Anybody having problems with lamotrig... - Epilepsy Research...
Anybody having problems with lamotrigine if so what?
I alway thought Lamotrigine caused memory problems, but since I was diagnosed with Hughes syndrome, I know it's that.
What are your symptoms
My son had bad mood swings and a negative change to his personality when he was on lamotragine - had to take him off it 
It gave me servers migraines so I was taken off it. I am now on pregabalin which works well for me. Hope they find one that works for your son without too many side effects.
Thanks to you all for replying. I've been on 200mg lamotrigine twice aday but my temper seems to be getting worse and my short term memory is getting really bad.I just can't help wondering if it's tablets or the epilepsy.
I am also gradually increasing lamotrigine and as the dose is getting higher, am finding my memory loss is getting worse. Worth noting though is as my symptoms are improving (had chronic migraine and daily severe headaches for over 2 years) I am more aware of the seizures and this fact is making me feel increasingly upset and irritable. So may not be the medication.
Hi Boxgrove, My epilepsy has been treated with Phenytoin and Primidone (Mysoline) since 1969 and Lamotrigine was added in 1987, before it was licensed.
Only recently, due to tingling and numbness, have Consultants began to withdraw the Phenytoin and increase the Lamotrigine from 300 - 400 mgs daily. I had to revert back to my old doses due to severe dizziness upon waking in the morning.
I implore anyone with a health condition to research for differential diagnoses. For all the 44 years I have had epilepsy no doctor had ever checked my vitamin D status that when I paid privately was severely deficient at 34 nmols/L (optimum 75-125). Phenytoin depletes our bodies stores of vitamins B & D and other minerals (Calcium & Magnesium).
When vitamin D was depleted I had been prescribed antibiotics, for infections, and Prozac for depression. All because doctors have to prescribe drugs to support "Big Pharma" who bankroll the medical schools.
When I began to replete my vitamin D levels to 98.6 I was able to throw my asthma inhalers away and withdraw the Prozac.
Another private test proved positive for intestinal Candida (yeast overgrowth) that causes a host of problems, including TINGLING and NUMBNESS but goes highly undiagnosed. Orthodox medicine is failing to address the global epidemics of Candida and vitamin D deficiency, with dietary advice, in favour of pharmaceutical drugs.
That may be a harsh statement to some but the truth is out there. If you find comments on a forum that need clarifying search the Cochrane Library or PubMed. Coping with Epilepsy is also a great starting point.
Kind regards,
Will
Thanks will for your reply. You've certainly given me a lot to think about.I've never had a blood test but I have had sleep eeg and mri scan, this showed slight shrinkage in the hippocampus on one side.Don't understand wether this proves epilepsy or not.One minute my consultant says I've dot this because of the shrinkage but last time I saw him he said I was probably born with it
I was on lamotrogine for a month then things changed i lost weight and became allergic to it severe diarhea and sickness a rash from head to foot and the shakes needless to say i am not on it now
Oh crumbs I don't like the sounds of this drug one bit. This is the drug the Consultant now wishes to put me on. I have been on Phenytoin since I was 18 years old and am now 56. To be honest I have most reluctant to change over despite me having a few seizures. I must ask my GP to give me a blood test for my vitamin levels. Gosh its dreadful we have to do all this research ourselves, but thank goodness we are able to. Thank you for the very informative posting.
Just to say my seven-year-old daughter is on lamotrogine and so far it is controlling her frontal lobe epilepsy well, where other drugs have failed - and we are fewer side effects.
Peronally I Hav Had No Bad Reaction To It N Have Been Taking It For About 7 Years Now Im Now On 250mg Morning N Night
Hi Boxgrove - and everyone else. I have been on Lamotrigine for over 4 years now and it is controlling my seizures very well. HOWEVER, although I have fairly devastating long term memory loss - due, I understand, to the severe seizures I suffered before Lamotrigne managed to control them - I also have fairly bad medium and short term memory loss, which I believe, both from my research and what my consultant said, is due to the Lamotrigine itself. When my dosage of the drug was increased recently, due to a reappearance of nocturnal seizures, this part of my memory loss has got noticeably worse. As I said on one of our threads before, for me it is a case of deciding whether it is better to risk having to suffer the huge amount of severe seizures I was having, pre-Lamotrigine, or try to deal with the memory malfuntion!! I am frightened to try swapping from Lamotrigine to something else in case things go haywire again!!!
The only postiive thing I can say here is that it certainly helps a lot to have the support and input that I get here on the forum - it makes me feel much less "alone" and also more "normal"!!!
I can relate to this post. I was diagnosed with epilepsy at 13. At first I would have myoclonic seizures all the time. I would have them in class and even during tests. With the combination of Lamictal and Keppra, they seem to be under control. But now I have to suffer the side effects of both medications. I too have bad memory loss and have difficulty concentrating. I am a high school senior and I am a great student. I carry a 4.3 GPA, I am the class president, and I am involved with a variety of clubs. As time goes on, everything seems to get worse and worse.School used to come easy to me, now I am struggling to keep my grades up. I find it difficult to focus in class. I get home and have no motivation to do my homework. At certain times if I’m reading something, I have to read the same sentence like 3 times just to understand it. I am also being affected outside of the classroom. I get home and nap almost everyday for 3 or 4 hours. I stay in my room most of the time either watching Netflix or playing a video game. I just sit in here and feel bad about myself and feel depressed. I tell myself things like “just go do your homework” “go out and socialize with your family”. But I have no motivation or energy to do it. It’s like I just don’t care about anything anymore. I go to school and put a happy face on everyday but when I get home I feel the same way. I do feel good when I hang out with my friends however. I used to work out, get homework done ahead of time, and spend time with my family. Now it’s like I’ve just become a hollow shell of what I once was. I have been accepted to a variety of prestigious universities and I’m about to make a final decision. It has always been my dream to go to med school and become a doctor. But with all those symptoms and side effects *which for me are primarily feeling weak, no energy, memory loss, difficulty concentrating, insomnia, and depression* it seems impossible. If my dosages are lowered or I switch to a different medication, I fear I will have the myoclonic and full blown seizures frequently again.
