I am wondering what the normal starting dose is for Trileptal? From others' experiences how long until side effects diminish? I started on this 5 days ago. It may be helping some, but I still have stabbing pain under 3 bottom teeth anytime I talk for than a sentence or two or when I eat. This is the only place I ever hurt. I have had trouble accepting it is TN, but have been to multiple doctors and there seems to be no other explanation. I am taking 200mg/twice a day. I can't imagine going much higher yet as I think the side effects would be intolerable. I will say Trileptal agrees with my system much better than Tegretol. I only lasted a few days on that as I felt so spacy and did not feel safe driving. I am so frustrated with this pain. It has come and gone for 3-4 years. I do not think my pain has been as excruciating has others here live with. But since Nov. it has been daily and very hard to control. Not being able to speak without pain is the worst. I guess I'm just looking for encouragement. The trileptal is somewhat upsetting to my stomach and makes me feel a weird pressure type sensation in my head. I hope the side effects will go away soon.
It takes up to 3 weeks for trileptal to reach it full effect.
Oh my friend!!! ...bless your heart...I too think you definitely have a way with words... :D
I have been on Trilep for almost a month and have noticed a steady increase in my energy and actually feel like I have gained a few points back for my IQ!! My pain is still not 100 percent under control, but I can truly say it is 90 - 95%, which I will take ANYDAY over what it was with the Tegretal (horrible, by the way...) The Teg was my nemesis...for sure. In a constant fog always loosing my words and felt like I couldn't concentrate for longer than a few minutes at a time. ...definitely feel like I lost 6 months of my life, along with terrible pain; I was desperate for help. Trilep has done that for me, so far.
I too have gained weight; so glad to hear it is not just me! It was not very much with the Teg, but YEP...don't like it AT ALL ...weight or pain...??? My vanity has taken a back seat to no pain, for sure.
It took about a week for my body to get used to the meds and not 'freak out' every time I took it. Best of luck to ya!!
nonchiaro said:
Wow, I feel like a bit of a baby after reading some of the quantities of Trileptal being taken by my friends here. Previous to reading this thread, I had a more woe-is-me attitude Meds-wise. I imagined that I was dancing alone on the outer-edge of the med world, in a land where few others tip-toed.
I was wrong. Very wrong.
Years ago (maybe 5-6), I had a flare-up that took longer to calm. In the midst of my fear that the spasms and pain would never quiet (so far, they always have) and a significantly increased quantity of Neurontin, up to 3600 mg a day, my neurologist prescribed Trileptal.
I remember taking the first 150 or 300 mg caplet and feeling like a mental patient in “One Flew Over the Cuckoo’s Nest”. I was immediately Zombified and I felt as if I was a hair-away from sitting comatosed, drooling in my shoe. I tried the second caplet and no change. I told my Neurologist that I couldn’t take it and he told me to stop.
Last Spring, I had another flare-up with a meaner pain and duration profile that wouldn’t stop with Neurontin, despite my taking mega-amounts. I called my Neurologist and cried-out for help. He prescribed the Trileptal again and I, after reflecting about my previous reactions, quickly said yes. I was tortured. I would have said "yes" to anything. Within a day, my spasms were reigned in and en-route to being quieted. It was magic.
Since then, the magic has failed me twice.
I have taken doses as high as 1200mg. I am now taking 900mg of Trileptal and 1200mg of Neurontin. My spasms have receded and are now gone.
But I am very discombobulated. I am not laying down tracks of new memory. I feel a bit like I would imagine an Alzheimer's victim might feel. I also have lost my normal powers of observation. I have become disturbingly oblivious to many of the details of life around me. I am very tired as well. I like to wake up early, say 5AM…but by 11 or 12, I feel like taking a nap…by 8-9PM, I go to sleep. For years now, I have taken all kinds of PM sleep inducers: Tylenol PM, Simply Sleep, etc. to make going to sleep and staying asleep easier and more dependable. For two months now, I haven’t taken a one.
I’ve also gained a lot of weight. Has that happened to others?
And finally, driving…understanding the enormity of this responsibility and the potential dangers to all while on these meds, I make a check and double check effort to be extremely cautious and deliberate while I drive (yet notwithstanding, I average 2.3 apologies per every 10 miles.)
Like I said in my opening, I thought I was alone in the measure of my dosing. And because of that, I think I lavished myself with a bit more of the: “woe is me’s” than I deserve.
Thank-you all. I particularly thank those who are taking 1200mg a day for sharing.
I’m going to have a stern talk with myself after posting this message.
Good luck all.
Yep, I've gained a little weight too, unfortunately.... didn't wanna admit that but.... Guess I'll hit that treadmill again. Now that I'm finally over this stupid cold!!!!! Min
I am putting on the pounds after 4 weeks on this stuff.... but I also have had 4 weeks of almost no pain. I had a weekend of bad side effects more than pain. Definitely any pain I have had is a 3 and under which I am happy with. I go for about 10 days at a time feeling good, almost my old self.
However, I think the weight gain is due to bad eating habits. I am still afraid to chew so eat lots of milkshakes... therein, I believe, lies my problem. Time to switch to protein shakes.
