Lamictal and neurologist

Gran-Mal Seizures and myoclonic jerks for over 30 years as a result of being struck by lightning while serving in the Marine Corp. Have tried "all" of the medications and most made it difficult to do my civilian job. (School Administrator) The best advice I every received was to keep a diary and record everything I could remember happening to me before a seizure. By doing this I have been able to develop a warning system of oncoming seizures. (Same think as most people saying they can feel a headache coming on,) I can live with the myoclonic jerks as they only occur once or twice per day. The seizures while at work or driving are a different matter. (I have warning signs for seizures on the average of once or twice per week, and around one per month goes into a seizure.) Most of the medications other than Lamictal cover up my warning signs and I simply refuse to take them. I work very close with my family Dr. who understands my case better then most Neurologist I have ever had. Neurologist want to give any drug at a strength that will stop all seizures and that can and often does result in side effects that prevent normal live. Lamictal in low dosage, 25mg twice per day may make my seizures less sevier. Any higher dosages causes many of the side effects others have described on this site, but for me the biggest problem is that it blocks my warning signs of oncoming seizure. I get 20 to 30 minutes warning of oncoming seizures and many times can avoid a seizure by just stop doing what I am working on and taking a break and resting. If that does not work, I take two 10 Mg Valium and find a soft place to lay down, the valium will stop or lessen my seizure and I will sleep for one or two hours, and wake up. Sometimes I will have a seizure after taking the valium, but I am in bed or resting and usually under observation. My key has been to learning the warning signs of an oncoming seizure in time to get to a safe place and by always having the valium with me. We are all different individuals and our medical problems are different. Share everything you can remember with a Dr. you trust and attempt to develop warning signs of an oncoming seizure is the best advice I can give after over 30 years of living with a seizure disorder.

My daughter has had seizures for 20 years. She was on Depakote and Tegretol for about 15 years. We switched neurologists because of the continued seizures and involuntary movements that made her fall. She is now on lamictal (300mg) and topamax . Her seizures seem better, although she still makes the movements. But what is very different is her speech. She is speaking very nasally to the point I almost can't understand her and she repeats her sell constantly. Going to the neurologist next week.

I too have memory loss. It is humiliating not to recall events with friends and family and people I have been introduced to. I cannot conversations, movies and names of bands. I am 43 and have been taking this drug for seizures. The seizure disorder is gone due to the drug. I have gained weight, awaken with a severe headache on several occasions behind my right eye, feel tired and dizzy after an hour of taking the drug and blurred vision. I thought it was early onset of Alzheimer ( i forget how to spell it though I am in the medical field). My generalized Doctor and my Neurologist say this is not from the medication but from age and normal. The quality of life is not as I would like. I feel like I am missing out on my own life. Thank God I came across this blog! I have been researching this drug on the net and NOWHERE does it state this as a side effect. This is the only med I take.

I have a seizure disorder (Juvenile Myoclonic Epilepsy) that started in 2000. I was on Valporic Acid till 2005 at which time I gradually switched over to Lamotrigine (Lamictal). My reason for switching to Lamictal is because it is a lot safer for an unborn baby than Valporic Acid and I got married in 2005 so just wanted to be safe just in case. Valporic Acid controlled both my myoclonic jerks and my grand mal seizures. I was on 1500mg a day (6 x 250mg). With the Lamictal I started at 100mg/day and now am on 125mg/day (5 x 25mg). I take 3 in the morning and 2 in the evening, exactly 12 hours apart. If I take my doses longer than 12 hours apart, I start feeling the withdrawal. My body just starts feeling strange. At first I thought this way I felt meant I was going to start having myoclonus jerks or a seizure but I now realize that it is withdrawal I am feeling. I hate how my body, my life, is controlled by the Lamictal. I hate the withdrawal feeling I feel almost every evening, and it goes away once I take my evening dose. Other than that I don't really know of any side effects I have. I know I am on a really low dose compared to a lot of people. My neurologist and family doctor want me to go up on my dosage to control my myoclonus jerks better but I keep refusing because I HATE HATE HATE being on any psychiatric medication. I have been on antidepressants in the past (Paxil, Effexor, Remeron, Cipralex at different times over 4 years) and I have been through withdrawal from them. I am so glad to be free from those drugs but I tell you the withdrawal is HELL. But if it wasn't for my seizure disorder, I would GLADLY go through hell again to be off of Lamictal. Recently I tried lowering my Lamictal dosage in hopes I could be on a lower dose. I cut one of my 5 pills in half which took me from 125mg to 112.5 mg. The first 7 weeks were fine - some minor hardly noticeable side effects. But then the withdrawal hit hard - panic attacks and extreme nausea being the worst, but also very weak/no strength, anxiety, trembling, etc. After 4 days of that I went back up to 125mg and after about 3 weeks was back to normal. The only reason I did not stick it out was because my myoclonus jerks were increasing and I did not want to seizure. I have stuck out half a year of antidepressant withdrawal torture and I would've stuck out the Lamictal withdrawal if it wasn't for my seizure disorder. Great book that really helped me if you want to go off Lamictal is Your Drug May Be Your Problem - How and Why to Stop Taking Psychiatric Medications by Peter R. Breggin MD and David Cohen MD. This book really helped me during my antidepressant withdrawal. Dr. Breggin also has a website which is ****** I do have some mild problems with anxiety and I have become a little OCD but I think that is left over from my years of antidepressant use as they both seem to gradually get better over time (I have been free from the death grip of antidepressants for 2 years now). If you decide to withdraw from Lamictal please do it SAFELY. Have strong support. Do it very gradually. Know the risks. I for one may have to be on this for life which is discouraging. After I am done having kids (I'm a 26 year old female, been married for 4 years, hoping to start a family soon) maybe I will switch back over to Valproic Acid.....it would control my jerks better but who knows if it would bring on a whole 'nother set of problems, right?

