Diagnostic tests after tonic clonic seizures - what to expect?

[RQ0803]

First time poster here. I’ve started experiencing tonic clonic seizures over the past year and have been referred to a neurologist via my work health insurance. I’d really appreciate an idea of what to expect next in terms of diagnostic tests and appointments.

I had my first tonic clonic seizure in July 2021 during a time of huge stress (working 80 hour weeks, just moved house, young daughter). It scared my husband to death and he called an ambulance, but they monitored me for a few hours and sent me home without a referral. I had another one in May 2022 but this was smaller and I didn’t feel as ill afterwards. I then had 3 big ones in the early hours of Saturday morning, each lasting around 10 minutes and leaving me with a horrible headache which lasted all day Saturday. I still feel a bit odd today (brain fog, very low mood, and strangers look familiar to me even though I couldn’t possibly know them).

As you’d expect it’s all very scary, and more so because I’m now starting to see that the symptoms of the “panic attacks” I’ve experienced for as long as I can remember actually match those for focal aware seizures (strong deja vu, nausea, racing heart, feeling of unreality).

Any positive stories about a smooth diagnostic process and/or seizures being controlled by medication would be hugely appreciated.

I’m feeling pretty low and very bad about my husband and 4 year old daughter witnessing the seizures, as having seen footage they were pretty traumatic.

[Hidden]

Don't wait around any longer. Forget about referrals. Go to your nearest neuro outpatients (as an emergency patient) and get a full examination. Get an MR. Don't leave before you get a full neuro examination and MR. You've a right to both. If you don't get the CD + MR report, at least get the radiologist's card and go back next day. He/She will have recorded the report the same day. Get at least one neurologist's opinion on the hospital's assessment. Let them decide which meds you should be on. Not your GP.

[GillyA]

Hi, I responded yesterday to the question just before yours about how I live with epilepsy, I hope this helps.

Worth adding that my diagnosis pathway was ok. First seizure in the U.K, CT scan on the day MRI and EEGa few weeks later. All clear and told watch and wait.

Next seizure when I was working in Brussels, tests all clear, but told two seizures = epilepsy.

Since then I returned to the U.K., now have a fantastic specialist at the National Hospital for Neurology and neurosurgery in London. My health has got more complex, but he has supported me through a global career and a fairly major crisis. Epilepsy is scary and unpleasant, but for most of us it can be managed. Hope it will be for you

[Blue_Lion in reply to GillyA]

Hi - I developed tonic clonic seizures 18 months ago out of the blue and it was very scary. I injured my arm and later my shoulder and had to have an operation to pin my collar bone back together, so it was a lot to take in and I won’t pretend there weren’t days when it felt very tough. My advice is talk to your family and friends and the charity helplines are great too. You will need a lots of tests - just get them done (MRI, EEG, bloods, cardio). You need these to get you on the right medication and right diagnosis. It’s a little bit of trial and error on the medication. The first one didn’t work for me but now I’m on one that has kept my seizures under control for nearly a year now so fingers crossed! Having epilepsy never goes away but it does become “background noise” to your life once it is under control if you are lucky. Take care and keep positive.