Temporal lobe epilepsy questions...

[Loopy Lou]

Ok, I'm still trying to understand my brain and its workings, so here's some questions I've been mulling over for a while but haven't been able to figure out an answer to, hoping some of yous might know. Some of them probably sound quite daft.

Firstly - my EEG showed that seizures were coming from left and right temporal lobe and generalized. I don't really get what the generalized bit means. Also, they said it comes more from the left lobe than the right, would this explain why I get more twitches and stuff on the right side of my body? This was just from a bog-standard 45 min eeg.

Second - I have a lot of absences. Are these counted as cps, sps or what? Also, no med I've had so far seems to work on the absences or partials, so far I've tried lamictal, Keppra and Vimpat. Will possibly be trying a new med after the Vimpat is out of my system, because I'm having a hard time with side effects from it. Are absences and partials considered dangerous, like tcs if you have a lot in one day? They can make me tired and confused, which is not good for when I'm at work. I'm actually considering giving up work because my colleagues have started to treat me like an idiot, or like i'm simple because i sometimes can't quite understand what they're saying, or it takes my brain a moment or two to process it.

Third (and mostly aimed at people in the UK) - have you ever been able to get a sleep study or veeg done? I'm not sure the NHS would do that, but I really want to know what's going on when I'm sleeping. I'd love to know how I wake up with bruises, pulled muscles, chewed up cheeks etc and know for sure whether its seizures or if I'm just a really active sleeper. Currently i'm counting them as nocturnal seizures, as the chewed up cheeks and stuff are a pretty good pointer. I rarely lose control of my bladder.

Temporal lobe epilepsy is a really strange thing. Sometimes its really hard to explain what I'm feeling, and even harder to tell if its a seizure or something else. Like, sometimes it can be a feeling of empty-headedness or a strong smell of stale garlic, or space seeming distorted.

Anyhoo any input would be great. Hopefully my brother will get off the computer soon so I can use it, cos typing this on my phone took ages!

 

[Loopy Lou]

Ok, edited the first post a bit to try and make it make more sense. Yay for getting my PC back from my brother lol.

 

[Nakamova]

Hey Lou, it IS confusing -- the docs categorize epilepsy in so many different ways, and even they don't always get it right...

If the seizure activity stays put in one part it's called a "partial". If it doesn't stay put in area where it started, and spreads to the rest of the brain, it's called "generalized".

it comes more from the left lobe than the right, would this explain why I get more twitches and stuff on the right side of my body?

Yup.

I have a lot of absences. Are these counted as complex partial seizures, simple partial seizures or what?

Absences aren't considered partial seizures, but are actually counted a kind of generalized seizure because they involve the whole brain. Even though they are brief, it's the whole brain that's being flipped on and off, so that's why they are "generalized." Absence seizures respond better to some meds than others, and some AEDs can actually make absences worse! The meds that have the best track record with absences are Zarontin, Valproate, and Lamictal.

Are absences and partials considered dangerous, like tonic clonic seizures if you have a lot in one day? They can make me tired and confused, which is not good for when I'm at work.

Over time they do have an effect on the brain, and the more you have, the greater the chance that your brain can get into the habit of seizing. To the extent that they CAN make you tired and confused, they are dangerous -- it depends on the context. For instance if you are in a situation where your full attention is crucial, then having your attention messed with by a simple or partial seizure can be a problem. It might cause a driving issue, or it might make you vulnerable to being taken advantage of by someone else. It might mean that you leave the kettle on and burn down the house. So it partly depends n how well you know your own brain, and how much control and safety you have in your environment.

 

[Loopy Lou]

If the seizure activity stays put in one part it's called a "partial". If it doesn't stay put in area where it started, and spreads to the rest of the brain, it's called "generalized".

