My doctor told me to quit taking neurotin, and start taking trileptal 300mg to start and go up to 900mg. I am curious who has had experience with this medication and how they like or dislike it. I made the mistake of looking at the literature of the side effects of this drug and similar drugs and now I am frightened to take any of them. They can cause depression in folks that have a history of depression?? Isnt it bad enough that we may be depressed from this condition , and now the drugs for them can create another biological depression on top of the unfortunate situation natural depression?? I had a bout of depression 20 yrs ago, does that mean I am prone to it again from any of these seizure meds? And nobody told me that you have to wean yourself off these meds slowly or you can get a seizure even though you may have never had them in the first place? How have you all struck a balance between being informed and not freaking yourself out with all the possibilities of side effects out there?? I have only been taking 300mg of gabapentin for 6 days and I already had a sort of hallucination last night. I felt like I was flying, things were whizzing past me really quickly and I felt like I was in a video game with avatar cartoon characters. Granted it was the most fun I have had in a while, lol, but still it is a bit unnerving that I am taking something that is actually causing me to feel such freaky things so fast on it. Has anyone else had hallucinations on these meds?? Another side effect: "you should avoid direct sunlight?".... Lovely.... I imagine I cant have a beer or one drink on this stuff, since I have already hallucinated on gabapentin doing nothing out of the ordinary. I am curious on how long I will have to feel like an airhead zombie until my body will (hopefully) get used to it, and I can feel like my natural, normal, airhead self ,lol :) Thanks for reading and Love and virtual Hugs to all of you out there who are trying to make the best of your own personal nightmare that has befallen unto you. They should have an annual meeting in one city where everyone can gather so we can have a collective hug :)
Hi, I have been taking oxycarbazepine for a few years now and sometimes I still feel as though I am on another planet. I usually take 1200mg a day, but now I have up it to 1800mg because I have started getting permanent pains in my face. Things should start to settle down as your body gets use to them.
Hi Jason
Thanks so much for your comment. Its good to know that things eventually settle down as your body gets used to it... for the most part. Its interesting that on some days though, you may feel more out of it than others. I guess that is the same way for if you aren't taking any meds. Can I ask who your neurologist is?? I had to drive over 7 hrs to get this script for this med, it would be nice if I could get it from somebody near by. Have an awesome day Jason.
I used to see a Dr Sherington, but now I see a Dr Douglass. I hope everything settles down and you are ok
Hi, I was taking trileptal becasue my drs wanted me off tegretol because of the longterm side effects. I was on it for two months and had to come off I was getting headaches everyday. Face pain was resolved but the headaches where unbelievable. I loved not feeling pain but the headaches were just as debilitating. As far as the wackiness, that happens with all these meds, i have bad mood swings getting on or changing meds, but it will pass. I had to stop gabapentin for the same reasons i was hallucinating and getting dizzy and trying to finish college so that wasn’t going to work!! I have found a good neuro but the most help i have found is from my orofacial pain specialist! I have been so some good hospitals in nyc but the most help has come from those guys! They are doing research into facial pain and they really understand yay! Oh i should mention that i am weird when it comes to meds i have tried almost everything i have adverse reactions the only thing that has worked is evil tegretol and baclofen. Good luck, marilina hugs
Thanks so much Marilina for some really good advice. I am going to look into an oral face pain specialist. I will also keep the med baclofen in mind for the future. I have read that a lot of others take that as well. Thanks so much for your time in answering me. God bless you aka, Elvera :)
Just to agree with everuone else, your body will adjust. I take 1800 mg's of gabapentin and for the first month or so it was tough, but then slowly i got use to it. I still have pain 5-6 days a week, and somedays it's really bad, but I keep fighting. I see my doc in a couple of weeks and we'll see what he does. I also take ampatripaline, or however u spell it at night too, and hydrocondone when its really bad. Hang in there, look into the MVD, I'm pushing my insurance for that right now. fingers crossed
Hi Houston man,
Thanks so much for the reassurance that eventually I will adjust to this stuff. Sorry to hear that you still have pain 5-6 days per wk. I heard that impripaline or whatever, is good for the type 2 pain, the constant burning stuff. I cant get the MVD because my symptoms are caused by an injury to the nerve, no compression issues. Hope you get o.k 'd for the MVD, I heard its around 74,000 bucks so I can see why insurance companies try to deny folks , but keep at it, and eventually they will give in. Have a great rest of your thanksgivings day.
Sounds like you need a really good neurologist. Yes you definitely have to wean off meds. If not you can have serious side effects. My neuro said he wiil prescribe an anti depressant with the medications that cause depression if the pt. starts to show signs. There are certain antidepressants that work well with anticonvulsants. Some even help somewhat with the pain. Good luck!!
Have had MVD surgery in 2003 & Gamma Knife in 2010. Pain returned Nov 22, 2013. Cannot eat at all or brush teeth since Nov 29. On 1,200 MG of Oxcarbazepine/Trileptol since Nov 22 with no relief. New neurologist upped to 2,400 MG today. Will follow up in about a week with updates. No hallucinations. Side effects don't matter now due to the previous surgeries. I have heard many state their problems started every time when brushing teeth. How common is that for startup of pain.? 2 surgeries Mike. Good luck to all suffering with TN.
I am so sorry to hear about all your recent suffering Mkoop..... Can you try the MVD again? I cant even imagine not being able to eat because of pain. 2,400 mg of trileptol sounds like it is heading to the max level, but I'm not a neurologist. Please do leave us updates how you are doing. I'm not sure what you meant when you stated that the side effects don't matter much because of your two prior surgeries. Blessings to you and I hope you get relief soon!!