I had just joined a few days ago and was so happy to find this group. I had an appointment with a neurologist who started me on a medication called Tegretol. It is only the second day taking it and the relief I am feeling is amazing......I am so afraid it is not going to be long lasting...has anyone else ever used this medication? What was your experience with it? Any strange side effects? I do have quite a bit of dizziness and sleepiness, but in comparison to the pain I was feeling, I am OK with these symptoms :) Also, I have found that eating seems to cause more spurts or spasms of pain.....I am experiment with food temperature as I cannot afford to lose weight...any suggestions?
The dizziness will subside as you get used to the medication. I have been taking it for nearly two years and it has worked unti now. I am now at the maximum dose with only moderate relief. I am seeing. Neurosurgeon and discussing gamma knife treatment does anyone have any experience with this procedure
Also try eating like warm foods with no chewing required. And things that won’t travel to the side of your mouth that you have the pain (for instance I can’t eat rice because the grains get caught on that side of my mouth)
Watch your skin for any reactions. I took carbamazepine (Tegretol) for about 2 1/2 months when red bumps started to appear, eventually they covered my entire body (head to toe). The skin rash was Stevens-Johnson Syndrome which can be deadly if not treated. It is very rare to happen, but still something to look out for. The dizziness disappears shortly.
I can only say Tegretol was good because it worked, apart from that I couldn't function at all.
It worked great for me...helped immediately--was on it for three months and then weaned off-- have been in remission eversince-- for a year and a half--- some people have had years and years without pain..hope it works well for you and you can resume your normal pain-free life!!
Hi Tara, I’ve had TN for a few years now (don’t want to count how many) I started on Tegretol, and I’m still on it, usually 800mg a day, it has been increased on times when my usual dose wasn’t working… But I’ve always been great on it, I have had other drugs to back it up, but once I started on Tegretol I haven’t stopped. No side effects…
Welcome to this brilliant site, full of wise, supportive, welcoming helpful people…
Talk to you again soon hopefully, meanwhile I hope you have some pain free days, hugs Anne
Me too, I had a rash start on Carbamazepine when I went up to 200mg twice a day. I switched down back to 100mg and the rash disappeared slowly. Tegretol is my next trial, so I am following this discussion, thanks so much to all writing their experiences, it is so helpful to others
hlt069 said:
Watch your skin for any reactions. I took carbamazepine (Tegretol) for about 2 1/2 months when red bumps started to appear, eventually they covered my entire body (head to toe). The skin rash was Stevens-Johnson Syndrome which can be deadly if not treated. It is very rare to happen, but still something to look out for. The dizziness disappears shortly.
Tegretol is the main medication for treatment of trigeminal neuralgia.
I have been on Tegretol for 12 years. As your body gets used to tegretol the dizziness and tiredness usually settle but for some it doesn't (like myself), swapping to slow release tegretol regardless. As your body gets used to the dose it doesn't work as effectively and a bigger dose will be needed.
Tegretol has lots of side effects - it can damage the liver, reduce white cell count and reduce sodium levels in the body so blood tests are extremely important 6-12monthly to monitor these.
It is extremely important to NOT abruptly stop taking Tegretol, it must be gradually reduced and gradually increased.
It can make you tired, give hand tremors and reduce memory on larger doses, however if it eases pain these can all be overcome.
I wish you every success with tegretol and hope it continues to ease your pain.Takecare
Tegretol, otherwise known as Carbamazepine, is typically a first drug of choice for physicians to try as if the patient gets relief it conforms the diagnosis of TN. I would recommend that you ask for the slow release version of this med as it helps you avoid the highs and lows. The side effects maybe less noticeable for you as well. I suspect you are being started on a low dose with a scheduled increase. Often the maintenance dose is about 400mg daily but like all meds and patients this can be modified as necessary. The book Striking Back that I mentioned to you has a wonderful
med section. I often take it with me to the doctor when I know we will be discussing medications.
When I am in a pain cycle I try and eat soft food of drink room temperature beverages. Protein shakes should help you not to loose too much weight.
I am glad you are making use of the discussion board. It is a great place to get information. Knowledge is power my friend. You are your best advocate.
Tegretol and Carbamazepine are the same medication. Just a heads up as I would hate to see you hopeful with a new drug.
mel77 said:
Me too, I had a rash start on Carbamazepine when I went up to 200mg twice a day. I switched down back to 100mg and the rash disappeared slowly. Tegretol is my next trial, so I am following this discussion, thanks so much to all writing their experiences, it is so helpful to others
hlt069 said:Watch your skin for any reactions. I took carbamazepine (Tegretol) for about 2 1/2 months when red bumps started to appear, eventually they covered my entire body (head to toe). The skin rash was Stevens-Johnson Syndrome which can be deadly if not treated. It is very rare to happen, but still something to look out for. The dizziness disappears shortly.
Thanks Patty, I did not know this, I would have thought my PCP would have told me :(
He has recommended Gabapentin/Neurontin as it doesn't conflict with my other meds, so
again hoping it will help me. I seem to react to anything, even codeine.
