Seizures when waking up

[DEEMO :)]

Morning all,

Hope everyone has had a better start to the weekend. Woke up and decided I was going to sleep in after a big week at work. While I was waking up I had a seizure. I almost forgot what they felt like when I am awake. Does anybody have an issues with not being able to differentiate between dreams and what is actually happening after a morning seizure? This morning I struggled to know the difference between what I dreamt and what happened yesterday. It was so strange.

On another note I got a call from my Epileptologist. I completely forgot to ask her if they are removing the "suspected" label off my diagnosis. I'm assuming its not a problem anymore because she called to say I am going in for a Video EEG for a week :woot:
I was happy with this until she mentioned surgery. I thought the surgery was one of those things they say as a disclaimer when you first see them. As in "OH BTW surgery may be an option". Now I am a little bit nervous and not sure how I feel about the surgery.

How bad is the surgery? My family say not to go with the op but my specialist seems to be really pushing it. I have a few months to think about it but its just making me a little nervous. Is there any success stories with the surgery. I have only read about people losing memory and language processing. And I have only had Epilepsy for just over 1.5 years. Is that too early for surgery?

Thanks in advanced and have a good weekend :hello:

 

[CQ:)]

On another note I got a call from my Epileptologist. I completely forgot to ask her if they are removing the "suspected" label off my diagnosis. I'm assuming its not a problem anymore because she called to say I am going in for a Video EEG for a week :woot:

Hi DEEMO,

Good luck with your VEEG, hope you get the results you want. I see you are also an Aussie, where abouts are you having your VEEG?

I was happy with this until she mentioned surgery. I thought the surgery was one of those things they say as a disclaimer when you first see them. As in "OH BTW surgery may be an option". Now I am a little bit nervous and not sure how I feel about the surgery.
And I have only had Epilepsy for just over 1.5 years. Is that too early for surgery?

Is there a reason why your epitiologist is so keen for you to look into having surgery if you have only had seizures for approx 18 months?
Have they done an MRI or found where in your brain the seizure activity is coming?

How bad is the surgery? My family say not to go with the op but my specialist seems to be really pushing it. I have a few months to think about it but its just making me a little nervous. Is there any success stories with the surgery. I have only read about people losing memory and language processing.

Brain surgery should really be looked at as a last resort because once you have the surgery there is no turning back. Usually you have to try at less 2 Anti Epilepsy Meds before the specialist even consider brain surgery.
There are a lot of pre surgery tests involved with brain surgery, it depends on the specialists as to what tests they do though.

I have left temporal lobe epilepsy, I used to have seizures as a baby & toddler (9 months - 3) then I went 21 years seizure free until 2002 when I was 24 my seizures returned.
In 2009 my neurologist suggested to me that I look into having brain surgery because by that stage he had tried me on 5 Anti Epilepsy Meds, none of which helped control my auras/complex partial seizures.
I had to see an epiologist then go through a series of pre surgery tests which included PET scan, SPECT scan, MRIs (normal MRI, functional MRI), a week long VEEG, eye test & evaluation by neuropsychologists (memory, concentration test & to make sure I was mentally ready for surgery).
I found out in November 2010 that I could have the surgery & in March 2011 I had surgery to remove the scarring on my left temporal lobe.

The surgery is in no way a cure for seizures & more like another treatment to help control seizures.
There are other members on here who have had brain surgery & they either continued taking seizures or they went seizure free but their seizures returned.
I was lucky enough to have a good recovery & am now over 2 years seizure free. My specialists are all confident that I will be able to remain long term seizure free but I know there is still a slim chance my seizures may return.

This may be interest to you http://www.coping-with-epilepsy.com/forums/f41/almost-time-11741/, it is a thread I started just before I was due to have my surgery & I use it to update on my progress.

 

[BrandiBrat]

Happy Friday Are the meds not working for you? Seems for your doctor to recommend surgery, something must not be working.
I was supposed to have the VNS done but met with the neurosurgeon and am now moving towards surgery instead. I have only been diagnosed since Nov of 2012 but I'm not responding to meds well and my seizures are daily and nocturnal, which are making me severely sleep deprived. It depends on the individual case and how severely you are effected by your seizures.

 

[DEEMO :)]

Had 2 more seizures this morning and have no recollection of writing this

My MRI came back normal. I had an abnormal PET scan that showed it was in my left temporal lobe. I am really not sure of all the results of the EEGs. I know one from another hospital was abnormal but they have not told me much else. The VEEG will show exactly where and they want to do a SPECT when I am in there.

