Adding gabapentin

[sjconner]

My neuro offered me a choice about adding a new med to the lamotrigine I am already taking (with no side effects). I have been seizure free (3 months) at a very, very low therapeutic dose of lamotrigine (125 mg twice a day). But he isn't sure that the dosage is enough to keep me seizure free. I have horrible headaches at 150mg twice/day. He added gabapentin (neurotin) at 100 mg three times/day. I started on Wed, Sept 4th. So far so good ... just feel a little light headed if I don't eat before or right after I take it.

However, I have noticed, at night, that I feel like my body has stored energy/strength that it wants to release. I am not sure how to describe it ... like my body wants to start moving around but doesn't. During this time, I also jerk a few times lying in bed ... I am not even close to being asleep. When I have hypnic jerks they have an outward motion and I am just about asleep. These are an inward toward the body type motion. I am not sure if will make any sense to anyone.

 

[Nakamova]

Those sound a bit like how restless leg syndrome feels. Did the sensations coincide with taking the Gabapentin? If so, let your doc know, particularly if they persist or get worse. Gabapentin shouldn't be causing them (in fact it's sometimes used to treat rls), but as you know, the meds can be very unpredictable.

If you don't already, you should avoid caffeine, and make sure you get enough iron in your diet (both things can contribute to restless leg syndrome.) And you might try adding a magnesium supplement after dinner or before bed -- it can help with jerks or cramps.

 

[sjconner]

I looked at RLS. I don't feel the need or compulsion to move. I feel like my body is getting ready to take off and move without me. When I feel this way, my left shoulder jerks upward and once or twice my whole body jerks.

Going to sleep is hard - sometimes I am kinda scared to go to sleep. In May, I had a T/C while I was sleeping. Hubby got to witness the end of that. He sleeps through everything and I actually woke him up. One morning, about a month later, I "woke up" and didn't know anything. My mind was totally blank. My seizures just started last year and I was diagnosed in December.

I am just trying to make sense of everything and nothing makes sense.
:dontknow:

 

[Nakamova]

Give the nighttime magnesium a try -- it may help, and it can't hurt.

 

[masterjen]

Makes sense to me, and I've had something similar. In my case RLS was ruled out, and the issue progressed enough (although it was never intolerable) to fit the definition of myoclonus, according to two specialists (one of whom was a neuromuscular neurologist). I had been on lamotrigine about 6 months when it started, although both doctors did not feel it to be the cause and felt the myoclonus would likely have developed anyway. Eventually I was taken off lamotrigine because it wasn't helping with the other seizure types. Oh, and my blood level of magnesium was a little above the normal range, and it was recommended that I not take more as a supplement.

 

[Nakamova]

my blood level of magnesium was a little above the normal range, and it was recommended that I not take more as a supplement.

Your docs may well have been right about the magnesium, but blood levels for magnesium are not usually a reliable measure. It has to do with the way the body works to keep blood levels at an equilibrium. The same thing is true of calcium -- you could be very deficient, your bones could be crumbling, but your blood calcium levels would be fine.

 

[sjconner]

The shoulder jerks are the same ones I had during my second EEG. My left shoulder starting jerking during the strobe light portion. The further into the strobe section I got the worse they got. My shoulder continued to jerk on the 2 hour trip home. The tech said he would note it but I don't know what became of the note. I should ask at my next appt or phone call. My body didn't respond at all during the first EEG. Both EEG's were clean and about a month apart.

 

[Nakamova]

Definitely let your neuro know about the jerking. Does it happen in other situations where there is strobing or fluorescent lights.

Don't know if will help, but you could try progressive relaxation when you go to bed. It's a very gradual process of inhaling and exhaling accompanied by tensing and relaxing your muscles starting at the toes and working your way up to the head/face/neck. You can read about it in more detail in "Epilepsy: A New Approach"
[ame="http://www.amazon.com/Epilepsy-New-Approach-Adrienne-Richard/dp/book-citations/0802774652"]Epilepsy: A New Approach: Adrienne Richard, Joel Reiter: 9780802774651: Amazon.com: Books@@AMEPARAM@@http://ecx.images-amazon.com/images/I/51p9fv6oOYL.@@AMEPARAM@@51p9fv6oOYL[/ame]