I am taking 150 mg in morning and at night. I am still taking
150 of Topamax as well as .5 clonazepam, then 100 mg of Topamax at night as well. The trileptal is making me very nauseous and i am dropping everything. I also am urinating frequently. Has anyone else had these side effects at first?? My body will get used to these I am assuming. Please cement yor thoughts!
I tried Trileptal and it did not help my ATN at all. Do you have ATN? (Atypical Trigeminal neuralgia?). I take 50 mgs of Topamax for migraine prevention. It is a helpful med, but an annoying one. I was originally on a higher dosage…I think 125mgs. I found that dosage intolerable. I just couldn’t remember anything and was spaced out. When I got below 100 mgs, I felt MUCH better. I am taking a low dosage of Desipramine with a low dosage of Topamax and it has helped my ATN. I do have some word finding difficulty, but not too bad. I also use a compounded cream, that I rub on my right side of my face, where my pain is. I’m getting much improvement and I’m thrilled. Anyway, your SE’s from Topamax should improve over time. Drinking a lot of water might help. But, I would consider talking with your doc and lowering the dosage and adding a tricyclic medication like Desipramine or Elavil (low dosage).
I understand the Tricyclic meds have a very good reputation of helping folks with ATN. Topamax may also be helpful. Unless you’ve tried everything else, I’m not sure I would stick with the Trileptal.
Trileptal was the first med I was on and it worked. No pain at all but..... The nausea became really bad. I could handle it with ginger candy. Ginger candy really works for nausea but you have take small bites and suck on it. There are some really good candy out there. Unfortunately, I started vomiting every other day and had to come off of it. I couldn't drive, couldn't read, couldn't do much of anything because it slowed ALL the neurons down. It was awful but better than the pain. I was on it for 3 months and had to switch. After that I decided to have surgery as soon as I could be approved for it. You usually have to have been on a couple of meds before a neurosurgeon will even talk to you. I changed over to Nortriptyline. It works but I recently had to increase it because the weather was triggering the pain. I take nortriptyline, tramadol, klonopin and a lidocaine gel that I use on my face and on my gums to deaden the nerves. With this combo I am doing ok and can actually think again. But when it stops working I may have to go back on trileptal or another drug that makes me stooooopid. If the vomiting hadn't been so bad I may have stayed on it longer even with the side effects but it is very debilitating. Nortrip is a tricyclic as Nomad recommended. If it doesn't get so bad with you, you may want to stay on it for awhile and see if the side effects are something you can handle but if not, find another combo of meds. If you get on epilepsy sites they can give you a lot of info since this drug was to meant to treat epilepsy. It was just a fluke that it worked for TN. I know surgery is not the answer but I'm planning on it anyway. A few months or years of not being in pain is worth the risk to me. As long as the Nortrip is working I'll stay on it.
Because of these drugs, you'll notice here a lot of misspelled words, bad sentence structure etc. It's the meds and everyone is really good about it because they understand that it's hard to think on some of these meds. I don't get embarrassed if forget the difference from their and they're. And I'm kind of rambling..... it's the meds.
I couldn't tell you, I just don't remember. but it was pretty high up there. Not everyone will have the same side effects I did. But the medication took the pain away. If I have to I will go on it again if the pain gets really bad. I consider it my crisis med. If I just vomited once a week I might have stayed on it but everyother day was ridiculous.
Hi, I'm so glad I happened to see this group. I was reading your responses and was blown away. I saw Dr. Casey , one of the authors of Striking Back in nov of 2013, and he gave me 300mg of trileptal to start. I wish he would have given me 150mg and split it in the morning and night, I didn't even know that was an option. Well, all I did was take one on Thursday and Friday late afternoon, I had a headache and I just started throwing up like no tomorrow. I just thought perhaps it was a migraine, but I thought it was odd, because usually migraines are only on one side of the head, and not the entire head like mine was... Then I read your response that it made you throw up, and things started to click... yeah, I hate that drug, but like you stated, if my pain ever gets really bad and if it helps, I may have to take it....