trigeminal neuralgia is the disease. The causes are different for different people. For B, it was the radiation used to treat lymphoma in the muscle behind her eye. I suspect the nature of the injury and a person's biochemistry affect what treatments work.
 
I should also add this was 15 years ago. This gave mom a few food tears until her death from other causes. Likely new meds are on offer; however, the important point was the negotiation re meds , scheduling and importance of not giving up
 
Thanks for the wealth of experience being shared here. My daughter is waiting for the results of the CT scan and for a dental appt. to see if there is any involvement with dental stuff. The doc is very thorough and is obviously not sweeping this under the corner of a rug. She is medicated and says she isn't in pain - just spaced out. As always - wait and see!
 
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