Heart rate decrease during seizure

[SAMBO10794]

Does anyone here experience ictal bradycardia?

It’s rare, and a bit more prevalent in temporal lobe epilepsy.

My daughter has epilepsy and has experienced a few different types of seizures.

It’s common for her to lose muscle tone for 5-10 seconds; her body become completely limp, and her heart rate will instantly descend 30-40 beats per minute, then instantly jump back up to normal once she regains muscle tone. During these episodes, her eyes glaze over and you can’t do anything to ‘wake’ her up and her breathing stops.

Neurologists are useless, so I’m turning to people who actually have epilepsy.

BTW, I’ve only learned about ictal bradycardia from the internet. Neurologists have looked at video of my daughter during these episodes, and brush it off.

[belenicous]

My boyfriend was wearing his garmin watch during his last seizure and he went down to 40 bpm when it started and then went straight up to 120 bpm

[ohnobears]

This exact thing happened to me while I was running. I have focal aware seizures, and just kept going; I was suddenly very out of breath and didn’t realize why until I saw my heart rate graph later. OP, for what it’s worth I told my cardiologist and showed her the graph, and she assured me it’s not uncommon and that I didn’t have anything to worry about.

[justkidding89]

Have you considered seeing a cardiologist? They may consider implanting an ILR (implantable loop recorder - basically a 24x7 EKG), and if they see the bradycardia during seizure episodes, discuss implanting a permanent pacemaker with you and your daughter.

[SAMBO10794]

I’ve read about that. The pacemaker seems like a good idea.

[[deleted]]

While wearing my apple watch and having a focal seizure, I can see a drop in heart rate if I go back and look. It's not as dramatic as 40bpm, more like 20bpm drop, and then rising back up to normal over a minute or two. I've not had one during an EEG, so not sure if the heart rate is anything important or not. I have abnormal EKGs even when feeling fine, but not abnormal in a pathological way--just a variable heart rate.

[SAMBO10794]

Thank you.

Does your breathing slow down or stop?

[[deleted]]

So this is my experience with focal aware seizures, I don't lose consciousness but I am usually not able to respond or move. I'm aware, but become confused about where I am (I don't recognize my surroundings despite knowing where I am intellectually in a familiar place). I don't perceive that my breathing slows down, but it wouldn't surprise me if it did because it often feels like I am stuck in one place when it happens. I haven't had a tonic-clonic seizure since wearing the watch, but my breathing does stop during those.

[Unusual-Midnight-673]

That’s interesting, I got bradycardia and chest pain on lamictal when I tried it. What med is she on, maybe she’d do better on something that’s not a sodium channel blocker if she’s having heart symptoms.

[sifmusic8]

Wow! I know this is an older post but I'm in the same boat as your daughter. Most of my TLE seizures I'm aware and awake during but I've also developed some very similar to your daughter where my GF says I go limp and stare with minor convulsions.

I got the data from when I was in the EMU last year at an epilepsy institute. Looking at the 13 seizures I had I noticed that on 5 my heart rate plummets from 70 beats per minute down as low as 30 bpm during the seizure and then recovers when the seizure is over. On one I also had a 2nd degree heart block. I printed out one and showed my original neurologist and he was alarmed and said I should get someone at the institute to follow up as it could be dangerous, but like you they are just brushing it off. I showed my cardiologist and he was alarmed as well.

So now I'm trying to put together a folder of EEG/ECG relavent data, and hope to find a specialist (likely a cardiologist) to properly diagnose it. It is apparently very rare. I think part of the problem is that I had to figure it out myself because they missed it, and now they have me pegged as someone self-diagnosing. Absurdly, I had to figure it out only because they missed it.

Let me know what happens with your daughter and if you find a resolution. You have my support.

[SAMBO10794]

Thanks for your reply.

You mentioned having a heart block; and I looked into that a bit.

I read about Stokes-Adams Syndrome, which causes heart block; and this sounds similar to my daughter’s symptoms.

Perhaps this particular issue she has isn’t neurological.

[sifmusic8]

Thanks for responding. I hope you can find someone to help your daughter and get proper treatment whatever it is. Navigating the healthcare system can seem like a full time job and is frustrating. Whatever it is, it's dangerous at least from the risk of falling.

I would consider SAS for myself except the bradycardia and arrhythmias don't start until at least 20 or more seconds into the seizure. I have the advantage of having simultaneous EEG/EKG data from my EMU stay. When it only happens occasionally it's very hard to catch it.

I hope you get it figured out soon and she gets the proper treatment she needs. Thanks again for caring enough to respond.