how did you get on the medications you're on?

[petero]

did you have an EEG done that recorded a seizure episode leading the doctors to assess from that point a medicine appropriate to that brain area?

or- did the doctors assess the information that you told them about what people told you/your info about your seizure types

or?


I'm wondering what a positive EEG can do for my own seizures.

I'm under the assumption that it will help determine a more appropriate medicine depending on the location and type of feedback activity in the brain.

(I'm also under the assumption it'll help out the students at the hospital I go to.)

 

[CathyAnn31]

My neuro prescribled Lamictal XR even before he ordered my EEG. This was a week after my 2nd big seizure. I had my EEG 5 days after I began my medication.

 

[momof3boys]

Well for me, Id have to ask my mom if they did the testing before being put on medication or if the medication was given before testing was done. If I were to guess, I would have to assume they did some testing and based on the test results and the seizures, they dx'd me with Epilepsy and I was put on medication. I was dx'd with Epilepsy at 18 months old. My mom recalls me having these staring spells at around 6 months old, she said I could have been having them before, but they started to get more frequent at around that age, and then got worse, when I had a grand mal seizure at 18 months old. Ive been on medication since then. As for the medication I am now on, Keppra XR, My neurologist I was seeing then, which I was 17 years old at the time, he was the one that switched me to the Keppra. Ive been on that since then, he then added Carbatrol ER soon after. So I was on those two medications since the age of 17, til last year when the dr I am now seeing, had me in for a VEEG and then got me off the Carbatrol ER and I was put back on the Keppra XR.

 

[Belinda1961]

Tegretol since it came ou. I'm med resistant anything else in Tegretol family.
Topamax when it was a new drug my neuro decided try it and it was one of few that worked for me. I came off Valium down to Tranxene to Clonazepam it last longer.
My neuro decided try an old drug with diamox.

My drugs are Tegretol,Topamax,Clonazepam and Diamox

 

[nicholas:)]

My GP is treating the symptoms without giving a diagnoses!
Started on Tegretol but being weaned off of it as it only got my fits down from 70+ a month to 14! On Clonazepam now... fits down to 2/4 a month so far- early days!

 

[SeizetheNight]

After I had my first seizure (at the age of 30), I went to see the neurologist. At the first appointment, he was ready to put me on medication, even though I only had one t/c seizure. As I am not a big fan of taking pills, I opted to wait and see what happens, as I heard these things could just be a one time thing. He scheduled me a couple of sleep deprived EEG's and an MRI, and that was that. Four months later, I had another t/c seizure, so I had to see the neuro again. He put me on Keppra, which is the medication he was planning on before doing the EEG's or the MRI, so they were not a factor in his decision.

 

[nicholas:)]

SeizetheNight,

did your eeg's and MRI scan come back as 'normal'?

Nick

 

[davidmc]

My GP is treating the symptoms without giving a diagnoses!
Started on Tegretol but being weaned off of it as it only got my fits down from 70+ a month to 14! On Clonazepam now... fits down to 2/4 a month so far- early days!

My GP wouldn't treat my seizures - simple partial seizues - without a diagnosis - he said he couldn't, he'd need permission from the neurologists.
I was having quite a lot at the time too. I notice you are also in the UK. Was my doctor wrong to say that, could he have prescribed something after all?

It is only due to the fact I got headaches that I am on an AED.
Nothing ever worked for the headaches, so knowing this, after I did a search and discovered Topamax, I got him to prescribe something for the headaches, and he already knew I'd tried other things. didn't work, then next week something else, didn't work. And then I asked could I have Topamax for the headaches as nothing was working. The headaches were bad but I wanted it mostly for the seizures, didn't think it would work for the headaches.
He said I could but advised against it. Well when I'm having so many seizeres some days that I have a few just before I get out of my bedroom door, taking his advice was not an option. So that's how I got on Topamax.

 

[SeizetheNight]

nicholasscott21,

My MRI was normal and the eegs showed some seizure activity on one of them, I believe. (They were a couple of years ago, so I am not 100% sure)

 

[petero]

<bump>

it's comforting to hear other peoples' Rx origins

after my second T-C I basically woke up on Dilantin, which then switched over to phenytoin after it got too expensive. Then another Neurologist had me start taking Keppra, weaning me from phenytoin after I started having concerns about medication.

