It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Epilepsy Message Board
Post New Thread   Reply Reply
LinkBack Thread Tools
Old 12-30-2012, 09:34 AM   #1
Newbie
(female)
 
Join Date: Dec 2012
Location: Exeter, Devon, UK
Posts: 5
emzywoo HB User
Very confused about seizure medication!

Hello, I started having seizures earlier this year but they have been getting worse and 2 weeks ago I was taken to A&E and put into an induced coma for 3 days as it was the only way to get them to stop. I've suffered from Migraines for 2 years and take Sumatriptan and Diclofenac for them. I also went through a stage of having high blood pressure for 7 months but it returned to normal so it was never investigated further. When I was in hopsital I was seen by a doctor who said that my EEG was clear so didn't think it was epilepsy (Can you get a diagnosis from just that?). But what confuses me is that I was sent home with Levetiracetam and Carbamazepine - Which are used to treat epilepsy?! V. confused here Why have I been given this if they don't think it's epilepsy? Also - what could cause this? Really interrupting my life, particularly college work

More info

Typical seizures
- Repeated Grand Mal seizures (about 50 seconds and gaps of a few minutes) lasting about 40 minutes with loss of conciousness
- Lip smacking with staring and memory loss

Test results
CT scan clear
Lumbar Puncture clear
EEG (Not during seizure) clear

 
Reply With Quote
Old 02-03-2013, 11:28 AM   #2
Senior Member
(female)
 
Nicole K's Avatar
 
Join Date: Aug 2011
Location: Toronto, Canada
Posts: 180
Nicole K HB UserNicole K HB UserNicole K HB UserNicole K HB User
Re: Very confused about seizure medication!

Quote:
Originally Posted by emzywoo View Post
Hello, I started having seizures earlier this year but they have been getting worse and 2 weeks ago I was taken to A&E and put into an induced coma for 3 days as it was the only way to get them to stop. I've suffered from Migraines for 2 years and take Sumatriptan and Diclofenac for them. I also went through a stage of having high blood pressure for 7 months but it returned to normal so it was never investigated further. When I was in hopsital I was seen by a doctor who said that my EEG was clear so didn't think it was epilepsy (Can you get a diagnosis from just that?). But what confuses me is that I was sent home with Levetiracetam and Carbamazepine - Which are used to treat epilepsy?! V. confused here Why have I been given this if they don't think it's epilepsy? Also - what could cause this? Really interrupting my life, particularly college work

More info

Typical seizures
- Repeated Grand Mal seizures (about 50 seconds and gaps of a few minutes) lasting about 40 minutes with loss of conciousness
- Lip smacking with staring and memory loss

Test results
CT scan clear
Lumbar Puncture clear
EEG (Not during seizure) clear
Sorry to hear you have been having so much trouble getting a proper diagnosis.

Just to let you know, I have been diagnosed with epilepsy after having 3 "clear" eeg's, one being sleep deprived, an MRI with dye injected into my brain and a CT scan...everything has come back normal.
My husband has seen me have my seizures so based on his description and my description of my partial seizures (though Dr's still weren't certain about those, but I have educated myself enough to know that is certainly what they are).
No known causes for my epilepsy, it is classified as "idiopathic" meaning arising from nowhere, although there is some history on my dad's side of the family and I had a mild concussion when I was a toddler, but still they will not say one way or the other, these have caused my epilepsy.

Based on what you have described, it sounds like you are having tonic-clonics, and complex partials and yes, you have been prescribed AED's.

I am on Levetiracetam also, and it has stopped my tonic-clonic seizures and for the most part, my partials.

As I've mentioned to others, keep a detailed seizure journal, set up a video camera if you have to, get 2nd, 3rd opinions. I'm on my 2nd neuro.

Many Dr's are hesitant to classify someone as having epilepsy, as there are many implications this can classification can bring on such as losing one's license, not sleeping alone, not showering or bathing alone, etc, etc.

In the interim, if you are certain about your seizures, I would try the medication and see if there is improvement and find another Dr and come armed with questions and your journal, video etc.

 
Reply With Quote
The Following User Says Thank You to Nicole K For This Useful Post:
emzywoo (02-11-2013)
Sponsors Lightbulb
   
Old 02-11-2013, 04:29 AM   #3
Newbie
(female)
 
Join Date: Dec 2012
Location: Exeter, Devon, UK
Posts: 5
emzywoo HB User
Re: Very confused about seizure medication!

