Does Lamotrigine work for you?- Appointment update!

[MAB]

MAB,

That is great that Lamictal has been good to you! (seizure wise). Yeah I heard some of the side effects can be blurry vision- that's not fun!! Hope you get everything settled out with your insomnia. I am not an insomniac but just not being able to fall asleep by 1am can be really annoying for me! Best of luck to you!

Hugs,
Janellie

I talked to the doctor today. She increased mt Lamictial another 25mg and will increase it again in 2 weeks. She also prescribed a muscle relaxer to go along with my 2 mg of Klonapin. iI get horrible leg cramps at night and the next day or two it feels like I have been beat up.

 

[Janellie8]

i got the rash instantly, first 24 hours. my legs, stomach, back of my arms and face. as we all start on 25mgs that's all i'd taken, so she took me off for four days until rash was gone then started again at half, 12.5, which did the trick rash-wise.
my biggest prob after was hair-loss within 2 months it started coming out in handfuls (was visiting my parents one night and found myself in their bathroom filling the sink with hair, scared the crap out of me). but like alot of meds' side effects, it tapered off.
with seizures it didn't do much for my weekly simple partials but i did go 9 months without a grand mal. however i was only having one or two a year at that time anyway, so not sure if it was a coincidence or a benefit of my mixture of lamot and carbamazepine onder:. such fun and games ey!

i agree with ya on counselling... i did as well but halfway through had that first g.m. since lamot and couldn't drive to appts anymore, haven't seen my AWESOME counsellor for a year and a half, not happy about that. sounds like we also have in common stress being a trigger. like a vicious circle ey, stress causes the szs but when we sz it stresses us out. bleh.

good luck with the eeg and i'm curious if you've yet had an mri. if so, okay results?
hugs and love.

gtowngirl,

Hair loss...Ahhhhh!! That's terrible! I would freak out! My doctor said that there would be a chance of getting a rash from the side effects, but I am crossing my fingers I don't get one. That would be annoying. I hope that I get an amazing counselor like you have! (sucks you haven't been able to keep in contact with your counselor) Yeah I have my EEG this Monday morning and I feel like such a grown up! Because its my first time I've gone to an appointment and going to do an EEG by myself and without my mom Wooo to being a grown up! (Im only 20)...I did have an MRI maybe 2 years ago, I cant remember what I got on the results :?

Hugs,
Janellie

 

[Janellie8]

I talked to the doctor today. She increased mt Lamictial another 25mg and will increase it again in 2 weeks. She also prescribed a muscle relaxer to go along with my 2 mg of Klonapin. iI get horrible leg cramps at night and the next day or two it feels like I have been beat up.

MAB,

I understand the beat up feeling- when I had the two grand mals this year, I felt so terrible! Same for me- in 2 weeks my Lamictal will be increased 25mg. Glad you have solved the problem to getting cramps at night! That is just another thing you'd have to worry about; good thing you have that taken care of!

Hugs,
Janellie

 

[CQ:)]

CQ,

Is surgery like the last resort? Or could anyone have the surgery if they don't want to take meds? Wow, its amazing how you have been seizure free for 3 years! That would be just wonderful

Hugs,
Janellie

Usually you have to try at less 2 or 3 anti epilepsy meds which don't control your seizures before they will think about surgery. If surgery is an option you have to go through a heap of pre surgery tests to see if you are a candidate for surgery.

As I already mentioned I had Tonic Clonics as a baby/toddler. When my seizures returned in 2002 I was referred straight to a neurolgist who did an EEG & MRI. Over the years I had a few MRIs which all showed scarring on my left temporal lobe (the specialists believe the scarring is from the tonic clonics I had as a baby but no one knows why I went so long seizure free).

When I saw my Neurologist in November 2009 after having a series of partial seizures he put me on Neurontin (my 5th med) & said there wasn't much more he could do which is when he suggested surgery.

After I met the epiologist & had the series of pre surgery tests (MRI, PET Scan, SPEC Scan, VEEG, neuropsychologist evaluation/memory test) a team of specialists (Neurologists, epieologists, Neuropsychs, technicians, Neurosurgeon etc) had a meeting to discuss whether I was a good candidate for surgery, just one specialist had to say no & I wouldn't have been able to have surgery. They all agreed I was a good candidate for surgery as meds weren't ever going to fully control the seizures.

Surgery sounds scary!!

It is scary but I actually saw it all as an adventure & trusted my specialists as the epilepsy program I went through is one of the best epilepsy programs in Australia. All I hoped for was that the surgery would help reduce my simple partials so for me to have no seizures for 3 years is just icing on the cake. For me the surgery was classed as a success but unfortunately the surgery doesn't work for everyone.

 

[2ndchances]

Hope you're feeling as great today as you were the other day!

My neurologist and I discussed our course of action following my second surgery, which I had in April. The thinking has changed since my first surgery in 2001, where their goal was to get me (surgical patients) medication-free post surgery. Now, while they feel that the second surgery 'fixed me' for good, they still want to keep me on a low dose of medication as insurance, but they said the choice was mine. Knowing that I will not have the option of surgery again, I feel that it would be wise.

So, I've added lamotrigine to my usual cocktail of Dilantin and Phenobarb in October. Yesterday, I got up to 100mg twice daily, at which I'll stay for a month, before finally starting to ween off of phenobarb first, then slowly the dilantin. I'm hoping the lamotrigine works for me too, because it's a much safer drug to be on IF I should ever get pregnant. So far so good!

Good luck in your finals too!