So does that mean i must have had one or more seizures during my eeg for them to pick that up? The test did seem to go awfully fast and i know that my body stiffened up without me realizing it until i noticed him telling me to relax. Everything from my toes to my shoulders to my jaw and my hands. This happened two or maybe three times during the hyperventilating thing, aparently i didn't have any reaction to the strobe lights.

You know, it's taken me about 2 years to ask these sort of questions, might as well get my fill now lol, while they're actually in my head and i can think clearly! It's so hard to fit all this stuff in with the 10-15 minutes i have every six months with my neurologist.

Luckily i don't seem to be waking up with those horrible crappy feelings too much anymore. I'm sort of learning to judge how i'm feeling from how i've felt after having a tonic clonic which was witnessed. Unfortunately it mostly seems to be my poor little brother who witnesses them as i think they've all been sort of between midnight and 5am ish. Wonder if thats something to do with what time i take my meds at. Anyhoo, even if i did have say... a week long VEEG or something, there's a very high chance that i wouldn't have a tonic clonic during that time, they seem to come every few months or so.

 

[momof3boys]

Ok, I'm still trying to understand my brain and its workings, so here's some questions I've been mulling over for a while but haven't been able to figure out an answer to, hoping some of yous might know. Some of them probably sound quite daft.

Firstly - my EEG showed that seizures were coming from left and right temporal lobe and generalized. I don't really get what the generalized bit means. Also, they said it comes more from the left lobe than the right, would this explain why I get more twitches and stuff on the right side of my body? This was just from a bog-standard 45 min eeg.

Second - I have a lot of absences. Are these counted as cps, sps or what? Also, no med I've had so far seems to work on the absences or partials, so far I've tried lamictal, Keppra and Vimpat. Will possibly be trying a new med after the Vimpat is out of my system, because I'm having a hard time with side effects from it. Are absences and partials considered dangerous, like tcs if you have a lot in one day? They can make me tired and confused, which is not good for when I'm at work. I'm actually considering giving up work because my colleagues have started to treat me like an idiot, or like i'm simple because i sometimes can't quite understand what they're saying, or it takes my brain a moment or two to process it.

Third (and mostly aimed at people in the UK) - have you ever been able to get a sleep study or veeg done? I'm not sure the NHS would do that, but I really want to know what's going on when I'm sleeping. I'd love to know how I wake up with bruises, pulled muscles, chewed up cheeks etc and know for sure whether its seizures or if I'm just a really active sleeper. Currently i'm counting them as nocturnal seizures, as the chewed up cheeks and stuff are a pretty good pointer. I rarely lose control of my bladder.

Temporal lobe epilepsy is a really strange thing. Sometimes its really hard to explain what I'm feeling, and even harder to tell if its a seizure or something else. Like, sometimes it can be a feeling of empty-headedness or a strong smell of stale garlic, or space seeming distorted.

Anyhoo any input would be great. Hopefully my brother will get off the computer soon so I can use it, cos typing this on my phone took ages!

Well, I can help in someways.

My seizures are in my left temporal lobe, so most of my seizures start on my right side of my body. When I was in the hospital a couple of weeks ago doing a VEEG, They started out on my right side, but after having them, they then spread to my left side of my body too. Generalized means that its going from like a partial seizure, to a bigger seizure, like a complex partial or grand mal. If your seizures are located in both the right and left temporal lobes, but more in the left, then you can see alot of the seizures occur on your right side, but since its in your right temporal lobe too, you will probably see them occur on the left side too. The more you have, the greater the chances of the seizures becoming bigger and spreading to other parts of the brain, which is what they say generalized seizures are, just getting bigger and spreading more through out the brain.

I dont live in the UK, but I did just have my first VEEG this month and the experience was interesting. You're going there to have seizures so they can pin point exacly where in your brain the seizures are occuring. For me, I had a different kind of seizure than what I was use to having. I was having complex partial seizures prior to the VEEG. The only thing we could point out that was different is my dr took me completely off all my medications, no weaning me off anything. Just flat out stopped all medications. About 40 hours after my last dose, is when my seizures began to come. Instead of having a huge grand mal like what my dr wanted me to have, I was having simple partial seizures where I was aware of what was going on during them.

