Lamotrigine

[Charing]

I contracted VE back in 2019 which damaged that part of my brain which primarily to memory. I have recently changed medication from Keppra to Lamotrigine. Has anyone experience of the latter in terms of side effects?

[Gandalf2]

A google search brings up the following:

Skin rash

You should let your doctor know about this as soon as possible

Headache

Drink plenty of water and ask your pharmacist to recommend a suitable painkiller. If the headaches continue, let your doctor know

Common lamotrigine side-effects (these affect less than 1 in 10 people)

What can I do if I experience this?

Back or joint aches and pains

Ask your pharmacist to recommend a suitable painkiller

Feeling sick (nausea) or being sick (vomiting), diarrhoea

Stick to simple meals - avoid rich and spicy food. Drink plenty of water

Feeling dizzy, tired or sleepy

-Do not drive and do not use tools or machines

Dry mouth

Try chewing sugar-free gum or sucking sugar-free sweets

Feeling agitated or irritable, difficulties sleeping, feeling unsteady or shaky

[Paula-38]

Hi Charing,

I had HSV Encephalitis and Status Epilepticus at the same time, just after my first birthday back in the 1970's.

I was then given Diazepam with Tegretol and Mysoline until I was 10. Then I was hospitalised for six weeks while they changed me over to Phenytoin Sodium (formerly known as Epanutin) and Clonazepam .

I believe that Phenytoin does the same as Keppra but with less side effects. I have never really had any trouble with my memory, mine is more to do with my processing speed, poor attention span, poor Executive Functioning, anxiety, Obsessive Compulsive Disorder -OCD, paranoid thoughts and clinical depression. I have tried a similar medication called Pregabalin for OCD and after 7 years of taking it, the more they increased the dose the more side effects and I found out it was illegal to use it because it can also be addictive like Diazepam, they call it the new valium now.

However I had but I had to come off it and just stay on my antidepressant which is also used for anxiety and OCD.

I suggest that you ask your doctor/neurologist to consider Phenytoin.

[Paula-38 in reply to Paula-38]

I have never had Lamotrigine but I believe it is similar to Pregabalin but less addictive. I'm not a doctor, just one of the Encephalitis Society's volunteers and by next month I have been doing it for two years.

Please don't hesitate to ask me any questions as I am always happy to help anytime.

[Elle2090]

Hi Charing!

I was on Keppra and Lamotrigine at the same time for about 2 months. I was weaned off Keppra first. I found weaning off Keppra hard as it had more effect on me. I've been on Lamotrigine for the last year and slowly weaned off it bit by bit up until last week when I've completely stopped taking it. I hardly had any side effects being on Lamotrigine when I was on it and weaning off it was easier then Keppra for me anyway.

[Charing in reply to Elle2090]

Thank you very much for your most helpful reply. I had some disturbing symptoms with the Keppra which, so far, I have not experienced with the Lamotrigine. I am hoping that I will be able to be weaned of the latter in due course. How long were you on it before being weaned off it ?

[Elle2090 in reply to Charing]

Happy to help I was on Keppra for 3 months before starting to wean off and Lamotrigine I was on for a year in total. I know I was on Keppra for a lot less time than you, but even within that small time frame it really affected me, especially when weaning off.

As weird as this sounds I would have liked to have continued to stay on Lamotrigine for the rest of my life cause I was so scared to come of it due to the trauma of the seizures I experienced but doctors were adamant with coming off it asap. With Lamotrigine I had pretty much no side effects while I was on it and while I was weaning off it.

Wishing you all the best when it comes to weaning off both

[Charing in reply to Elle2090]

Hi Elle2090, I can’t wait for the day when I am off drugs completely but my consultant can give me no certainty that the seizures will not come back. I will therefore stay on the Lamotrigine.I am seeing him next month and hopefully he will start me on a programme to reduce and then stop the medication

[Elle2090 in reply to Charing]

My hope for you is that you will come off these meds asap! Please keep us updated on your progress 🙂

[Remos in reply to Elle2090]

Hi Ellie - good to know you are now completely off of the anti- seizure drugs. I am also being put on Lamotrigine whilst been weaned off Keppra. I also hope to be weaned off of Lamotrigine at some stage so I’ll be drug free - but I still don’t understand when/if this will be. I was just wondering how they decided it was safe for you to be weaned off all drugs completely? Do you know how this decision gets made? Thanks

Remos

[Remos]

Hi Charing,

I’m in a similar position. I’ve been on keppra for about 7 months but suffer from depression, anxiety and pins and needles. The neurologist has now decided to wean me off of keppra whilst moving me on to Lamotrigine over 16 weeks. Only started this week. I’d like to come off all drugs altogether at some stage but we still don’t know when/if this will be. I have an EEG booked for later this week which should help with this decision.

I’ll keep you posted with progress. Please keep in touch.

Remos

[Charing in reply to Remos]

Hi Remos, it is comforting to hear that you suffered the same symptoms as me. Please keep me posted on progress and I will do the same. I am completely off Keppra now and getting positive improvement

[Remos]

Hi Charing - good to know things are improving for you. A few questions if you don’t mind which would help me. How long were you on keppra for? Did you experience any issues being weaned off and how recently did you stop? Hope you don’t mind me asking it’s just that my anxiety is off the scale at the minute and I seem to worry about anything and everything at the moment.Thanks.

Remos

[Charing in reply to Remos]

Hi Remos, I was on Keppra for 18 months and have just been weaned off it - 2 days ago. Whilst taking the Keppra, I suffered from depression, anxiety, fatigue and , from time to time, unsteadiness, especially when walking. That has now almost gone away.

[Remos in reply to Charing]

Hi Charing - I’m now half way through my transition from Keppra (1250mg x 2 / day) to Lamotrigine (100mg x 2 / day). Having partly built up the Lamotrigine I’ve just started reducing the Keppra. Have to say I don’t feel great and just wondered how you got on with the transition. Thanks.

Remos

[Gandalf2]

Hi Charing, there's a site with medicines info here: drugs.com/mtm/lamotrigine.h... site also has patient reviews, on the RH side.

There are 1215 reviews for Lamo, here's one:

"Lamictal (lamotrigine) for Bipolar Disorder:

“I’ve taken this drug Lamictal for about 7 weeks now and guess what? My life has turned so positive! I am a way happier and stable human. I no longer lash out or get mad over any little thing that would trigger a manic stage.

I’ve been able to deal with stress without freaking out, literally can't believe it! I highly recommend this to anyone with bipolar!!!! Good luck and God bless”