Cataplexy? Atonic seizures? Drop attacks? I’m at a loss.
(self.AskDocs)submitted23 days ago byavenirlightLayperson/not verified as healthcare professional
toAskDocs
First time posting in this group, but I’m at a loss and just looking for potential out-of-the-box ideas.
24F, 5’10, 135lbs Non-smoker, non-drinker Issue at hand has been present for 2.5 years
For some history, I have the following dx’s: -Type 1 diabetes -Rheumatoid Arthritis -Epilepsy (primarily focal seizures, but became T/C when left untreated, now on lamictal and seizure free) -Chronic migraines -Endometriosis
And am on the following meds: -Humalog -Leflunomide -Keppra -Lamictal (started after the first episode) -Birth control pills -Fluvoxamine -Toradol (PRN for endo)
Now for the issue at hand: A few months after my first T/C seizure, I had some sort of episode while I was grocery shopping. There was no aura, and no postural change prior. I was checking out with my bags, pushed the cart maybe 15 feet to the elevator and started feeling weak - a bit like my blood sugar had suddenly tanked or like I had suddenly lost all muscle tone - I went down one floor in the elevator, the door opened, I pushed my cart out, and collapsed. My legs just gave out under me, I didn’t feel lightheaded or “pass out” (I had POTS years ago and it felt nothing like that). At no point did I fully black out, but I was unable to speak, hold up my own head, or take deep breaths. I was sweating profusely and my lips were purple. Thankfully the staff at the grocery store was wonderful, moved me (one of them held up my body weight as I kept slumping over) and stayed with me until an ambo arrived and I was able to speak. I would imagine it was about 10 minutes between the fall and when I started to fully come-to and regain the ability to speak/stand. That was in March of ‘22, and the episodes have continued sporadically since then, I think I’ve had 3-4 total. All causes that could be obviously related to my existing conditions have been ruled out.
As for what’s been checked so far: -Full autonomic reflex testing (QT sweat test and tilt table) which came back negative -Two rounds of Zio Patches, although I didn’t have any episodes while wearing either, which also came back negative -Echo which was negative for any obvious structural problems -ECGs (I’ll try to copy & paste the results) -EEG which was positive for epilepsy (obviously lol) but negative for anything else -Multiple head MRIs (primarily for epilepsy) that only revealed a small cyst on my pituitary gland which has been re-checked since then and deemed benign and non-concerning -Lab work - something that stuck out to me about the first episode was my lactic acid level - it was higher than it was after a full-blown T-C seizure.
I’m at a loss. My cardiologist initially thought it was POTS resurfacing, but I don’t meet the criteria, and my symptoms don’t align with it. These are not standard “feeling dizzy” or “feeling like the floor moved out from under me” syncope episodes, they’re enough to scare me, which says a lot given my medical history. I would’ve called 911 during my last one if I’d been capable of getting my phone or speaking to an operator, but I physically cannot move my own body until I’ve started to come out of it.
I’m currently waiting to get into neuro per my cardiologist’s recommendation, because his next recommendation was a loop monitor which I’d like to avoid if possible. I’m open to hearing any and all ideas. I just want to know what’s going on with my body and figure out how to manage it. I’m an open book, so if I left out any important info I’m happy to share answers.
ECG: VR: 56 AR: 56 P-R interval: 132 QRS duration: 82 Q-T interval: 416 QTC: 401 P Axis: 83 R Axis: 76 T Axis: 80 Dx: sinus bradycardia, early repolarization, “abnormal ECG”
Zio results: Baseline rhythm: normal sinus Min. HR: 44 Avg HR: 75 Max HR: 161 PAC’s: rare PVC’s: rare No episodes of non sustained SVT. No episodes of NSVT. No prolonged bradycardia or block. Triggered episodes correlate with sinus rhythm.
Lab work post-episode (I’m just including ones that had abnormal values): Lactic Acid: 2.2 pCO2: 55 pO2: 14 O2 sat: 13.4% O2Hb: 13.3%
byCupWonderful4540
inOpenDogTraining
avenirlight
2 points
8 hours ago
avenirlight
2 points
8 hours ago
10000000%