We went to see a GP to try and switch to Trileptol but the Dr. was not familiar with the medication and would not prescribe something he was not familiar with so we are putting a referral in for a Neuro. I know Peter wants a break from the Carb and is thinking he will wait until the Neurologist appointment. I have just received word that we may be waiting up to a year to see one. Peter has stopped taking the Carbamezapine now because he cannot stand the side efffects. I am so worried about him and there is nothing I can say cause right now "It's my pain and I'll deal with it" is that attitude. I have a feeling when the pain gets worse he will start taking them again and so the roller coaster of life continues. I just thought I would let everyone know where we stand as I have not been on here lately.
He is tapering down right??
Shannon, I worry for your husband. In the early days of my TN experience, I stopped my meds and later, I tried to reduce (wean off) my meds either too quickly, too drastically or both---and each time saw me hit with a renewed bout of spasms. Early on, the spasms came a few weeks after stopping my meds but in time, my spasms arrived more quickly. Then, I'd need to wait until I got enough of my meds into my blood stream (or wherever it goes) before the spasms would subside. On an average, that wait would take a week to two weeks. In the midst of new spasms, I'd become very desperate for I feared they would never go away.
I am not a Doctor. I can only speak about my experience. And my experience was: I could not tolerate Trileptal at first but did not give myself enough time to adjust. I did take Neurontin (Gabapentin) from the very beginning. It was given me from free sample packs by my PCP and worked for me. When I first saw my Neurologist, he said: “Neurontin would not have been my first choice but since it is working for you, I’ll keep you on it.” In the mid-2000s, I actually enjoyed a two year grace period without spasms taking only a prophylactic dose of 600mg Neurontin daily. The golden years.
But as we all know, a fact that is confirmed here in our messages, each person reacts differently to the different TN meds.
So maybe, and I am not a Doctor, but maybe it’s worth a try to approach your husband’s PCP with a query about Neurontin (Gabapentin).
Just an idea.
But, if your husband has TN and has stopped taking his meds, then it may be just a matter of time before the horror show begins, again…and doesn’t go away anywhere near quickly enough.
Good luck.
Hi Min, yes he has tapered down. Thanks for the advise nonchiaro, and your first paragraph is exactly what he has been experiencing. He says he has no pain right now and thinks the nerve has settled down but time will tell. My Mom is moving into our basement suite we are building for her in June so hopefully the stress will not bring on another bout of TN, haha
Best wishes to you both!!! :) I hope things work out ok..
Shannon, I am sorry to hear that you have to wait for almpst 1 year to get to see a Neurologist. There should be another MD who your doctor trusts or get on the WEB MD site or use the Cleveland Clinic or another large Neurology center to help your GP feel comfortable prescribing this very effective nerve pain drug. I have been prescribed neurontin( gabapentin ) & lyrica over the past few years and Trileptal has been the best. Side effects are usually some stomach upsets so I take is with food, sleeping at night 1-2 nights per week, sleepiness so take it morning with coffee and when you go to bed and some nervousness(cant sit still for to long). It hasn't given me brain fog like the other meds. I have been on it for almost 1 year. Your husband may need meds to sleep like trazadone. Besy of luck getting your doctor to prescribe you Trileptal. God bless you & your husband.
Jim
How are you doing now, Lisa? I'm new to TN (sigh), and new to this forum, but wanted to let you know my experience with trileptal, which I've been on for several weeks now. About a month into using trileptal (having worked up to 600mg twice daily), I began to experience that merry go round feeling more and more frequently. It got to the point that it was lasting most of the day, and I dreaded taking my next dose. Then one day I began eating a salty snack (which I'd had to avoid until then, due to pain). The saltiness tasted SO good... and shortly afterwards I discovered that my dizziness had almost disappeared. My blood sodium levels had been in the "normal" range last time they were checked. But since that experience, I realized that I was taking in a lot less salt than I had been before the TN started, just because I couldn't eat some of the saltier foods I'd eaten before. Now I'm careful to not drink too much plain water. Instead, I drink gatorade. And V8 juice, a few small olives, other higher-sodium foods, etc., seem to help me out a LOT when I feel that dizzy/sick feeling coming on. Of course, this is only my experience. I should also mention that I don't have visible water-retention issues, and my blood pressure remains in the same range it had been. If you try this, be very careful, and monitor yourself closely. Check with your doctor, especially if you have high blood pressure, water retention, or other sodium related issues. Hope this helps someone else besides me!
Lisa (iamrite) said:
I am on it... my doctor assured me that the side effects would be gone within 3-4 weeks. I don't have those issues, though I read they are common. I have stomach upset and a feeling in my head like there is a merry go round even when I am sitting still. Fighting it right now. I will probably nap in a few minutes because of that.
I've been on Trileptal for 2 yrs now and currently at 600mg twice a day and occasionally I'll sneak in a 3rd pill when I'm having a bad day.
I used to be the guy that remembered every line of every movie and what actor played what character and had all my friends phone numbers memorized and crap like that. Now I'm the guy that says " you know that guy in the movie about the thing that did stuff..." My detail memory is shot to hell. Aside from that I have no other side effects that I've noticed.
I've been told that will all come back if I ever get off the meds but so far I haven't been able to even lower my dose.