Update med changing to Lamictal

[Mandy]

Hello. Lamictal worked for me for a couple years and then i stared having bad side effects along with seizures. I had alot of double vision and sometimes i developed a rash. I don't take it anymore though. I take Keppra and Neurontin. I just started Keppra and it works pretty well for me. no side effects! I just found out i'm a candidate for temporal lobe surgery. I don't know what to do! Good Luck with everything and take care!

 

[skillefer]

Don't know anything at all about Lamictal. But, I do know that husbands that can't do something around the house tend to get depressed. Help your hubby find something to do. My hubby is looking at getting double knee replacement surgery next year, again, and I am soooooo not looking forward to his recuperation time. When my hubby is sick, he's a horrible patient and snips at everybody....but especially me...I think it's because he know I won't snip back. So I have to get him a hobby that he can do lying/sitting down. I'd teach him some of my needlework, but the last time I tried to, he got so frustrated he through the cloth and the needle and silk thread across the room. He's ADHD...it's hard. Or...maybe I'll get him interested in Sudoku puzzles and jigsaw puzzles....

 

[mooselips]

My husband has already had both his knees replaced. One in Oct. 2006, the other May 2007, so now he was Raring to go!
He likes to be outside, and his hobby is Geocaching. Which is really difficult to do if you can't drive.

There's no way on God's green Earth this guy will do needlework. He might get into refinishing my dining room table, which I've been hinting at...

The Dr. increased his Cymbalta to 90 mgs. a day, and he seems to be feeling a bit better.

Then 2 days ago, changing the oil in the car, he twisted and went into a back spasm...(he has history of herniated, and slipped disks in his lower back.) So today, I call the Back Dr. to get ONE more script. Good grief, no wonder he's depressed, he's falling apart. LOL

But the muscle relaxant generally works in a day or two...but he also has a torn rotator cuff on his L shoulder (hurt that when he had his last seizure) and we saw THAT Dr. a few days ago, and he had an MRI done yesterday.

So....as you can see, it's not one or two little things, it's a compilation of a zillion things happening at once.

Once we get over this little bump in the road...all will be okay...

He does get a little arky barky, but usually apologizes pretty quickly.
I'm thinking maybe of some models to put together or something....

 

[Cinnabar]

Hi Mooselips

Hi all,
Hopefully you all kind of know the travailing story of my husband who was diagnosed with Temporal Lobe Epilepsy last November, and prescribed 100mg. Dilantin 3 X a day.
Up til then, he had 2 seizures. Well, he had another April 6th, while we were in Florida. They, (the family Dr. in Ohio) readjusted his Dilantin and he ended up on 500mg. a day. Since that increase, he has been extremely confused, somewhat agitated, and off balance. His level on April 29th was 22.7
He was to have another level this coming Tuesday.

Well, we are back home in Ohio now, and he had his first visit with his NEW Neurologist at the Cleveland Clinic. He is slowly over a period of 12 weeks being weaned from Dilantin, and starting Lamictal, and when finished weaning, will be on 200mg. Lamictal twice a day.

Our new Neurologist was very kind, understanding, and compassionate. Way far better than what we have dealt with before. He said he dislikes meds where you have to worry about a level all the time, he says it becomes a compulsion of worry.

Okay, couple of questions here.
The Neurologist reviewed my hubbys MRI and MRA of his brain, and saw a spot in the Medial Temporal Lobe, the hippocampus, which seems there is a small "hole" there, which the Dr. said could be from my husbands original injury of 1970.

He also said if this medication doesn't work, surgery will be a consideration.

Anybody on Lamictal?
Is it controlling your seizures well?
Side effects?
Any ideas regarding the "hole"?

Thank you all,

Gary's wife...

I was recently diagnosed with Temporal Lobe Epilespy after my neurologist reviewed my MRI. My hippocample volume in the left area is fifty percent less than the right. It was a sight to see! I've been on 600mg of Lamictal (which I think is too much). For now I'm lowering it to 550mg until I can get in touch with my neurologist. Lamictal is one of the best drugs for epilespy but in the beginning I experienced the powerful side effect of loss of motor coordination...ie holding onto furniture to get to another room and back! I've found rather then taking one 200 mg pill in the morning, I score it to 100mg. This is how I take it throughout the day except at bedtime when I take 300mg before sleep. During the day taking one pill at a time makes me too tired. This is my experience but running it by a neurologist is always a good idea. Hope I've been of some help. Always - Laurie:rose:

 

[alivenwell]

My husband has already had both his knees replaced. One in Oct. 2006, the other May 2007, so now he was Raring to go!
He likes to be outside, and his hobby is Geocaching. Which is really difficult to do if you can't drive.

