Just got my report from the neurologist... (some probably daft questions!)

[Loopy Lou]

Yeah so basically, i asked my neurologist for the report he sent to my doctor's after my appointment on the 3rd march (this was the first time i got dragged by my earlobes to see one!) because i needed it for work purposes. Risk assessments and such.

He says about my two "grand mal" seizures and that he suspects i have... what was it "partial seizures".(?)

These are probably some daft questions, but i don't like to be ringing my nurse, the doc or the neurologist all the time...

*Whats the difference between a complex partial and a simple partial? The doc didn't specify which one he suspected. I have absences a lot, but he didn't mention that at all, just the other two.

*I've been put on Lamatrigene, and have been working up the doses cos they have to do it gradually, and currently on 200mg/day, which i think is the dose i'm on til i see the neurologist in september. I haven't really noticed any side effects except the odd dizzy spell and sleepiness (ok, some forgetfulness too, but then i think i've always been like that!), but i haven't noticed any benefits either - should i bring that up, or give it more time to get into my system? I've been taking it in slightly increasing doses since 3rd march.

Also, and this is the really stupid question - when i had those two grand mals, i can't remember what happened. I didn't get an "aura" and i was pretty foggy for a good while after. Doesn't everyone get an "aura"? Or did i just miss it?

Sorry for all the questions, but at least on the internet i don't feel so daft asking them!

 

[Loopy Lou]

Oh yeah... And i'm not sure if i could have had seizures in my sleep. I mean this is probably my mind working overtime and imagining stuff that probably isn't there, but there's been quite a few times where i've woken up after a good nights sleep to find i'm aching all over. Once a tooth had broken right across the top, and there were bits falling off it, i've bitten my tongue and my cheek before (I now have a permanent "skin tag" in my left cheek), and just the other night i had trapped a nerve in my shoulder, which is still hurting now.

I'm not sure if these are really what i think they are, or like i said, are the occasions just seeming suspicious to an over-active imagination after my diagnosis?

I feel like such an eejit, but at least yous can't see my face going red!

 

[epileric]

This should give you a basic description of what partial seizures are (I get both simple & complex) .http://www.webmd.com/epilepsy/guide/types-of-seizures-their-symptoms

Also not everyone gets an aura. Sometimes seizures just start without ones. I never got one but when I had an aura described to me, it was a description of what some of my seizures were.

Just so you know, nocturnal seizures during the night do exist. I usually wake up with mine but the larger ones I don't usually remember. There's one member here who only get them when sleeping.

 

[flinnigan]

I'm fairly new to this too. But from what I've been told most people with Tonic Clonic seizures (Grand Mal) don't have auras. Auras are associated with partial seizures. I have both simple and complex, mostly complex for the last two years. When I have a simple one I can hear everything going on and remember all of it. With my complex I can feel it starting and will probably announce it to the world, but after that I'm mentally unconscious for several seconds although will be physically conscious - talking and walking. I'll have no memory of what I said or did I will grind my teeth, bite my tongue, drool etc. I had absence seizures as a child, but never diagnosed - thats a self diagnoses based on reading and comparing.

It does take a while for you to get up to full dose and it to reach its level. They should be checking your blood regularly for levels. Everyones dose is different. I find that mine get worse with each medication but everyone is different. I was on a pretty high dose this past month and had my worst month ever. I just lowered dose this week and am feeling better. We'll see.

Don't ever feel daft. Just ask away. Thats what we're all here for.

 

[flinnigan]

I get them at night too. I can tell 'cause I wake up with diarrhea and a feeling of dread for the day. I've never chipped a tooth, but probably 'cause I wear a mouth guard for grinding. I also have a permanent cut in my cheek and tongue.

 

[Loopy Lou]

Aaah, i wasn't sure if Tonic Clonic and Grand Mal were the same thing, but thanks for clearing that one up for me!

I'm going to read your link now, Epileric. I'm shocked at how much i really don't know! Up til now, i never really wanted to know anything, but i realize that it's not exactly going to go away. Not much point putting my head in the sand i guess.

I really think i had one the other night when i hurt my shoulder. Reason being, i'd got up to go to the loo at 9am, and then went back to bed to read for a bit. Woke up again about half an hour-hour later and couldn't move my arm it hurt so much.

There's other things... Like... i dunno, the other day when i was going to make a brew, and then was halfway up the stairs (kitchen at other end of house) without realising that i'd even left the room! There's other examples, but thats the first one that springs to mind.

Ok, i'm off to read that link now, thank you

 

[dfwtexas]

Auras are actually simple partials. I get both simple and complex partials. From what I have read, usually it is complex partials that have the auras before. I have doing good on my meds, and I have just gotten simple partials without going into a complex.
Good luck in your treatment

 

[epileric]

I really think i had one the other night when i hurt my shoulder. Reason being, i'd got up to go to the loo at 9am, and then went back to bed to read for a bit. Woke up again about half an hour-hour later and couldn't move my arm it hurt so much.

