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Memory Loss/Side Effects - Lamictal vs. Topomax

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 

Comments

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

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.

 

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 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.

I too was just on topamax and man let me tell you it kinda made me feel like an extra in a george romero flick ( a zombie) so i got together with my doc and we just started me on a switch to keppra. I stated the step down the ladder and i feel like a new man again. while on the topamax i did see a definate decrease in migraines and also in simple partial episodes, but it was like cutting off a hand because you had a hang nail. then again you don't really know unless you try. most of these meds might work for some and not for others. That being said any body ever had any significant side effects on keppra? hope you don't mind if i ask in someone else's forum. Med changes are kinda scary, its the evil you know versus the evil you don't i guess. Anyways i think you should give it a go, but maybe wait until after you write your thesis if you think you could get the paper out the way you are in case it gets worse.

I currently take Lamictal, Topamax, Keppra XR, and now Vimpat. I know...but surgery is not an option. I take the 300mg of Lamictal twice a day and have fatigue with it, however, the Topamax is what drives me insane. I take 75mg twice a day and I have problems completing a sentence and remembering what I wanted to say. I was on 100mg twice a day and was starting to step down but I started having an increase in auras and partials so I stayed at the 75mg dose. It's frustrating though because I was once an eloquent speaker and now I have to practice what I want to say in my head before I speak or I can't find the words. It makes me very nervous. I always have a notepad with me so I can remember what was discussed at meetings and what my assigned tasks are because I seriously cannot remember at times. It's so frustrating!!!

The new medication Vimpat has worked amazingly well. I haven't had any auras or breakthrough seizures since I've been on it the last 11 weeks. I'm no more fatigued or mentally exhausted as I was before I started taking it so things are pretty good. Maybe look into it because it's for partial seizures.

I presented my thesis while I was Dilantin, Lamictal, and Topamax. Stand strong for a 'lil while longer and then make a med change. You're used to what you're dealing with now and having to do research, analysis, and a crucial presentation while adjusting to a new medication regiment may be too intense.

Let me know if I can help out in any other way.

SLD

hello,

 I have been on Keppra for the past year ( I had been on tegretol for many years,with very good control-(-until two years ago) I was initially put on 1,000 mg. a day--then2,000--3,000 now 4,000 --I have never been a depressed person in my life (until now) It has also made me really tired ( I have always had an abundance of energy) I also have been very grumpy and I am so afraid people aren't going to want to be near me. I really don't want to go on anti-depressants so have been doing everything I can to help with the depression ( multi-vitamins, extra c, omega 3,extra b) I have only been on the4.000mg. for a couple of months (I really didn't notice many side effects on the 1,000 and 2,000 level)-Good Luck finding the right medicine (tegretol controlled my seizures for many years with very few side effects and a very small dosage--unfortunately, things changed)

I am 60 years old and had a seizure, my first, two and a half years ago. It was diagnosed as epilepsy, and I was put on Topamax for three months. Then, my doctor switched me to Lamictal, 300mg per day, which I have been taking since.

This is my story:

First, I want to state that I am taking a veritable devil's brew of medications aside from lamictal-allopurinol and colchicine(for gout), eltroxin(hypothyroidism), normiten(blood pressure), and proximil(prostate). I believe that this combination may be unique and apply only to me, but the side effects I have encountered are so consistent with all the group discussions, blogs, and personal stories regarding lamictal, that I am sure that lamictal is the culprit here. Additionally, although I had been on the other medications for a few years prior to taking lamictal, my symptoms only started after I began taking it.

Memory loss: Short term memory loss is almost total and very embarrassing. It manifests itself either by not remembering someone's name after meeting them or at the beginning of a telephone call when someone says their name. I know this can be explained by lack of concentration(and I will go there later), but even when I make an effort to try and remember names, I can't. More troublesome is misplacing things-putting something down  and then 5 minutes later having no idea where I put it. Again, concentration/aging, but these things started only after the lamictal ingestion.

                      Mid/long term memory loss is especially alarming. It goes from not having any recollection of having seen movies or television shows(mid term), to having visited numerous places all over the world and having zero recollection of having been there. Even when I see photos of myself at these places, as far as I am concerned, never been there. Venice, San Francisco, Vermont, Edinboro, Montreal, Bucharest-there is a long list.