As with others on this forum, memory loss is a side effect I'm experiencing with Lamictal. In fact, it's THE only side effect. I began taking Lamictal three years ago, and have maintained a dose of 300 mg a day. My short-term memory is practically non-existent. I have to write EVERYTHING down, and sometimes that isn't even enough. I've been known to forget what I've read only minutes before. I used to pride myself on my impeccable spelling, and now I'd say I'm at a fifth-grade level. In fact, I feel like I'm about ten years old. I've been taken to task over and over by employers who are frustrated with my poor performance. I've lost one job and due to lose another any day. Sure, my mood is stabilized, but for what good if I can't even support myself? I would definitely go off this medication if there was a good chance I would get my memory back, but I haven't come across anything in my internet travels that indicate this is a possibility!

I am on this medication for seizures. Besides all the other side effects being posted (typing, speech, spelling, forgetfulness, etc), I have EXTREME daytime sleepiness. To the point that I will not/cannot drive and have to stay where I'm at until I "wake up". I have been off work for 5 months, but had to go back for financial reasons. I work partial days and go home and take a nap, which the neurologist prefers I don't. Anyone experiencing daytime sleepiness (disorders)??? Thanks

I ran across this post as when I got really sick renovating a house I ended up a neurologist who recommended lamictal and that I was bipolar. My symptoms were bad neurological defect inability to concentrate intense burning headache, muscle aches, neurological pain in my arms and general stiffness and fatigue with twitching muscles, heart arrhythmia and anxiety. I couldn't understand how all of a sudden I had become bipolar however was under an extreme amount of stress (living in a half torn apart moldy house with no heat while serving as my own contractor under 300K of debt with no job as my arm pain interfered with my computer consulting practice ). I tried taking anti-depressants. My headaches got much worse and I turned a pale whitish yellow and developed fatty lumps under my skin called lypomas (wellbutrin) my friends (later) said I look like a cadaver. I felt like my symptoms did not match what was generally diagnosed as depression or bipolar but my regular doctor and neurologist insisted that I was depressed in some form or another. After another year or so of being really ill and trying different AD meds and finding no way out I was getting pretty desperate. I heard of a plce in Hawaii that a friend recommended cleans and unbllocks your interal organs using nothing but water. As a scientist and engineer and builder I was skeptical but felt like something like that might be the best path - it was a shot in the dark. I sold the house and dropped $5K on the treatment and trip to the big island It was like being let out of a cage my body turned from yellowish white to pink and healthy looking in less than 5 days. I dropped 20 lbs of the unrecognizable stuff out of my colon and liver. I believe I had a problem with cholestasis - stagnant liver bile that solidifies when you work too hard without drinking enough water causing bad digestion and absorption of nutrients leading to all sorts of problems incldung toxic liver and portal hypertension and jaundice. It's now two years later. The only thing that is wrong with me now is a small amount of fatigue and irritation in my frontal lobe when I work long hours at the computer. I continue the cleasing process and may go back. Contact me if you might be interested in the details. Drugs may be helpful to some and I may try an antidepressant to get me over the top but if you start medicating while your organs are not working well due to a lifetime of bad eating and lack of exercise ( or in my case working physically to exhaustion and then ordering out pizza and eating on the run for months on end) you might want to try another way. Oh and I'm not bipolar. Lamictal taken in the state of health I was in would probably have killed me. I'm now 41 and have a new life to look forward to and a whole lot wiser. There's a book called the amazing liver and gallbladder flush. It's the real deal.

