Carbamazepine and antibody tests? (just got back from neuro.)

[Loopy Lou]

Just got back from the neurologist. Surprisingly it only took about an hour and a half to get to the hospital, have appointment and get back. I'm getting off the evil Vimpat and trying Carbamazepine instead. Unsure of the brand name for that but i'm guessing with it being the NHS, i'd be on generic anyway.

He told me that i could be being over-optimistic about being completely seizure free in a year or two, and said that tle can be hard to completely control.

He mentioned doing some more tests. Perhaps with another MRI which apparently reads better. Something to do with a 3. tesler or something, or it's better than the one they've got anyway. Another eeg could be on the cards but he's going to wait and see how i do on the carbamazepine and then decide at my next appointment in six months.

The interesting thing was that he asked me would i be interested in a blood test to check for certain antibodies in my blood. I think he said Antigad and apparently it's a recent thing they've found in a certain group of women with tle. I've never heard of it before! Has anyone else? I'm going to try and google it, but i'm not sure of spelling.

 

[Beanogirl]

I'm new here so sorry if this doesn't make sense. Are temporal lobe seizures simple partial seizures & complex partial seizures? I'm asking b/c my doctor thinks I'm having simple partial seizures. My EEG was normal & I'm going in at the end of the month for a video EEG.

Please keep me posted on any info you find out on the antibodies. I would like to bring up blood work at my next appt. since the only test they have done is the EEG.

Thank you & good luck!

 

[momof3boys]

I just came off from being on Carbamazepine (I was on the Brand name Carbatrol ER. I got on in around the age of 18/19 years old. So I was on it for over 11 years. I was on Keppra with it too. It controled my seizures very well. The only reason my dr took me off is that there are risks to damaging your bone marrow.

"To avoid possible bone loss associated with long-term use, patients should be advised to meet recommended requirements for vitamin D and calcium, expose their skin to sunlight in moderation, and engage in antigravity exercises".

My dr was mostly concerned about me being on it for that long of time and it affecting me. Since I didnt have any grand mal seizures during the VEEG, he said he recommend I try one medication to see if it holds my seizures, rather than put on 2 I might not need, So he took me off the Carbatrol.



I'll have to ask my mom if they ever did blood tests on me. I know growing up my parents pretty much took care of the drs appointment with my pediatric neuro. I have left temporal lobe epilepsy, so I will have to look into that.

 

[Loopy Lou]

Well, my eeg i had in 2009 showed it in my left and right temporal lobes, but there was more activity in the left than the right.

I think my actual diagnosis was something like partial onset with generalised whatchamathingies. I don't know, head is a ball of fluff at the moment.

As far as i know, i'm still staying on the Keppra. I have to get off the Vimpat first before i can start on the carbamazepine (Tegretol as i found out just now), so that should be a couple of weeks.

I'm kind of interested as to what Antigravity exercises are. I'm imagining me floating around without gravity lmao! Wheeeee! :roflmao:

The blood tests he mentioned weren't connected to the new meds, though i think he said that i might need to have regular tests when i'm on the carbamazepine to check for certain stuff. It's something seperate. I'm not having much luck with googling :O

 

[Loopy Lou]

Great, it says here that tegretol can cause fluid retention and weight gain. So not what i want when i go to my weightwatchers meetings every week =/ With any luck this'll be another med like keppra which doesn't have many side effects for me. It'd be great if it worked on the seizures too, but hey i'm keeping an open mind.

 

[Nakamova]

I'm new here so sorry if this doesn't make sense. Are temporal lobe seizures simple partial seizures & complex partial seizures? I'm asking b/c my doctor thinks I'm having simple partial seizures.

Temporal lobe seizures are simple and complex partial seizures that start specifically in the temporal lobe. Simple and partial seizures can also start in other areas of the brain, although the temporal lobe is the most common.

 

[Nakamova]

Lou -- Sounds like your neurologist has a brand new machine he wants to use! The 3 Tesla is a the latest model MRI. (Tesla is the unit that measures the strength of the magnetic field). Older model MRIs were 1.5 Tesla. The new 3 Tesla MRI gives a clearer image, and it works faster too.

The antibodies he wants to test for are probably anti-glutamate receptor antibodies. These antibodies are associated with autoimmune disorders, but now they are noticing that some people with epilepsy have them too. This raises the possibility that some forms of epilepsy might be treated with immunotherapy. Still too soon to know what form that therapy would take though.