I still question this whole process which seems to be validated by the medical community only with positive EEGs - but that seems fine with starting medications

why don't they hold off on medications then until there's a "positive" EEG in the first place?

it doesn't make sense to me

 

[AnnaM]

My sons were normal. He had grand mals (ambulance to the house, lips blue...etc) right in front of us so I am thankful for the meds, even tho no positive EEG's. Neuro said his seizures were 'deep within' the brain and would likely not be caught on EEG (He is 4, so, can only handle EEG for so long)

 

[Belinda1961]

I've never had a normal EEG in all m the 48 years of having epilepsy.my neuro finally decided to try an old drug on me Diamox.Along with the pacemaker I have I'm finally 4 months seizure free on the 20th.

my auras have slowed down to be almost non existent.

Belinda

 

[kmilliken]

I am new to this.. not diagnosed with epilepsy though, I had one seizure 4 months ago and I am being treated on dilantin. I'm frustrated by the blood tests and neurosurgeon is talking to me about switching to keppra.. which I'm hearing has pretty negative effects. Otherwise I'm fine on Dilantin.

I GUESS... I basically want to be off of meds, doctors say not to.. but really it was only one seizure and they tell me I need to be on these meds for 2 years! How am I going to know if the seizure was a one time thing or not?? As you mentioned petero; I woke up on dilantin after my first seizure and haven't stopped taking it since..

This may be some what off subject, but any thoughts or experiences??

 

[petero]

hey kmilliken-
two years after one seizure? I'm not really sure HOW dilantin works, what it does... after a seizure occurs maybe it's assistive in neural repair somehow, offering benefit by rechanneling seizure activity that had established a neural pathway

but I experienced two observed seizures before I was diagnosed and put on the phenytoin - woke up on phenytoin, as I said

I had severe side effects with Keppra

my thinking lately has been doubtful that I even have epilepsy and that now my Rx is what may be CAUSING my seizures, given that I've never really "been there" during a seizure, and that I've never gotten much other than hearing "you had a seizure" from witnesses, paramedics, whoever, and given the manner in which I woke up hooked on phenytoin

this could be seizure-thinking itself... or side effects of the Rx... or the experience of events during seizure spans when I'm "out there" and trying to piece things together that just make no sense whatsoever
("I can't remember her name, the paramedics are saying she's my friend - I know her but I can't remember her name - someone did this to me and is controlling my brain" yadda yadda)
it's a hard mental state to be in - especially when you wake up on a drug you have to take for what seems like forever - and it's the same people who did "it" to my mind who put me on the drug onder:

but, seizures are electric charges going through your brain where there is not typically activity
I think of it as being similar to when they find where lightning struck sand and it burns a hole in the sand (http://en.wikipedia.org/wiki/Fulgurite)
I think of it as though the lightning is a seizure, and the sand your brain, and that if the lightning hits the sand, it will continue to strike there (though this is not an entirely accurate comparison) Since seizures tend to follow similar paths and originate from the same areas, I like to think of it as phenytoin being a chemical that goes through the sand and breaks up the Fulgurite clumps, that would otherwise be pro-conductive to additional seizures. A chemical neural kitty-litter scoop of sorts.

And since it's a relatively ~safe~ drug (not a recreational drug certainly, not opioid, not a pain-killer... just a mind-fucker) it's still used as a first-action pharmaceutical to start kitty-littering your brain of fulgurites.

I'm still keen on getting off of it soon though and seeing what happens, and trying something else. I'm on the list for an extended sleep-over study at a local epilepsy clinic to see if they can catch some seizures via extended EEG.

But I had a bad reaction to Keppra. I'm still not entirely sure why I was put on it, offered it, had it suggested...
I wasn't force-fed it or anything - but I was never fed much info about it either - about my condition overall

I need a cigarette

welcome!

I am new to this.. not diagnosed with epilepsy though, I had one seizure 4 months ago and I am being treated on dilantin. I'm frustrated by the blood tests and neurosurgeon is talking to me about switching to keppra.. which I'm hearing has pretty negative effects. Otherwise I'm fine on Dilantin.

I GUESS... I basically want to be off of meds, doctors say not to.. but really it was only one seizure and they tell me I need to be on these meds for 2 years! How am I going to know if the seizure was a one time thing or not?? As you mentioned petero; I woke up on dilantin after my first seizure and haven't stopped taking it since..

This may be some what off subject, but any thoughts or experiences??

 

[suebear]

did you have an EEG done that recorded a seizure episode leading the doctors to assess from that point a medicine appropriate to that brain area?

