AVM Survivors Network

Paranoid after Grand Mal seizure

I was doing just fine and had gotten lucky on my medication but out of the blue after 2 years seizure free I had one :weary: And I don’t remember a thing!! Anything I do is from what my husband explained and walked me through. Not only that!! My heart rate was at 107 and I was sleeping!! I’m so scared now cause I could’ve died!! I haven’t been this paranoid since my AVM was active!! But luckily after my 2 year angio, that thing is still dead and awaiting treatment (next year awaiting fda approval) to treat one of my remaining two aneurysms. Hopefully I don’t lose my battle to either aneurysm or another seizure:/ I guess I just got comfortable because I have regained so much back and wanting to embrace my new “normal” but alas tranquility health wise never stays for too long…

wow… I’m sorry to hear that did you change anything in your lifestyle maybe your body just got to use to the current seizure meds?
Knock on wood have never had a grand mal seizure just some partial simple seizures; I want to get off my Keppra but maybe I’ll think twice about that now…

I was on the lowest dose but I had been on it for 4 months already and no life change nor skipped any medication so trust me I am just as confused as to why it happened /: I am so scared now though!! I don’t recall a thing nor actually feeling it though!! It’s just the fact that my heart rate was 107 scares me):
My neurologist had warned me though and turned out she was right and I really don’t want to hear her nag during my appointment in October. Aside from that recovery has been going great. But I feel it stalled from the seizure…or maybe I’m just more precautious rather than proactive!!

Just keep doing what you’re doing and listen to your neurologist… believe me mine scolds me all the time! Hopefully this is just a fluke though the heart rate would worry me too but hopefully it’s a one-time thing.
My wife and I recently took a wedding trip on a cruise and our three-day cruise got diverted for 6 due to hurricane Dorian and I didn’t have enough meds for the extended trip so I had to do half doses for 6 days; so far no negative reactions but stories like yours keep me on my toes. Stay strong and best of luck Teiry!


Just be careful Mike!! But if not that’s a good way to weane off slowly!! Always let your neurologist know what you’re doing. See my neurologist was aware but she warned me that I have gotten lucky and haven’t had a seizure while on meds at any dose and well my luck ran out ): so now I’m experiencing the side effects of a bigger dose and they SUCK!

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I hate the meds and how my body reacts to them but the risk of a large seizure like you had is the reason I take them because the partial simple seizures are not fun; just give your body some time to adjust to the higher dose.

I hate the side effects they give me too /: but you’re right I’d rather experience those than a bad seizure any day!!

Moment of clarity my people!! It’s hilarious that it came from my pcp too like instead of my neuro team of drs lol!!! My son just started preschool and guess who had brought strept throat home and guess who got sick with it and tested positive AND was told that getting sick can trigger a seizure even on medication!! That’s right!! This lady!! Reason I hadn’t taken my medication wasn’t because I forgot and that wasn’t the trigger. My seizure happened at 2am. I take my medication at 6am. I was at the ER that day until 6pm which is why my medication was there!! Gosh I feel so darn stupid lol!! And then for a second I thought maybe I ran a fever but NOPE!! That’s the first thing they checked. But now I have more of a peace of mind about it and already endured the harsh side effects of upping my dose out of fear (back to the dose my neurologist wanted me on but I had refused because I get agitated easily and I don’t like the person I am on that dose… I go hulk mode and get very snappy really easily:/
Anyways that’s a quick update! ) fun fact: my seizure was a hidden blessing on its own!! As weird as it may sound I am now less spastic and have impressively healed and my walking is SO much better out of the blue post seizure!! Maybe it helped connect something up there! Hahaha who knows right?! I don’t for a second like seizures just happy something good came out of it. I am still having a hard time accepting how weird like works for me like since diagnosis I realized everything in my life has happened for a reason and now even this seizure!! Well now isn’t that some dark humor!! Hope everyone is doing well :slight_smile: sorry I have been MIA again my toddler started preschool so life has been hectic lol


Hi Terry, I hope everything has worked out for you and you are feeling much better… I can imagine how scary this was for you and hope it never happens again… God bless!

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So far so good!! :slight_smile:

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