feeling just awful on lamictal

[w1943davis]

I am new to this forum. I had three grand mal seizures 4 years ago and have been on medication since. I have never had another seizure. I started taking lamictal about 18 months ago. The doctor started me on a low dose while monitoring my blood levels. I never have sufficient levels and the doctor has increased my dose up to 200 mg. The last few weeks I have felt just awful. I slur my words, sleep all the time, stumble around, drop things and I am generally just not myself. I called the doctor and he said it sounds like the meds have gone "toxic" on me. He told me to get my levels drawn. I had to wait over the weekend to get the blood work done and I just couldn't stand how I was feeling so I skipped a dose on Saturday and Sunday. I felt almost immediately better. My head was clear. I went and got the blood done on Monday. When the results came back the doctor was shocked at how low my levels were. They were 1.5 and they should be between 4 and 18 (I believe) He told me to start taking 150 mg. I did and felt terrible again. I am sick of feeling like this. I don't care if my levels are low! I am so much better on a lower dose. The doctor doesn't seem to understand how bad I feel - he only cares about my levels. Has anyone else experienced feeling this way? Did you reduce your dose? What happened?
Thanks. Dave S. - Chicago, IL

 

[epileric]

Welcome Dave

I know when I was younger that was the attitude my neurologists had... Stop the seizures even at the expense of me having a productive life.

You say the Doctor doesn't understand, do you mean your GP or your neurologist when you say that? I ask because if it's your GP s/he's probably just not familiar with what to do. If it's your neurologist & you've told him how unproductive you are & s/he still thinks you should stay on those meds at a higher dose then I'd say get a new neurologist.

There are a lot of people here who are familiar with those side-effects from all sorts of anti-epileptic drugs so look around & make yourself at home.

 

[Nakamova]

Hi Dave, welcome to CWE!

Does the lower level of Lamictal control your seizures? If so, then there's no reason to be on a higher dose, especially if it makes you feel lousy. While there is a suggested range for Lamictal, there's no standard therapeutic dose or blood level. It's completely individualized. What works for one person may be too little or too much for another person.

I am on the relatively low end for Lamictal myself. My neuro originally wanted me at a minimum of 300mg, but I stopped ramping up at 250mg. I have since slowly tapered down to 175mg, and have been seizure-free at that dose for over 2 years.

If your seizures aren't controlled, then you and your neurologist should discuss trying a different medication.

Best,
Nakamova

 

[w1943davis]

Thank you so much. This is exactly what my wife has been telling me.

 

[momof3boys]

I tried Lamictal and it made me feel horriable! Bad attitued, depressed, always feeling down, and I was on edge with everything. Within days of starting it, I had sores come about on my jaw line, which I thought was just acne at first, But as the days went on and my dose increased, they got so deep, that they started to crack and bleed. Then came the swelling glands in my neck area. My neurologist said it couldnt be the lamictal, he said I had a sinus infection causing the swelling glands, to go to my primary care dr and get it checked out. Once I did, the primary care dr said i had no infections, drew blood, everything came back normal. Once she would out I was on Lamictal, she said looking it up, one severe side effect is swelling in the glands. By the time I got to see her, my neck area was so swollen, I couldnt sleep at all, and I didnt feel good. She said I was having an allergic reaction to the medication and to contact my dr ASAP. He still couldnt belive it was from the Lamictal, but said to get off of it. Once I did, within days I felt so much better. The swelling in my glands went away, the sores started to heal, and I was back to myself again.

That was one medication I will never want to be on again. I would suggest looking into a new medication to help treat your seizures.

 

[w1943davis]

Thanks. Dave

 

[RobinN]

WELCOME DAVE

My daughters third med was lamictal. It caused severe muscle aches to the point she couldn't get up off of the couch in a fetal position, and she is a competitive athlete.
Not good.
It was a very rough time in her life. Thankfully she had me to witness what was occurring, and keep good records.

After the fourth med, she decided that an odd seizure here or there was far better than the spiral downward that the meds caused.
We then moved to alternative therapies, and she did neurofeedback for about a year, and also made nutritional changes, and found supplements that were recommended.

It wasn't a quick fix but she has gained seizure control
She remains med free and seizure free for 9 months.

 

[Eibhlin]

Hi Dave,

I hope you feel better soon. I had the same symptoms as you (but when decreasing), it can affect everyone differently. My neurologist wanted me to increase my medicine when I had similar symptoms, but I know it was the withdrawal so I stuck with it.

Are you still on 150mg now?

 

[DianeParente]

Hi Davis, my daughter is on the same lamitrogine and feels crappy too! She is also having seizures on it, way more than she had before! Don't know what to do!

 

[Endless]

Hello, and welcome to the forum!

Your doctor will strive for seizure-free, no matter what the blood levels are. Are TCs the only kind of seizure you've had? Have you had any partial seizures? Sometimes the symptoms are so odd you don't know that's what they are. /The reason I'm asking is that if you've been truly seizure free for 4 years, in the next few years you may be a candidate for trying to go medication-free. Doctors want to see a person seizure free somewhere between 2-6 years before they'll try taking you off the meds. People who do try going off the meds have a 50-50 chance of staying seizure free. If you are one of the lucky 50%, you will be off the meds. If you are one of the unlucky 50%, you will have a seizure, probably miss some work, have a period where you can't drive again, etc.

I agree with what was said below. With Lamictal, your doc should be managing by seizure control, not necessarily blood levels. And you skipped a couple of doses before your blood draw, which would make the levels lower.

I'm still on lamictal. It's not supposed to affect people's cognition, but it's made my thinking cloudy and confused and zapped my memory. My moods are all over the place, with a hair-trigger temper. They say Lamictal is a mood stabilizer, but that hasn't been my experience with it. Physically, I can't sleep, I have pain deep inside my arms and legs, I'm exhausted. I am losing my hair. I'm in the middle of reducing my dose, also. I had another problem fixed that reduced my seizures, so I'm trying to figure out to what level I can back my lamictal dosage down to and still be seizure free (which I am right now - hurray!)

If the side effects of Lamictal are intolerable to you at any dose, maybe it's time to try another drug. Make an appointment, make a list of all your side effects, and communicate them clearly to your doctor. It will help him choose a medication that might be better for you. Or, maybe discuss going off the medication?

Withdrawal of antiepileptic drugs in adult patients free of seizures for 4 years: a prospective study.

Discontinuing antiepileptic drugs in patients who are seizure free on monotherapy

 

[w1943davis]

sorry for long delay in response my doc only cared about blood levels,would not even listen to the side effects. at the time i was 4 years withot a seizure. first, i cut the dose in half, shortly talked to my primary care guy. he told me to stop completely
have been off fof several months
dave

 

[Nakamova]

How are you feeling off of the med? Are you seizure-free (hopefully)? If so, then congrats!