What are people's experiences of Tegratol?

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!

Good luck!

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.

Hi

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

take care x

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.

Sorry have another question, have you all had MRIs or is your diagnosis based on symptoms alone?

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.

Thanks so much for all your help and advice. I'll let you all know how I get on. Seeing GP on Friday!

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?

No, that's fine I'm 45.

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 also agree with surgery. 9 months free I had. Its worth it to have no pain for a while. I am now 71 years old

and have had a long time to suffer from this dreadful affliction. I will have the surgery again so I can have

some time again off free pain for a while. I am waiting for appointment.

Dear alicot,

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.