I've been seizure free for 3 years on lamotrigine. Last year there was a sudden drop in my blood serum levels for lamotrigine. The dose was raised to an effective range and I felt great. Now the level has suddenly become toxic so the dose is being reduced. I now have extreme exhaustion everyday. Has anyone else had this problem with lamotrigine?
Hi everyone! Thank you so much for your support and help with this issue. I'd like to give you all an update. I'm doing much better now my lamotrigine dose has been reduced to 125mg at night and 25mg of amitriptyline was added to help with the trigeminal neuralgia and fatigue. I am also now taking iron supplements for iron deficiency. This mix is treating me well. I have energy and I feel happy again.
I have not had any significant problems in the years before the last 3 months. Since Xcopri was added as a 4th anticonvulsant, I have been seizure free for 9+ months. However, what has happened is unexpected dizziness spells with some being to the level of making me collapse. My neurologist worked me down from 600mg per day to 300mg over the last 3 weeks. However, ever since I have been down to 300, the dizziness spells have been every day and on Monday I fell to the floor (on Monday when I was in the hallway just outside of my urologist's office. And today I had to go down to 1 knee earlier in the day and tonight to both knees during a stronger spell. My neurologist has already lowered it to 200 mg per day (starting tomorrow), Hopefully, this works to get rid of the very strong dizziness.
You definitely need to listen to your body. I don't think I get more sick from my seizures. If anything I have side effects from my medications, feeling pain from headaches, and "recovery pain" from my seizures.
I am only starting on lamotrigine but I have been taking trileptal and my sodium has put me in the hospital ER more than once for low sodium levels now I take sodium pills and have been diagnosed with hyponitremia (chronic low sodium) I'm hopeful that l'amical will work better for me.
I am surprised they haven’t checked your liver enzymes and blood levels in so long, but I guess my Dr doesn’t order them unless I have a complaint. But then, of course, I only see him once a year for maintenance. (I will start seeing more of him if I am having nocturnal seizures again.) Also, I may have the myoclonic jerks from time to time, but I’m on a much higher dose (300mg 2X). This combination of meds has been working for me for almost 10 years now, so I’ll deal with them!
Also (I don’t have to tell you this) our bodies change over time and become accustomed to a certain med until some change in metabolism or tolerance or something, and all of a sudden it’s a new paradigm. So it is a combination of things when it comes to to this disease. But I would definitely be asking my doctor to run a liver panel/ function tests for their own records, as well as yours! Good luck and I hope you have a wonderful holiday season. Stay safe and seizure free… K
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