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Had my first Grand Mal Seizure. Whoa… didn’t see that one coming!

Earlier this week I was playing a board game with my husband, and suddenly there were paramedics helping me into an ambulance.

I’ve had a lot of fainting and partial seizures because of my POTS syndrome (also called “the fainting disease)” that I developed as a complication from Neuro Lyme. But those are really fast, like 5 seconds, and are pretty comical when they happen, and I always feel them coming. I’ve never had an actual, full-blown, just-like-the-movies Tonic-Clonic (Grand Mal) seizure before, with absolutely no warning, and it was such a bizarre experience!

I don’t remember any of the seizure, not until the paramedics arrived. I remember being surprised that there were people who came to help me play the board game. 🙂 And I remember them asking me questions that I was surprised I didn’t know the answers to, like: “What is your age?” and “What year is it?” I tried thinking about the answers but my mind just wouldn’t lock onto anything. The numbers were just rushing around in my head.

I was in and out for most of the ride to the ER, and was kept there for about 4 hours before being released. They did an EKG and a CT scan that both came back normal, but my heart rate was at 145bpm for most of the time (a normal heart rate is around 100, although because of POTS my normal rate is around 120) so they hooked me up to a Saline Drip IV until it went down. My Lyme doc was surprised they didn’t do an EEG, not sure why they didn’t.

The weird thing was being in the hospital during Corona! They wouldn’t let my husband come with me because they only bring the patient into the ER now, which made things very clean, and quiet. They all had face masks, and they had me wear one too. It might have been scary to be there, but thanks to Lyme I’m used to all these emergencies, procedures, doctors, and weird symptoms – I’m not used to riding in an ambulance but there’s a first time for everything I guess! And I was texting with my husband the entire time so I didn’t feel alone.

It wasn’t until I was home from the ER, and talked to my husband about it, that I found out what he had experienced when I had the seizure, and I couldn’t believe how severe it was. He said we were playing the board game, and I had suddenly stopped talking in mid-sentence. At first he thought I was playing a joke on him (which I frequently do), but then I started seizing, drooling, I urinated myself, and it looked like I was choking on my tongue, dying slowly in front of him, for 15 minutes, until the paramedics came. Turns out this is normal during that kind of seizure, and LOOKED WAY SCARIER than it was. Which is why even though I had the seizure, I think my husband had the most traumatic part of it because he had to watch it happen and go through that alone, with no experience of seeing one before. But he did an amazing job, called 911 right away and they talked him through it.

The Phases of a Tonic Clonic Seizure is a funny graphic explaining the seizure with pictures of homer simpson in different positions.

I called my Lyme Doctor from the ER and told her what happened. She’s contacting an Epileptologist (yep! That’s a thing! Didn’t know till now) and we’ll see what they recommend for next steps. So hopefully I’ll get more insight on all of this soon.

Here’s where I’m at now:

The next two days after the seizure my legs were so sore, like I ran a few miles, but apparently that’s common from this type of seizure.

It’s been 4 days since the seizure and I still don’t feel right mentally. I’ve been so fuzzy, and regular thinking (like when to take my vitamins) is still difficult to do. But I can write this, and talk on the phone, so it’s not too bad. Mostly I feel really high, and catch myself spacing out a lot.

I’m trying not to go too deep down the rabbit hole of what a seizure can mean (is it Epilepsy, will this be a new thing in my life, is it safe to leave the house alone, etc.), but the fact that I had absolutely no warning that a seizure was coming makes me so scared that one could happen again, at any time. I can’t tell if I’m feeling fuzzy because of the aftermath of the seizure, or if it’s a warning that a new one is coming. I took my dog potty alone and I felt like I was tempting fate. A normal little walk around the block felt really risky.

But for now, just like with so many weird symptoms I’ve had with Lyme, I’m just adding it to the list, and trying to take it seriously without panicking, because it could have been from so many things, including marijuana withdrawal. I didn’t know that marijuana withdrawal was a thing, I had just decided to give my body and brain a break from pot for the last 3 weeks, so I went from smoking at least once a day, to completely stopping. So maybe that’s why, or it’s from Neuro Lyme, or it’s from POTS (postural orthostatic tachycardia syndrome), or it’s from hormones, or it’s from a bunch of other things, or just a perfect storm in my system. Either way I’ve basically been put back on pot, because it’s also apparently a great anti-seizure agent. Pot, I’m so sorry I doubted you. Let’s never fight again.

With severe Lyme you get used to adding more and more people to your medical team, as symptoms, syndromes and complications start compounding. I didn’t think I’d be adding an Epileptologist to the team, and hoping I won’t have to. I don’t have a choice in what new issues pop up and when, but I do have some control over how I react to it, so I’m trying to stay calm, stay positive, and stay silly – hoping this gets resolved soon.

Hopefully you’ll never experience someone having a seizure in front of you, but just in case:

First Aid for Seizures illustrated instructions

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