45 years old, female, diagnosed bipolar II in 2006. On Lamictal for 2 years. Initially, very positive effects of Lamictal - felt "normal" and stable for the first time in years. Didn't notice any side effects. Gradually increased from 200 to 400 mg per day 6 months ago as I still experienced mood swings with a tendency towards depression. I have been on 400 mg/day since August 2008. It is difficult to say what are the side effects of the medication, and what are "natural causes". Since doubling the dosage, I experience memory loss and increasing cognitive problems (slow thought process, difficulty putting together coherent sentences in discussions, fumbling for words. I have spent more than one hour on this posting!). I sometimes wake up during the night drenched in sweat. It could be that I'm menopausal, but I find it unlikely. Mood swings have perhaps become less pronounced, but I would like to regain my mental capacity. I plan to cut back to 200 mg of Lamictal - and perhaps some day learn to live with bilpolar II without medication and a lot of help from my friends and loved ones.

My daughter, who is 22 yrs old now, has been on lamictal since January (seizures which came out of the blue after being ill for 2 years) this year. She ended up in the hospital for most of February with vomiting and diarrhea. She was first diagnosed with celiacs, then gastroparesis, all the time the neurologist is telling us it ABSOLUTELY CANNOT BE THE LAMITCAl...now, she has had some twitching and the doctor increased the lamictal from 100mg 2xs daily to 150mg 2xs daily. Well, the diarrhea, which she's already on all kinds of stomach/bowel medicine, never really resolved but now with the increase is worse. I just called and will take her back on Friday, but think we need to find a new doctor, Good luck to everyone. and God help us all.

My sister was started on Lamectal several months ago. She THOUGHT that she was feeling OK except that her mouth had begun twitching uncontrollably. Her family thought that she was acting "kinda weird". She saw a neurologist about the twitching and to make sure it was not Parkinsons Disease or such. It was not so the Psychiatrist put her on Cogentin. After less than a week she was not sleeping, had slurred speech and was running into walls. She was cooking spaghetti for breakfast and began seeing witches and angels and talking on cell phones that were not ther. We took her to the hospital and all tests were negative. The Cogentin was stopped, the hallucinations stopped and her balance improved but she remained with the following symptoms...she had difficulty mentally focusing on anything for longer than about 5 minutes, blurred vision and forgetfulness. I sent a note to her Psychiatrist and the Lamectal was stopped. She has been off of it for a few weeks now and says that she has large periods of "missing time" or amnesia for events of the past several months since she began taking the Lamectal. Her speech has returned to normal and she is focused again...

I am 32 years old, and still have acne. I have been taking it for almost 14 years now. I know that Lamictal causes skin rashes. I asked my neurologist if Lamictal causes acne. He said no. I will never be able to get rid of acne, as long as I keep taking it. I have been seizure-free for over 2.5 years now. Dad won't let me get off of it, and be on primidone only. It's more important to keep driving seizure-free, than to have clear skin.

I've been on Lamictal for 3 years, and it's started to fail. I was on a generally small dose for epilepsy, 100mg twice a day. Well, I started having these twitches that caused a car incident, so I had to go to the doctor to get the dosage increased. Well, I did that, slowly, and I was twitch free. I thought that this was great, I can finally rest easy. Also, for some reason after I increased the dose I was oversleeping. No severe side effects though. But then, just yesterday, I had what we believe to be a full fledged seizure during a shower. I missed my dose by 2 hours the night before, and luckily I was having trouble falling asleep (or perhaps unlucky), and I probably got 5-6 hours that night, which lack of sleep is always a bad thing with epilepsy. So, during my shower I started twitching, bad. I turn the shower off. Then the next thing I'm on the shower floor, and I see blood on the wall, though too dazed to make anything of it. My family hears the bang and comes down and tells me to open the door, but I yell out to wait until I'm dressed. Then I felt horrible. So obviously the dose increase didn't help, and the Emergency room doctor put me on Depakote plus the lamictal until I see a neurologist next week.