I have tried a few meds. I have been removed from meds due to side effects more than not being controlled. Epilim caused REALLY bad behaviour issues, tegretol made my liver very sick, frisium resulted in bad anxiety. Keppra did not work by itself so they added lamictal. This controls them when I am not hormonal. When I am hormonal I add clonazepam but this is short term. So I am currently on 3 meds. BTW I am a female (people hear my nick name DEEMO and assume I am a guy ). My current mix of meds have resulted in me going from 50kg down to 41kg with other interesting side effects. I hope they do not take me off them though. So have tried 6 and still on 3 of them.

I have just noticed that instead of them talking about med changes conversations are ending in the possibility of surgery. I am not sold on it yet. I will have to talk to my specialists again.

Thanks for the reply. I will do some reading today. Still post-Ictal at the moment.
I have been told (different specialist) that the earlier they do the surgery the better the outcome. Not sure how true that is.

I will be in Sydney for the VEEG.

 

[DEEMO :)]

Brandi, I was controlled for the last few weeks during the day. I have heaps in my sleep. I had 3 seizures while awake this morning which is disappointing. Yeah the meds don't work as well as they should unfortunately. I have more issues with side affects though. VNS has not even been mentioned to me.

Wow so you have had it for a shorter time then me. That makes me feel a little more relaxed because I did not want them to suggest it too early. I started in December 2011.

Happy Friday to you. I am celebrating Saturday in style cleaning the house

 

[CQ:)]

I have been told (different specialist) that the earlier they do the surgery the better the outcome. Not sure how true that is.

For them to be able to consider you a candidate for surgery they need to know where in your brain the seizures are coming from. The MRIs will usually show any abnormalities eg- scarring, tumors.
It really depends on where the damage is in your brain & if they can successfully remove the damage without causing any other issues as to how successful the surgery would be.

When I have had MRIs they had all shown scarring on the left temporal lobe which the epiologists, neurosurgeons think may be from the tonic clonic seizures I had as a baby. Because I had the scarring on my brain & medication didn't help I was classed as a very successful candidate for surgery.
Before my surgery I was given about an 80% chance it would help my seizures but when I had my 2 week post surgery check up with one of the neurosurgeons he told me they believe that they got all the scarring & dead brain tissue so gave me a higher percentage that the surgery would be successful.

Good luck with it all & let us know how the VEEG gos

 

[CQ:)]

Happy Friday to you. I am celebrating Saturday in style cleaning the house

Have fun with the cleaning lol.
I've also spent my Saturday morning doing housework, I have some family coming to stay with me for a couple of days. They probably wont be here until Wednesday but I'm not home much during the week so getting most of the cleaning done over the weekend.

It's raining here so what better way to spend the 1st official day of winter then to do housework fft:

 

[MuayThaiFighter]

I've been having seizures every time I wake up, and I really do struggle to know if it was a dream. Living with my girlfriend gave me a better idea of what i've been doing at night and upon awaking.

Even on meds, when I thought things were more stable, seizures would breakthrough when I woke up. My memory would be wiped for a pretty long time.

As for surgery I don't have any input on that. I just hope you start getting better seizure control and if you do pursue surgery, I hope it keeps your seizure free forever!

 

[BrandiBrat]

Because my seizures are nocturnal, I have them every morning when I first wake up for the first few minutes. It's almost like it takes my brain a few minutes to stop the seizure activity and settle down upon wakening, and then I get out of bed. I can usually count on laying there a good 15 minutes before getting up. I have auditory hallucinations and all sorts of fun auras as soon as I open my eyes...not cool. lol

And you're right, I did assume you were a guy...I'm sorry! lol My weekend consists of the same. Cleaning, laundry, and yard work. Yuck! I'd much rather go to the beach and work on my tan.

 

[DEEMO :)]

Had seizure number 4 today and have no recollection of these posts Oh fun days. I was thinking wow this person had seizures this morning too. Oh wait that's me

My MRI was clear except a few small cysts in the right temporal lobe (my seizures are LTL). It is my PET scan that has shown seizure focus on the left. Past EEGs have just shown slowing and spiking all over the brain. They are talking about surgery due to meds not working and they want to keep testing to find the focus to remove it. I don't have any scarring :/ but they do not seem to bothered about that and still want to go ahead with the tests.

Cleaning is going very slowly ATM. I am really unmotivated to clean

MuayThaiFighter- I have them after I have woken up but am still really out of it.
Im usually still tired but they follow the same pattern so I know they are seizures which is good. The part I struggle with is what I have dreamt about during the night gets mixed in with reality and it takes a few hours after the seizure for me to catch up and realise that some things did not happen or are not real.

