first post for me

[plainjane]

I'm not sure if I am doing this right. This is my first time to be on a forum. I am writing for my husband who had a small stroke and seizures in February. He does not have epilepsy, but is taking antiseizure meds. I thought I might find out some information at this site.
He stared taking dilantin but that seemed to go right through his body and was not working. Then he was put on Lamotrigine, starting with 50 mg in the morning and 50 mg at night. The new neurologist wanted him to get up to 100 mg in the morning an 100 at night. He put him on a schedule to get to that dose. My husband was doing great, everyone was so happy that he was so normal after the stroke. He was on 50 mg in the morning and 75 at night, then right after he went up to 75 in the morning and 75 at night he started changing. He is very spacy, quiet, Totally forgetful, absentminded, he is not the person he was the week before. After two weeks I called the doctor and they said to lower the morning dose back to 50 mg and keep the 75 at night. He is not better after doing this for 5 days. Should we be seeing a difference by now? How long does it take for the lamotrigine to get out of your system? has anyone else had a problem like this while taking lamotrigine? I am so scared and worried. Everything about him has changed, except that he still likes to read alot. Please help if you have any thing like this happen to you or someone you know.

 

[Nakamova]

Hi plainjane, welcome to CWE!

I'm on Lamotrigine, and I haven't had the sudden spaciness you describe. But everyone reacts to these meds differently, and some people do have cognitive and memory issues with Lamotrigine. It does seem clear that there's some link between your husband's symptoms and the medication.

How is he sleeping at night? When I first started on Lamotrigine my sleep was very poor and restless. It took a few months before that evened out. If your husband isn't sleeping well that could be contributing to his absent-mindedness. Another possibility is that he is still overmedicated. Did he have seizure control while at the 50/50 dose? If so, then ask the doctor about tapering back down to that level. My neurologist wanted me at 300mg per day, but I stopped at 250mg/day, and then tapered down to 175mg per day -- which is where I am today, with full seizure control.

The half-life of Lamotrigine is about 24-34 hours in healthy adults. So 5 days would probably be enough to time to react to the lowered dosage. Depending on your husband's age, metabolism, and kidney function he may be metabolizing it slower than average. You could ask the doctor about testing for a blood level of the Lamotrigine to see if if it is staying an unusually high level. The tricky thing is that there is no well-defined therapeutic level for Lamotrigine, just a suggested range -- with plenty of people falling outside of that range altogether. (My blood level is might be considered "sub-therapeutic" except it's what happens to work for me.)

I hope this helps. You are doing the right thing by asking questions. I hope you and your husband feel better soon.

Best,
Nakamova

 

[plainjane]

Thank you for replying. I felt like crying just to read that someone out there answered me. I am so upset. My husband is so spacy he doesn't even know how spacy and forgetful he is. He doesn't even realize something is wrong, only that I am telling him the things he is doing that are not normal. He not the same person as he was three weeks ago. He has no spark, it's like he is numb, he isn't talking much at all and when he does it is like somewhere in his mind he knows he should say something. Something is not right.
He has never been a great sleeper. He says he is sleeping ok now. Although he says "everything" is ok.
He has not had a seizure since the day of the stroke.
He is almost 55 years old and we thought he was very healthy. I will call the doctor on Monday and talk to them about what to do. I think I had rather chance a seizure than have him like this.
Thank you so much for replying to me. I was really hoping he would show some improvement but there is none. Plainjane

 

[Nakamova]

He's been seizure-free since the stroke? Then he could definitely stay on a lower dose of Lamictal, or perhaps go med-free entirely. There's absolutely no need for him or you to put up with the cognitive side effects you describe.

A very, very slight possibility is that something else is going on -- perhaps the Lamictal triggered a kind of seizure called an absence seizure (in very rare cases Lamictal can cause seizures), or some minor stroke activity is occurring that would explain your husband's behavior. In any scenario though, it sounds like the Lamictal isn't helping and may be harming, so it's great that you will be talking to your doctor soon.

 

[plainjane]

Thank you so much for your help today. I appreciate all the suggestions as to what could be going on. Plainjane
This gives me something to bring up with the doctor. I hope I can get an appointment soon.

