Focal Onset Aware Seizures/ MRI brain

[deflatedbirthday]

I'm hoping someone with some experience might be able to put my extremely anxious mind at ease.

I posted recently about a strange smell (not unpleasant, no real pattern of location or duration) which then became associated with episodes of me becoming extremely tired, sleeping for 20 mins or so and then being unable to speak for 1-2 minutes, open my eyes on some occasions and most recently being unable to move my arm. These episodes are becoming more frequent, occur in the evening or upon waking in the morning and are often associated with the smell (although I do get the smell without the episodes also). On Sunday I felt extremely unwell. Covid negative. I slept on and off all day and had four separate episodes.

My GP asked for advise from the neurology department. A consultant has requested an MRI scan under the epilepsy protocol.

For completeness, I have recently been diagnosed with fibromyalgia and hyper mobility syndrome (both of which have come as a complete surprise to me really as I associated my symptoms with some other conditions I have). I have been started on Amitriptyline 30mg at night. I'm sleeping better than I have for years.

I have done some googling research and thing that stands out most is focal onset aware seizures.

Does anyone have any experience of something similar?

Also what can I expect from an MRI under the epilepsy protocol?

I'm worrying my self sick.

Hopeful bump

Hi,
I was diagnosed with epilepsy after suffering a grande Mal seizure when I was 5 months pregnant.

Prior to that, I had 4 weird episodes where I had been sitting in work with my colleagues when I suddenly had this awful feeling wash over me. My whole body went hot, I felt like I was about to burst in to tears. It felt like something was taking over me. I had a really strong memory of something, however I couldn't remember what the memory was once the episode was over. There was also a really strong smell. Afterwards, I had no idea what they had all been talking about. I felt so confused. I tried to type up some emails after and all of my words and sentences were jumbled and I couldn't concentrate all day. Also felt really tired. I felt really embarrassed because I thought I must've been having some sort of panic attack, so I somehow managed to hide these episodes and thought I was going nuts.

Then I had a grande Mal seizure and had the MRI scan. I can't remember it in great detail but it was basically being put in to a big "tube" machine (really sorry, not good at explaining) 😂. And they just played some sounds and asked if I was ok every now and then. Wasn't anything too dramatic fortunately.

The doctor put me straight on epilepsy medication once I mentioned the previous episodes. It took about a year and a half to finally get them under control. I have only ever had the focal awareness seizures since but also one incident where I felt the seizure coming on and when I came round, I was still in the same position as before but I had lost awareness.

Not sure if any of that is useful, just thought I'd tell you my experience!

Also, like you - I was unable to speak on some occasions. Or I would stutter or jumble my words after having one of these seizures.

Hope everything turns out ok for you.
Just wanted to reassure as well that if it is that, it can normally be controlled with medication. Fingers crossed for you.

I was also sent for an EEG test. Perhaps that is something they will mention as well

@mamawho99

Thank you for your insight! It's very useful.

I'm just worrying myself to death about it all and it's probably not helping the situation! My blood pressure feels up and down. I keep seeing black spots. I'm sure it's just me stressing about it though.