Well I am off to try to vaccy the floor for the 3rd time lets hope I stay standing this time.

 

[DEEMO :)]

Most of my seizures are nocturnal as well. Its when I sleep in they happen all day. Very annoying.

People tend to get confused when they think I am a guy for a while then I mention I get seizures during my time of month
My name starts with a D and when I was younger I had an EMO haircut so friends called me DEEMO. That name has stuck with me for years. I am surprised that they have kept it going.

 

[MuayThaiFighter]

"The part I struggle with is what I have dreamt about during the night gets mixed in with reality and it takes a few hours after the seizure for me to catch up and realise that some things did not happen or are not real."

Exactly! I have that as well, but only when the seizures are more prominent. Its the weirdest feeling and was almost impossible to describe to the neuro or anyone for that matter. My brain would feel like it was still in dream mode. I sure do miss the wonderful nights of sleep.

You know, the ones where lay your head down and wake up feeling refreshed. I'd pay some serious money for a natural night of sleep like that.

 

[BrandiBrat]

Omg, you and me both!! I haven't had one of those since heaven knows when. And when I do have a night where I sleep well, I know something bad is just around the corner. I wish they made a special sleeping pill for us

 

[Cint]

Hi Deemo,

I've had epilepsy for 30+ years. After suffering from mostly CP's for 10 years and trying meds that were available at the time, I had a left temporal lobectomy back in 1990. I was only seizure free for 14 months. After that, the seizures came back with vengeance. I not only had CP's but TC's as well. I also went into a deep, deep depression for years. And suffer from memory loss and aphasia. So I was seeing a neuropsychiatrist for nearly 10 years after the surgery because of the depression. I also started having nocturnal seizures after surgery. My epileptologist tried me on many more of the new meds. Nothing worked. Finally had the VNS and it has helped control the seizures but not completely stopped them. And I still take meds--Keppra, Topomax and Potiga. I am one of those patients with refractory epilepsy.

So if you're considering surgery, do so carefully. Especially if they are only nocturnal seizures. There is NO turning back, like CQ said. And it takes a lot of preparation leading up to the actual surgery. Here is more info:
http://www.epilepsy.com/epilepsy/surgery

 

[DEEMO :)]

Thankyou Cint. Its good to get feedback from someone who has had the surgery. My family is saying no. I am still undecided. I am currently in hospital for having 5 secondary generalised seizures. I have list 48 hours memory and have no idea how i got here. Aparently i came by ambo but i have no recollection of that. I am starting to get sick of the meds not working. Does anyone else have this problem? Hospitals are so boring :/ hope everyone else is having a better weekend Im not in the hospital where my neurologist or epileptologist work and thats been a bit annoying. They wont let me out till tomorrow :'( oh well thats life for an epileptic i guess.

 

[BrandiBrat]

Deemo, I'm so sorry to hear that you're in the hospital. After my 5th med not working and 4th stay in the hospital I am taking the surgery route since I've been given the opportunity, I don't care if I haven't suffered with it for 10 years. I don't think there should be a timetable for suffering. Mine was due to head trauma and I'm pretty sick of the whole thing. I hope that by now you have been released and you are stable again. Let us know how you're doing

 

[DEEMO :)]

I am out but they tripled my medication :/ had to beg them to let me out. so i am really zoned out. Not doing too bad. Have a week off work but i have to still write year 9 and 10 reports. I am going in for a video eeg which will be good. Finally got an appointment with my epileptologist. They kept asking if i missed my meds on saturday but I have no idea can not remember anything atleast i am making progress now

 

[DEEMO :)]

I have never been this drugged up before. I cant walk with out falling into somthing. write this is so hard :/ have to have an eye closed. Now have todo marking is there any outher teachers strugglingvwith epilepsy? Thanks for being so supportive

 

[BrandiBrat]

My Topamax was increased too quickly once and I got vertigo. It was very uncomfortable and I kept falling down, I didn't know which way was up and which way was down. It took 3 days before I could get off the couch.
Did you call your doctor? It sounds like your dose needs to be adjusted or changed. I'm sorry you're having such a rough time with everything, Deemo. I hope you stabilize soon.

 

[DEEMO :)]

The dr. on emergency increased my meds. i will see my epileptologist in a few weeks im hoping these meds work this time. they have not been changed just doubled t 1000 of keppra, 400 lamictal and 2mg of paxam :/ hopefully i will be much better tomorrow. good being in my own bed and friends helping me climb stairs.