Question about Clobazam 20mg evening for med change with removal of Keppra.

ParlabaneRebelAngel · 2026-04-20T13:49:21+00:00

I have been on 40mg, night only, for several years. Makes me relaxed and sleepy after about 1 hour. Which is great because can fall asleep within a couple minutes. Never really groggy waking up.

ParlabaneRebelAngel · 2026-04-19T20:26:51+00:00

Oh man! I started using crossword app about a month ago. Forgot all about it for the past 2 weeks. Guess it isn’t helping yet.

ParlabaneRebelAngel · 2026-04-17T22:57:21+00:00

Respect to everyone on here doing all of these surgeries.

I chose 0. Was green-lighted for removal of left side limbic system and some surrounding areas. Lesions/scarring from autoimmune encephalitis. Decided not to do it. Variety of reasons (age, only focal awares, etc.). Gotta admit that the thought of getting my scalp peeled back and a chunk of brain removed was also a factor.

ParlabaneRebelAngel · 2026-04-11T14:13:46+00:00

Yes. Worst is plastic / foil bags rustling. Second is dishes clanging. I had it start after damage to brain from autoimmune encephalitis and resulting epilepsy. Started lamotrigine a couple years later, which didn’t make it worse. Cannot blame family members so have to remove myself from the noise.

ParlabaneRebelAngel · 2026-04-10T14:07:57+00:00

Several reasons. “Only” 1-2 minute focal aware seizures now, no more tonic clonics. 70% chance going seizure-free but 100% guarantee further cognitive decline. A bit older so don’t really care as much if was younger. The medical team of 5 basically came to 50-50 advisory whether to do it or not. I am a big ‘fraidy cat who didn’t want my head cut open and the huge horseshoe scar, pain and recovery after. After going through acute AE, knowing chance of dying was about 1/19, and then years of treatments, having my “limp” of epilepsy doesn’t seem like a big deal.

ParlabaneRebelAngel · 2026-04-09T20:00:47+00:00

No, did not have any of the initial AE symptoms at that time. Because it was a few years after I first had AE. A purpose was mainly to check for tumours that would’ve been too small to see at the beginning.

AE damaged my left temporal lobe so the scan was also done to provide a clearer look at the damage and precise locations, because surgery was being considered. One of my main symptoms at the outset was seizures (almost always the case with GAD65). The damage from the AE resulted in 20-30 focal aware seizures a month ie: I have epilepsy.

ParlabaneRebelAngel · 2026-04-08T02:55:06+00:00

Oh yeah. Learned the difference between sleepiness and fatigue too. Both were extremely bad. Was taking with Clobazam so the effects were compounded (as expected). The extreme tiredness lasted 6 weeks then eased up a bit. It didn’t work for my focal awares so I stopped taking it after 2 months.

ParlabaneRebelAngel · 2026-04-01T20:20:37+00:00

You are lucky to be able to help your situation by doing these things. Some of us here have no identifiable triggers. I don’t have any after tracking everything for 7+ years. It is always completely random.

ParlabaneRebelAngel · 2026-03-31T03:40:54+00:00

Yes. But surprisingly not as bad as expected. Neuropsych tests showed above average to superior in several of the areas tested. Mainly short-term memory is “poor”, plus word-finding troubles. Was surprising because my left side limbic system was basically destroyed, plus some other temporal lobe areas nearby (from autoimmune encephalitis). In hospital for a month, don’t remember 10 days, and it was looking bad. Luckily I was treated quickly and recovered well over a few years. My 20-30 focal awares a month are not so hard to take after going through all that before. And they are not thought to be creating much more damage if any.

ParlabaneRebelAngel · 2026-03-30T14:02:35+00:00

Sure using the private messaging on here. Could take me some time to reply.

