Recently Diagnosed with Epilepsy

[ems0160]

Hi everyone.
Well it says on the introduction this is where we introduce ourselves. lol

So here is my story. back when I was 17 (25 now) is when I think I had my first seizure (not sure but I had the same sensation and feeling that I am having now) it only happened once. And then in 2010 2 months after I gave birth to my son I had that again. My former neurologist didnt think it was seizure he actually went and said that i was faking it. (yeah i wish). and he did every test you can think of for the heart never did an eeg or mri (should have went to a cardiologist) coz he was thinking that it was arythmia (however you spell it. lol)
so I stopped seeing him and I stopped having seizures I figured maybe it was a one time deal or something.

Fast forward to 2013. January. I had seizure once. Ignored it. Didnt think much of it. Figure probably because I got in an accident few days before.
But I was having the same sensation the same stuff every month. And then June till now I was having it once or sometimes 3x a week. so went to neurologist. explained what is going on. he said i do have epilepsy though the cause is still unkown. still going through test and all that. though he had me started on Lamictal just so the medicine gets in my system.

I dont know what is with this long essay I just want to say hi.

But q though. anyone else experience this...
Before I have my 'attack' I sometimes feel weird like i'm floating or something and my hands gets tingly. and then I dont remember what happens afterwards.
and my bf (who i'm living with) would tell me that I act confused or usually forget what happened that day.
and i do notice that i get a headache bad and extremely tired and my whole body hurts like somebody beat me up or i ran a marathon.


So for anybody else how is yours?

 

[CQ:)]

Hi ems0160,

Welcome to CWE, you'll find some great people on here.
Did your new neurologist know which type of seizures you are taking?

It sounds like the weird floating or the tingly feeling you get in your hands could be a simple partial seizure (also known as an aura). An aura is like a warning seizure & is often followed by a complex partial or tonic clonic. What your boyfriend witness could be a complex partial.

My main seizures are auras & complex partial. When I had my aura I would usually have a strange dream come in my head, part of my body would feel a little strange & I would want to go to the toilet. It was always the same dream & the only time I remembered what the dream was about was when I had the seizure. Once I saw the dream come in my head I realised I was having a simple partial.
90% of the time when I had a simple partial (or aura) it was followed by a complex partial. I usually remembered the dream come in my head, wanting to go to the toilet then nothing until I came out of the seizure.
I have had people (family, friends) witness my seizures & I've been told I do things like stare into space, not make any sense when I talk or just do strange things.

After I had a seizure I would sometimes have a headache, feel tired or feel fine. I think it all depended on how strong the seizure was as to how I felt afterwards.

Good luck with the Lamictal & the testing.

 

[ems0160]

I don't know. I have follow-up next week.
My bf says during the seizure i shake like crazy for a minute. and then would just drop and go limp like a rug doll.
(the way he explained it is imagine holding noodles up and then just let it go. sorry he's italian)

my neurologist still trying to figure things out. blah!

 

[CQ:)]

This link may help, it tells you the different types of seizures.
https://www.epilepsy.com/epilepsy/types_seizures

 

[ems0160]

the way my bf describes it sounds like tonic-clonic.. though i am not really sure...

 

[ems0160]

eh the more i read them the more i get confused.. lol seems like every single one describes something that i have but not the whole thing... eh!! i'll just ask my neurologist. lmao

 

[CQ:)]

The different types of seizures can get confusing. I've had epilepsy most of my life, I had my 1st tonic clonic when I was 9 months old. Took tonic clonics on a regular basis until I was 3. I was seizure free for 21 years until the seizures returned in 2002 when I was 24.
When my seizures returned I mainly took simple/complex partials.
Even though I have been diagnosed with epilepsy for a long time I still get confused about the partial seizures & used to guess when it was a simple partial & complex partial lol.

If you don't already it would be a good idea to have a seizure diary.
In the diary you can put the way you feel when you have a seizure, what your boyfriend witnesses & if there is anything that you think may be triggering the seizure.
Eg - lack of sleep, stress, certain foods.

Then when you see your neurologist you can show them your diary & it can help them treat the epilepsy better.

