I've been on Tegratol for TN for nearly 3 months, I'm on 400mg a day, this doesn't feel like quite enough but I really don't feel myself on it and taking more just zombies me out. My GP says people with epilepsy manage to live with it so it must be OK!
What experiences have you had? And at what point should I ask to see a neurologist? I'm on my 3rd GP and he iscertainly the most sympathetic and competent one but I can't see going on like this for years like some of you have ...........it'll drive me nuts.
I completely feel for you. Here is the scoop. In other countries like the UK, Australia and others you are not put on these drugs unless that is what you want. There are 5 or 6 surgeries available that gets rid of the TN pain and off these terrible drugs. You don't have epilepsy and there is no need to be drugged. I, like you, had a horrible time on the drugs, couldn't function. BUT the neurologist I was seeing wouldn't let me see the surgeon who could help me. SO, I did my own research. I found the TN specialist in my area, went to see him and got a surgery which got rid of all TN pain, got me off the drugs.and I have my life back. For some reason docs in the US want you to stay on drugs?
Anyway do your research, find the right doc (usually not a neurologist). But a doc that actually does one of the TN surgeries and get off the drugs! They are awful!
I tried tegretol around 15 years ago It affected my Liver so I had to come off them. I had a balloon compression in 2013 and had 9 glorious months of no pain what so ever. I was numb down the side of my face but it was nothing really. Anything but pain. After the 9 months my TN has started again. Until I get an appointment at the Pain management clinic Ive been put on Pregabalin. I am like a Zombie. I wish there was a permanent cure for TN. All together Ive had TN for 16 years. Im not surprised they call it the suicide decease.
firstly you have my full sympathy im on tegretol and duloxetine and I only found they made a difference since taking them together.. tegretol alone wasn't enough! It took a few months of feeling like a zombie before getting used to the tablets but now im use to them so have no noticeable side effects. However I dont plan on using the tablets as a long term amswer... u can ask to be referred to a neurologist whenever u like.. Im currently waiting to hear from the hospital for first appointment with neurologist.
all that said, I also use an e-acu pen which works wonders for me.. they are available to buy online albeit a bit expensive but worth their weight in gold for TN!! whilst waiting to be referred to neurologist maybe try an get hold of one..
Hope tablets work for u soon or doc helps by getting u referred quickly
Thanks for your replies, I was on Pregabalin when 1st diagnosed but only for a couple of weeks, they didn't do anything and zombied me out as well, worse than the Tegratol do.
I think I will push for a referral. It's like I can feel the pain pushing aside the tablets and saying hey don't forget you've still got me!!!
I certainly don't want it for years to come.
What do you guys do about work? I felt awful today sat at my desk and I just can't concentrate on anything.
Symptoms alone, the MRI was to rule MS in or out. mS changes the kind of surgery.
I have some brain lesions so they act like I have MS. But I highly doubt it. I had a neurological neck tumor that caused all that. Tumor removed, no more lesions. But they are into CYA (cover your a....) mode always. That applies to you as well. The drugs are offered first for this reason. You have to push/advocate for what you want or you could be drugged forever. I had to get very assertive to make sure I got off these drugs.
There is plenty of info on line to get you started. That is what I did. Once I got all the info I searched my area for who was the surgeons who did this kind of thing. I talked to one who did gamma knife, but because of the MS issue couldn't do that one. Then found THE surgeon who specialized in TN , got a referral from my doc, not the neurologist who wanted me to stay on drugs ( thank goodness I was on summer vacation because no way could I work). Now am off drugs and out of pain for a number of years. Unfortunately, TN comes back and will have to do this again. It was called radio thermal frequency surgery. I was up in an hour, got off the drugs in a week and a half and am working and living normally. Don't compromise your life because, in this country, they are told to try to keep you on drugs first. In other countries that doesn't happen.
Absolutely demand an MRI. I was diagnosed with TN a couple of years back. Self diagnosed from researching the terrible pains I was getting. Gp didn't help much I didn't feel and so I went to the dentist (knowing that it wasn't dental but thought worth a shot!). It was my dentist who suggested it sounded like TN and referred my straight away to a specialist at QMC in Nottingham.
Cut a long story short... Started on meds.. Worked, stopped working, worked stopped working... 5 meds later my first consultant from the Maxillofacial clinic contacted some other neurologists in the hospital.