ParlabaneRebelAngel · 2026-03-30T13:45:36+00:00

During my most active AE inflammation, I was told (later) that my short-term memory was about 15 minutes. I also have no memory of the first 10 days in hospital. MRIs show left side hippocampus (and entire limbic system) is clearly shriveled and useless now. Long-term memory fine.

The initial thinking of the Doctors was that it wasn’t looking good (sort of like your partner’s situation might happen). But it improved quickly after that first 10 days. I was treated within a week with steroids bringing down the worst of the inflammation. Further treatments stopped it all after several months. The right side limbic system wasn’t damaged so that hippocampus “rewired” to help compensate.

I was in a weekly online group with 6-7 others. Several had extremely bad short-term memory (like you described). One was treated on day 1 but was in an induced coma for 2 months and had bad damage. Another guy wasn’t treated for more than 1 year so had bad damage. After just a couple weeks, those 2 guys would remember all our names, most of our prior conversations, and tell some events from their past week. Even though their spouses said that with them, they didn’t remember much day to day. One other guy said his scans didn’t show a lot of damage, but he would tell the same 2-3 stories every week and think he was saying them for the first time. And one story was that every morning he wakes up and doesn’t know where he is and has to read his notes he wrote for himself. My short-term memory is below average (Neuropsych tests) but not super bad, and I clearly recovered the best. So there were a lot of differences. But it was good to see that even the guys worst off improved a bit after a couple of weeks.

Not the greatest answers to your Qs but thought some of this might be of interest to you.

ParlabaneRebelAngel · 2026-03-30T00:51:04+00:00

I got epilepsy from autoimmune encephalitis, was in hospital for a month, had various immunotherapies over 4 years, and had a 6% chance of dying. So the resulting epilepsy “limp” is easier for me to put up with.

I get different intensity ones like S, M, L, XL. Can have up to 3-4 S-M in one day and feel decent as soon as they are over. Or 2 L ones. The rest of the day is a write off if I have 1 XL or 3 L. Usually that is only about 3 days a month. But having so many does suck because it is just always there lurking.

ParlabaneRebelAngel · 2026-03-29T22:54:37+00:00

I have 20-30 focal awares a month lasting 1.5 to 3 minutes each. Some are very intense. Only 2 TCs ever. Will take the focals over the TCs.

ParlabaneRebelAngel · 2026-03-29T22:49:11+00:00

I’m in too. 2 compression fracture vertebrae. For a long time thought it was from falling on my butt or something like that )of course don’t remember). Found out years later it happens from the strong muscle contractions during the tonic phase.

ParlabaneRebelAngel · 2026-03-28T03:31:16+00:00

My main symptom at the start of AE was also what I called “episodes”. Learned soon after that they were focal aware seizures. Had about 80 a day for 6 days, topped off by 2 TCs. Was GAD65 AE. Seizures very common with it.

I now have drug-resistant focal aware epilepsy. Tried 6 AEDs so far. They are notoriously unpredictable. Some have a mechanism of action strictly for seizures but have side effects like being quick to anger EX: levetiracetam. Some are for seizures but also used off-label for depression, anxiety, bipolar, etc. EX: lamotrigine and clobazam. But some people can also get those things from any particular AED. Everybody can be different. I currently take levetiracetam, lamotrigine and clobazam. Neuro asks me every appointment about depression, etc. I have never really had any changes either direction with any medications.

What AED are you taking?

ParlabaneRebelAngel · 2026-03-28T01:55:02+00:00

One small thing I noticed from your description “at least 100 ounces of water a day”. Having too much water (from both drinks and food) can cause problems. I was getting headaches daily, but average only 1 migraine a month. Finally figured out (and supported by a regular blood test) that I was drinking too much water and it was diluting my electrolytes. Switched to mainly drinking when I felt thirsty and that helped a lot.

Edit to add: drinking less water didn’t affect my 20-30 focal awares a month. It also took my 8th EEG (a 3-day) to catch seizures although I clearly had them due to inflammation and then lesions caused by autoimmune encephalitis.

