Could these be focal seizures? Looking for experiences from people with similar episodes
Hi everyone. I’m hoping to hear from people who have been diagnosed with focal seizures/focal aware seizures, particularly anyone who has experienced preserved awareness, one-sided jerking, speech arrest, visual/perceptual changes or emotional symptoms.
I’m currently waiting to see a neurologist. My appointment has been a six-month wait, but my referral has now been escalated because I’ve been having these episodes more frequently.
I also have a significant neurological history. In 2007 I had two subarachnoid haemorrhages, and I have a history of a large left frontotemporal subarachnoid/arachnoid cyst, which was fenestrated (around 5 cm).
The episodes I'm experiencing tend to follow a fairly similar pattern.
Before the episode, more often than not, I experience:
- A feeling of being disorientated
- Perceptual changes in my vision, where everything can suddenly feel distant or somehow different from normal
- Blurred vision
- Nausea, and sometimes vomiting
- A sudden, quite distinct wave of sadness/emotion
I then seem to go directly into the episode.
During the episode:
- I have jerking/twitching predominantly affecting my right side/right arm
- The jerking usually lasts just over a minute
- I cannot respond to people during the episode, but I can hear what is being said around me
- On some occasions I have gone into complete speech arrest
- I remain aware enough to remember what was happening around me, despite being unable to respond normally
Afterwards:
- I can have slurred or impaired speech for up to around 30 minutes
- I experience extreme fatigue
- I often develop a headache
- It takes me some time to feel completely back to normal
I've also had episodes of involuntary jerking/shaking in the past, including an episode back in 2018.
I'm not asking Reddit to diagnose me — I know I need proper neurological assessment, which is happening. I'm mainly hoping to hear from people who have experienced something similar and can tell me what their own focal seizures were like.
I'd particularly love to hear from anyone who has experienced a combination of:
- Preserved awareness but being unable to respond
- One-sided/right-sided jerking
- Speech arrest followed by slurred speech
- Visual/perceptual disturbances beforehand
- Nausea or vomiting
- A sudden wave of emotion/sadness as an aura
- Significant fatigue and headache afterwards
If you've experienced anything similar, what did your seizures feel like? What investigations did you have (EEG, MRI, etc.), and did it take a while before you got a diagnosis?
Thanks so much for reading. ❤️