Heated forehead and "bouncy" brain

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Hi,

My wife was diagnosed with Epilepsy almost 8 years ago. She has only ever had one big seizure preceded by many absences over the previous 2 years. She takes 1500mg of Limotrigine per day. Since the diagnosis she has suffered what she can only describe as a "bouncy brain" she says it feels like a heart trace looks.

During these episodes she is alert but we have noticed that her forehead heats up. The "bouncier" her brain the hotter her forehead gets. She also suffers some loss of balance while this is happening. We have spoken to her neurologist about this he just says you are epileptic get used to it.

Would anybody have any ideas as to what the actual cause is or is it just a symptom of her epilepsy and something that she will have to get used to.

Thanks in advance

Brian

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  • Posted

    Dear Brian,

    Neurologists are a breed onto themselves. I am on the epileptic drug called Lyrica. It controls the seizures. Your dear wife is experiencing the strange effects of her med. I also have strange body feelings etc...I just go with it because having full blow seizures is not having any quality life, if not very little. Switching meds still has it's strange feelings or even worst side effects. Been there a few times. Lyrica works for me at present. No one gets" use to being epileptic". I loose my balance somewhat too. I use a walker for this vary reason. Also I have trouble with what the name of things are due to the med but I find my way by trying to describe what it does etc... life is certainly not a bowl of cherries because of the pits inside. I'm here to talk.

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  • Posted

    Brian, A headache may be a side effect of lamotrigine but concerns me is the high dosage your wife is prescribed, 1500 mg? Besides lamotrigine, I also take levetiracetam (Keppra). A few years ago when I started having trouble, I was on 450 mg of lamotrigine and 1000 mg of levetiracetam. The Dr increased the levetiracetam to 1500 mg. I asked him if we could increase the dosage of lamotrigine instead, but he said the maximum dose of lamotrigine is 500 mg. I would try to find another Dr. to TAPER her dosage down over time. Maybe like me, she may need to take more than one med to control her seizures.

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  • Posted

    By the way, is her Dr a neurologist?

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    • Posted

      Hi Steve, yes she is under the care of a Neurologist. It is he who prescribed the Lamotrigine. My Wife has only ever had the one major seizure (January 2012), although, she had 18 months of absences which were dismissed by her GP as "it's all hormonal, you're at that age". If she hadn't retired I would have complained to the GMC. The Neurologist was less than impressed by her GP and said he would have helped with a complaint had she not stopped practising.

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  • Posted

    My heart goes out to you and your wife. I am in the throws of trying to find a cause...Might I suggest if you can get your neurologist on board, to have a Mapping of the Brain done. It is not a traditional MRI or an EEG. It is intensely thorough and worth it. I am struggling to get a Neurologist on board to do so.I have similar issues, awake seizures, though now not convulsions, but my eyes do a roller coaster ride or blurry eyes. My speech is impacted and weakness galore. Let me know if can get that done. Medicines thus far do not really keep me in control. The other is to keep positive and not go into negative thought patterns. Use humor. If you folks go to church, a place of worship, lean into God. He has been my peace.

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  • Posted

    Thanks Heyyou, She doesn't see her neurologist until next year now, her appointments are annually. It is certainly something to ask about though when she does go. Her spirits remain high to be fair to her, she won't let it grind her down.

    Thanks again.

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