Does anyone have any experience with Trileptal, good or bad? I start it tonight 300 mg. My prescription is for 1/2 of the 300 mg pill for the first week at bedtime and then the whole pill after that. Any thoughts? I’m nervous. But also excited to have some relief from this awful pain. Newly diagnosed(this past Monday) but I have been struggling for quite a while waiting for a firm diagnosis.
I was on it for the first 6 1/2 years. Worked great, then all of a sudden,it quit. I was on 1200mg a day. Went down hill from there. Tried many different mixtures of doses. At 8 yr mark had Gamma Knife. Okay for 6 months, came back with a vengence. Chose to have an MVD, which worked for the TN, but caused me to be more miserable with AD. Now I'm at a loss as to what to do. I have spent most of this am crying. Getting pretty miserable by the day.My advise is don't wait undtil a MVD. That is what they thik has happened. The Trigeminal Nerve has been too damaged after so long. So just be careful.
I hated it…I went to get an MVD. I had no IQ and major depression because I couldn’t work… I had LIDOCAINE PRESCRIPTION for face to keep pain down and keep med mg. smaller.
Keep posting!
Kc Dancer-I am concerned about the “no IQ” thing because I just happen to already be on gabapentin and Topamax (or Dopamax as I call it) for Fibromyalgia and migraines. And I basically feel like I am stupid. I have word recall and memory issues already. I am nervous about how much worse it will be with the new medication. I also wonder how much worse my ATN would be if I weren’t on those medications though, since they are common medications on the list for TN. I will most likely have to do some adjusting of my medications to find the right one(s) since I am just starting out and I know these things take time.
Santafred-I am so sorry you are suffering so much. I will keep that advice in mind. I plan on discussing surgery with my Neuro. The thought of being in pain and taking medication forever is a depressing thought. I don’t feel like I have quite accepted this diagnosis yet and I still don’t even really understand what to expect. It’s a tough pill to swallow. (No pun intended) I appreciate all the advice I can get.
–well here goes nothing. One two three…down the hatch. 
Unfortunately I can’t take antidepressants. Particularly Cymbalta. I used to take it for Fibro, and after a few months of extreme anxiety, my psychiatrist helped me to slowly titrate down off of it. (Very, very slowly).
I take 1200 mg of gabapentin a day and 150 mg of topamax.
Are you a candidate for MVD surgery for your face?
My neurologist, great guy… I told him I needed focus and energy… I needed to research having my MVD to get a chance for it to get face better.
I asked him for a prescription of Ritalin…he said that he often gave them sparingly for his epileptic patients, for when they need, as needed ,focus and energy.
My house got clean, and I read and absorbed Enough reading to pick my dr. And my surgery.
Have you read striking back by dr ken Casey? Our tn bible here
Keep learning and posting,!
I won’t know if I am a candidate yet until after my MRI I think? I’m not sure. My first Neuro appointment is still kindof hazy in my mind, if that makes sense. I swear I am an intelligent person but my memory has just gone to crap! I remember him mentioning surgery, and specifically MVD, but he wanted to go ahead and start treating the TN before we got the MRI scheduled.
I think I am going to order that book right away. I have heard it mentioned so often in this community.
I am very interested in the prescription for Ritalin as needed. I have absolutely no energy as it is. (Fibro) add ATN and sedating medications that make me feel like a stupid person to that, and I am like a shell of my former self. And I am only 29 years old with two small children, a husband, and two dogs. I feel like I can barely keep up! And I mean, it’s embarrassing sometimes how badly I’m managing my household.
Now if only I could get over my fear of asking my doctor for medications. I always feel like I am going to be seen as a drug seeker because of the way I have been treated in recent months by various medical professionals in the roller coaster ride I’ve been on leading to my diagnosis of ATN.
In pain and can’t sleep as usual, so here I am on the forums. Just wanted to let you know, Kc Dancer that I ordered ‘Striking Back’ online!! Can’t wait to read it. (If I can focus enough without having to read the same paragraph fifteen times…sigh…)
My restless legs won’t sleep!
Get a highlighter…for the book
Know two things…MRI is to rule out cancer , MS etc…MOST of the thousands here do NOT have TN seen on their MRI
AND
Since the book, MVDS have gone up over success of 90%… That is not a cure
I’m 95% great now…might have to have a second MVD one more time …usually 10 years is max …
Make sure take somebody with you to neuro! Especially when you need to let them know that you need a focus med like Ritalin…explain how your daily life is, and that if you could be clear with low dose of a focus med… That you can take care of yourself and family , reading, etc…
Please tell met there is another neuro in your town or state …you cannot take no for an answer if you need lidocaine prescription for your face (you might be able to lower your meds if you can get a topical on your face)
.
LIDOCAINE saved my sanity…had verrrry low trilepetal cause that patches for my face, or the cream was the best thing! Try that before Ritalin or get both…you must get past that they are the boss…you are!
Would you let a doctor to refuse to properly make your child better?
When I couldn’t remember…I copied and paste to a word document…
to keep track of what I needed to remember from people here on these posts!
