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Bad absence seizures withdrawing from Aptiom

Epilepsy & Seizures | Last Active: Nov 16, 2023 | Replies (11)

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@santosha

Hi @kimroepke
It seems we have the same type of epilepsy. I have also temporal lobe epilepsy with a lesion on my hippocampus on the left side (mesial temporal sclerosis) with complex seizures. My epilepsy is also refractory (DRE - drug-resistant epilepsy).
Is your lesion on the right or left side? Is it also on the hippocampus?
I have taken Vimpat for a while (my last AED before changing to medical cannabis early 2021), having had many side effects. Those side-effects of depression and fatigue I have also experienced. Vimpat did reduce my seizures, but did not control them 100%. I have been treated with medical cannabis for almost 3 years. I also follow a gluten-free diet and this has reduced my seizures greatly (more than 60%). Following this diet has been much easier than I thought, it is not hard at all. I also try to control my seizures with the management of my triggers. Yoga helps me much to reduce my stress and improves my sleep, my two major triggers of seizures. I still have complex seizures, an average of 2 per month, but they have become milder and shorter compared to the time I was taking AEDs.
I have tried 5 AEDs (Lamictal, Tegretol, Trileptal, Vimpat and Gabaneurin) before medical cannabis. You have asked if it is normal to have seizures when changing medications. This happened to me when I changed from Tegretol to Trileptal and from Trileptal to Vimpat. With the change to Trileptal, I had my first tonic-clonic seizure, because this medication has reduced much my sodium level, having I learned that low sodium is a trigger to my seizures. So, the transition from Vimpat to medical cannabis was done very carefully and in a 6-month time frame, so as to avoid seizures as much as possible. Every two weeks, the doctor would ask me to increase my dosage of medical cannabis and one week later to reduce my dosage of Vimpat (this smooth transition was not done when the AED medication was changed, the doctors were others).
If I were in such a situation again, I would ask my doctor how long he or she intends to test Vimpat in you. The doctors who treated me at that time with AED never gave me a time frame, leaving me very anxious because of the side effects. Those doctors would only say, hold on, these side-effects will smoothen with time, but without giving me a time frame. Nowadays, if I would be in a situation of trying a new AED, I would give myself a time frame of a maximum of 3 months to adapt to the medication.
Stay strong!!!!
Best wishes,
Chris (Santosha)

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Replies to "Hi @kimroepke It seems we have the same type of epilepsy. I have also temporal lobe..."

Mine is on the left side, but it’s creeping to the right. Mine is on my hippocampus. They think it is the Aptiom causing the seizure. With Aptiom I didn’t have a seizure from February until this one. I am alone all day while my husband is at work, so I actually might have had some other seizures. This one was extremely different though. It affected my entire body. My neck and teeth are even hurting. I will definitely give it 3 months. Thank you for giving me that info. What exactly is medical cannabis?