u/dandelion2131

Hi everyone,

I’m posting because I’m trying to work out whether what I’m experiencing sounds familiar to anyone here, especially people with focal seizures, photosensitive epilepsy, or seizure/migraine overlap.

Quick background: I developed severe ME/CFS as a teenager in 2011/2012 (following a concussion and viral infection) and became extremely unwell for years. I lost the ability to walk between 2012–2019 and was bedbound for a long time. Over the years I improved massively with pacing/rest/time and regained a lot of function, although I still deal with chronic migraines, autonomic symptoms and fatigue.

My migraines used to mainly happen around storms/weather changes, but over the last couple of years they became chronic and I feel like I’m in a constant migraine state.

I’ve also had repeated episodes, usually in the evenings while watching TV, where I suddenly get palpitations, feel fearful or detached/spaced out, and sometimes fall or lose awareness briefly. I had cardiac tests to rule out any heart issues for my palpitations and dizziness, all game back boringly normal.

Then in April this year I had what doctors believe was a hemiplegic migraine. Sudden left sided weakness/limp, severe neurological symptoms, extreme light/sound sensitivity etc. MRI/CT were clear. Since then my nervous system has felt extremely sensitive.

The biggest thing has been severe sensory sensitivity. Shops/supermarkets became overwhelming, TV motion started making me feel strange and spaced out, and bright lights became unbearable.

Then in May I started having repeated seizure-like episodes, often clearly triggered by light or visual stimulation. The first major one happened while watching TV. Since then I’ve had episodes involving:
eye rolling/fluttering
lip smacking
reduced awareness/unresponsiveness
left facial twitching/spasms
feeling very clammy/confused afterwards
coughing/shaking after coming round

I ended up in hospital because they were happening repeatedly. Overhead lights repeatedly triggered them there too, including during a CT and when doctors shone lights in my eyes. Removing my sunglasses could provoke symptoms almost instantly.

Routine EEG captured dizziness and left facial twitching but showed no epileptiform correlate. There was intermittent temporal/posterior slowing but no epileptiform activity. Neurologist currently thinks these are more likely non-epileptic/dissociative attacks rather than epilepsy, this has all felt quite confusing as I don’t feel there’s a mental health connection, I also feel perfectly relaxed when these come on, rather than distressed in any way.

I’m struggling because some aspects feel VERY seizure-like to me, especially the impaired awareness/lip smacking/eye rolling, but the strong sensory trigger pattern and clear EEG seem to point away from classic epilepsy.
Has anyone here experienced:
focal seizures triggered mainly by light/visual overload?
normal routine EEGs despite convincing symptoms?
migraine evolving into seizure-like episodes?
attacks with automatisms/lip smacking but no EEG correlate?
severe post-migraine sensory hypersensitivity?
Also interested in whether anyone found things that genuinely helped reduce attacks or calm the sensory overload side of things.

I’m also waiting for a longer EEG/video EEG.

Thanks :)

Hi everyone,
I’m posting because I’m trying to work out whether anyone with hemiplegic migraine has experienced anything similar to what’s happened to me recently.

Quick background: I developed severe ME/CFS in 2011/2012 as a teenager and became extremely severe for years. (Following concussion, and a viral infection) I lost the ability to walk completely between 2012–2019, was bedbound, couldn’t dress/feed/wash myself , couldn’t tolerate TV/light/noise properly etc. Over time with pacing, rest and just time, I improved massively and regained the ability to walk/live independently again, although I’ve still had chronic fatigue, autonomic symptoms and migraines.

For years my migraines were mostly weather/storm related, but over the last couple of years they became chronic and I started feeling like I was permanently in a migraine state.

Then in April this year I had what doctors think was a hemiplegic migraine. Sudden left sided weakness/limp, neurological symptoms, severe photophobia/phonophobia etc. during this attack I also experienced muscle spasming in the left side when exposed to light and lost the ability to walk without holding onto something for about 2-3 weeks afterwards. I also had moments of eye rolling and dipping in and out of consciousness.

CT/MRI/bloods were clear.

Since then my nervous system has felt completely different. My light and sound sensitivity have gone through the roof since that attack. I can’t cope with shops/supermarkets now without feeling like I’m going to pass out. TV motion and bright lights became really hard to tolerate.

Then in May I started having seizure-like attacks. They are VERY visually triggered. Watching TV triggered the first major one. I ended up in hospital after repeated episodes involving:
eye rolling/fluttering
lip smacking
reduced awareness/unresponsiveness
facial twitching/spasms
shaking afterwards
feeling extremely clammy/spaced out after
Hospital lights repeatedly triggered attacks, including overhead lights and doctors shining lights in my eyes. They could basically provoke symptoms by removing my sunglasses and turning lights on.
Routine EEG captured dizziness and left facial twitching but showed no epileptic correlate. There was intermittent posterior/temporal slowing but no epileptiform activity. Neurologist is now leaning toward non-epileptic/dissociative attacks rather than epilepsy, and has referred me to a psychiatrist although I really don’t feel this is mental health related.

I’m also waiting on a longer EEG.

What I’m wondering is whether this could all still be part of some kind of severe hemiplegic migraine, because it all escalated massively AFTER the hemiplegic migraine in April.

Has anyone here had:
severe sensory/light-triggered neurological attacks?
seizure-like episodes with HM?
prolonged issues after a hemiplegic migraine?
extreme visual motion intolerance / shops becoming unbearable?
Non epileptic attacks triggered instantly by bright light?

Would really appreciate hearing from anyone with similar experiences or anything that helped, this is exhausting!