I am so happy to be joining a support group. I have suffered from trigeminal neuralgia for almost 50 years and it is still a subject that few people understand or have heard about. It is even difficult for me to explain to my children. It is impossible to describe the agony of an attack. The closest I have come to describe the feeling that you experience is the pain that you feel when your dentist hits a nerve on a tooth, but there is NO jumping away from it and it lasts longer. My sister had it and we used to discuss ir but she is gone now. I am 72 with 80% good health but I worry that if I get dementia that no one will know what my pain is from if I can't tell them. Does anyone else worry about that ??
That is a good description of the pain. I am only fifty years old but I can completely see where the thought of dementia would scare you. What sort of medications are you on? I am taking Carbamazepine and Baclofen. The side effects of these make me unable to work so I have been on disability since last December. I would suggest having your TN documented well by a doctor with very clear instructions as to medications so that in the future if you should develop dementia there is a record of what and how much worked for the pain. I am wishing you many, many days of pain free days.
Patty said:
That is a good description of the pain. I am only fifty years old but I can completely see where the thought of dementia would scare you. What sort of medications are you on? I am taking Carbamazepine and Baclofen. The side effects of these make me unable to work so I have been on disability since last December. I would suggest having your TN documented well by a doctor with very clear instructions as to medications so that in the future if you should develop dementia there is a record of what and how much worked for the pain. I am wishing you many, many days of pain free days.
Thank you for the advice regarding record keeping. I was prescribed my current (naproxen) by my intern doctor. She actually prescribed it for my arthritis but it works quite well. Of course, if it is a bad attack nothing takes it away but even slight relief is a blessing. In my 30's and 40's, I took Excedrin (30-40 a day). I hope I still have a liver left.
Go up to top here…resources
Click there then on emergency room card!!
Click on that link and get this card printed off, make 2 or 3 of them!_
Ask doctor on phone to call you in some lidocaine patches and lidocaine cream…miracle…can be several hours without pain_And can take less meds…__
Then purchase only whichever product you can afford…patches slightly better…my preference…then pick up that one prescription…or I use both…lasts for 2 plus years here.
_These tools should help!
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