There's no way on God's green Earth this guy will do needlework. He might get into refinishing my dining room table, which I've been hinting at...

The Dr. increased his Cymbalta to 90 mgs. a day, and he seems to be feeling a bit better.

Then 2 days ago, changing the oil in the car, he twisted and went into a back spasm...(he has history of herniated, and slipped disks in his lower back.) So today, I call the Back Dr. to get ONE more script. Good grief, no wonder he's depressed, he's falling apart. LOL

But the muscle relaxant generally works in a day or two...but he also has a torn rotator cuff on his L shoulder (hurt that when he had his last seizure) and we saw THAT Dr. a few days ago, and he had an MRI done yesterday.

So....as you can see, it's not one or two little things, it's a compilation of a zillion things happening at once.

Once we get over this little bump in the road...all will be okay...

He does get a little arky barky, but usually apologizes pretty quickly.
I'm thinking maybe of some models to put together or something....

Nothing is worse than a grinch, especially a bored one. Does he like humorous movies or recordings? They say laughter is a great therapy. In India, they actually practice 'Laughter Yoga'. It's true!

Does he like model trains? Our area has an incredible train club of guys that put together displays. They get a bunch of platforms full of circus rides (small ones!) which kids really like, an incredible track layout, and put on a public display around the holidays. It's really popular around here. It does take up some storage, but it may keep him happy and busy. It's a guy thing (hate to sound sexist, but around here it's true).

There are some really great train model magazines like 'Model Railroader' available.

 

[mooselips]

Yeppers he loves funny silly kind of dumb movies...can you say Adam Sandler? I do too. I'm going to get a few, and we'll watch those...

Cheering up someone is a hard job...
and unfortunately or fortunately, for him, I am perpetually happy.
We'll find something.

His last Dilantin level on Tuesday was 16.3
I sure can see a difference since it's down from the 22.7
He's less confused for sure.
He has a close friend who's into collecting trains, and has an actual train room in his beasement, with them all running, and bridges and tracks and all that, but hubby doesn't seem too interested in that, either.

Now, me, I love to read, him NOPE.
Crosswords, I love. Him , NOPE.

Not to worry, I'll find something...
He has been walking quite a bit...(too much I think, one day he went 7 miles!)

Hugs to all...

 

[mooselips]

Update

Well, here it is, September already!

Hope everyone is doing well.

Gary is on the full dosage of Lamictal since July, and off the Dilantin since then It sure took a long time to wean off one, and start the other, but it went pretty fast looking back.

He seems alot more cheerful, easy going...although that could be from the pep talk the Neurologist gave him, and he's also seeing a Psychiatrist from the C.C.F. because that's their policy.

The ONLY problems he is having is occasional short term memory loss, and sometimes off balance.


BUT other than that...life is good.

Hugs

 

[Bernard]

That's an encouraging update. :mrt:

 

[Georgiagirl88]

Hi there,

I am Lamictal after trying a few others, and I am doing pretty well I would say. I made an easy transition and seem to have few side effects. It seems to be doing a good job controlling the seizures as well. Best of luck!!!

Michelle : )

 

[mooselips]

Good morning all,
Long time no see.
Or you could think of it as: No news is good news!
Gary, (my husband) has been seizure free since last April,
and he's still on 200mg. Lamictal every day.

Last night, or early this a.m. 3:30, Gary woke up, and went to look at the clock, moved his head, and noticed he was WAY dizzy.
So, he went back to slepp until 7 a.m. and decided to get up. He sat up, didn't feel dizzy, and proceeeded to get up, and immediately fell, and hit his outer eye area on the dresser corner. He doesn't remember falling.

I immediately got up when I heard him fall, he was alert, and oriented, so I didn't call 911 or anyone. He has a small 1/4 inch gash by his eye, it stopped bleeding right away.
He has been slightly off balance while on the Lamictal, which we were unconcerned about.

