Jane’s story

Jane, 42, began having seizures 7 years ago, just eight weeks after giving birth to her daughter. For years, Jane’s concerns that her seizures were related to her hormones were dismissed but she was eventually diagnosed with left front temporal lobe epilepsy and her specialists recognised the link to early menopause and hormones. Jane shares her story.

“I started having seizures 8 weeks after I gave birth to my daughter 7 years ago. This was 14 days before my first period started after pregnancy, and I instantly felt it was to do with my hormones as the next seizure was 51 days after that, and the same with the third, which was bang on my ovulation days of every other period. I also started perimenopause which none of the consultants acknowledged or listened to me about as they always said I was way too young, but I listened to my body and gut feel. I then had just over a year of being seizure-free and went through the regular perimenopause symptoms of hot flushes, hair growth on my face, low libido, night sweats and emotional tantrums.

After a year and a bit of no seizures, I started having absence seizures, which were happening after I got a hot flush feeling. I would always have a week of them and then nothing for two to three weeks. This soon became ‘my seizure week’. As my periods started to get heavier and all over the place, these weeks of seizures started to get worse and worse. They always started with a tonic clonic seizure in my sleep, which was horrific as I’d wake up with pain in some part of my body, including a black eye once and always a bitten tongue. I have also been diagnosed with lupus, which was initially thought to be what caused my seizures, but the lupus medication only made my seizures worse. I instead looked at ways to manage my lupus naturally, which was successful.

To begin with, the neurologists in my local hospital didn’t acknowledge the hormonal side of things. I asked to be transferred to the London epilepsy hospital. It was also recommended that I go to a clinic in London which specialises in hormones. Here they did two tests on me. The first was the DUTCH test which is an in-depth hormone test. And the second was a GUT test; a stool test which shows what’s going on inside your gut and intestines. Both tests were amazing as they showed that my oestrogen levels were sky-high and that my progesterone and testosterone were extremely low. The GUT test also showed that my body was overproducing oestrogen which it found extremely hard to digest and get rid of. When I then went to the London epilepsy hospital, they were amazing. They diagnosed me of suspected frontal lobe epilepsy and instantly agreed and acknowledged that I was in early menopause and that hormones (especially oestrogen) did trigger my seizures. They explained that they see a lot of women in this position. I literally broke down in tears on them as I finally felt that someone was listening to me.

They put me on medication which has helped, but sadly has brought back my lupus. It has been bad. I had a horrific flare-up at the end of April this year and ended up on a life support machine and in a coma for three days. This was not because of the seizure medication, but because I’d caught pneumonia with the lupus. I am out of hospital now and having to take some more medication, but I am feeling even stronger. I’m constantly staying safe with my food intake and look after my general health by exercising, taking cold showers every morning and meditating.

I’ve now gone through the menopause and am in post-menopause, which is great as my hormones are calming down massively. I am still having seizures, but I don’t have the ‘seizure week’ anymore and they only seem to happen every 9 weeks in my sleep when I’m having night sweats and other hormonal symptoms.

Epilepsy has affected mine, my partner and children’s life massively. I lost my career working in the film industry as a Crowd Second Assistant Director, a job which I absolutely loved. I lost my driving license. I’ve also lost feeling like I can be an independent mother and take my children out safely by myself. My children are young carers which I know will have a huge effect on them through their lives. I feel they should get more support and receive regular counselling sessions so they can offload rather than letting their feelings brew inside.

I sometimes feel like certain friends and family members don’t understand epilepsy, because when they see me, I look fine, and they have never seen one of my seizures. I feel like they just think we’re overreacting and there’s nothing wrong with me, but people have no idea what it’s like having to live with epilepsy and having the constant fear of when your next seizure is, especially when you have the responsibility of motherhood.

I want to speak about how the menopause has impacted me as I hadn’t ever had seizures before it all started, and it has completely changed my life around. It is important to me to share my journey as I’m sure there are many women who have had similar experiences. Listening to my body and gut feel has helped me massively and I have tried to stay calm and positive throughout everything. I always believe things happen for a reason and look at the positive side of things.”