Seizures

[CQ:)]

Feeling lot better, just head bit spacey.
I saw my neurologist today, they'll be doing another MRI soon.
I should be going back to my home town soon, the local hospital is just waiting for a free bed

My sister gave me a note book to wrote everything down in so I have record

 

[gina19]

Feeling lot better, just head bit spacey.
I saw my neurologist today, they'll be doing another MRI soon.
I should be going back to my home town soon, the local hospital is just waiting for a free bed

My sister gave me a note book to wrote everything down in so I have record

so many people have said to me I need a notebook or a diary. I do, I know I do. it's just the last time I kept a diary I couldn't keep up with it (all the way back in 2014 so a long time ago!)

 

[Porkette]

Hi CQ,

I'm glad to hear you are going home. My Epileptologist told me to just use a calendar to write down any time I had a seizure
along with the type of seizure I had and to also take note if I was sick or if there was a low pressure in the weather when I had
the seizure. I've been doing it for yrs. and the Epileptologist saw a pattern in my seizures as to what days of the month and what
time of the day/night I would have the seizures. It was a big help to him to get my meds right.
I wish you only the best and May God Bless You,

Sue

 

[CQ:)]

Not sure when I'm being transfered to the local hospital. I believe theyre waiting first a free bed.
But after I come out of hospital I won't be able to live alone for a while

I keep note of my seizures on calendar non my phone, always have.
The notebook is if I'm not feeling well otherwise or when I talk to drs etc

 

[CQ:)]

Had an MRI today
Now I'm just waiting to hear when I'm going to the local hospital then to a care unit as I can't be at home on my own

 

[CQ:)]

My mum was saying the seizure I had last month was a bad one which lasted 10 months and has caused me to lose my memory

Thats why I'm in care, she said it has the specialist stumped as they hadn't seen anything like it

It mustve been bad one as the specialist I see ae some of the best on my state

 

[Porkette]

Hi CQ,

I hope I'm wrong but this sounds like it was a status seizure where the person is out of it for hrs. if not days and
they have to go to the hospital. This happened to me a couple of times when I was put on the med Neurontin.
My Epileptologist got me off the drug and the seizure stopped but like you said the memory wasn't the best and
that is when I was told that the more seizures a person has it will shrink and harden the hippocampus of the brain
and I've been having seizures for 52 yrs. now. Your Dr. may want to do a Spect scan also to show more detail than
a MRI.
I wish you the best and May God Bless You,

Sue

 

[CQ:)]

Thank you for your suggestion but I think I had a spect scan a few years back

I don't know if the drs even did one recently or any one tests as I can't remember

 

[CQ:)]

That should've said 10 minutes not 10 months

 

[gigi]

Woke up this morning in hospital in a VEEG.
Apparently id had a few bad seizures but I'm not sure how many. My memory is also not too good

It was monday afternoon when I woke so didn't see the neuro or epilepsy nurse. I mustve forgetten when I came in.

Its now Monday night so I'll probably find out more tomorrow when one of the specialist come.

I've felt off and had a migraine all day so whatever happened couldn't have been good

Its been years since I had a bad seizure

I know how that feels to go years without a tonic clonic, then comes the storm. So sorry that happened! God bless you.

 

[CQ:)]

I came to ,my local hospital a few days ago so now all my family,friend and boyfriend can visit

I'll be here for while including Christmas.

 

[CQ:)]

I'm still in hospital but now in the local hospital.

My memory is terrible. My mum was telling me that the seizure was the worse I've ever had and it has affected my memory.

When or if I go home there is talk I'll need a carer as I can't live on my own because of my memory

My boyfriend was telling me the day the ambulance came I turned the gas hot plate on my oven and only had my under ware on.

I remember none of this, dont remember anything before the beginning of the week

Hope everyone had a good christmas

 

[Porkette]

Hi CQ,

By chance does your mum or boyfriend have any idea how long the seizure lasted? I know when I had
an absence status seizure which can last 30 min. to hours my memory was shot good. Then the Dr. found out
it was the drug Neurontin (Gabapentin) that was causing this form of seizure for me.

This may sound crazy but start doing brain teasers online that is what my neurosurgeon had me do to better
my memory and it was very helpful especially when it came to doing math ones.

I wish you the best of luck and May God Bless You,

Sue

 

[CQ:)]

Hi CQ,

By chance does your mum or boyfriend have any idea how long the seizure lasted? I know when I had
an absence status seizure which can last 30 min. to hours my memory was shot good. Then the Dr. found out
it was the drug Neurontin (Gabapentin) that was causing this form of seizure for me.

This may sound crazy but start doing brain teasers online that is what my neurosurgeon had me do to better
my memory and it was very helpful especially when it came to doing math ones.

I wish you the best of luck and May God Bless You,

Sue

My mum and boyfriend both told me how long the seizure lasted but I forgot.
But I beleive it was a long time.