Hi Nicole, Thanks for your reply! I'm still having a bit of a rubbish time! Had an appointment with the neurologist who suggested PNES/NEAD and reffered me to a psychotherapist and withdrew all the medication I was on. Started having more frequent seizures although they're a lot shorter now. My psychotherapist disagrees with my diagnosis as she can't see any psychological problems and has tried writing to me neurologist but he's having none of it and refuses to carry out any more tests. So frustrated! I wish there was some clarity between these so-called 'professionals'. I'm happy to accept any diagnosis - Pysical or psychological - I just want a diagnosis. How much longer is this going to go on for

 
Reply With Quote
Old 02-11-2013, 07:20 AM   #4
Senior Member
(female)
 
Nicole K's Avatar
 
Join Date: Aug 2011
Location: Toronto, Canada
Posts: 180
Nicole K HB UserNicole K HB UserNicole K HB UserNicole K HB User
Re: Very confused about seizure medication!

Quote:
Originally Posted by emzywoo View Post
Hi Nicole, Thanks for your reply! I'm still having a bit of a rubbish time! Had an appointment with the neurologist who suggested PNES/NEAD and reffered me to a psychotherapist and withdrew all the medication I was on. Started having more frequent seizures although they're a lot shorter now. My psychotherapist disagrees with my diagnosis as she can't see any psychological problems and has tried writing to me neurologist but he's having none of it and refuses to carry out any more tests. So frustrated! I wish there was some clarity between these so-called 'professionals'. I'm happy to accept any diagnosis - Pysical or psychological - I just want a diagnosis. How much longer is this going to go on for
Your welcome. What is a "PNES/NEAD"?
Also, is there anyway you can get a referral from your family Dr. to a new Neurologist or even an Epitologist??

Why would your Neurologist suggest you see a Psychotherapist? Sounds like he doesn't know what he's doing and just trying to pass the buck....I would stay clear of him...don't go back.

That is what I did. I went to my family Dr. and told him I wasn't happy with my first neuro. and asked for a new referral to a neuro. at a different hospital. My new neuro. has more experience and is more knowledgable...

I hope you get it all straightened out soon. Must be so frustrating for you.
__________________
Find time to spend with your kids now ; what you will always find time for later, is regret."

~Adult onset epilepsy~

 
Reply With Quote
Old 02-12-2013, 10:50 AM   #5
Newbie
(female)
 
Join Date: Dec 2012
Location: Exeter, Devon, UK
Posts: 5
emzywoo HB User
Re: Very confused about seizure medication!

Quote:
Originally Posted by Nicole K View Post
Your welcome. What is a "PNES/NEAD"?
Also, is there anyway you can get a referral from your family Dr. to a new Neurologist or even an Epitologist??

Why would your Neurologist suggest you see a Psychotherapist? Sounds like he doesn't know what he's doing and just trying to pass the buck....I would stay clear of him...don't go back.

That is what I did. I went to my family Dr. and told him I wasn't happy with my first neuro. and asked for a new referral to a neuro. at a different hospital. My new neuro. has more experience and is more knowledgable...

I hope you get it all straightened out soon. Must be so frustrating for you.
PNES is Psychogenic Non-Epileptic seizures and NEAD stands for Non-epileptic Attack Disorder they're the same thing just different names. It basically means that the seizure originates from emotions rather than electrical activity and is, in effect, a mental disorder - Hence the psychotherapist referral. But my psychotherapist disagrees with the diagnosis. So I have no idea what I'm meant to do...

 
Reply With Quote
Old 02-16-2013, 03:00 PM   #6
Newbie
(female)
 
Join Date: Mar 2012
Location: Halifax, Nova Scotia Canada
Posts: 5
WindeeGale HB User
Re: Very confused about seizure medication!

Hello Nicole: I have both Epilepsy and PNES. I am 47 years old and was born with Epilepsy. Both my Grandmum and my Mum had Epilepsy, but not the PNES. My PNES started when I was 8 years old after falling off a 2 and a half story barn. I had a bad concusion, My Neurologist, did what they call a Sleep EEG, on a regular EEG my test always came back normal. I was 12 years old when PNES started. To keep away from the medical terms, my Neurologist gave me an easier name and we call them Truama Seizures, I do feel them coming on when I am upset. I have had the CAT, MRI Scans over the years. To many to count.
I have always been on Medication's, like today I take 2 different medications because of this. One is an anti-convauslant, which is used for PNES, and the other is Phenobarb. One of the easiest ways of knowing if you have PNES is having an MRI done, it will show bright spots on the brain. I hope this helps. But just my opinion you should still be on some type of medication. It all depends on the doctor if they just call it Epilepsy or a Sezire Disorder. Actually for me it is both. My Neurologist is very open minded, and tells me like it is. All my best to you. With my Medications I do live what I call, a normal life. But first I had to accept what was wrong, I would get a second opinion or a third if necessary, here in Canada we can request this from our Family Doctor. Please let me know how you are doing. Sincerely, Elaine

 
Reply With Quote
Reply Reply

Tags
epilepsy diagnossis, medication



Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 02:40 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!