But this is a whole new can of worms.
Has anyone else passed out while on Lamictal? He also takes 600 mgs. of Neurotonin at bedtime.

I just want to wrap him up like the Michelin tire Man so he doesn't get hurt.

Thanks,

Diane

 

[mooselips]

We didn't receive any messages today from the Neurologist or my husbands family Dr. although we left messages with both of them with what happened.

Gary has had a slight headache all day.

No dizziness.

 

[Pinky]

I feel your pain. I've been on Topamax, Tegretol, Epilim, something else I can't remember and am now on Lamictin. The last dose was 100mg topamax and 600mg Epilim, and 2 nights ago I had 2 clonics in a row. My poor boyfriend freaked out.... I give up....

No matter which meds I'm on, I'm constantly dizzy, nauseaous, have no balance and have non stop headaches. Do the doctors listen to me? Nooooooo...

Sigh....

 

[brain]

Hi Diane!

Long time no see! I am on Lamictal, but
of course not at that high of a level; but
has your hubby had his blood level checked?

If not, you should call and request it, if the
Neurologist will not - then contact his Primary
and request it and notify him/her about this
situation. He would need to be re-evaluated
and examined, and most likely the Primary may
very well re-evaluate everything in general.
There could be some other issues involved
that may or may not even be medication related.

Just my humble opinion, but if he is passing out,
you should call 911 and get him to the Hospital
ASAP and they should check him out immediately!

 

[mooselips]

Good morning,
He woke up this morning dizzy while still lying down, so I took his B.P. to see if he was dealing with a orthostatic hypertension, which is your B.P. dropping quick upon sitting or standing. (I'm an R.N.) There was no change, so I'm somewhat sure this is a side effect of the Lamictal.

I helped him down the steps, he's dizzy if he turns his head, so I'm assisting him to move around if he needs to.

I will call the Neurologist again this a.m.

Will Antivert help the side effect of the vertigo?

 

[Crazy Monkey]

Hi Mooselips

I take 450mg of Lamictal and I occasionally get dizziness, but only once in a blue moon. It is not normally first thing in the morning, it sometimes comes on during the day at work. My eyes start to feel strange and I have problems with focusing, it is like I am seeing through things. Then I get a bit lightheaded and have to sit down for a few minutes. I have never bothered mentioning it to my neuro as I have been on Lamictal for many years and this has only happened about 10 times, I don't even know for sure that it is a side effect, but it is a possibility as it seems to happen as I start getting my sleepiness side effect about midday.

 

[mooselips]

Well, the Neurologist office called back. Said to take him to Cleveland Clinic E.R. and tell them Neurologist said to notify him when he gets there.

We did.

They did:
Chemistries
CBC
CPK
Lamictal level
Ct head
CXR

All normal

And gave him 50 mgs. Antivert.
Didn't help.

We never saw the Neurologist. I asked if he would come down and the Resident said, no, they usually don't. We just let them know the results.

Anyway, they are keeping him the night for observation to make sure it's not a cardiac arrythemia......

The nhe calls me, and he got up to the bathroom with help, and they left him in the BR, he got up, and fell against the wall....grrr....and no one there to get him back to bed. i said DO NOT GET up without someone with you.

Sometimes...don't you feel like it's all about making money on the insurance Co.?
And if the Neuro guy wasn't going to see him, couldn't we have gone to OUR E.R. close to us (where I use to work) and they could call the Neuro?

 

[alivenwell]

Does he have an ear injury or ear infection?

 

[mooselips]

I picked him up this afternoon.
He is no longer dizzy, not a bit.
After being extrememly dizzy all day and night yesterday.

Even by shaking or moving his head, or bending over,
he cannot make himself dizzy.

Now isn't that the strangest thing?

And no, he has no ear infection, or ear problems.
And no heart problems.

I am leaning towards taking too much of his lamictal by accident, or a adverse reaction to the lamictal.

The hospital cannot figure out what the problem is, go figure.

Thanks for all your imput.
I'm saying a prayer this "vertigo" doesn't reappear.

 

[alivenwell]

Did he eat any peanut butter lately or different food?

 

[mooselips]

No, nothing different.

Except lately he started taking 2 Neurotonin at bedtime instead of one.
They are 300mg. tabs.

But he's been taking that dose for at least 3 weeks.

Today, regarding the dizziness, he is without any problems what so ever.

Thanks for thinking!