trigeminal neuralgia
Posted , 28 users are following.
I have been diagnosed with trigeminal neuralgia, what a painful debilitating condition. However my GP put me on gabapentin and the symptoms are easing now, i hope to be pain free in a few more days.
I couldn't think straight because of the pain but i am now hopefull, i know it isnt a cure but at least the relief is fantastic.
3 likes, 61 replies
lisa25044
Posted
mathew52980
Edited
mathew52980
Posted
mathew52980
Posted
alicot
Posted
I had such a horrible time on the drugs that I will do everything to avoid it! For some reason, drugs are the preferred starting point in the US. Not so in socialized countries. I had to go out on my own to get away from the drug pushing.
Don't be afraid to do your own research. Be tourism advocate and you will find your answers.
lisa25044
Posted
alicot
Posted
The only test they have is your word. Describe the symptoms. Then tell them you can't handle the side
effects of the drug and want to see a neurosurgeon. Once you see the neurosurgeon discuss the surgery
options ( I suggest you do your own research now on which option looks the best for you and ask about it at the appt. ).
The doc might want to do an MRI of your brain to rule out MS. There are two more surgical options if you don't have MS.
There is decompression surgery and gamma knife.
If MS is a possible cause ( mine is questionable), there are several other options.
I did the radio thermal frequency surgery where they use a needle to burn the nerve. Bottom line, if the
drugs are making you nuts or disfunctional as they did me, there are about 5 options to get off drugs.
Personally I hate those drugs!
Make it happen!
Tarun
Posted
Tarun (hospital pharmacist)
mathew52980
Posted
mathew52980
Posted
alicot
Posted
Here is what we must do, all of us must do. Look on line for the trigeminal neuralgia specialist in your location. I had to
do that because the neurologist I was seeing plus another couple of neurologists I had contact with made it
clear to me that no one REALLY knew enough for my satisfaction. Just a lot of guess work and drugs. Very sad.
Would rather they were honest about their lack of knowledge ( and perhaps lack of interest) regarding TN.
Drugs they will give you. Real help, most likely not. You must find the neuro surgeon who not only knows ab
out TN but also has treated ( done TN surgeries) on hundreds,perhaps, thousands of people...who have a track record and experience.
This advice comes from TN patients and specialists. I used the info to help me.
Also if the drugs work and you can tolerate it, then hallelujah, feel free to stay on them as long as you like. I
suggest having someone lined up for when the drug stops working which can happen or for when you deci
e you don't want to be on drugs. Everyone is different. Just have someone in mind in case you need a surgery.
You are the boss of your own body, no one else!
Just for the record my neurologist was extremely unhelpful. He argued with me about my desire and need to get off the drug and when I asked him for the name of the neurosurgeon who could help me, he said "that isn't necessary" and wouldn't give me the info. So I got it for myself and found the TN specialist in my area. Now I am pain free and off drugs. These drugs take awhile to wean off of, but you may know that already.
mario
Posted
I am in my forties and to think this pain is going to come and go for the rest of my life is daunting.
Sunnieedwards
Posted
Valkyrie Sunnieedwards
Posted
Starr64 Valkyrie
Posted
Didn't realize it could be a trigger.