I have been on Lamictal for approximately 7 years. The product initially seemed to work a bit on controlling my seizure activity, and did provide a bit more confidence in social situations. At this point I was taking 400mg per day, and had little side effects other than the absent mindedness, and occasional problems with vertigo.
Briefly, about a year ago, I began having an increasing number of partial and general seizures, and was brought up to a dosage of 700mg per day. It was at this point that I began noticing what could only be called "hard-core" side effects. These included days where I was just totally confused, paranoid, suicidal, having an unrelenting feeling of not being able to breath, feeling bloated in my abdomen, and regularly being struck with a very irregular, very scary, rapid heart beat.
At this point, I am taking 600mg per day, and am still having most of these side-effects, but in decreased frequency. My neurologist never mentioned any of these possible symptoms, and doesn't seem overly concerned about any of the problems that I have mentioned in the past. With this in mind, it is somewhat relieving to see that there are others out there who are noticing similar effects.
If anyone can explain the difficulty breathing thing a bit more, it might help me wrap my brain (no pun intended) around this whole mess. I'm not sure if it's related to a decrease in blood pressure - I've been monitoring mine and haven't seen any irregularities. Or if it's related to a decrease in the amount of oxygen in the circulatory system due to the drug itself, or as a side-effect of the shallow breathing I have read about in other posts here.

lamictal controls seizures if you take it at the right time. i am on 200 at night and 200 in the morning plus epilim. sometimes i just sit and cry wen im trying to concentrate on reading books i have to study or trying to remember work i learnt at school which has left my brain. im failing school not matter how hard i try, i study all the time then the next day i have forgotten it. im so young and i havnt even started my future yet and i may have screwed it already. failing exams because i forgot wat i learnt the night before hurts so bad. its hard to say "hey everyone the reason i failed is because lamictal screws my memory" i know thats what it is. i was extremely intelligent before i started taking it, but now im a failure. i guess deep inside i know really im not a failure, but lamictal makes me one. : ( p.s add a constant hand tremor and sudden jerking movements every now and then.

I started taking Lamictal about six weeks ago for epilepsy. Now keep in mind, I was on Dilantin which worked great for 17 years and then suddenly stopped working. I have been in medication hell since then. First Topamax made me dumb as a rock. I would space out all the time. Worst drug ever. Then Keppra which was better in that my memory/ability to speak came back but I had these intense ups and down. I had rages constantly. Now I'm on Lamictal. So far, it's better than the Topamax and the Keppra, however the dreams are very intense as are the night sweats. I'm also experiencing much hair loss. Fortunately I have a full head of hair but I'm afraid I will eventually lose it all.

This is a total nightmare and i need advice! I was on Lamictal for a year and about six months into my health began to slowly deteriorate. It started with shortness of breath and heart palpitations and eventually attacked every system of my body. My symptoms are muscle pain, spasms and knots to the point that i can't turn my neck sometimes, joint pain (mostly knees), stabbing floating pain everywhere, headaches, frightening tingling in my extremities and a few times my entire body, sore throat, flu-like feelings, stomach cramps, bloating and heartburn. The list goes on. I have been off of it now for two weeks. My psychiatrist has never seen this type of reaction before and is not convinced it is the Lamictal. I have been to every single type of doctor and the ER twice, had extensive lab work, CT scan and two MRIs. I have been off Lamictal now for two weeks and am not feeling much relief. I am so scared and frustrated and please need advice. Has anyone else experienced this? Does it ever go away? I feel like I am literally living a nightmare with no-one to turn to for advice because no-one seems to know ANYTHING!!!!

I have been on Lamictal for 6 weeks, working up to 100 mg once a day for seizure control in addition to Topamax (100 mg) and Keppra (3,000 mg). As the dosage has increased, the side effects have become unbearably worse. I am so sick to my stomach, I can't eat. My headaches are horrible, and all I want to do is sleep. The only thing that keeps me from sleeping is my pounding pulse rate and shallow breathing... I'm still waiting on a phone call from the neurologist to see what I'm supposed to do about this.
I noticed several other mentions of a lack of ambition. I'm now noticing my own lack of will power. Good luck to all of you.

I have been prescribed Lamictal for seizures, and am currently taking 400mg daily, with my 300mg of Dilantin. Had horrible side effects this weekend-nightmares, exhausted, worsening depression, crying jags, difficulty swallowing. Has anyone else experienced mood changes for the worse while on this drug?

