Lamotrigine (Lamictal) causing disabling side effects?

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Hi Everyone,

I'm posting on behalf of my mum and If anyone has any thoughts, ideas, suggestions or advice we would be so grateful.

My mum had her first seizure around 5 years ago, but due to a reaction to the medication, the doctor and neurologist decided she was relatively low risk and didn't have to continue to take anything. She remained seizure free up until a year ago. First she started to get migraines that were accompanied by stoke like symptoms (which went back to normal in a couple of days) but this was soon replaced by seizures. After the seizure she would have right sided weakness accompanied by speech and memory problems. Again, this would return to normal within a couple of days.

After the last seizure she had, her doctor put her on a low dose of Lamotrigine 50mg. A couple of months later, she displayed the usual pre seizure symptoms but where as within a couple of days, she would bounce back, her mobility on the right side and her memory/speech was still slightly effected.

Over the last year, she has had no more seizures but is now unable to walk, unable to use her right had and her memory and speech is severely effected. She knows what she wants to say but the words don't seem to come out. This is all beyond frustrating for her and as her daughter, it's breaking my heart to see her like this.

She has had MRI scans on both her brain and spine which has shown nothing. After some research, I noticed that her symptoms could possibily be a side effect of the Lamotrigine? The doctor and neurologist have no idea what could be causing her issues so have advised her to reduced the dose to 25mg and gradually taper off completely.

She has now been taking 25mg for 3 weeks and her speech and memory is the worst it's been. My question is, could it be possible that the reduced dose is causing this in a 'gets worse before it gets better' type way? I might be clutching at straws but everything only seemed worse when she started the Lamotrigine and if so, the side effects of it has basically disabled her, not the seizures!

ANY thoughts or encouragement welcomed! Thank you 😃

Lisa

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6 Replies

  • Posted

    Hi,

    Having been on 600mg of Lamotrigine for the past 7 years, I can say with almost certainty that at such a low dose, what is happening will not be being caused by the lamotrigine itself. Although there are side effects from lamotrigine, the ones that you have noted are too severe (i.e. not being able to speak at all) to be caused from lamotrigine.

    It may pay to check if it isn't something like MS or another Neurological issues

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    • Posted

      Hi Rebecca, Thanks so much for your reply. I had come across the symptoms of MS and thought it could be that but she has had full imaging of her brain and spine which came back clear. It's certainly not something the neurologist is looking at but maybe worth bringing up. I can't remember the name of the medication she was first prescribed for seizures but that was also a very low dose and she had a very sever reaction to that one too. At the moment, only Lamotrigine is in question, it was actually the pharmacist who linked the side effects.

      She is able to speak but unable to have a flowing conversation - i'm googling other potential neurological conditions daily to try and get some sort of alternatives but very much hoping it's just a rare reaction!

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    • Posted

      Hi, I hope all goes well with your search towards finding out what it is.

      I highly doubt that it is this, but I do know someone who had a less severe but still very bad version of what you have written that your mother has, and that is atypical migraines (maybe just something to ask about).

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    • Posted

      Funny you should mention that, she has suffered from migraines and a couple of times she had stroke symptoms, confusion, memory loss, loss of function and ended up being taken to A&E it was because of migraines. Again, these symptoms would wear off after a couple of days and she always was given an MRI scan at the time which would come back totally clear. I always assumed it was the seizures (which she has only had 3) but might have to delve back into all this....

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  • Posted

    Hi,

    Having been on 600mg of Lamotrigine for the past 7 years, I can say with almost certainty that at such a low dose, what is happening will not be being caused by the lamotrigine itself. Although there are side effects from lamotrigine, the ones that you have noted are too severe (i.e. not being able to speak at all) to be caused from lamotrigine.

    It may pay to check if it isn't something like MS or another Neurological issues

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  • Posted

    Dear Lisa,

     My daughter also has had a long road in traveling down with me with my seizures too. I am on a drug which controls them but as my daughter has said manages them. My drug at times make it difficult to find the words I want to express myself, a side effect. My daughter tells me to describe  what I am trying to say. After a seizure there is recovering time as if the brain is rebooting itself. Affects speech, balance, memory etc....hours or days. Been there. Dosage, type of medication all have their side effects. Sometimes worst than the seizures themselves. 
    	 Straws are at times all you can clutch to. I'm 65 years old and the body is just not what it use to be. We go down hill per say.  I'm on Pregabalin 50 mg twice daily. I might of spell it wrong but close. When you love your mum, it's hard to see her suffering so. It's hard on my daughter's nerves too.
    
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