 

[Loveshorses]

I am also new since February. I am hear hoping for answers and understanding as well. I just wanted to let you know there are lots of us out here that support you if nothing else than to lend an ear.

 

[Endless]

Hi, Jane,

I'm on Lamotragine, and I've had some problems. Mostly a rash in the begninning and trouble sleeping, but in the beginning also memory problems. Things seemed to even out after a few months. I'm on 250mg, but I want the doc to up the dose because it's not enough to work for me. Nak is right - blood level isn't an indicator of how well or how much Lamotragine will work. But mine tests on the low side for how much I take. And I know it isn't working for me. So I really want to go up.

The half life depends on what drugs he's taking at the same time, and how many times a day he takes the lamotragine. It ranges from 25-70 hours. http://www.rxlist.com/lamictal-drug.htm. Multiply the half life by about 4 and that's the time to get about 15/16ths (in other words most) out of his system.

Try giving him B vitamins, especially folic acid, and maybe that will help some. Lamictal seems to suck it right out of our bodies.

There's a chance it's not the Lamotragine at all. Are they monitoring your husband for mini-strokes? He's on blood thinners, right?

Also, some seizures can leave us pretty spacey and absent minded for hours or days. Here's an article on partial seizures - they don't look like the Tonic-Clonic (convulsive) ones at all. He might be having some seizures that neither of you recognize:
http://www.epilepsyfoundation.org/about/types/types/simple.cfm
http://en.wikipedia.org/wiki/Simple_partial_seizure
http://en.wikipedia.org/wiki/Temporal_lobe_epilepsy#Symptoms

Will you let us know how your husband is doing?

 

[epileric]

I am also new since February. I am hear hoping for answers and understanding as well. I just wanted to let you know there are lots of us out here that support you if nothing else than to lend an ear.

Oh heck yeah!!! The people here are extremely supportive.

We've even got a "padded room" for people who need to vent. It's one of the places where non-members can't read what's being posted.

 

[plainjane]

It does help to know there are supporters out there!

 

[plainjane]

Endless, He is taking a blood thinner, a small dose aspirin once a day. The doctors didn't think he needed more than that. Both neurologist thought that. At first we were going to the local neurologist who took care of him while in our local hospital. My husband did not really care for that doc, due to his condescending manner. I agree that he did talk down to us some, but I think he knew what he was talking about.
I liked having a local doctor, now we have to drive 100 miles to get to the "big city", of Birmingham.
They are not monitoring him for mini strokes, how would they do that?
Thanks for the link to rx-list for lamictal, it's a good one and also for the info about the partial seizures. I don't think he has had one but I might not recognize it if he did.
It's just odd that he was perfectly fine, everyone thought so, until he upped the lamotrigine from 50 in the morning an 75 at night to 75 in the morning and 75 at night. Maybe just weird timing? I haven't read much about lamotrigine causing the side effects he is experiencing.
Thank you all so much.

 

[Endless]

Plainjane,

Correlation doesn't mean causation. (That means just because two things happen together it doesn't mean one thing causes the other) An example is my vision, which is blurry around the edges. I blamed it on Topamax and then Lamictal (because it started about the same time I started Topamax and then Lamictal), but it turned out to be another neurological disorder.

Really, the only way to tell if the drugs are causing your husband's spaciness is to reduce the lamotragine, wait a week, and see what happens.

All of these AEDs do a real number on our brains. They do affect everybody differently. So hearing your husband feels spacy - it wouldn't surprise me if it is the Lamictal. It wouldn't surprise me if someone said it makes them see the whole world as purple. I guess what I'm trying to say is that these drugs do a lot, and just because the doctors don't see it much doesn't mean it isn't happening.

Will you let us know what you do and how he is doing?

 

[plainjane]

Thanks for your words of what seems like wisdom to me. We will get things checked out next week and I will let you all know. Thanks So much.

 

[swkhan]

HI there!
My daughter was on lamotrigine for close to 2 years and suddenly had side effects. it was like her left side wasn't working and she couldn't walk or coordinate her limbs. It was very strange! So just keep an eye out for that!
Good luck!!