I used to wake up wondering if I'd had a seizure at night. Now I'm at the point where I know if I wonder whether I had one, then I probably did.

There's other things... Like... i dunno, the other day when i was going to make a brew, and then was halfway up the stairs (kitchen at other end of house) without realising that i'd even left the room! There's other examples, but thats the first one that springs to mind.

Ok, i'm off to read that link now, thank you

I'd done that.... I would be walking & can see a bus shelter up ahead then suddenly the bus shelter is behind me. Sort of like a skip in a movie.

Also no need to feel bad because you don't know much about epilepsy. If you never had it until now why would you?

 

[Loopy Lou]

Absence seizures cause a short loss of consciousness (just a few seconds) with few or no symptoms. The patient, most often a child, typically interrupts an activity and stares blankly. These seizures begin and end abruptly and may occur several times a day. Patients are usually not aware that they are having a seizure, except that they may be aware of "losing time."

I've been like that as long as i can remember One of my workmates laughed at me cos i'd finished my shift for the night and went out for the bus. The bus came by, picked up a couple of kids and then went again, and then she saw me looking up and down the street to see where the kids had gone.

I didn't mind her laughing though - it made me laugh, otherwise i would have been crying. I don't like not having control over my own mind

There are six types of generalized seizures. The most common and dramatic, and therefore the most well known, is the generalized convulsion, also called the grand-mal seizure. In this type of seizure, the patient loses consciousness and usually collapses. The loss of consciousness is followed by generalized body stiffening (called the "tonic" phase of the seizure) for 30 to 60 seconds, then by violent jerking (the "clonic" phase) for 30 to 60 seconds, after which the patient goes into a deep sleep (the "postictal" or after-seizure phase). During grand-mal seizures, injuries and accidents may occur, such as tongue biting and urinary incontinence.

That sounds like what my brother described when he was with me the second time i had a seizure. We were in a nightclub we've been going to for years, and it really hurt that the doormen told the ambulance they thought i might have taken drugs, when they knew i have never touched illegal drugs

I'm feeling quite upset now... Perhaps all the signs were there to begin with... i didn't go to the doctor's for about 10 months after my first seizure (that i know of), and only went when my brother told my parents about the time in the nightclub, because i refused to go to the hospital.

 

[Loopy Lou]

Haha epileric - Seems like we both have problems with public transport!

I hadn't read that til i posted my own post, but for some reason it made me smile ​

 

[epileric]

I didn't mind her laughing though - it made me laugh, otherwise i would have been crying. I don't like not having control over my own mind

There's no reason to feel out of control if you didn't before. If you've had these all your life then the only real difference is that it now has a name & you know why you might space out. You also might be on the verge (or at least beginning a path to) finding a way to stop. Don't lose that sense of humour of being able to laugh at yourself. It's an excellent way to cope.

As for transportation issues...... I've always hated buses. I've learned long ago that I can often get to where I'm going faster by walking than waiting for to get on the bus.

 

[skillefer]

Hi LL! No...not everyone gets an aura. I don't, and I have grand mals (tonic clonics). Trust me, I've managed to give myself a black eye by falling face first into a campfire, as well as biting my tongue, and bruising my tongue. I'm a school teacher, so it can get interesting when I have them at work. Luckily, all the kids handle it really well. As for simple vs. complex, check out the epilepsy 101 thread in my signature....it's got some great basic info. Oh! and as for the meds, let the doc direct how quick you increase the meds. Ramping up too fast can cause problems. Just like quitting them too quick can cause problems. The lethargy and dizziness are your brain getting used to the med most likely. If they don't go away in a week or so, call the doc and let him know. Lethargy and memory loss are common side effects of meds.

 

[Loopy Lou]

Lethargy and memory loss are common side effects of meds.

Way ahead of you there! Mind you, i suppose i have an excuse to nap in the afternoons now
Luckily for me the only "seizures" i've had at work are absences or when i've sporadically clamped my jaw shut or something (no wonder my teeth are wrecked! It's a shame medical exemption doesn't include dental!) Everyone in my workplace is trained to know what to do though, because of the work we do.

I only just noticed recently that while they told us how to cope if someone had a seizure, they never told us much else about it!

Epileric - I don't mind so much now, cos since i had to surrender my driving license, i've got a free bus pass. Saves time and money on getting to work, thats for sure! Thats the only time i ever use buses though, because i'm trying to lose a bit of weight

 

[flinnigan]

The best thing you can do is laugh about it. I've had some good laughs with my kids over some of the silly things I've done. Its a great way to cope. Check out
Why it's best to have Epilepsy... in the lemonade stand forum.