Saw the Epileptoligist today not so good news

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pita300

pita300

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Saw the doctor today and got the results of the EEG I had a month ago. It was abnormal. It showed activity on the Left and on the right (the side I had the lobectory on). He is lowering the tegretol from 1200 mg to 1000mg and I will start Lamictal in 2 weeks. I have'nt been on 2 seizure meds in years. I have never been on Lamictal so any advice you can give on side effects ect would be great. Also the bone density test came back as monderate bone lose. He would'nt come out and say it was the Tegretol but he did'nt denie it either. He forwarded the results to my gp and will let them decide what treatment if any. I know some of you were interested it the bone density test. Ive been on Tegretol for what seems like for ever. If you have been on a AED for a long time it might be worth talking to your doctor about.
 
Is the neurologist recommending the Lamictal because of the abnormal EEG, or because of actual seizures you've been having?
 
thank you pita300, both for the warning and for sharing. Thank you. Will be reading your posts.
 
Hi Pita300, sorry to hear you didn't get the best news. I take Lamictal and tolerate it pretty well. I hope you get some relief. What sort of seizures are you still having?
 
I've been having simple partials for the last few months. My history with seizures ranges from complex partials before surgery to tonic clonics after surgery those are controled with tegretol.
 
pita300 said:
I've been having simple partials for the last few months. My history with seizures ranges from complex partials before surgery to tonic clonics after surgery those are controled with tegretol.
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I had a left temporal lobectomy and like you, my seizures were CP before surgery and TC's after surgery, except non were controlled with meds. I took Tegretol at one time before surgery after trying Dilantin. Since then I've tried Lamictal and it didn't control my seizures, although it did help with moods. I've also had a bone density test done and so far, so good.

Currently, I take 3000 mgs. Keppra along with 200 mgs. Topomax.
 
pita300 said:
Saw the doctor today and got the results of the EEG I had a month ago. It was abnormal. It showed activity on the Left and on the right (the side I had the lobectory on). He is lowering the tegretol from 1200 mg to 1000mg and I will start Lamictal in 2 weeks. I have'nt been on 2 seizure meds in years. I have never been on Lamictal so any advice you can give on side effects ect would be great. Also the bone density test came back as monderate bone lose. He would'nt come out and say it was the Tegretol but he did'nt denie it either. He forwarded the results to my gp and will let them decide what treatment if any. I know some of you were interested it the bone density test. Ive been on Tegretol for what seems like for ever. If you have been on a AED for a long time it might be worth talking to your doctor about.
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Sorry for the bad news! I remember you saying you had the eeg and bone density test not too long ago. I asked about the density test as we're both on Tegretol (carbamazepine for me) and though I've only been on it eight years I plan on staying on it so I went to my doc and got the req. for the test. Now I just have to get it done (sigh, fingers crossed).
Once you start on the Lamictal (I'm lamotrigine) then we'll share the med combo- I'm on 1000 carb. a day and ramping up to 200 a day on lamot.

Myself I don't mind lamotrigine at all. I had the rash instantly when I started, literally the first day, so stopped until the rash was gone then did three weeks at 12.5 mg 2x rather than 25 2x. The only other time it came back (and ever so slightly) was about 10 days ago when I started a fresh week of 150 2x. It was gone within a few hours and that was it.

Other than that the only side effect has been my hair (though I don't know if this is it itself, or the combo of the two drugs together?). A couple months after starting on it my hair began the most outrageous tangling, and every day it takes a lot of pain and brushing to get the knots out. I have hair down to my bum and am used to the maintenance, but this is unreal. A few times I've actually pulled out a few handfuls. Not bloody happy. If I had shorter thinner hair I'd probably ask to go off it. But, other than that I seem fine and they have cut my simple partials down. Let me know how it affects you or whether you experience any rash/redness (if you do call your specialist right away so they can decide what to do).