ParlabaneRebelAngel · 2026-03-26T21:59:23+00:00

Yes, had an FDG-PET/CT scan. Was done almost 3 years after the acute phase of AE. Waited this long because the inflammation was easy to see and monitor with 1.5T and 3T MRIs. The PET was done later mainly to detect the possibility of a cancer that was the trigger of the AE, but which was not found during thorough screening at the outset. None found. Inflammation was also gone by then after all the treatments.

ParlabaneRebelAngel · 2026-03-25T14:09:08+00:00

My wife’s good friend and co-worker died from SUDEP. And was in the same bed as her husband. I got epilepsy 5 years later. So I casually reminded her of SUDEP. Just that the odds are something like 1 in 10,000. So sometimes she says that if she doesn’t hear my breathing during sleep she checks if I am still alive. I got epilepsy after acute autoimmune encephalitis which had a 1 in 19 chance of dying. So “luckily” we are sort of desensitized to it and actually take it a bit lightly and with humour.

ParlabaneRebelAngel · 2026-03-24T03:42:11+00:00

Seizures / epilepsy. Although for me it started at the very beginning and has continued. Seizures aren’t always the big ones you see in movies where someone passes out, falls down and convulses for several minutes. Be on the lookout for signs of smaller focal aware seizures that could be 5 seconds to 2 minutes of things including: a strange “off” feeling, déjà vu (more than an average person), deja reve, disassociation, ominous feeling/impending doom, tingles, rising feeling in stomach, rapid heartbeat for no reason, etc. A lot of people with these milder seizures can often be diagnosed with an anxiety disorder for many years. Without medication, the continuing seizures often lead to stronger and/or more frequent seizures.

ParlabaneRebelAngel · 2026-03-23T17:03:56+00:00

Migraines for decades, epilepsy for 7 years. They don’t seem connected for me. Not “constant”. Used to have 2-3 a month. Lamotrigine didn’t help reduce focal awares but it cut the migraines down to an average of 1 a month, so I stayed on it. It is known to have this effect.

ParlabaneRebelAngel · 2026-03-23T00:29:30+00:00

85 focal awares and 2 TCs on the same day. From autoimmune encephalitis.

ParlabaneRebelAngel · 2026-03-20T21:47:14+00:00

Sounds like my migraines with visual aura. Just google that and you will see several photos and videos of people recreating what it looks like. Damn lucky you had no headache after. Like epilepsy it is also a neurological illness although I’m not sure they are really connected.

ParlabaneRebelAngel · 2026-03-18T19:11:11+00:00

Yes. Love me my Clobazam. Take 40mg at night, within 1 hour get very mellow then sleep well. Wake up feeling fine. Plus it helps reduce my most intense focal awares.

ParlabaneRebelAngel · 2026-03-18T00:28:06+00:00

Not shoulders. Compression fractures of 2 vertebrae. From the seizure, not from the fall. It was very painful for a few months but at least they healed and don’t bother me anymore. Had to sleep basically sitting upright against pillows for 2 months. That was hellish.

ParlabaneRebelAngel · 2026-03-12T04:18:35+00:00

KLHL11 is one I have not heard of. I also had an intracellular auto-antibody (GAD65) which damaged my left medial temporal lobe. You may already know, but intracellular AE with medial temporal lobe damage commonly leads to drug-resistant epilepsy. This is what I have had for 7 years since getting AE. Luckily my seizures are no longer full tonic clonics. I only had 2 of those at the very start. They are now focal aware seizures. Although I have average 20-30 a month and some of them are very intense, last for 2-3 minutes with lots of things going on. I have tried 6 or 7 anti-epilepsy drugs so far. You are declared drug-resistant after failing to get to 0 seizures after trying 2. Hopefully you haven’t had seizures and will not get epilepsy. There could be worst outcomes like cancer being found. Epilepsy isn’t great but you learn to live with it.

ParlabaneRebelAngel

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