I've been on neurontin before but it didn't work for me so was taken of it.

I'm due to see the Neuropsychologist on the 8th January




I actually have puzzle books my mum got me.

Im due to go back

 

[CQ:)]

I don't know if I mentioned I've lost most of my memory. Not much I can remember

My best friend said she doesnt think the specislists at the epilepsy clinic have seen a case life mine before.
She was telling me the specialists want to do a report on me

My sister gave me a note book to write things in and my boyfriend gave me a Dictaphone.
Both will help so I don't forget

 

[Porkette]

Hi CQ,

Tell your Dr. to do a MRI on you if they haven't yet and take a look at the hippocampus of the brain that's
where our short term memory is. I know that my right hippocampus had gotten hard and shrunk over the yrs.
from so many seizures so when they did surgery on me they removed it.

 

[suebear]

Unsure if you've got a smart phone but I have been using the Notes app on it also. Decided rather than purchase any other app, the Notes app comes with the phone itself so figured I would set up a section just for Epilepsy that gets used. I enter the date using something like

Dec 29 - then begin typing what has taken place. I really like using Dec 29 as it's short and sweet.

I will put a space in between the days to make it easier for reading then will do the same when adding the next month.

I have noticed, this also helps the doctor skim down my iPhone notepad notes that have been written. He skims through them then we start talking about what's taken place to determine how to move forward, what if anything need be changed, and so on.

 

[CQ:)]

Unsure if you've got a smart phone but I have been using the Notes app on it also. Decided rather than purchase any other app, the Notes app comes with the phone itself so figured I would set up a section just for Epilepsy that gets used. I enter the date using something like

Dec 29 - then begin typing what has taken place. I really like using Dec 29 as it's short and sweet.

I will put a space in between the days to make it easier for reading then will do the same when adding the next month.

I have noticed, this also helps the doctor skim down my iPhone notepad notes that have been written. He skims through them then we start talking about what's taken place to determine how to move forward, what if anything need be changed, and so on.

Yes thats what I did as well with my phone

But when it was time to see my neurologist I'd type the info
Never thought of showing him my phone

Thanks for that suggestion

 

[valeriedl]

My boyfriend was telling me the day the ambulance came I turned the gas hot plate on my oven and only had my under ware on.

I remember none of this, dont remember anything before the beginning of the week

I usually don't remember anything that happens during my seizures.

Once my boyfriend had found the curling iron on the kitchen table. I was in the living room, completely normal, doing crossword puzzles and he asked me why it was there. I looked and I'd had 3rd degree burns on my hand because I'd walked around with the hot end of the curing iron in my hand. I'd never felt a thing, even when I came out of the seizure. I ended up having to get a skin graft on my hand.

My long term and short term memory are horrible. There are things that happened that you'd think I'd remember but I have absolutely no memory of. I had Lyme disease a few years ago. My mom said I went to several drs and I was in severe pain for over 2 weeks, don't remember a thing about it!

I have trouble remembering simple words too. I was trying to say pepperoni. It was like a guessing game me trying to describe it is and her trying to figure it out. It's really fun doing this with people I don't know. They look at me like I'm crazy, drunk or who knows what?

I keep a little diary in a calendar. Put in things that happened. If you want to keep more of a a journal then you might want to do it in the note book to do that. Stick to it, writing things in it daily. That might help you remember better.

 

[CQ:)]

I usually don't remember anything that happens during my seizures.

Once my boyfriend had found the curling iron on the kitchen table. I was in the living room, completely normal, doing crossword puzzles and he asked me why it was there. I looked and I'd had 3rd degree burns on my hand because I'd walked around with the hot end of the curing iron in my hand. I'd never felt a thing, even when I came out of the seizure. I ended up having to get a skin graft on my hand.

My long term and short term memory are horrible. There are things that happened that you'd think I'd remember but I have absolutely no memory of. I had Lyme disease a few years ago. My mom said I went to several drs and I was in severe pain for over 2 weeks, don't remember a thing about it!

I have trouble remembering simple words too. I was trying to say pepperoni. It was like a guessing game e trying to describe it is and her trying to figure it out. It's really fun doing this with people I don't know. They look at me like I'm crazy, drunk or who knows what?

I keep a little diary in a calendar. Put in things that happened. If you want to keep more of a a journal then you might want to do it in the note book to do that. Stick to it, writing things in it daily. That might help you remember better.

Thanks for the suggestion of the diary I like that idea. I'm still in hospital and not sure when I'm coning out

All my seizures went in a calendar on my phone or from memory a note book
From memory if I had time I'd type then up for the neurologist

If I was seeing the neuropsych I'd type info relevant to her

My boyfriend gave me a digital voice recorder so were going to take that to the appt so my parents know what's going on