I am on day 5 of the vimpat and Ive noticed somethings are different since starting the medication. Ive had more numbing and tingling sensations, and Ive noticed some bruises on my left arm that wasnt there before. I looked it all up and some sights that has vimpat on it, state to contact your dr if you have any of these side effects. So Im waiting to hear back from him to see if these are normal and if I can contiune to take the medication.

Its hard at times figuring out all this stuff about epilepsy. I know if it wasnt for my mom being by my side through out my life, I know I'd probably be really confused with what was going on with my body!

 

[Nakamova]

You might have had absence seizures during the EEG -- those would be generalized. Or it could be the body stiffening that you mention. The generalizing can happen so fast that you don't necessarily notice it going from partial to generalized.

Another possibility could be that there are certain brainwaves showing up on your EEG that are associated with generalized seizures, even if you're not having a seizure right at that moment. That happens for me -- those characteristic brainwaves show up on the EEG whether I'm having seizure or not. (I have tonic-clonics).

If you get a chance maybe you can ask your doctor/neuro about the EEG results to find out which it is in your case.

Don't know if this helps, but this link talks about getting referred for a sleep study:
http://www.papworthhospital.nhs.uk/...er_services/sleep_clinic/how_to_get_referred/

It sounds like you have to get your GP on board.

 

[Loopy Lou]

Hmm... my GP seems to be pretty focussed on not spending NHS money, so that could be difficult. Man i wish i could afford to go private, but i don't think i'd ever be able to afford that. My GP knows very little about precisely what's going on with my epilepsy. He's a family doctor and not a specialist in anything. I might try some more googling and see if i can come up with anywhere in the northwest (England) that does sleep studies or VEEGs. The hospital i go to to see my neurologist is apparently the best place in the north of England for neurology, which is why i don't go to my local hospital.

Then it will probably take some convincing to get a sleep study/longer term EEG done. Perhaps i'd better work on my nurse and neurologist for that one...

 

[mel239]

i just feel like I read over and over and still dont quite get it.since my trileptal has held off the complex partials but the simples are sneaking in,so i also wondered how many is too many/I felt like i was in a wave of them for 2 days and it wiped me out and made me so paranoid about even leaving my house and then you add my personality quirks and overemotionalism and I honestly dont feel like i even belong in the outside world.i cant imagine what hell living with me has become-i always thought people were exagerating but my last friend from work who visited and took me out all the time has not been heard from in a month-so i guess Im destined to become that crazy lady on te deadend street who thinks its Christmas all the time-HAHA

 

[elizzza811]

I'm still trying to figure out how an hour-long EEG picked up his partial seizures. I'm jealous. My hour-long EEG showed some 'possible' abnormal spikes or something (I forget the wording), but they weren't sure. How could they not be sure? My 24-hour ambulatory showed nothing.

Also, they keep scolding me for clenching my jaw and teeth during EEGs, but I swear this is a seizure symptom because I can't stop clenching them unless my entire focus is on UNclenching them. Wouldn't that mess an EEG up anyway?...having to concentrate and focus on not clenching?

 

[epileric]

Wouldn't that mess an EEG up anyway?...having to concentrate and focus on not clenching?

Actually, concentrating like that can help lessen a seizure.

 

[elizzza811]

Are you serious? She did though...she kept telling me to stop clenching, even though I tried explaining to her that this clenching was automatic and constant and that I had little control over it.

 

[epileric]

A neurologist showed me how if I started counting backwards by 2's starting at 99 it could lessen or shorten my seizure.

That makes sense since a seizure is when an electrical neuron misfires & rebounds, making other neurons fire properly by focusing on something lessens the misfiring occurring elsewhere in the brain.

I don't think I've ever gotten past 97 or 95 but it's the focusing that helps.

