Bad absence seizures withdrawing from Aptiom

@kimroepke
I've had Epilepsy for 57 years and changed medication quite a few times and only had a couple seizures, at least that I can remember. I never took Aptiom however. Were you discontinuing Aptiom according to doctors orders? Had you started taking Vimpat while decreasing Aptiom?
Absence seizures generally last a few to maybe 20 or so seconds. But I’m wondering if you were in Absence Status Epilepticus because of the duration. Personally, I would think 2 days is excessive.
I have been told it took a man 30 days to fully recover from a long Tonic Clonic seizure. whether it actually happened I don’t know that’s just what he told me. Do you usually have Absence seizures of any duration or only Focals. Have you talked to your Neurologist about this incident? If not, I would contact h/her.
I hope you keep us informed about this episode.
Take care,
Jake

Regarding my epilepsy I have been diagnosed as having Temporal Lobe Epilepsy/Focal Complex Partial Epilepsy Intractable
Without Status Epilepticus and Sclerosis Temporal Mesial. I have both gelastic and absence seizures. I had the MRI laser ablation surgery in March of 2020 which helped my seizures dramatically. I’ve also been on Aptiom since 2019. I built up a tolerance to it and now my body doesn’t absorb sodium. I can’t keep my body temperature up. It keeps dropping very low which causes many problems and I have to be hospitalized. I have my Minnesota Mayo Clinic neurologist working with my Nashville Vanderbilt neurologist. They both decided to taper me off of Aptiom and onto Vimpat over 4 weeks. I’m on week 4 and I only take 200 mg of Aptiom this week and I was on 1600mg. Next week I’ll be taking 200mg Vimpat (lacosamide) twice a day and no Aptiom. I usually have seizures for a minute or two. This time I was on a zoom call with a doctor who was working with a Dartmouth Epilepsy Program. I didn’t respond over 15 minutes, so she finally called my local police. They sent an ambulance and took me to the hospital. I don’t remember any of it. That was Thursday afternoon and it’s Tuesday evening and I still don’t feel right. I’ve never had an experience like this before. I’ve been talking to my Local Neurologist a lot. He’s managing things since I’m not in Minnesota right now. I’ll let you know what happens. Thanks for checking on me.

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)

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?

@kimroepke
If the Aptiom worked so well all these months, what is their reasoning for the medicine causing this unusual one?
Jake

@kimroepke
The actress, Patty Duke had bipolar, and I believe I remember her talking about lithium saying that, although it worked well for her, it can sometimes produce the opposite effects.
So I was curious if this anger issue started when you began taking Lithium, or if it could have started after as a result of the lithium. I think it also could have this reaction if the dose is to high. Might be worth talking to your doctor about I would think.
Just a thought,
Jake

Thank you for the information. I talk to my physician’s often, so I will. My lupus has created a lot of problems too and my body fights everything they give me. They’re sending me to a nephrologist after Thanksgiving, because my kidney blood counts are starting to be affected. I’m just a science experiment. I have little to lose since I have drug- resistant epilepsy. I’ve come a long way though, because I was have an extreme number of seizures before my surgery. I have so much to be thankful for.

@kimroepke
Hi Zippy,
I am really sorry for all the hard experiences you have been going through. I truly wish you get better and find some peace!
Medical cannabis or medical marijuana is a natural medication that comes from the plant medical sativa. It is not the same as pot. Here is a link with more information: https://www.mayoclinic.org/healthy-lifestyle/consumer-health/in-depth/medical-marijuana/art-20137855#:~:text=Medical%20marijuana%20is%20a%20term,)%20and%20cannabidiol%20(CBD).
I have had very few side-effects with it, just a bit of somnolence after lunch that I solved with a yoga nidra practice, feeling renewed after it. Up to now, this has been the best medicine I have tried for my epilepsy. In the US, it is sold under the name of Epidiolex. Unfortunately, there is still much prejudice against this natural medicine. Not many doctors are yet acquainted with it and how it works. There are also many obstacles created by Big Pharma.
About medications that all of a sudden stop working, I have heard from some with epilepsy having this experience, unfortunately.
You said that your lesion is also on the left side. How did your memory feel after the laser ablation surgery? Did you notice many changes?
Because of my drug-resistant epilepsy, I have been investigating and diving more and more into integrative medicine solutions. There is a well-known neurologist in the States with such an approach, called Dr. David Perlmutter. He has a very interesting Newsletter. I have also watched some of his presentations at the Alzheimer's World Summit (my mother has Alzheimer's) and enjoyed much what he said (his father died from Alzheimer's).
In one of his newsletters, he mentions Epilepsy & Gluten Sensibility. Check this link: https://www.drperlmutter.com/epilepsy-gluten-sensitivity/. If I were in the States (I am in São Paulo, Brazil), I would try to get an appointment with this neurologist and neuroscientist.
"When we think that everything seems to be going wrong in life, it is often when we are on the right path!". I have explained those thoughts better in this post: https://connect.mayoclinic.org/discussion/does-it-ever-get-better/?pg=2.
Have faith!
Chris (Santosha)

Thank you for this information. I will definitely study up on everything you mentioned. Regarding my surgery. Yes, it affected my memory in a big way. It left me on a preschool grade level at first and I still can’t remember much from the last 5-10 years. Lucky for me I’ve always taken pictures and been extremely organized. I made a tub for each year and each day I try to work on my life’s memories for about an hour. In addition, I work on grade level workbooks, puzzles, history, etc. I’m now on about a third grade level when it comes to academics. Luckily, I only took pictures of the happy times in my life, so that’s all I’m relearning. I’ve also been able to remove all of the negative people from my life. I do get extremely lonely and depressed, but I change activities each hour to move through each day. My faith has increased dramatically. I don’t know what I’d do without it.

The sodium issue caused them to take me off of it. Apparently, some patients build up a tolerance. My body could no longer accept it. My body wants it, but it causes my body temp to drop so low. It even did that the other day when the ambulance got here. The doctors are still learning about these drugs. Apparently, this has happened to other patients, because it’s listed as a side effect on Aptiom’s website.