Seizures

[Plasticmask]

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

Mine prefer that I keep a handwritten journal so that they can assess the differences in handwriting as I write. Sometimes it looks like I held the pen in my mouth to write lol (THAT is when I get another series of tests but I'm starting to turn them down; I mean what difference does it make these days)

 

[CQ:)]

I'm still in hospital but its been suggested I spend a weekend with my boyfriend as I can't love alone anymore.

I am due to have a telehealth appt with neurologist next month.

 

[Porkette]

Hi CQ,

I'm glad you will be able to spend the weekend with your boyfriend and I wish you the best. I know what
it's like being in the hospital, I was in the hospital for 3 weeks and it got so boring for me.
Wishing you only the best and May God Bless You,

Sue

 

[CQ:)]

There was a change of plan
I had to stay in hospital afterall,but my boyfriend comes every night after work and spent most of the day with me

He bought some things in to keep us occupied.

 

[CQ:)]

I am so sick of hospital
I just want to go home but I guess I won't know much until I speak to the neuro next month.

My room mate and I keep singing I want to break free by queen but only the part lyrics 'I want to break free' lol.

 

[Porkette]

Hi CQ,

Why do you have to wait until next month to see the neuro. If I were in your place I would demand to see
the neuro a.s.a.p. and if the neuro refused to see me then I would get another neuro and their opinion.
You shouldn't have to stay in the hospital this long. I wish you the best of luck and May God Bless You,

Sue

 

[CQ:)]

The neuro is in the city at the epilepsy clinic so it's a pre booked appt.
My neuro is fantastic so I honestly dont mind waiting

We used to only have 2 neuros in the town I live in which is a country town but I think I was told both (1 my original neuro who gave up on me and sent me to the city ) have retired.

 

[ehinOWHEN]

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

That sounds incredibly rough. Waking up in a VEEG with gaps in your memory must be unsettling, especially after going years without a bad seizure. I hope the specialists can give you some clarity when they come around.

I can relate to feeling off and dealing with migraines after seizures, it’s like your brain just won’t settle. Right now, I’m also struggling with my meds, and it’s been a stressful few days trying to make them last. Running out of Keppra recently put me in a really bad spot, and the withdrawal almost triggered a psychotic breakdown. So I completely understand the frustration of feeling like things are slipping out of your control.

I really hope things stabilize for you soon. Please keep us updated when you get more info from the neuro.

 

[CQ:)]

I had 2 seizures on the weekend while I was at my boyfriends
Thankfully my boyfriend witnessed both and told me what happened.

I've got a neurology appt next Monday so hope to get answers then

 

[Foxybug]

I had 2 seizures on the weekend while I was at my boyfriends
Thankfully my boyfriend witnessed both and told me what happened.

I've got a neurology appt next Monday so hope to get answers then

Hope you’re feeling a bit better now?! I had two tonic clonics last night and three myoclonics! I’m told my tonic clonics are pretty violent as I always manage to hurt myself! Broke my nose last month after one!!

 

[Sabbo]

I really hope you're able to get some answers. Maybe a switch or increase in your AEDs can help. I always rely on witnesses to tell me what I did during complex partials/how long they lasted, since I don't have auras.
I recall what a pain it was for me in childhood (when I only had simple partials, & nobody could understand those feelings I complained of). I often feel the Grand Mals I had were a blessing--they helped doctors diagnose those feelings as seizures. I also keep a written journal of ALL my seizures. Unfortunately, I haven't noticed any pattern. I've even had situations where seizures occurred just a few hours after I took meds.

 

[Porkette]

Hi CQ,

Sorry you had the seizures this weekend but maybe your boyfriend will be able to help the Dr. out by giving
the details of what he saw happen. I know that's what helped my Epileptologist out when my husband told him
what he saw during my seizures.

I wish you the best of luck when you see your neurologist. I often saw a pattern in my seizures when the
hormones were changing or if it was the fall and winter, I would have more seizures due to the lack of serotonin
that time of yr. I hope you can get home a.s.a.p. and I wish you only the best. May God Bless You,

Sue

 

[CQ:)]

I went back to the hospital last night so have told the Dr about my seizures which they've noted

I have an appt with the neurons next Monday so will be able to tell him.
My mum will be there and my Dr at the hospital also wants to be there

 

[CQ:)]

I got out of hospital yesterday and have moved in with my boyfriend.
I have telehealth appt with neurologist tomorrow. Mum and the GP who treated me while in hospital are also part of the appt

 

[CQ:)]

I only realised today how bad my memory is now.
My short term memory is real bad, my boyfriend works so he leaves notes everywhere for me and labels everything which is a great help

Both his mum and my parents visit helping me plus I think there will be people visiting me. Like occupational therapists etc

 

[Plasticmask]

Yep. Sounds like it's begun.
Sticky notes are our best friend.

 

[CQ:)]

Sticky notes are our best friend.

Yes they are
My boyfriend labelled the cupboards as well as I only just moved in with him

Before the bad seizures I was live my in my own place

 

[Foxybug]

I love sticky notes!! I have to, to remember and even then I forget. Don’t even remember how to make a tea or a coffee never mind anything else.

 

[Plasticmask]

I love sticky notes!! I have to, to remember and even then I forget. Don’t even remember how to make a tea or a coffee never mind anything else.

I forget our Dogs' names without REALLY having to think about it, the names of my drugs without having to read the bottles and directions, my living/dead relatives, I can't picture anyone's faces but my Wifes', on and on. It's a bit scary but after so many TBIs (and the drugs themselves in my opinion) I just kind of go with it. May as well. Oh and I think my age is starting to come into play and maybe the dinky tumors in my head also. They're honestly VERY small, but who knows.

 

[CQ:)]

I always had a good memory
I think it's mainly my short term memory which was affected which isstill frustrating