:cheers:
 
The funny thing is the doc never ment to up me from 800mg Tegretol to 1200 he only wanted to go up to 1000. Just a mixup in communication hopefully I wont be walking around here like the walking dead any more. As I said in my post he wants me on 1000mg for 2 weeks then start the Lamictal. Then slowly ramp up to 300 mg over 7 weeks time. Then I'm back to see him. As for the Bone density I have never been a big fan of milk. So I'm not surprised on the results. However I do think the Tegretol probably did'nt help any. I have read alot about the rash and will keep a close eye on it. I also don't ever plan on coming off the Tegretol. Even if the doctor suggested it. I'd have a difficult time comming off. You know these simple partials have probably been going on for years and I just never paid any attention to it untill a couple of months ago. I just passed it of as something else. Oh well just our life living with E. And just its way of reminding me that it may have been gone for a while it is still there lurking!
 
Did the doc mention anything in regards to Tegretol decreasing the effects of Lamictal?
My epileptologist told me about the interaction upon prescribing lamotrigine, but followed that by saying we'd do regular blood work and keep an eye on as many levels as possible.
After a few months on the combo I had the whole workup done from calcium to thyroid to liver to white blood to kidneys to...
I still however don't understand if one drug lowers the effectiveness of another why they would ever be prescribed together, but for the most part I leave that up to the specialists. And my partials have lessened so whatya do.

Here's the info on the two together (quite a high percentage ey) Sigh...
Lamictal + Tegretol – increased dizziness, blurred vision and decreased Lamictal about 40%.
 
qtowngirl said:
Did the doc mention anything in regards to Tegretol decreasing the effects of Lamictal?
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He did not mention that. :ponder: Things that make you go hmm! I have to believe he know what he's doing. Oh well it sounds like you and I will be bouncing things off of each other in the coming weeks and months.
 
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pita300 said:
He did not mention that. :ponder: Things that make you go hmm! I have to believe he know what he's doing. Oh well it sounds like you and I will be bouncing things off of each other in the coming weeks and months.
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Yes for sure. And I know what you mean about wanting to know they're always doing the right thing. Unfortunately though there is the odd neuro who is less capable of diagnosing/prescribing, etc. than we are. My first was along these lines, and I've heard a few horror stories in my area of brain damage being missed, and the doc looking at his phone and texting while in an appt, paying less attention to the patient than his texts. :soap:

Anyways, through experience and research and just plain intelligence we can all help each other quite a bit, so keep me posted on how it's working out.
What is the starting dose? I'm hoping he's starting you at 25 mg x2; I'm sure you've been informed all about the slow ramp-up and the rash, etc., but just curious about the dose as from all I've learned and been told by docs is that a start of 25mg is religiously standard across the board, regardless of one's Epilepsy situation.
I'm two weeks away from my full dose of 200x2, and it's tolerable so far!
 
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I would have sent him a text "Hi, I'm sitting right in front of you. Wanna chat?"
 
I took Lamictal years back. Not for long, My lipps puffed up and super hot..
 
Our daughter takes Lamictal, right now she is on 50mg in the morning and 50mg in the eve. She is still tolerating it well with no signs of any side effects. Her target dose is 100mg twice daily. Hopefully she will continue with no side effects. Her Dr. did warn that Lamictal can cause osteoperosis (sp?) so he put her on calcium supplements.
 
qtowngirl.
Hes starting me 25mg a day then added 25mg a week untill I hit 150 twice a day.
 
pita300 said:
qtowngirl.
Hes starting me 25mg a day then added 25mg a week untill I hit 150 twice a day.
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Great! I hope it works well for you.
Another thing I thought to mention is the dreams. Not long after I started taking it I started having the strangest dreams, every night. Not nightmares or anything, they're not good or bad, just very very off the wall.
I've heard this somewhere else too w/Lamictal, so I guess it is a side-effect of sorts.

Lastnight I was in a pool with my bf's best friend and we were talking about getting it on, he was naked underwater, but I opted out because I had plans I had to get to, so I left and hooked up with an old friend from highschool and we went to some sort of desert into a white stone mosque-type building to watch a muslim sit there like some sort of worshipped god. We weren't allowed to bring anything, chairs, food, clothing, nothing. But that was ok because once a day he gutted and cooked us an armadillo. :loco:
 
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