Question for epilepsy sufferers...

My daughter has never had anything like a seizure, but over the last couple years she has suffered some episodes of intense deja vu, which I have been reading can be a symptom of epilepsy...

...Yesterday, for the first time, she had an episode right in front of me, so I was able to ask exactly what she was experiencing as it was happening..

What I would like to ask is - would any of you who have experienced seizures mind sharing how you feel/what you experience at each 'stage' of your episodes?

Thank you so much!

a reply to: lostgirl
What I would like to ask is - would any of you who have experienced seizures mind sharing how you feel/what you experience at each 'stage' of your episodes?

God only knows what thoughts go through my mind when it is captive within an epileptic episode. The moments immediately after the seizure are vague. I hardly recall a thing. I think I was shell-shocked...I stayed locked in my room, the house growing darker, and alcohol keeping me afloat.

a reply to: lostgirl

I'm on medication that prevents them, now. When I had a petit mal seizure, I felt like my body had a mind of its own. My body would get up and walk around, sometimes turning around. My hands would reach out in front, as if to steady myself from falling. I was completely aware of everything that was happening, but my mind was embarrassed and couldn't stop anything from happening. They lasted for 15-30 seconds and didn't feel like deja vu at all.

When I had a grand mal seizure, I was mostly not conscious of what was happening, except for glimpses. I would realize that I was having a seizure and wanted to scream, but couldn't get the mechanics together to do it. I feared for my life every time. Another glimpse of consciousness would have me screaming and crying. Another glimpse, and I'd be staring at someone (sister, husband). Eventually, I would start to come out of it and consciousness would return very slowly.I couldn't tell who I was or read numbers or remember anything for another 10 minutes. These lasted 20 minutes. People told me I convulsed, eyes rolled and sometimes I vomited. Again, not at all like deja vu.

Sounds like your daughter may be experiencing something more like past life stuff or just an unusual number of deja vu...

I don't have them, but it's funny you should write a thread about this, as I watched the film "Deja vu" the other day, which prompted me to look up auditory hallucinations, and epilepsy was what came out.

I think it's classed as Temporal Lobe epilepy, I don't know how old your daughter is, but I think it's one of those "grow into it" things.

Sorry I'm not much help, I don't think I giving you anything you don't already know...interesting synchronicity for me though.

Deja vu on the other hand I do know, I experience it not so often, but I do experience it have done since childhood, no epilepsy though.

Look forward to others repsonses, I'm sure they will have something tangible to offer, rather than my garble.

Sounds like temporal lobe epilepsy or seizures in the filtering section of the brain.

I got a lot of experience controlling the TLE without meds.

I had a few like the out of body ones Benevolent Heretic had, they were interesting. No grand mals for me. Food can trigger these small seizures and some foods can control them. The think is that foods I use to control them can also cause them if over consumed.

Some of mine just gave me repetative actions, some sounds that weren't there, some visual things and I did see some weird colors, which I found actually exist but our minds filter them out. The eye can see more than the mind lets us see, it filters things out.

You feel like you are not completely in control of things and the visuals are distracting. Things are familiar but you can't always know for sure if it is real because it seems like you are in a dream.

My partial seizures would run over an hour and sometimes piggyback each other, leaving me stuck in them half the day.

I never want to go back there. The meds actually compounded the problem, but that is because I have a rare genetic difference, one that is not actually that rare in northern Europeans. We just can't take certain medicines. We also can't over consume sulfur foods .

I been wanting to write a thread on epilepsy for ages but can't work out the whole link thing, so thanks for bringing it up. I don't have epilepsy but my brother does and his epilepsy started when he was about 38. He has the classic convulsion on the floor type. He says he see auras and gets a metallic taste in his mouth before a seizure. He's has had MRI scan things on his brain but docs not find out why. I have done some net surfing as I feel his epilepsy is due to gluten overload. There is research that epilepsy can be caused by allergy. I have a gluten allergy and my father is way better off without gluten. I also have head rushes often where I almost black out, I also get metallic taste when these happen once my husband said I fell on floor and started convulsing so maybe this was an epileptic seizure,

My question is how many of those who have epilepsy that you know or are have a gluten allergy or peanut allergy.