I don’t know, I guess I just feel lost..
It does help to come on this forum and read what other people are saying. I also found some solace in writing this post.
Thanks everyone for your replies much appreciated. Ive haven't been on this site for long and you've all been really helpful. It's really nice to talk to people who understand.
Totally agree with you ecossaise it's nice to feel that you'll not alone.We are all sort of in the same bunch
my husband takes this and has for about 10 years , he is completely different person , he is annoyed all the time , sweats a lot , has a terrible memory and tells me the same things over and over , if i let on he had told me already , he blows up and shouts so i pretend and listen again , its horrible and to cap it all he is still having fits (one this morning when i was out so we were luckly he did not hurt himself , first time i have not been with him ) , he has started to swallow fast in his sleep over and over if i wake him , he shouts and says he is not doing it , will not change the medicine as says would i rather him fit more if i mention it , doctors say nothing when i say other than nod
Thanks for your reply, I am acting the same way. I heve even it my husband and I really thought te deserved it ! I feel really bad about it even though I don't know what it was all about. I haven't had a tonic clonic seizure for 11 months, but my focal seizures have increased. My consultant has moved my appointment to next month I don't know why but i'm wondering if he is going to give me a second line of medication to try as well.Thanks again
Well I am totally P'd off with my Consultant who said to me face to face that he would like to put me on this Lamotrigine to receive a letter that was sent to my GP and I was copied into now saying that he advises Valproate (is this the same drug or different?) he goes on to say in the letter that the likely side effects are hair loss and weight gain. Well thank you very much. I am just about got my hair in good order because I have a thyroid problem so am on thyroxine, and am desperately trying to lose weight because of my osteo-arthritic knee needs replacing so have to lose weight for that. So this weekend I have been more than depressed. I have done some research and came across an article I the newspaper the headline being "The NHS is being forced to spend an extra £44m a year on a single epilepsy drug, after a pharmaceutical firm increased the price almost 24-fold.
The full report can be found via this link telegraph.co.uk/health/heal...
So, in my case I am going to refuse the new drug and insist on staying on Phenytoin. 
Hello thanks for your reply.I don't think you could have phenytoin as a main drug because that is considered as a second line drug
Thank you Boxgrove, I have been on Phenytoin for nearly 40 years. In that time I have had 6 grand mal seizures roughly, would have to look back at my medical history file. I would consider that pretty well controlled, dont you?
Yes I agree with you! At the end of the day it's up to you isn't it.That's pretty good 6 grand mal seizures in 40 years.I personally would go with your instinct. Do they ask what you think or do they tell you what they're going to do?
Hi,
I had an awful reaction to carbamazepine and lamotrigine was what they switched me to, I have to say for me this drug has been a miracle. It's not perfect but it's so much better than carbamazepine. I currently take 75 mg at night and I have a few minor side effects. I have awful short term memory, which makes it difficult for me at school with exams and what not, also I get really bad night sweats and hot flushes during the day. I will also feel a bit nauseous at times and I will sometimes get a headache. I don't see these side effects as severe, especially compared to my effects in carbamazepine. Also, a few friends if mine are taking lamotrigine and they think it's brilliant. My doctor told me very early on, that every AED has side effects, but you have to make the decision as to whether the drug is taking over your life or whether it's just a subtle annoyance. All the best x
I've been in Lamotrigine for about 6 months and I've had a plethora of side effects. Memory loss, acne (face and body), blisters on my fingers, bones in my upper body hurting, neck pain, back pain, chest pain, dry eyes, ringing in ears randomly, random diarrhea (didn't eat anything out of the ordinary and wasn't sick), becoming anxious out of nowhere, insomnia and possible muscle wasting in my right arm. Drugs like this are complete bulls*** and should be illegal but we all know that isn't going to happen, big pharma pays doctors about $60,000 on average per year to push pills. They might help for one thing, but you might feel like complete sh** as a result.
After discussing this with my neurologist he tried to get me to switch to keppra but that's not happening. I've heard nothing but nightmare stories about keppra.
I've only had 1 seizure and that was after a day that I only had 4 1/2 - 5 hours of sleep, work a 12 hour shift mostly standing on my feet, drank 2 of the big monster energy drinks and had maybe only 2 16.9 fl oz bottles of water all day and the seizure happened at 2:30 a.m. the following morning. I hadn't even gone to sleep because of the energy drinks so I was up for about 21 hours. Fatigue/dehydration/energy drinks, all of which have caused seizures in people with no prior history and they never had another one. But the neuro doctors insist that's it's from my TBI 10 years ago, ruling out any of these conditions causing it, so they keep trying to make me take pills. On top of all this, I've only had to take 25mg twice a day and I have no seizure activity, no auras, nothing.
Once cannabis is legal medically (CBD oil), I'm switching to that. It has maybe 5 side effects total and none of them are to the severity of all these other opiates. Maybe you all could give it a try.
Anyways, I wish the best to everyone that is dealing with any form of epilepsy and I hope that you find your peace with it,
Jonathan
Hi. I've been taking lamotrigine for a number of years & I have no side effects my dose is 275mgs twice a day. I also take zonegran (zonisamide) 400 mgs & no side effects.
i took it for like 4 days and was instantly taken off of it because it caused me to fall over, i couldn't walk or breathe and i saw double in blue and yellow. it took me longer to re learn how to walk than i was even on Lamotrigine. it was terrifying.
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