I had an MRI scan under my first consultant... Which revealed I had Hydrocephalus (fluid on the brain) but this was dismissed as being the cause, and so continued with the meds..... Anyway.. The neuro team had other ideas... Having heard I'd tried numerous drugs (carbamazepine, gabapentin, pregabalin..) they said well why shouldn't it be the hydrocephalus causing pressure on the nerve.. Which it turned out to be. I had Endoscopic third ventriculostomy to treat the hydrocephalus.. Thus relieving pressure on the nerve and a couple of months after the operation my pains gradually lessened to the stage I'm at now, which I'd describe as being 99% normal! (They could actually see from the MRI where one of the branches of the nerve had been slightly stretched!)
I can't thank the neuro team enough.. I'm a 30 year old male so not your typical TN sufferer and I'd had weeks off work due to this awful condition.
To conclude: get an MRI. Although it's very rare to be caused by hydrocephalus.. I'm now the 2nd person who's been treated using ETV surgery.
No worries.. I really feel for you and wish you the very best of luck to becoming pain free. I was on an extremely high dose of carbamazepine when I was on that... More than recommended maximum just to keep on top of the attacks.. But I remember feeling spaced out for a lot of the time and I also developed a rash from it in the end which is why they took me off it! They may want to explore medical options before opting for surgery.. That was how they did it with me anyway, as the surgery is somewhat invasive, although fortunately worked for me!!
See what the scans show for a possible cause and get them to discuss surgical options if they're available to you.
Oh and when I say 2nd person.. I mean 2nd person my consultant had treated.. Lol.. I have read of more cases like mine though, although like I say, it is very rare. Do you mind me asking your age?
Push for surgery.. Even if you're left with some facial numbness, you'll be so glad that you won't have the neuralgia attacks any more! Discuss your options and let us know what they say good luck!
I agree with Adam! Get the surgery and get rid of TN pain. The tradeoff is worth it...meaning some facial numbness. Thank goodness we have this surgical option!
I would like to ask you which surgery you had and how long have you been free of pain ? I have had TN for 16 years. Last year I had balloon compression. My pain went for 9 months but has now come back. I am
now on 300mgs of pregabalin and am like a zombie . I am 71 years old and fed up.
Patricia, how on earth have you coped with TN for so many years? I'm worried I'll end up like you (and I mean that in the nicest possible way) is it just the luck of the draw with GPs?
I was first prescribed Pregabalin and like you I was like a zombie. Sorry I can't offer advice as I'm too new to the condition but you have my heartfelt sympathy.
I feel for you! I am 63 and terrified the pain will come back. Supposedly it should be gone for years but the nerve grows back. Is that what happened to you? My surgery was called a radio frequency thermal surgery where they put a needle into the nerve and fry it/ burn it into submission. It lasts until the nerve grows back which can be 3-5 or more years. Then have to do it again and again until they find a better solution! I cannot do those drugs either!
I am using 200mg Tegretol with 200mg Epleptin three times a day. I get the pain every 6 hrs so the 3 times is not enough, would like to increase but I am 7 months pregnant and afraid to do so.
Being on this meds, well I did not know I was pregnant until I was 26 weeks. I was still on the pill and felt pregnant. Gynae says all well and neurologist says I must carry on with meds.
Meds help but only for 6 hrs then pain starts, starts at upper lip then jaw and ear. This is the worse pain ever, hope I don't have it during labour.
However, I am afraid cos I am not sure how the baby is (I passed the month 20 when tests can be done to check) well whatever happens I will have to face it.
Yikes! I am wondering why they can't do the surgery while pregnant? The anesthetic? Which is worse, the aTN drugs or the anesthetic? Some surgeries don't use an anesthetic..gamma knife for one. I would get more info. I know neurologists have become drug pushers for this condition, but the surgeons are not. If you research on line for trigeminal neuralgia surgery you can see the choices and then research or call around to find the TN surgeons in your area. Can call neurological clinics and ask if they have a TN surgeon. We have a hospital that trains and are involved in medical research called OHSU. Oregon Health and Science University. I found a TN specialist there. He did my surgery Dr Kim Burchiel. He was great.
If you can find a surgeon, then you can hopefully get off the drugs. Know that neurologists, for some reason, have become drug pushers for this condition, they will argue with you, tell you drugs are the only way, with hold information...it is sad we can't trust them. Mine did all of these things and I keep reading about this phenomenon! Why? I don't know.