Potential epilepsy/undiagnosed

[hannahla]

Hi all, just wondered if anybody here has experienced similar to me.

I haven’t been diagnosed with epilepsy but I suspect I may have it.

I’m a 23 year old female, and since 2017 I have been experiencing migraines with aura but I’ve never had a painful migraine after or if I do it’s less than an hour or just a slight pain, I noticed a pattern with them being around the time I ovulate and/or before I start my cycle, which after researching shows it could be linked to rise and falls of estrogen and progesterone. However along with these auras I’ve been having some unsettling symptoms as well. For as long as I’ve been getting a period I’ve had irregular cycles, I’ve had scans and all sorts and they can’t find what is wrong. Despite having a lot of symptoms of PCOS (unwanted hair, irregular periods, painful periods, difficulty losing weight) however I do have a slightly elevated testosterone and prolactin but the doctors reassured me they were only very slightly elevated. But it’s clearly enough to be messing my cycles up. However, I’ve noticed when I have an irregular cycle I experience these very alarming moments of intense de ja vu which seem to be related to dreams and things I’ve thought about/seen during the days prior and in my head I struggle to make sense of what it is. I get very warm in the face and get a dull headache afterwards. I’m still fully conscious and can have a conversation but because I’m panicking I’m not fully engaged in the conversation. They last for about 10 minutes and leaves me feeling very on edge for a few days as I’m just worrying. I only experience them with an irregular cycle and when I can feel my hormones are all over the shop, the only time I haven’t experienced my migraines/de ja vu moments were when I was pregnant in 2018 but it unfortunately ended in a miscarriage, however after the MC my cycles were very regular and I had no migraines or de ja vu moments. But after about 4 months they became irregular again and once again the migraines and de ja vu started again. I’m worried it’s a form of epilepsy as my symptoms sound similar to other people experiencing simple partial seizures.

The doctors seem to think it could be migraine/anxiety related due to the fact I don’t experience other symptoms of the seizures apart from the de ja vu (my pupils don’t dilate, I don’t get confused, and I can still hold a conversation even if I’m not fully engaged due to feeling overwhelmed). I also experience ‘fleeting’ moments of de ja vu for about 2 days before I get a migraine and again after research I’ve found that that is common, but it doesn’t explain these more intense moments which last longer and how a visual migraine doesn’t follow in the days after.

I’m very tired of feeling on edge and if anybody can relate to my symptoms and the link between the menstrual cycle and what they’re outcome was, it would be a huge help. I’m sorry if it’s not appropriate to post here due to being undiagnosed but I don’t know where else to seek guidance due to not knowing anybody with epilepsy and doctors saying it’s likely just anxiety/migraines.

Thank you

[EpilepsyAction1 Partner Epilepsy Action]

Hi

I'm not sure from your message whether you've been seen by an epilepsy specialist (neurologist).

The symptoms of some types of seizures can look and feel very similar to many other things, including anxiety and migraines. It can be difficult for doctors to tell the difference between seizures and anxiety or migraines. That’s why it’s important to seek the advice of an epilepsy specialist. The diagnosis is made mainly on a description of what happens, rather than the results of tests, such as an MRI or EEG. However, EEG and MRI tests may still be helpful.

If you believe your symptoms have been misdiagnosed, you could ask your GP to refer you to an epilepsy specialist for a second opinion. We have more information about getting the right treatment and care here:

epilepsy.org.uk/info/treatment/getting-right-treatment-care-for-epilepsy

We have information on our website about different seizure types, as well as anxiety, epilepsy diagnosis and catamenial epilepsy (when changes in the hormones that control your menstrual cycle cause you to have more seizures).

epilepsy.org.uk/info/seizures-explained

epilepsy.org.uk/info/health-matters/anxiety

epilepsy.org.uk/info/diagnosis

epilepsy.org.uk/info/women/your-periods-menstrual-cycle

I hope you hear from others on this platform, as sharing information and experiences can be a good idea. Can I just check you also know about our other services?

We have our virtual support groups epilepsy.org.uk/virtual-groups. We have our forum4e online community forum.epilepsy.org.uk/, and we are on Facebook facebook.com/epilepsyaction and twitter twitter.com/epilepsyaction.

Finally, please feel free to contact our helpline team. You can either email [e-mail] or phone the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Tuesday 8.30am until 7.00pm, Wednesday to Friday 8.30am until 4.30pm and Saturday 10.00am until 4.00pm.

Regards

Jess

Epilepsy Action Helpline Team