Took mostly for seizures, but have been informally diagnosed with Bipolar II.

Had tremors at night, almost immediately, marked anxiety, weight loss, strange heat flashes, severe headaches (already have a migraine problem), complete w olfactory hallucinations (could have been breakthrough simple seizures, or headache auras).

Felt detached from myself and others. But the most disturbing symptom of all was auditory hallucinations. I have no history of psychosis and this only happened after starting Lamictal. Basically I could hear a constant chirping sound, subtle, but loud enough at night to keep me from sleeping unless my radio was playing to distract me from the sound. Could it have been a new form of seizure? Maybe, but regardless, the sounds started at the time I started this drug. Plus, according to a psychiatrist, I had no signs of psychosis, just the unexplained phantom sounds. One last possibility: Maybe an inner ear problem. Still would like to look into that.

People are right when they say this is still an experimental drug. If I had known what I was getting myself into, I never would have tried this drug to begin with. If any of you have had auditory hallucinations on this drug, without a history of any sort of hallucination or psychosis, PLEASE respond here and let me know about your experience. Thanks!

I recently was given 200mg over the recommended pharmaceutical dose of Lamictal. My dr.'s partner prescribed this after a trip to the ER for a seizure to get me by until I could see my regular neurologist at the beg. of the week. The extra dose caused major blurred vision side effects, inability to walk, extreme sensitivity to light, and nausea. I am now at 400mg of Lamictal and starting Topomax with it so I hope this works. Any thoughts from anyone else taking this med combo?

I have been taking Lamictal for just over a year. Some of the side effects have been noticable for a few months, but others seem to just be appearing and getting worse. I have loss of balance and coordination, my vision is gettng worse, I have a hard time concentrating and finding the right words, I forget how to spell common words, I have short-term memory loss and feel spacey. I can always figure it out, but it takes longer. I began doing Pilates every day about 3 months ago and still cannot get the routine down and it is just as hard for my muscles as it was in the beginning. I can't seem to lose weight and have horrible acne on my face. I had 2 seizures before beginning Lamictal and am suppose to be on it for 2 years before trying to go off. Without insurance though, I am unable to do follow-ups w/ my neurologist and she seems unconcerned and unsypathetic to my situation, not giving me the time of day. She never even told me all of these side effects could develop, much less that they might begin long after I started taking Lamictal. Has anyone had these side effects after having taken the Lamictal for so long then stopped taking the Lamictal? Will these side effects go away after I stop taking it??

This is a nightmare. I have been on Lamictal 200 mg, tab in morning, for approx. 5 months. About 3 1/2 months ago I started getting muscles aches and weakness, muscle overuse problems, fluid retention ( like 12 pounds), stayed in a trance with very little short term memory. Thought it was everything but this medicine....I am an avid athelite, yes, even at 51. So, I blamed myself for not slowing down. Quick exercising totally, for 2 months, iced 3 times a day on leg muscles. Finally after making it to the summer without a mental breakdown, I went to the emergency room and a new internist to get checked out. Blood work, thyroid, hormones,ok.... Really don't care what they think , I can not walk, it hurts like hell. The Dr. did tell me to get off Lamictal....ok 7th day and I have some relief but it is not complete. Called manufactures, interesting, yes- these are side effects!!! But the studies are limited. Listen , unless you have seizures, get off this medicine... you read the full disclosure of side effects and then search yourself......It can ba a huge FOOOOOPA.....And you are the fool that will end up holdling the bag, not the manufacturer. Hopefully I will get better. Right now , I just trying to stay calm.

RE: 14875, 12/31/05
I have exactly the same side effects ... dizziness, light headedness, ataxia, weakness, migraine headaches and nausea. I walk into walls, lose my balance and stagger. I take 150mg all at one, at night. I've been taking it for over a year but just recently have started experiencing all the effects I just listed

my daughter is on Lamictal for epilepsy...petit mal seizures. She started to develop skin disorder that a dermatologist says is achne. She has a swelling of her lips that he cant explain. Her neurologist says she isnt sold on our feeling it is lamictal related... The dermatologist has her on antihistameme and some lotion for her face... it is around her mouth and down the neck to her chest. She is 18...
The breaking out on her face isnt red or blotchy...it is like pimples but no heads and more like gritty feeling to it....
any ideas??