trigeminal neuralgia

lisa25044 · 2013-10-04T15:04+00:00

Yes I have constant pain as well as sharp pain. I have been taking ibuprofen but it barely keeps it at bay, so today my doctor has put me on Tegretol. I am only prescribed 200mg a day though. I haven't had a confirmed diagnosis from a neurologist yet but the doctor is sure I have TN.

mathew52980 · 2023-02-14T01:57+00:00

I was told to take ibroprufen also which didn't touch it. then I went back and was prescribed tromodol. which is tegretol I did advise the doctor about trigeminal neuralgia but he said he didn't want to go down that route.when I went back again I was given carbamazepine .this is my second attack of nerve pain but this drug is working.i haven't been to a neurologist but this drug is helping.dont suffer in silence tell the doctor about the pain and how almost anything triggers it.i have .lost half a stone in weight just by not been able to eat a proper meal

mathew52980 · 2013-10-16T22:51+00:00

if you have tn no painkiller will touch the pain. please don't suffer.the first time I went to my dentist and after three courses of anti biotics I asked him to pull the tooth which I was sure was infected.i wish I knew then what I know now

mathew52980 · 2013-10-16T23:36+00:00

I apologise I think I think tegrotol are the same as carbamazepine but am in a bit of pain right now I thought these were working.but ?

alicot · 2013-10-17T03:07+00:00

Yes, do the homework. These drugs are temporary most of the time and often make one crazy, I was on neurontin, stopped working after one month, then oxcarbazepine...worked great on pain but I couldn't function, felt horrible. So did my own research and found the guy here that is the expert on TN. He did what believes is best...radio thermal surgery (using a needle they burn the nerve rendering it harmless. All TN pain is gone ( for now anyway). Nerves CAN grow back and may have to repeat. That goes for any surgery at this point. If MS is a possible cause, gamma knife is out. I was able to go back to my life the next day...very cool! If the nerve grows back they do it again.

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 · 2013-10-17T16:27+00:00

Well I have been to the doctors again and now I am taking Tegretol 400mg and co-codamol and naproxen. It is stopping the pain but then I am half asleep, if not asleep! I still have two and a half weeks to go before I see the neurologist. Anyone know what tests they do to confirm it (in UK)? and whether there is any hope of being off drugs here?

alicot · 2013-10-17T18:46+00:00

Hi Lisa,

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 · 2013-10-17T18:47+00:00

MRI testing can be done to rule out secondary causes, such as MS mentioned above. Other neurological tests can be done to rule out other causes such as compression of the nerve for example. However a good patient history is as important for a doctor to get the diagnosis right.

Tarun (hospital pharmacist)

mathew52980 · 2013-10-17T23:02+00:00

This is my third day on carbamazepine and I can honestly say they are working. I am still getting an occasional twinge from my gum to my eye but it is working no (pain ) today. As for tests do you think I should ask my doctor for one. I have to go back in 2 weeks for results for a blood test because I have been put on these drugs

mathew52980 · 2013-10-17T23:19+00:00

It took 3 doctors appointments and 2 of them was me telling them what I had .How many for a ms test or a MRI .The doctors don't know enough about this infliction

alicot · 2013-10-18T03:55+00:00

Hi Mathew,

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 · 2013-12-01T17:25+00:00

My tn was diagnosed 3yrs ago, stabbing and electifying pain in one side of face then it went away, been back a few times since,also i have had a numbness in the same side of the face for 19 yrs prior to the pain starting . I had an mri of the trigeminal nerve root and it was found that i was missing csf in the meckels cave and my myelin sheath is dry so messages are not passed through the nerve correctly was also told by my neurologist and the radiologist they had never seen this before, i am a mystery, it doesnt help the pain though. been painfree for 9 months until yesterday back on gabapentin i think and no talking. Is any one else a mystery.

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 · 2014-02-03T08:21+00:00

I am 33. I was diagnosed about year and a half ago. I am currently in the middle of my first break through flare up of pain. I am in terrible pain and nothing is helping. I can't eat or even think straight. Spent most of the day curled up in a ball crying ( I have no pain tolerance at all). The pain sessions are lasting for hours before I get relief. Relief lasts for 30 minutes to an hour. Then the pain comes back. Can anyone help me? I live in the us and thanks to our new health care program I can't afford to go to the doctor. Any home solutions that I haven already tried? Heat isn't working, I have upped my carbamazipine and gabapentin levels already. Plz help. Here come the pain again.

trigeminal neuralgia

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