I would assume focusing on something like relaxing your jaw would have the same effect.

 

[Loopy Lou]

Would having another eeg help do you reckon? They're mostly used as diagnostic tools, but i'm not entirely sure they'd do one to check if my meds are working or to see if i'm having seizures overnight.

Another question - i've only lost control of my bladder twice i think during "grand mals", and someone told me that if there's no incontinence then they're not real seizures. Is that true? Cos they seem pretty damn real to me when i feel the after effects, although i can't remember the actual event or the few seconds leading up to it.

There was a few other things i wanted to ask but my head has gone all blank lol...

 

[Nakamova]

I have had plenty of grand mals without peeing myself. And they are VERY real seizures.

 

[epileric]

Another question - i've only lost control of my bladder twice i think during "grand mals", and someone told me that if there's no incontinence then they're not real seizures. Is that true? Cos they seem pretty damn real to me when i feel the after effects, although i can't remember the actual event or the few seconds leading up to it.

I've heard other people say they were told that & it is So Not True!!!

I've never had incontinence during a seizure (grand mal or other) & they are seizures- no doubt there.

If a neurologist told me that I'd be looking for a new neuro so quickly it's not funny.

 

[Loopy Lou]

I was actually on Epilepsy training for work when i was told that. It was the trainer who said it. At the time i was only in the very beginning processes of being diagnosed ie waiting for my first neurologist appointment to come through.

I was sitting there thinking "um.... i'm sure that's not right" but i didn't really know much lol.

Oh yeah, i was supposed to be googling lol.

 

[elizzza811]

Would a grand mal in your sleep be obvious? Back in August I woke up to find I'd wet my pants in my sleep.

...in fact, I just checked and that symptom was on the list of symptoms I'd presented to my family doctor back in the fall, but she still refused to order any tests on me without my psychiatric records.

I've also been reading a lot on here about chewed up lips? I've noticed that the insides of my lips are sometimes sore as if I'd bitten them, though I never remember biting them while eating, for example. Does this mean I'm grand-mal-ing in my sleep?

 

[Loopy Lou]

Hmm... if i do bite inside my mouth it tends to be the inside of my cheek or down the edges of my tongue. Mostly my cheeks though. They're rather chubby (like the rest of huggable me!)

I suppose it'd be different for different people though.

Wouldn't it be lovely if all this stuff had definite answers lol?

 

[Loopy Lou]

Also, why would your neurologist need psychiatric records for testing for epilepsy? My doctor never asked for any such thing, he just did all the neurological tests and asked for symptoms and descriptions of events and stuff.

 

[elizzza811]

It wasn't my neurologist who asked for my psych records...it was my family doctor. And most neuros in this area require a referral from a family doctor to even get in for an appointment.

And I guess because I am on disability for OCD, she thought the list of symptoms I'd walked in with was just more 'evidence' of my OCD manifesting itself, that I was obsessing over my health for no reason. Here is the list I presented her that day...

Symptoms:

Rhythmic ‘wooshing’ sounds in my R ear.

Frequent episodes where I feel extreme pressure at the base of my skull through my lower jaw, almost as if my brain isn’t draining properly.

Feels like my lower jaw is being pulled upwards against my will forcing me to clench my teeth constantly; bottom front teeth are all sawed down and feel wiggly.

SPECT scan of brain showed reduced blood flow to certain areas of my brain in the past – doctors blamed this on Lyme Disease.

Both short and long term memory problems – ongoing, and becoming more severe.

Pupils are tiny all the time, even in dim light.

Trouble falling asleep and staying asleep.

Occasional numbness and tingling, feet usually.

Periodic episodes where I lose my balance – I actually fell once when the ‘power’ suddenly went out of my L leg.

One episode back in August 2010 where I peed my pants in my sleep.

Network of visible blood vessels covers the left side of my chest.

OCD and anxiety attacks – growing worse.