Keep learning!
Sorry so much here!
I take 600mg of trileptal along with some lyrica and endep.
The trileptal has helped my pain significantly but there has been a cognitive trade off. I found it took some time to get used to the medication and initially i was tired and dizzy.
I still find that i have trouble with spelling, writing, and word recall. I have some trouble with my memory and i keep little notebooks all over the house, my family now know that telling me something is useless, it needs to be written down.
Despite the cognitive issues, i am happy at this stage to stay on medication as my pain is now at a tolerable level most of the time.
Best wishes, i hope the trileptal will help.
hugs
trish
Actually, Kc Dancer, now that you mention it, I remember my doctor saying something about the MRI not being used to diagnose the TN and that they diagnose based on symptoms and medical history. He also said that there were things you don’t want to find, like cancer and MS plaques. (My mom has MS)
I tried to convince my best friend to go with me to my neurologist appointment but she had prior obligations and I asked her last minute after reading somewhere that it was helpful. My husband was at home with the kids so that was kind of out of the question. Lol
There actually is only one neurology and neurosurgery clinic in three counties. There are three neurologists. But they are all colleagues so….I am limited as far as my area goes. I will give it a shot though. I am not going to lie though. I am all talk and no action when it comes to the whole “Don’t take no for an answer” thing. I turn into a kid in the principal’s office when I get in the doctor’s presence. I just nod and do what they say. I have gotten a little better than I used to be. Mostly because a few years ago I saw doctors once or twice a year and I always assumed that a doctor knew much more than I did about my body. Lately I have seen so many doctors, I can’t even keep up! Now I know that I understand my own body and often times doctors only know what they have read out of a textbook or medical journal. And if I don’t fit the mold exactly then they just treat me like crap.
Trish—I have little notebooks all over the house too! Now, if only I could keep up with them. And what I wrote in which notebook……
Shindig—I may try getting my husband to try to email me some things if he wants it to get done. That’s a good idea. The Topamax already effects my cognition and I think my husband gets frustrated with me sometimes when he tries to explain something to me and I don’t get it and the he says something like “What don’t you understand about that?!” Like I’m stupid. I don’t think he means to do it but I think he thinks I just wasn’t listening to him. It’s like my brain is doing the same thing it does when I have to read the same paragraph fifteen times…. Anyone else experience this?
My husband was not able to get why my brain was like dementia… Therefore…the lidocaine cream, Ritalin and within my first TN year, MVD.
I had a small STROKE a few days ago, and for a week, it was like for a week that I was back in trilepetal land… Lucky I’m now getting back to talking and reading better everyday…!
You never know what life throws next!
Keep moving forward and come here for posting!
Oh dear! I am so sorry to hear that! But I am glad to hear you are doing better in such a short amount of time.
I had a crying spell a couple of hours ago after trying to help my son with his homework. (I had to read the same sentence over and over and over) and this is only day one of Trileptal. 
Hi Ana,
Doing homework with children can be horrible at the best of time, sorry it was extra tough today. It may not be appropriate for you but sometimes it can be worth letting the teacher or school know that things are more difficult at home.
Give your body time to adjust to the medication, it may get better over time.
Sending you a big hug
Trish
I was on trileptal for months it really did the job. The only thing you need to have blood work it can deleped your sodium . I was in the ER over this sodium drop. It’s very danger. Just a food for throught… Good luck … G
Hello Anna, I have been taking Trileptil for about 3 years and am currently on 600 - 900mg a day. I have been on 600 mg a day for most of the last three years but increase it as required. It appeared to work well for me with no side effects, apart from the cost. I found that when I tried to decrease the medication the symptoms would start up. However now nothing is working and I am going in to hospital, possibly next week, for MDV surgery. I persisted with medication for 7 years and have had bouts of three years with very little to no pain however the last year has been different and I am now finding it difficult to work. I work as a trainer and talking is a trigger for the pain.
Good luck with the Trileptil.
HI Donna, I didn't have to have blood work/blood tests with Trileptil. I did with Tegretol and Dilantin and had to stop taking these, but not with Trileptil. Wonder why?
Donna said:
I was on trileptal for months it really did the job. The only thing you need to have blood work it can deleped your sodium . I was in the ER over this sodium drop. It's very danger. Just a food for throught.. Good luck .. G
Oh Donna. Please ask lots of questions before the MVD. Your case sounds so simulator to me. I was on Trileptil for 6 1/2 yrs worked as in your case the same except I was on 1200mg a day. Finally choose to do the MVD which took care of the TN, but right after I had different signs of AD. It is far worse to me. No medication works. No one told me this could happen. It is a possibility. They certainly don't tell you all of the side effects. I had one of the best surgeons. JUST BE CAREFUL.. Ask plenty before you do it.
Thanks for the info on MVD i seen my NS and he said I can’t have the MVD it’s to danger… So we decided on radiation … The teams are talking Bout my case Wed… To know which way to go… God bless
Again, ask plenty of questions. I also had Gamma Knife before MVD, pain free for 6 months then back with a vengence. Just ask plenty of questions.