To me I'm not sure if your daughter is having epilepsy or not but good luck to you I hope not.

originally posted by: PrinceJohnson
a reply to: lostgirl
What I would like to ask is - would any of you who have experienced seizures mind sharing how you feel/what you experience at each 'stage' of your episodes?

God only knows what thoughts go through my mind when it is captive within an epileptic episode. The moments immediately after the seizure are vague. I hardly recall a thing. I think I was shell-shocked...I stayed locked in my room, the house growing darker, and alcohol keeping me afloat.

You medicate with alcohol for your seizures? It inhibits the cortex so yes there will be some immediate preventative effects, but the downregulation caused by alcohol of these same receptors will render your brain more likely to have a seizure when you are not drinking.

a reply to: lostgirl

You are about to begin an arduous journey. Seek medical help, but DO NOT relinquish/abdicate your parental obligation to the MEDICAL ESTABLISHMENT. There are no CURES in Western Medicine. You are the filter between them and your child. You MUST educate yourself about every medication that goes into her body. Always remember to fight for the LEAST AMOUNT OF MEDs With THE LEAST AMOUNT OF SIDE EFFECTS.

Do not ignore environment, YOUR unintentional undue influence on her, family stress, cognitive behaviors AND DIET.

Have HER begin, immediately, a Daily Medicine Journal - mandatory compliance. This was will allow you to gage feelings, med side effects, med interactions, behavioral patterns...etc.

Do not allow her to feel this lessens her inert potential.

Do not allow her to accept shame.

And MOST IMPORTANTLY - You must do this all without hovering over her constantly and smothering.

a reply to: lostgirl

P.S. - Remember to breathe!

If you can't find your balance, how will she find her's.

a reply to: lostgirl

Not exactly the answer you requested.

But be aware that ketogenic diet is very usefull to cure epilepsy, even when strong medications cannot do the job.

Thank you all for your posts, I really appreciate the information and feedback as to your experiences...

I have gotten medical advice and it seems that from a medicinal point of view, they don't really consider 'just' having 'deja vu' episodes justification for doing brain scans or starting medication, so they said to keep an eye on her and if she manifests any other symptoms to bring her in...

Thanks again for all the responses!

a reply to: lostgirl

Migraine headaches can also give that effect. You do not need to actually get the headache though to get the aura.

That's a good point...

I actually suffer two different 'kinds' of migraines -

The ones I get when my blood sugar is too low for too long have an aura, and I can avoid the headache part if I get some food in me fast enough...

...But the migraines I get due to my TMJ problem (too much stress = too much jaw clenching), I don't get the aura - so no real 'warning', and the only thing that helps is spending the rest of the day in a darkened room with icy washcloths on my forehead.

I have what is known as focal seizures, not the grand mal seizures. They are more like episodes. I tend to shake a bit have strange feelings down my left hand side and in my lips and they leave me feeling absolutely knackered. I take a couple of different pills, but I also have a tumour which makes them worse. I have actually found hemp oil seems to calm them down significantly . Not the cannabis oil that gets you high, it's called cannabidiol and is available on Amazon, in the UK where it's legal. Not sure about the U.S. Though. It tastes pretty rough, but definitely calms the brain down.

Of course, nothing says it's a seizure. It could be a tumor. I'd be looking at a MRI if it was my kid.

Check for Black Mold also. Theres a blood test they can do for it .

a reply to: Bedlam

Yes, I am very close to making the decision to do that...

But I have been keeping track of the episodes and so far it has only happened twice this year, several months apart...

... both times were on days of high stress - which could actually be the cause, because I have noted that after the first and second time it happened, she went almost a year without an episode, and it hasn't ever happened during the summer break from school - which speaks to some likelihood of relation to stress...

Thank you for responding - tumor had not even crossed my mind..