Patty said:
Tegretol and Carbamazepine are the same medication. Just a heads up as I would hate to see you hopeful with a new drug.
mel77 said:Me too, I had a rash start on Carbamazepine when I went up to 200mg twice a day. I switched down back to 100mg and the rash disappeared slowly. Tegretol is my next trial, so I am following this discussion, thanks so much to all writing their experiences, it is so helpful to others
hlt069 said:Watch your skin for any reactions. I took carbamazepine (Tegretol) for about 2 1/2 months when red bumps started to appear, eventually they covered my entire body (head to toe). The skin rash was Stevens-Johnson Syndrome which can be deadly if not treated. It is very rare to happen, but still something to look out for. The dizziness disappears shortly.
Hi Hi Patty,
Yes I am taking the slow release, 300 mg twice daily and it is definitely alleviating the pain…I do still gave some sharper pains in spots, I am not experiencing those all over throbbing pains and then the severe pains that seem to shoot up the right side if my face. And thanks yes the room temperature food and drink is effective 
mel77 said:
Thanks Patty, I did not know this, I would have thought my PCP would have told me
He has recommended Gabapentin/Neurontin as it doesn’t conflict with my other meds, so
again hoping it will help me. I seem to react to anything, even codeine.
Patty said:Tegretol and Carbamazepine are the same medication. Just a heads up as I would hate to see you hopeful with a new drug.
mel77 said:Me too, I had a rash start on Carbamazepine when I went up to 200mg twice a day. I switched down back to 100mg and the rash disappeared slowly. Tegretol is my next trial, so I am following this discussion, thanks so much to all writing their experiences, it is so helpful to others
hlt069 said:Watch your skin for any reactions. I took carbamazepine (Tegretol) for about 2 1/2 months when red bumps started to appear, eventually they covered my entire body (head to toe). The skin rash was Stevens-Johnson Syndrome which can be deadly if not treated. It is very rare to happen, but still something to look out for. The dizziness disappears shortly.
Hi, I started taking tegretol 3 days ago, and am on 3 x 200 mg a day. I am sleeping most of the day and night, feel dizzy and a wee bit nauseous. Strangly though, it doesnt feel bad and Im enjoying the effect! Pretty much not functioning though, but happy to ride this out for a few weeks to see if my body learns to tolerate this drug better. Pain is often completely gone!
Hi Mum!!!
Yes I am experiencing the same effects....dizziness and weird kind of balance issues going on...stayed home from work the entire week.....planning to return Monday, hoping I will be OK since I teach high school English. The pain is often gone but is still there at times, but not unbearable like it was, more like a dull, annoying ache/throbbing......I really do NOT like how the Tegretol makes me feel....I am a school teacher and tutor/homeschool at my own business, teach online through a school in China, and do personal training as well......this is really limiting my working lifestyle....driving is out of the question....I tried a few days ago and felt like I was on a merry-g-round.....hoping these effects go away!!!!
mumto4 said:
Hi, I started taking tegretol 3 days ago, and am on 3 x 200 mg a day. I am sleeping most of the day and night, feel dizzy and a wee bit nauseous. Strangly though, it doesnt feel bad and Im enjoying the effect! Pretty much not functioning though, but happy to ride this out for a few weeks to see if my body learns to tolerate this drug better. Pain is often completely gone!
Hi, I’ve been following you all, pity Tegretol isn’t working for some of you, I started on it way back (years ago) and even though I’ve had an MVD (which didn’t work unfortunately) Tegretol has been my lifesaver, I take 800 mg a day, sometimes more, although higher than that spins me out, I can’t function at all… 800 is definitely my optimum dose… And even then I can still have periods when it doesn’t work, and I’ll get months of hideous pain, but I keep with it, and EVENTUALLY pain will go, (along with some back up meds) I hope you all find a level that suits you and works to a certain extent. All this information is helpful in our terrible struggle against this disease, love to you all Anne
Sounds like you are living my exact scenario. Glad to know we are all in this together,
Hi, Tara0815, wanted to know more about “slow release” meds, I take 4 x 200mg of Tegretol throughout the day,
200mg at 9.00am
200mg at 3.00pm
200mg at 9.00pm
200mg at 3.00am (I put the alarm off to take them on time?)
Instead of getting up in the middle of the night, do you think slow release Tegretol would work, I am terrified of “messing about” with my meds, as this regime seems to work (most of the time)…
Is slow release better, can anyone give me any advice?
I live my life around taking pills at these times…
Thanks in advance for anyone’s help.
Hugs Anne
I think slow release form, to avoid side effects from sudden peak concentration, might work well when dosage is fairly low, being aware of my limits, max. 200mg daily maybe. With high doses, I suspect form would make no difference to me. When I had to stick to working schedule I used to get up at night (Tegretol standard form). Mistakes will cost you pain, so if you wish to experiment... (I wouldn't risk).
i take slow release and found them to give better pain coverage with less highs and lows i experienced with regular meds. i take 400 carbamazepine(tegretol) at 8am and then again at 8pm. i take baclofen, which is not available in slow release, at 8am, 2pm and lastly at 8pm. going to slow release was easy and immediately gave me the relief i longed for. it is available in slow release at 200mgs as well.