seizure morphing

[Maidenminx]

First off, I would like to apologise for simply posting my own problems but not commenting on others very often. Even when I can relate I find it hard to find words.

Now to what has me confused. When I was first put on tegretol, I'd had one grand mal, many suspected simple partials, some migraines and photophobia, and the occasional complex partial that would render me unable to move or sleep. As my dosage of tegretol increased I had more migraines, more photophobia and more complex partials. The simple seizures didn't change and on tegretol I had my second grand mal. Once the migraines got unbearable I was switched slowly to lamictal. Slowly but surely the simple partials went away, as did the migraines but I started developing myoclonic jerks. My complex partials changed from some sort of limb and vocal paralysis to extreme muscle weakness in the legs. Tonight I had muscle weakness, which led into about a minute of the word paralysis combined with myoclonic jerks. It's left me exhausted and woozy but I couldn't tell anyone how bad I was feeling because everyone was already in worry mode.

So before I go on a self pity trip, I was wondering if anyone else experiences this kind of change in seizure activity when their meds or dosages are changed? It's freaking my family out and I'd love to be able to tell then it's a normal part of the process...

 

[julie wishes]

Happening to me but just on my first med generic Keppra. I just dont understand or know if this is normal. Its freaking me out. I dont know if the seizures are morphing ( good word btw) or if I'm. having panic attacks from the keppra. Never had them before. Been awake for three hours miserable with it all though. I hope we both get some answers. Tonight has been one of the worst. Sounds the same for you.

 

[Cint]

Hi Maidenminx,

I've tried many AED's over the years and my seizure activity did initially change as well. It does take a while (some times a month or more) for your body/brain to get used to the drug as you slowly titrate the dosage. Sometimes the seizures will increase until you get to the therapeutic dosage.

Years ago when I was first put on Tegretol, I got very sick and eventually went status, so ended up in the ER and spent three days in the hospital. Let the dr. know if you are feeling sick.

 

[Silat]

My seizures seem to adapt themselves to the medicine as well. "Morphing" is a great word to describe it.

On certain meds, TCs seem to break through, but no other type of seizure will occur.
On others, I'll not have a single TC seizure, but partials will come and go.
On others, I'll have partial-complex seizures, with no partials and no TC.

For me, it seems like I build a tolerance to the medication about 4 months after being at the dose I'm supposed to be on. So once my body has adapted to it, it'll be about 4 months and then all my seizures will start coming back, as if I'm not on any medication at all. I don't know why this happens, however it's frustrating for both myself, and my doctors, who have come to expect me to call about 5 months after my last change of doses/medicines to tell them that my seizures are back again.

I guess I should also point out, most of mine are partial-complex and simple-partials. TC seizures have, thankfully, been fairly rare for me. The other two types have been more common than I'd like them to be.