 

[valeriedl]

But q though. anyone else experience this...
Before I have my 'attack' I sometimes feel weird like i'm floating or something and my hands gets tingly. and then I dont remember what happens afterwards.
and my bf (who i'm living with) would tell me that I act confused or usually forget what happened that day.
and i do notice that i get a headache bad and extremely tired and my whole body hurts like somebody beat me up or i ran a marathon.


So for anybody else how is yours?

This is very similar to what happens to me before, during and after a seizure.

I usually only have partials. During an aura I'll get dizzy, confused and my lips might tingle. Everyone can have different things happen during their auras though. I will have Tonic Clonics, the ones that you shake during, sometimes.

During some of the seizures I'll black out and won't know anything that's going on during them. Sometimes I'll just stare or I might pick things up and play with them. My husband says that I really like to play with my cell phone during a seizure and try to call people.

Depending on how bad the seizure the worse the side effects. I'll have horrible headaches and I'm usually very tired. I'll even be pretty tired the next day too and sleep most of it away.

When I started having seizures I would forget things that might have happened days before the seizure. I could have had the seizure on a Thursday but when I come out of the seizure I might think it was Monday. It's not that now but I'll generally forget things that happened before the seizure.

As CQ said, keep a seizure diary. Writing down as much as you know that happened before, during, after and how long the seizure lasted helps the dr understand better what's going on.

 

[Mantis]

Although it can be difficult to do (and certainly see yourself–I haven't!), it may be a good idea to try and get your boyfriend to record videos of your seizures to privately show to your neurologist. It would be much easier to identify it from that than a description.

 

[ems0160]

Although it can be difficult to do (and certainly see yourself–I haven't!), it may be a good idea to try and get your boyfriend to record videos of your seizures to privately show to your neurologist. It would be much easier to identify it from that than a description.

@Mantis

that's actually what my neurologist said. to record a video. it will help him a lot.
on my first appointment I asked my bf to write down what he observes since I dont know. and i guess it helped my neurologist too.
I'm just glad my neurologist now is not an a-hole like the previous one and he pays attention and doesnt think i'm just some psycho..

 

[valeriedl]

Although it can be difficult to do (and certainly see yourself–I haven't!), it may be a good idea to try and get your boyfriend to record videos of your seizures to privately show to your neurologist. It would be much easier to identify it from that than a description.

My husband actually did this with me because I wanted to see what I do during a seizure. He would tell me what I did but seeing myself doing it helped me understand better what he was describing. I don't think we showed it to the neuro though but it might be a good idea to do.

 

[ems0160]

since i'm recently diagnosed.. I have a dilemma.. to tell or not to tell my co-workers.
and i'm scared since I am currently going through custody battle that my ex husband will use my health against me. (he will he is a douche) lol

 

[valeriedl]

since i'm recently diagnosed.. I have a dilemma.. to tell or not to tell my co-workers.
and i'm scared since I am currently going through custody battle that my ex husband will use my health against me. (he will he is a douche) lol

If you are close with any of your co-workers and probably your boss, I'd let them know that way if you were to have a seizure at work they will know what's happening.

Hopefully someone else that's gone through a custody battle can give you advice about that.

 

[ems0160]

I work for as leasing agent for an apartment. So its a small group of people. 3 office staff 3 maintenance...

So I guess I should let them now...

My bf is worried though coz on weekends I work by myself.. he's getting paranoid that i will have one and smash my head on the floor with no one around.

I'm not worried bout it. He is .

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[mrsbobo]

Hi Ems,
i understand i also feel week latley before having the seizure and can barely keep my eyes open.
if i have a big seizure i wake up confused, with a headache and incontinent.
you are not alone there are many of us out there listen to your gp and hopefully he/she will help you to control them.

 

[ems0160]

Ugh so I just had one last night... and I'm exhausted. Blah

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[Peterkay]

Hi

I have just recently suffered a seizure back in April had one before in February this year.when I had my second I was taken by ambulance to hospital and MRI showed lesion in right side of my Brain, had operation and I am now on keppra. I don't know me about epilepsy or my medication but i am
Glad I found the cause as I had convinced myself it was anxiety when it was Partial seizures also.