hi all - I’m in the process of seeing a neurologist for a tonic clonic seizure like event I had and a couple of other symptoms that are mimicking focal aware seizures.

what should I be expecting? I am quite anxious and have to wait until the 18th of June to see one. I’m also not allowed to drive until the neurologist clears me, so I am feeling like a burden on my friends and family giving me rides to work etc.

any advice would be appreciate, I am a little scared and frustrated.

Hi everyone,

I’m posting here because I’ve been trying to make sense of a recent significant episode that felt very different from my usual fainting-type events. After doing some reading and also being seen in the emergency department, I thought it might be helpful to hear from people with lived experience or medical insight rather than just continuing to research on my own.

I’m mainly trying to understand whether this sounds like a seizure-type event or something else, as things have been quite confusing and the emergency doctors weren’t able to give a clear answer at the time.

I have a GP appointment this week where I’ll be going through everything in detail, so I’ve pasted the full timeline below that I plan to bring with me. Does anyone have any advice, had simillar episodes or has opinions? Anything and everything welcome!

Thanks in advance!

SYMPTOM TIMELINE 

Childhood event (age 10)

• Lost consciousness while in the car on way to school
• Witnessed by parent: body became rigid with convulsive movements
• Woke up confused afterward with age regression 
• No clear follow-up or diagnosis at the time

Days prior

• Intermittent episodes of “impending doom” feeling (unusual for me)
• General sense of feeling “off” - helpless hysteria
• mood swings / emotional changes (more so than usual)

Day of event (shower)

• Standing in shower
• Developed dizziness and nausea
• Sudden unusual/“gross” smell (not environmental)
• Turned off shower and sat down to try prevent faint as I normally would

Event

• Lost consciousness (unwitnessed, unknown duration)

Immediately after waking

• Confused — did not understand why I was in the shower or what had happened
• Different to my usual fainting, where I am aware I have passed out and where I am
• Muffled hearing 45 sec after regaining consciousness 
• Noticed I had bit the right side of my tongue quite hard
• Felt physically sore - full body work out
• Shaking after regaining consciousness
• Woke up with toes jammed/stuck under the shower track
• Mum said when she turned up I was still pretty ou of it

Injuries noticed after

• Bruising on side of tongue
• Bruising on toes
• Unexplained bruising under left arm
• General body soreness
• Sore neck & jaw

Key differences from previous fainting episodes

• Presence of unusual smell beforehand
• Week of preceding symptoms (impending doom, mood changes, feeling off)
• Confusion after waking
• Tongue injury (side)
• More physical injury/bruising & sore muscles
• Exhausation/brain fog
• Overall felt very different to previous syncope

ED visit

• Diagnosed as syncope
• Seizure noted as differential but not investigated further
• Discharged with driving and safety precautions
• Some symptoms (smell, prior feelings) not documented

Current concerns

• Whether this could have been a seizure rather than typical syncope
• Need for further investigation (neurology referral, EEG, imaging)

Current precautions

• Not driving - as per ED Doctors instructions

Additional Neurological and Sensory History

Migraines

• History of severe migraine episodes consistent with migraine with aura

During attacks:

• Significant light sensitivity (unable to tolerate light)
• Severe nausea
• Difficulty speaking / expressive language disruption
• Cognitive slowing and functional impairment during episodes

Sensory and Neurological Episodes (Interictal and Prodromal Symptoms)

• Recurrent episodes of abnormal sensory perception described as:
  • “Out of body” or derealisation-type experiences
  • Sensation of “world falling away” or disconnect from environment
• Intermittent internal sensory surges described as:
  • Tingling or “electric” sensation travelling down spine and neck
  • Sensation often precedes involuntary physical response

Motor and Physical Response Episodes

• Following sensory “electric” spine/neck sensations:
  • Sudden involuntary muscle jerks, particularly involving neck and upper body
  • Episodes occur without voluntary control

Associated Sensory / Autonomic Features

• Episodes of heightened internal bodily sensation including:
  • Chest-based “sensory overload” feeling (non-cardiac, difficult to describe)
  • Episodes of impending doom / internal alarm sensation prior to events
• These symptoms may occur independently or in combination with dizziness

Visual / Ocular Symptoms

• History of intermittent nystagmus (involuntary eye movements)
• This has previously prompted a neurological referral for further assessment
• At that time, was advised to follow up with optometry rather than undergo further neurological investigation