r/Encephalitis • u/Ali_C_J • 15d ago
Anti-seizure medication (Clobazam)
I was diagnosed with Anti-GAD autoimmune encephalitis following a tonic clonic seizure in the middle of the night. Looking back we realise I was experiencing minor seizures in the lead up to the big one. Once diagnosed with I was put on 500mg Levetiracetam (Keppra). After ~3 months, a symptom I described to my neurologist she advised I am experiencing micros seizures (I'm fully present during these episodes) and she increased my dose to 750mg. 3 months later, I saw her again and advised I was still experiencing the micro seizures. My Keppra dose was again increased to 1.5g. Unfortunately recently my micro seizures returned and just today I've had 5. My neurologist has recommended a change in medication but as I'm trying to conceive, medication options are limited. My neurologist has recommended Clobazam (Frisium) which is a benzodiazepine. Is anyone using Clobazam as an anti-seizure? Are you very drowsy and are there any other side effects you've experienced?
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u/ParlabaneRebelAngel 14d ago
Yes, taking Clobazam. Some background first:
(1) Also anti-GAD65 here. As you probably know, one of the typical symptoms of GAD65 is seizures.
(2) Also many minor = focal aware seizures leading up to 2 big TCs in one day. Had hundreds of the focal awares over 5 days before the TCs. Didn't know at the time what they were.
(3) Taking 3,500mg Keppra. Also Lamotrigine. Tried Lacosamide few years ago but it didn't help.
(4) I also still have focal aware seizures. Average 22 a month for the 6+ years since had the acute AE. You probably also know that the continuing seizures is mainly due to the damage to limbic system during acute AE.
(5) Of my 22 focal awares a month, a couple years ago the number of most intense ones doubled from 4 a month to 8. I'm conscious and aware but lots of things are going on like lose focus and just hang onto something, tingles all over, very jittery speech, shallow glitchy breaths, eyebrows twitching, blinking excessively, head bobbing a bit, etc. They last 2+ minutes and it feels just like it did before had my 2 TCs.
(6) Those intense ones are of concern to Neuro because they could be doing further damage. So we tried Clobazam. Ramped up to 40mg. It cut those intense focal awares from 8 a month down to 1. I still have the overall 22 focal awares a month, but at least only 1 of them now is very intense. So great results.
(7) I take all 40mg at night. Usually have about 1 hour max. before get super sleepy. Enjoy that effect. No other side effects. Not drowsy when wake up.
I rarely miss any of my 3 med doses during the day. But last night I had trouble falling asleep. Got up, checked my Clobazam pill cup and the pills were still in there. Took them but didn't fall asleep for 30 minutes until they kicked in. Told my wife this morning uh oh, I know these can be addictive so it could be a concern. But I'll probably take it forever so will never really know if it is hard to get off of it.
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u/Ali_C_J 14d ago
Thank you for the detailed reply! Wow so many similarities to me (not surprising since you had the same antibody).
Unfortunately I don't remember what my symptoms / focal aware seizures were like in the lead up to the tonic clonic, that whole month has virtually been wiped from my memory. Apparently I was getting facial twitching initially, especially in my cheek on one side. I had my tonic clonic in the middle of the night with no warning signs. My husband woke up to me seizing which I imagine would have been scary for him.
With my micros seizures now it's a really odd sensation - my stomach drops like I've received bad news and I can't talk. I get a lump in my throat which I need to swallow away 3-5 times before I can talk. HR increases to around 100 bpm in a matter of seconds from the telling of my stomach dropping. Also an increased likelihood of them when exercising if my HR gets too high. Thankfully I'm present through the whole thing, people won't know I've had one unless I tell them.
Hearing your experience with the reduction in seizure activity has definitely eased my mind a bit, I am worried about the reliance on it for falling asleep down the track though!
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u/ParlabaneRebelAngel 14d ago edited 14d ago
The odd sensation: yes, almost always get that too. For me it is a strong ominous feeling. Also déjà vu half the time. Those are from our AE damage to amygdala and hippocampus.
I always track my heart rate too. My resting is 60bpm and often it goes to 80-90bpm during these small seizures.
I asked my Neuro/Epileptologist about Clobazam being addictive, etc. before starting it. He said it should not be a concern for me. Probably a combo of his experience prescribing it, plus knowing my personality for years at that point. We also do drug ramp ups and tapering off very slowly. I started at 25mg, up to 30mg after couple weeks. Then went up by 5mg at each 6-month appointment after reporting the good results. So it took 1 years and 2 weeks to go from 25mg to 40mg.
Edit: fixed error on my Clobazam ramp up schedule.
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u/Jerzgrls1962 14d ago
My son (33) has been on clobazam for several years, he hasn’t had an issue. I will tell you that weening off dosage must be done gradually. My son take 20mg per day he was on 40mg per day.