These things have been getting worse as time goes by.

I also have been suffering from anxiety attacks, loss of coordination and balance, and lack of concentration.

Loss of vocabulary and sense of direction, hand tremors. All since I started taking Lamictal.

I am an ex-professional athlete who excelled in high school and  college, and was an honor student in high school and graduated from college as an English Literature major.

The symptoms have occurred gradually over the last two years and as they proceed at a snail's pace I didn't connect them to medication but to getting older. I think now that I know better. My next step is going to my neurologist and demanding an altenative medicine because to continue this decline in my mental/physical condition is just plain stupid.

What have I learned from all this? Be aware of what is going on, and always try to stay on top of your condition.

It has been very good to unburden myself, and if I have helped anyone, even one person, I will be very

happy.

 

 

Hi, I was wondering if anyone is taking Topamax for bipolar to control their manic? I was given it for migraines not knowing that it also helped bipolar. With research I discovered that it did.

Thanks in advance, Madalina Bucharest

Hi all,

Finally I seem to have an answer to my memory loss. I had a head injury some years ago and as a result developed temporal lobe epilepsy / complex partial seizures. I tried all sorts of meds but had serious side effects, which was affecting my work and home life. Finally settled on Lamictal and all was fabulous but in the last 4 or 5 years (on lamictal for 12 years) I've noticed a serious deterioration in my memory. I would ask my wife the same question within 10 minutes of each other, not remember work related stuff and was nearly fired last year because of this. Also has anyone encountered the phenomenon of hearing what people are saying but not understanding what they are saying. This has been a major problem with me, especially when my wife says that "I don't listen" to her. Concentration is non-existent.

 I'm a scientist by training so the effects of Lamictal are seriously hindering my work. Simple calculations I can no longer perform and I have to read user manuals for equipment I have used day in day out for years. Not being able to find the right words or spelling had appeared in the last year. Thankfully "spellchecker" does its job when writing reports !!

 I went to see my doctor, who just said it was part of the temporal lobe epilepsy and age. What meds do people recommend ?.

 Thanks.

I am having basically the exact same problem. Lamactil was working great until last May. I had a seizure and since then memory, vision and coordination issues almost daily but it is spotty. If I have a bad day I can't see and can barely walk. On a good day I can usually get by and can even run. I also am having insomnia. Which is bad as sleep deprevation sets me off. I have been out of work almost a year and it's driving me nuts. If anyone has found a doctor that can handle this please let me know.

I don't know about the insomnia, but when I took Keppra XR with Lamictal XR and Topomax all at the same time, I never felt sleepy and I could think perfectly clearly. I can't really help you very much with information about what type of seizures i am having because I am hard to diagnose and am going to have a VEEG soon, but the Lamictal in my experience made me happy and alert and the Topomax makes you sleepy and reflective. They balanced each other well in my case.Since my Lamictal was XR, by the nightime dose of Topomax, I would fall asleep easily.

nzquail

Hi guys, 

I was on topamax only and it made me lose weight, not sleep etc.. my life was a nightmare on it and didn't stop the seizures, so I went off the topamax on to the Lamictal. Lamictal didn't 100% work so the topamax got added in with it, and I haven't had a seizure now for the first time 24 years. Though I had problems with Topamx as a singular med, it balanced out the side effects with the Lamictal for me, it freaked me out going back on topamax. Everyone is different and what works for someone, won't work for someone else. I had 4 medication changes within 3 years having a big emotional toll on my life and affect my family etc, it was worth it (looking back). Im now a mature student (after 20 years of no education) studying at University in Christchurch New  Zealand, (where we are going through the aftermath of a major earthquake).

Memory loss - is a big worry for me since Im studying but i find the more you use your brain eg. study, reading the better it helps with being able  to pronounce words etc. Even though we have cognitve difficulties from medications - excerise your brain! it helps. Don't let the side effects control your life. 

For me, I live in the moment, and when I see my grummy teenage smile, I smile and value that moment. 

 

 

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