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[Trelissa]

I was diagnosed with epilepsy at 12 and am now 59. I have two daughters with fetal valproate spectrum disorder. I have coped fine with epilepsy, I was young enough for me to learn to walk in step with it. My mum always stressed about it, as when I was diagnosed, the Doctor told her that he had hoped it was a brain tumour rather than epilepsy.

My daughters are the worst side effects of my medication (sodium valproate) as I was heavily overprescribed. for 18 years, I went from 1000mg to 4500mg a day. When I was pregnant with my fourth baby ( that lived), I was put up to 5000mg for 14 years. I am now on lamotrigine and lacosamide at a much smaller dosage.

One of the hardest things I have had to deal with is the weight gain. Obesity itself causes many health problems, and I do not know what side effects have been caused by the medication. The specialists bounce about, sidestepping these questions. I had bowel cancer but lost no weight, and thyrotoxicosis and hypercalcemia were spotted late in the day by accident as I was not losing weight. I am always slammed when I refer to sodium valproate and my dosage and its effects on my weight; the effects of this on one's mental health are so huge, and the attitude leaves me not able to trust my doctors. - unfortunately, I have been prescribed twice over- prescribed which does not help

There needs to be more understanding of weight gain and its relationship with medication. The effects of this are rarely found in the PIL.

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(1) Posts - Epilepsy Research UK | HealthUnlockedfects of medication

[Summertime23]

Hi Trelissa,I am a similar age to you and have had epilepsy all my life after incurring brain damage, when I contracted whooping cough, at 6 weeks of age.

Like you I've spent alot of time on Epilim. 17 years ago, my neurologist told me she wanted to put me on it. I told her I didn't want to be on it due to cognitive side effects I experienced on it when I was in my 20s. Despite this she wouldn't back down & after a year of holding back I eventually gave in. The first thing that happened was a huge rise in my appetite that led me to an increase of 20+ kgs. I pleaded with my GP to help me reduce my appetite but she didn't want to help. Neither did the neurologist. I decided to reduce my dosage in an attempt to help myself. My appetite reduced but after having a major fit at work I had to increase the Epilim again. This time my appetite didn't increase but instead I gradually developed discoid lupus which my hair dresser first noticed. I had a biopsy that confirmed the diagnosis. This is still a major issue for me.

As you mentioned the issue with weight gain is truly problematic. It is associated with a number of medications but this side effect is not taken seriously by the medical profession.

Obesity contributes to Type 2 diabetes, sleep apnea, high blood pressure & joint pain just to name a few. Each of these conditions then leads to the need for further medical treatment & medication. Big Pharma are rubbing their hands with glee. They see sickness of any sort whether caused by their own meds or not as a revenue earner.

I wish you all the best with managing your epilepsy and all its side effects.