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A MyEpilepsyTeam Member asked a question πŸ’­
Clintonville, WI

My understanding is that when you're having a total seizure, you aren't consciously aware of any of it. There have been several times since I have been more into Natural medicine, that I have been fully aware of shaking, etc. all the way through it (including one time I had 3 seizures in a row and recall everything -including sitting up between them seeing & hearing everything going on.) This have never happened growing up that I am aware of since starting to have seizures at 2 weeks old until I… read more

September 22
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A MyEpilepsyTeam Member

Hallo .. this be William .. I be focal aware of all my six types of seizures since I be a wee lad old enough to be aware .. always I see .. hear .. feel .. remember all of them .. even though most of my seizures be nocturnal .. whilst I be sleeping .. they be as dreams to me .. and as with most dreams .. when I awaken I oft be losing the memory .. and there be some .. such as those I have because of LTL ictal asystole.. that I would rather not remember .. this include the banshee scream aura that precedes tonic clonic seizure I suffer in daytime .. and after that awful scream I know only too well where I be going .. into a dark swirling nothingness .. I can be seeing .. feeling .. hearing nothing at first .. and then I be as a lad trapped in a vegetative state .. unable to move in any way .. I cannot talk .. and what i do hear is garbled .. and what I do see is shadowy .. shapes moving .. yet out of my reach .. finally I hear the voice of my dear wife speaking Gaelic to me .. and feel the gentle touch of her fingers as she take my hand in hers .. from these awful seizures it seem a blessing it would be NOT to be aware .. even so I be thankful I be this way .. as I feel when my heart stop .. I feel the suffocation of being without sir .. and I see in the shadows my wife doing the CPR that be bringing me back .. and I feel the shock as my heart restart .. and I know I be back .. and I thank God to be here .. my type of epilesy .. LTL ictal asystole.. be extremely rare .. and neurologist believe this be the reason why I be focal aware when I suffer these seizures .. hugs and prayers from William and JenπŸ’œπŸ’™πŸ€—πŸ€—πŸ•ŠπŸ•Š

September 22
A MyEpilepsyTeam Member

there is such thing as having a seizure when youre aware and seeing it happening but not in control of your body movements

September 23
A MyEpilepsyTeam Member

I used to suffer from multiple Grand maal Fits, and I sensed when they were coming on, as they were always triggered by digestive system and period pains and overheatedness, or infections caused by active bugs that I caught from other sources, such as stomach bugs, harsh colds and flu injections, plus side effects of medicine that I was tried on by many different NHS staff in England, Scotland and Northern Ireland.

September 22
A MyEpilepsyTeam Member

Not really aware of it during the actual seizure but the closest thing to this is probably my last TC seizure. The way it played out there was only really about a 2 hr gap at most where I was unaware of what was going on but the rest of the day I still remember and I still remember it as of now.

September 22
MyEpilepsyTeam

What a fascinating and thought-provoking experience to share. The question of whether someone can remain aware during a grand mal seizure is a really interesting one.

Traditionally, tonic-clonic (grand mal) seizures are associated with a loss of consciousness, meaning most people have no memory of the event. However, seizure Show Full Answer

What a fascinating and thought-provoking experience to share. The question of whether someone can remain aware during a grand mal seizure is a really interesting one.

Traditionally, tonic-clonic (grand mal) seizures are associated with a loss of consciousness, meaning most people have no memory of the event. However, seizure experiences exist on a spectrum, and awareness during seizures isn't always black and white. There is actually a type of seizure called a focal aware seizure where a person remains fully conscious throughout. What's medically interesting is that sometimes what appears to be a generalized seizure may actually begin as a focal seizure β€” meaning it starts in one area of the brain before spreading. In those cases, some level of awareness can be retained.

This could be worth exploring further with a specialist. Regarding finding the right medical support, there are a few avenues worth considering:

- Epileptologists β€” neurologists who specialize specifically in epilepsy and may be more open to nuanced conversations
- Integrative medicine doctors β€” physicians who combine conventional medicine with complementary approaches
- Functional neurologists β€” who look at brain health more holistically

Keeping a detailed seizure diary documenting your awareness levels could also be a powerful tool when speaking with any specialist. That kind of specific, personal data is hard to dismiss. One important safety note β€” experiencing three seizures in a row is something called status epilepticus, which is considered a medical emergency. If that happens again, calling 911 immediately is strongly recommended, regardless of any other approach being taken to manage health.

September 22

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