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Sudden Change in JME symptoms due to Lamictal and/or Grand Mal?

Sat, 05/21/2011 - 18:32

For the last two months I have been feeling really dizzy most of the time and am having short-term memory loss at times. I am on 200mg of Lamictal at the moment and I wonder if people at the same dosage are experiencing similar symptoms?

I am 25 and was diagnosed with JME 7 months ago, after having a grand mal seizure. In the following months I had more myoclonic jerks than before the grand mal. It used to just be when I drank too much. Now, I also had them after simply not getting enough sleep. After three months I was put on Lamictal and titrated up the dosage as follows:

Week 1 & 2: 25mg in the evening

Week 3 & 4: 25mg in the morning and 25mg in the evening

Week 5 & 6: 25mg in the morning and 50mg in the evening

Week 7 & 8: 50mg in the morning and 50mg in the evening

Week 9: 50mg in the morning and 100mg in the evening

The drugs helped and I had less myoclonic jerks. They basically only happened after I drank.

Five months after the initial grand mal, however, I probably had another one. I had had too much to drink the night before and felt bad when I got up. There is about half an hour of that day that I cannot remember and I had a tongue bite.

Thats when it really started to go downhill. The following week was very stressful because I moved from Europe to the States. I decided to stop taking the drugs and slowly reduced them for two weeks, but it didnt help. Ever since the symptomps have been there: Feeling dizzy and short-term memory loss.

Over the last 6 months I have had two CT's done and both were negative.

What is wrong with me? Is it because of the up and down with the Lamictal? Have people experienced these side effects as well? Might I just not be the right candidate for Lamictal? Does JME get worse after every grand mal seizure?

Comments

Sudden Change in JME symptoms due to Lamictal and/or Grand Mal?

Submitted by pdqbach69 on Mon, 2011-05-23 - 10:31

Hi there.  I also have JME.  You are fortunate that you were diagnosed early.  I had my first GM at age 16.  I wasn't correctly diagnosed until my 30s when I finally saw an epileptologist.  I'm on 800 mg/day (400 mg 2X/day), of Lamictal and haven't experienced any increases in dizziness or memory loss.  Occasionally I do experience momentary lapses but that may be due to the aging process since I'm in my 40s. 

I don't seize that often (maybe once or twice per year) so I believe Lamictal is working for me.  You may need a higher dose of Lamictal.  I'm on a fairly high dose relative to the manufacture recommendations but everyone metabolizes drugs differently.  You may want to consult with an epileptologist (a neurologist who specializes in treating people with epilepsy) for a recommendation. 

I don't believe that JME gets worse after every grand mal seizure but in my situation I no longer remember having myoclonic jerks prior to having a grand mal seizure (they happen so fast!) even though I used to when I was first diagnosed.   You really should limit your drinking or give it up all together.  Alchohol will increase the absorption of your meds which shortens the half life making you more vulnerable to having a seizure.  The good news is JME is controllable but it is a lifelong condition (with very rare exceptions).  Depakote is the drug of choice for JME.  However it can cause weight gain and liver damage so I stay away from it.  I understand your frustation.  Stay in touch.

Warmest regards,

Jay

Hi there.  I also have JME.  You are fortunate that you were diagnosed early.  I had my first GM at age 16.  I wasn't correctly diagnosed until my 30s when I finally saw an epileptologist.  I'm on 800 mg/day (400 mg 2X/day), of Lamictal and haven't experienced any increases in dizziness or memory loss.  Occasionally I do experience momentary lapses but that may be due to the aging process since I'm in my 40s. 

I don't seize that often (maybe once or twice per year) so I believe Lamictal is working for me.  You may need a higher dose of Lamictal.  I'm on a fairly high dose relative to the manufacture recommendations but everyone metabolizes drugs differently.  You may want to consult with an epileptologist (a neurologist who specializes in treating people with epilepsy) for a recommendation. 

I don't believe that JME gets worse after every grand mal seizure but in my situation I no longer remember having myoclonic jerks prior to having a grand mal seizure (they happen so fast!) even though I used to when I was first diagnosed.   You really should limit your drinking or give it up all together.  Alchohol will increase the absorption of your meds which shortens the half life making you more vulnerable to having a seizure.  The good news is JME is controllable but it is a lifelong condition (with very rare exceptions).  Depakote is the drug of choice for JME.  However it can cause weight gain and liver damage so I stay away from it.  I understand your frustation.  Stay in touch.

Warmest regards,

Jay

Re: Change in JME symptoms due to Lamictal and/or Grand Mal?

Submitted by ez064662 on Mon, 2011-05-23 - 10:34
I've had a bit of dizziness myself on Lamictal, but nothing too severe and I haven't experienced any memory loss. I did have a big problem with Dilantin when I was first on it (anxiety, short term memory loss, shaky hands), and switched to Tegretol XR which worked great for many years. Perhaps all you need is a switch to another drug. I'm on Lamictal now because it's the least harmful (theoretically) to developing fetuses and I'm trying to conceive. I titrated up like you did, which is common with Lamictal to prevent adverse side effects (like severe rashes). I would never recommend ever going off the drugs, or even lessening the amount without a doctor. I had my only breakthrough seizure on Tegretol when I did that. My supply was interrupted due to a cross-country move, I was under a lot of stress (the big move and my search for a new job), and I'd been drinking more heavily. I've had 2 breakthrough seizures on Lamictal in 6 months, each time my doctor upped my dose (now at 225mg, twice a day). This drug seems a lot more susceptible to drinking (at least in my opinion). I never had this problem with Tegretol, but maybe my dose was high enough to counteract it. However, drinking is discouraged with any of the anti-convulsants. Or rather, anything more than a glass of wine or something similar. I would suggest working with your doctor to try out something new and to cut out the drinking, or at least lessen it.

Re: Sudden Change in JME symptoms due to Lamictal

Submitted by patzh on Mon, 2011-05-23 - 21:10

Thank you guys for your replies. I really appreciate it.

I have pretty much given up drinking, aside from a beer now and then. But the dizziness is still there... It is just so frustrating not knowing what the reason for my dizziness is. I was doing fine for a while with the drug and my CTs have been negative. So what can it be?! Has anybody else experienced this kind of extreme dizziness with Lamictal?

Thank you guys for your replies. I really appreciate it.

I have pretty much given up drinking, aside from a beer now and then. But the dizziness is still there... It is just so frustrating not knowing what the reason for my dizziness is. I was doing fine for a while with the drug and my CTs have been negative. So what can it be?! Has anybody else experienced this kind of extreme dizziness with Lamictal?

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