I'm on Topomax, Keppra, and Vimpat at this time for medication.

Many, many moons ago (when I was 18 months) is when the epilepsy seizures first began. How they started was from high fever which caused a scar. That scar actually caused constant flow of seizures.

You would think the seizures would stop however, it is not the case because I was born in 68 and during that time, the vaccine created for DTP was what caused the high fever, not once, not twice, but three times. It is my understanding I was come and go on the last time around.

At the age of 27, it was determined through an EEG and an MRI, the scar on the left side of my head was showing a lot of activity. I then went in after the mapping to have a large amount of the scar removed. (i.e. temporal resection) After my recovery I was seizure free for four entire years. For some odd reason though, the seizures managed to find a break through point.

After some trial and error issues were still not good enough and I needed to have another operation in 2007 to have a VNS inserted. It works however there has been some concern because it was up so high. As of August 2011 I was put in for was a Deep Brain Stimulator after seeing the tremendous brain activity and extreme amount of seizure activity (four to five seizures happening) a day.

So now, I am in a situation where the medication dosage is at it's lowest. Note; before the DBS surgery, I had to go through an MRI, an EEG, and an EKG. I was taken off medication so seizures would occur and there could be a map made. That map would allow the exact placement to be done when putting in the lead for the DBS.

side note: I was taken off of medication then given an EEG for the VNS surgery as well so it could be mapped out.

I know it's a lot of info but that's the type of testing that was done to me when I needed to have surgery done because the surgeons needed to map out a specific area to map out.

 

[Electra]

I bit the tongue off myself a few times and couldn't stay awake. At first, I never even thought that it could be a seizure. The last one ending up in hospital and didn't wake up for a day so they put me on meds and I had a few that week that my hubby witnessed. I am sure I have had seizures over the years but didn't know what it was as I have ended up in hospital before with similar symptoms and nobody ever did a test and said it was anxiety so I went home and dealt with the electric shocks and feeling of not with it.... I told my neuro that and he said that happens alot but he did an eeg, ct, and mri and activity showed up. I know when there is something different going on in my head and I had myself convince this was it...and if I am about to have a seizure...I have auras and strange feelings. I have migraines too and lose vision for 20 minutes but it's a totally different feeling. I have had a panic attack before as well and with that i couldn't breath (probably had only one of those)and with a seizure I am zoned out, confused, wiped out, sore arms, legs, bite tongue with grand mal etc. Although I can't speak or move with small partial I know I am there and something is happening just can't recall anything like where I am, why I am there...like jamais vu. So that's why I am on Lamotrigne which the neuro said was the best drug with the least side affects. Frontal Lobe, Generalized Seizures with focal /partial.

 

[DayDreamer]

Twenty-some years ago I was sent to a neurologist at home after returning home. I had had a seizure during the night while on holiday with friends. The neurologist did an eeg and heard a description of my deja vu experiences, I think. This neuro had seen my brother for generalized epilepsy during his childhood. My eeg showed abnormal activity, so I was put on medication which I no longer remember, possibly phenobarbital. The meds have changed many times and are currently keppra and topamax.

 

[suebear]

One of the things we discovered, no one in my family has epilepsy.. it's all coming from the DTP shot that I had as a young child.

 

[epileric]

One of the things we discovered, no one in my family has epilepsy.. it's all coming from the DTP shot that I had as a young child.

First of all, nobody having seizures in your family doesn't mean it's not genetic. It's no different than 1 person having blue eyes in a family that has brown eyes or a blonde in a family of burnettes which are genetic.

Secondly numerous studies have been done that show proof that even though the DTP shot has a low (less than 1%) incidence of 1 time (febrile) seizures and no connection to causing epileptic (non-febrile) seizures. Here's the conclusion from one of the studies done. Check the link to see the whole story if you want.

CONCLUSIONS: There are significantly elevated risks of febrile seizures on the day of receipt of DTP vaccine and 8 to 14 days after the receipt of MMR vaccine, but these risks do not appear to be associated with any long-term, adverse consequences.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC320893/

 

[petero]

>>Secondly numerous studies have been done that show proof that even though the DTP shot has a low (less than 1%) incidence of 1 time (febrile) seizures and no connection to causing epileptic (non-febrile) seizures.<<

because Mitt Romney falls into the .06 percentile of income earners doesn't mean his income doesn't exist