 

[Loopy Lou]

He said specifically for younger women though... this is the only article i found which MIGHT be about it, but i'd need to sit with a medical dictionary to read much of it. Oh wait, i think it says encephalitis (is that swelling on the brain? I'm probably looking at the wrong thing here) but then it says about tests on antibodies in young women with sudden onset seizures (aged between 15 and 45) of an idiopathic nature. I believe that means they don't know where it came from, although i have a history in my family of people with epilepsy.

http://archneur.ama-assn.org/cgi/reprint/66/4/458.pdf

MRI's that work faster? Sounds good to me! :woot: I really wanted to see the pics of my brain last time i had an MRI, but they wouldn't let me look lol. I'd have to go to a hospital that's even further away to get this new MRI done, but it will probably take months to get an appointment anyway. Free healthcare costs, just that it's time rather than money that gets wasted >.<

 

[momof3boys]

Great, it says here that tegretol can cause fluid retention and weight gain. So not what i want when i go to my weightwatchers meetings every week =/ With any luck this'll be another med like keppra which doesn't have many side effects for me. It'd be great if it worked on the seizures too, but hey i'm keeping an open mind.

Oh yeah, I forgot to mention that! when I was taken off the Carbatrol, I lost 15lbs! My last day was March 6th, my dr took me off cold turkey for the VEEG and never put me back on it. I weighed in at 150lbs on March 7th, by March 11th when I was discharged, I had lost 6lbs! I was down to 144. Since then Ive lost an additional 10lbs. Thats the only thing I can chalk the weight loss up to. Now during the years of being 18 yrs old to me being almost 30yrs old, I did struggle with me weight. I mostly had to keep an eye on the foods I ate and eat good stuff to avoid a large amount of weight gain.

 

[Loopy Lou]

Oh dear... I already struggle with my weight despite dieting and going to the gym regularly... perhaps I should just quit food and live on air lol.

Wonder how long it will take for them to organize a prescription and these tests for me.

 

[momof3boys]

Oh dear... I already struggle with my weight despite dieting and going to the gym regularly... perhaps I should just quit food and live on air lol.

Wonder how long it will take for them to organize a prescription and these tests for me.

Thats how I felt too at some points. Not to make you mad or afraid, but since I struggled so much with my weight, I actually went to a hamburger diet. Meaning I only ate 1 hamburger a day at dinner and had water the rest of the day. I know, bad choice. I got a lexture from my dr who I started seeing for my PCOS 11 years ago. She was actually going to put me into a eating disorder class if I didnt start to bring my weight back up. I got down to 117lbs. For my heigth, I should be no less that 125/130lbs. But at that time I was so badly wanting to be like any other skinny girl. I went through such a hard time with my weight starting in the 6th grade, and it going through to me senior year of high school. For 6 years I was over weight and the dr couldnt figure out why.... but I was changing medications alot, and I then found out I had PCOS by the age of 18. So the PCOS also had alot to do with my weight too. But the dr did warn me that the Carbatrol does have that affect and having to exersize more will probably be something I had to do. I remember running all the time, going for bike rides, etc. Then i started having kids, and since then Ive gone up and down. My goal is to lose another 15lbs and get down to around 130lbs.

When do you see your neuro next? Maybe they will have a nurse call you in the presciption and tell you when to start the medication. Thats what they did for me since Ive been going through all these medication changes.

 

[Loopy Lou]

It'll be at least 6 months til i see the neurologist again. Will just have to keep checking with my gp and see if they've got the instructions for my meds change yet. I'm glad that I'll finally be getting off the Vimpat completely! Tegretol will be med number 4 for me.

I already do weightwatchers and go to the gym a few times a week, but I'm still big. Hmph.

 

[momof3boys]

It'll be at least 6 months til i see the neurologist again. Will just have to keep checking with my gp and see if they've got the instructions for my meds change yet. I'm glad that I'll finally be getting off the Vimpat completely! Tegretol will be med number 4 for me.

I already do weightwatchers and go to the gym a few times a week, but I'm still big. Hmph.

hang in there! I hope the Carbamazepine helps with controlling the seizures!

 

[Loopy Lou]

hang in there! I hope the Carbamazepine helps with controlling the seizures!

Somehow i keep forgetting that that's supposed to be the main goal here lmao. It's a close run thing, but yeah i'd rather be seizure free than skinny

 

[momof3boys]

Somehow i keep forgetting that that's supposed to be the main goal here lmao. It's a close run thing, but yeah i'd rather be seizure free than skinny

Yeah its easy to forget with so many changes taking place. There were days where I wished to have seizures than go through all these changes with my body. But then there were days I saw it the other way around and remembered what it was like to feel the seizures come on and know what they felt like during them. That feeling of sadness or fear was just so overwhelming, It was a feeling I hope to never experience again!