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Hello,
I am wondering if anyone can tell me their experiences with the side effects of different medicines, particularly Lamictal and Topomax.
I have been on Lamictal for about 2 (going on 3) years now and since then I have had a lot of difficulty with my memory as well as other side effects that I didn't have when I took Tegretol XR. I take 300 mg twice a day of Lamictal.
I really have never felt controlled with Lamictal, have become fairly clumsy, am SUPER tired (moreso than when I was on the Tegretol), have migraines, and NO MEMORY. My short-term memory, especially is VERY bad. I had fogginess and tiredness with Tegretol, but I don't remember it being nearly this bad.
Now, I am having significant auras multiple times a day, every couple days, and had a breakthrough partial complex last week so my neuro and I are talking about switching meds. Apparently the Lamictal levels in my blood are too high and I am showing signs of toxicity b/c of the way I am metabolizing the meds, so increasing my dosage of Lamictal isn't an option. My neurologist suggested putting me on Topomax for control purposes and to help with my migraines which I was totally fine with until I started reading some of the posts here about Topomax.
Topomax sounds. . .scary. I am terrified of switching to a medication that will not only sustain my clumsiness, tiredness, and memory loss, but also increase depression, make my hands tingle, give me extreme weight-loss, etc., etc.! The brain-function issue and the tiredness issue are huge for me. . .I am in the middle of writing my thesis and need all the brain-power I can manage. I am so tired of being tired and like I can't function. While my friends go to work at 7, then exercise afterwards, go out to eat and to a concert all in one day (!). . .I go to work or school and am so tired that I can't do much of anything else. It's terrible. If I am already struggling with that while being on the Lamictal, will Topomax be worse? Now I feel like both medicines aren't good choices for me.
Does anyone have any advice about this? Has anyone out there ever had positive results with Topomax? Is there ANY anti-convulsant that DOESN'T cause such horrible cognitive fogginess and tiredness???
Sorry for such a long post, but any help or advice would be very much appreciated.
~JLSB
Recent Comments on this Discussion
I have simple-partial seizures and take Lamictal and Keppra. My seizures are only partially controlled with medication, but the incidence of seizures is much lower on medication than off. Lamictal is a drug that is typically started at non-therapeutic levels and then scaled up. This is due to a severe potential side-effect which I fortunately did not have. For me, once I reached the therapeutic dose level for Lamictal, I did notice a significant decrease in seizures, but it turned out to be a honeymoon effect (it lasted for a limited period of time). I've noticed an increase in memory problems since going on Lamictal, though it's difficult to conclusively identify Lamictal as the cause (since Lamictal initially reduced seizures, my memory may have temporarily improved, followed by a reduction in Lamictal's effectiveness, which might have led to an increase in memory problems, etc.). I am going to talk to my doctor about going off Lamictal completely to see if the extent of seizure-control that I have right now is coming from Keppra alone.
By the way, about Keppra -- it is definitely working for me, albeit not perfectly. My doctor had me go off Keppra (in a controlled environment) and there was a significant increase in seizures. I don't think I have the psychological problems that I've heard some people on Keppra complain about -- increased irritability, anger issues, etc. -- but that's just my own opinion!
I take 300 mg of lamictal per day. I don't have memory loss. But if I have forgot to take my pills I so start to feel really out of it. Like clumsy, lost and tired. I have also been taking this ex for 3 years. My Dr also has me on keppra and I think Lamictal and keppra are working good for me.
Ask your doctor about Nuvigil. It is tradionally used for shift worker adjustment or for those with narcholepsy. I am also on Lamictal. In the morning I take a very small dose of Nuvigil- the smallest tablet is 50mg and I take half of that. It helps me with staying awake during the day. Thereby I sleep better at night.
I'm on Topamax for my PCs and it is controlling them well. However, if I increase my dosage above where it is now... I am completely stupid, lethargic, angry, depressed, have migrainy headaches (my migraine headaches worsen and occur more frequently), and increased GI upset.
On the higher dosage - I have utter difficulty in word recall, can't name names of anything including kitchen appliances, thoughts disappear as soon as they enter, forget simple basic math, and my vision blurs really bad. I also have lost a lot of hair while taking it and I can overheat pretty quickly and not realize it at first (though luckily it's Fall now and the heat isn't so bad any longer).
I've not lost much, if any, weight while taking it BUT I take a much lower dose than the norm. It is holding my PCs fairly well and while I do have short term memory and cognitive function dysfunctions still... they are relatively minor and mild in comparison to the higher dosage I was on at one time.
Lamictal, I took for something else once and within 2 weeks of starting it... I developed massive itching inside my mouth, nose, ears, and eyeballs really bad. I did not develop a rash or hives BUT I did have the horrible itching and as the dosaging continued... the itching grew worse. I also had a real bad case of lightheadness while taking it. The doctor that prescribed it to me, at that time, had me stop it for fear of the SJ Syndrome.
I have been on topamax for around a year and a half and I love it! I was on Keppra and Lyrica before topamax and they worked, but not as well as topamax has workd for me. However, I have heard the Keppra is good for people with Grand Mal seizures, which I do not have.
I do not have any of the side effects you listed besides weight loss, but I was overweight to begin with. I stopped losing weight at a weight considered normal for my height (my BMI now 22%) and I can eat pretty much whatever I want without gaining anything.I consider this to be a positive, actually. I am not tired, or at least any more tired than I ever was before. I feel more awake than I was on Lyrica or Keppra. I can tell you my memory is not as sharp as it was before I started having episodes, but it is not significantly different and I cannot blame it on the topamax. I was in college still when starting topamax and ended both semesters on the Dean's List, so I feel like for me it did not have side effects listed. I am now down to only 1 episode a month maximum. I sometimes go a month without an episode.
HOWEVER:
There was one time that I did have side effects. This was when the doctor raised my dose TOO FAST. Then I was tired, very tired. Since I had been on the medication successfully before I called and told him I was having problems and he said the dose was being raised too quickly and to slow down. It look me maybe 3-4 months to get to the correct dose. If you are on it and start to notice you feel weird then call your doctor. I went to the neuro every few weeks while starting it. Also, note that it can cause kidney problems if you take it for too long. Because of this I take potassium EVERY DAY and try to drink at LEAST 8 glasses of water a day.
On a side note, I recommend caffeine if you have migraines, which you have probably heard before, but it is very true. I consider my 2 shots of espresso a day to be migraine preventative.
I'm just coming off Topomax for the very reason of not being able to think straight, having no memory and I think it's called ataxia (sorry about the spelling) where you can't come up with the word your after.
I have been 100 times better since dropping my topomax dose and going onto the Lamictal. My family have also noticed that I now seem to have more interest in life. It was like the topomax made me lose interest in everything around me, and tired all the time. I am alot more alive on the Lamactil..
Only down side is I seem to be putting back on the weight I lost on the Topomax.
Good Luck Finding whats right for you
Why haven't the neuros tried other meds?
Neurontin, Trileptal, Zonegran...I hated Topemax (Stupimax) and Depakote. I had the worst STM loss, aphasia and apraxia. I remember being out to dinner, holding the fork and knife in my hand and not having any damn clue what do with them while I stared at my chicken! No thanks! lol
John