Dealing with a wave of symptoms: dizziness, tingling, speech issues, and headaches...

That’s what they told me right from the start, saying it was

Donna Fowler2 said:they told me right from the start that it was

Wait, a migraine?

Does your head actually throb while this stuff is happening (I mean during the episodes, not after)? If not, I don't buy the migraine theory.

You can’t—and you absolutely shouldn't—base a diagnosis on nothing but guesswork, especially when dealing with neurological symptoms that aren't just minor glitches, but massive red flags. It doesn't matter what any of us personally thinks or feels about whether it's "real" or not. What matters is that urgent testing is required, and that's exactly where the first doctor failed. Instead of taking action, she just dumped a mountain of referrals on them and sent them packing. At this point, the parents are just as much to blame for their own negligence as she is for her lack of professionalism and sheer hesitation.
An EEG is going to provide answers to some critical questions and will finally determine if there's a need for more extensive testing or not.

Donna Fowler2, hope everything's going alright with you

I’m dealing with some absolutely brutal migraines following my seizure, and I'm just stuck in limbo. They’ve been trying to interpret my EEG results for over a week now—it's driving me crazy. -.- Every single time I call, they just tell me to check back in tomorrow.

Well, they finally arrived... nothing too crazy or out of the ordinary, the EEG looks perfectly fine

Donna Fowler2 said:They’re finally back... nothing majorly off from the norm. The EEG looks fine.

Hey. I was reading through your post—I dealt with the exact same issues myself. How did things turn out for you in the end? 😲

Donna Fowler2 said:They're back... nothing majorly weird, everything looks pretty standard. The EEG is fine.

So what's the move now? Are they sending you in for more tests?

I’m dealing with the exact same thing. My EEG results come back normal, yet I get these similar symptoms—maybe triggered by weather changes?—though without the headaches. Wouldn't it make more sense to run an EEG right when those episodes actually occur? Have you ever sustained any kind of impact to your head, nose, or neck?

Nothing much to report yet... just waiting on my TCD results
But I think I figured something out, and even my doctor looked a bit puzzled
The nerves in my legs just aren't firing right
And that numbness in my thumb? I can't feel that nerve at all anymore. Before, if I ran my finger over it, the sensation was incredibly intense, but now, there's just nothing

So, I’m 22 now... and about two years ago, I had something happen that felt a lot like a seizure. Honestly, I’m still not even sure if it’s epilepsy or what. Anyway—basically, I was feeling pretty off all afternoon, just generally unwell, and then in the evening I headed over to a local CVS to pick up some photos. That's when it happened. I walked up to the counter to ask if my prints were ready, and from that exact moment, everything just... blanked out. I don't remember the next minute or two. At least, that's what the girl working there told me! She said it lasted about that long, and she tried to talk to me—asking follow-up questions and stuff—but I didn't react at all, and I have zero memory of it. According to her, I was just standing there with this totally vacant stare. Once it passed, I actually repeated the exact same question about the photos—to which she had already answered during those two minutes—even though I was *so* sure I hadn't asked it yet... weird, right? After that, I just went home. I felt really strange afterward, too—just this overwhelming, general weakness... I don't even know how to put it into words. Since then, it's happened a few more times, but I've noticed it always seems to happen when it's super hot out, like in the middle of summer... (even though I try my hardest to stay out of the sun!). Just as a bit of background, I was born very premature—only 3.7 lbs, 16 inches, and spent a month and a half in the NICU. I was on oxygen for 15 days and was also given Phenobarbital, though I'm not entirely sure why. My discharge papers mentioned tremors, apnea attacks, and CNS irritation. When I was 2.5 years old, I had febrile seizures that were actually classified as status epilepticus because they lasted about 45 minutes.
...which meant I was hospitalized in pediatric neurology for two weeks. They started me on Phenobarbital therapy back then, and I actually had another seizure about two months after the first one. After that, they switched my meds to Apilepsin, which I took until I was 7, and then I just... stopped going for follow-ups.
Well, I finally went to see a neurologist, and my EEG showed some dysrhythmic changes... but he didn't really say much. He was kind of a jerk, honestly. He just wrote down that I need an MRI and some blood work. Meanwhile, my primary care doctor thinks it might be complex partial epilepsy, and she’s recommending a full neurological workup—like a sleep-deprivation EEG and a polysomnography. So, does anyone here have similar symptoms? Or maybe someone who has been diagnosed with this type of epilepsy? Please, guys, I could really use some advice!

Drew Edwards36 said:I’m 22 years old, and about two years ago, I had something that felt like a seizure... though I honestly don't know if it was epilepsy yet. Basically, I was feeling pretty off all afternoon, and later that evening, I went down to a local CVS to pick up some photos. That's when it happened. I walked up to the counter to ask if my prints were ready, and from that exact moment, everything just goes blank for maybe a minute or two. At least, that's what the girl working there told me. She said she tried to answer me and asked follow-up questions, but I didn't react at all—I don't even remember it. According to her, I just stood there with this completely vacant stare. Once the fog cleared, I repeated the exact same question about the photos, even though she had already answered me during those two minutes I was "out." I was positive I hadn't asked yet! Anyway, I just went home. I felt incredibly strange afterward—just this overwhelming, general weakness. I can't even put it into words. Since then, it's happened a few more times, and I've noticed a pattern: it always seems to happen during intense heat waves in the summer, even though I try my best to stay out of the sun. For context, I was a micro-preemie—born at only 3.7 lbs, 16 inches long, and spent my first month and a half in the NICU. I was on oxygen for 15 days and was given Phenobarbital for reasons I don't fully recall, but my discharge papers mentioned tremors, apnea attacks, and central nervous system irritation. When I was about 2.5 years old, I had febrile seizures that were classified as status epilepticus because they lasted nearly 45 minutes.
..which meant a two-week stay in pediatric neurology. They started me on Phenobarbital, but I had another seizure two months later, so they switched my meds to Apilepsin. I stayed on that until I was seven, and after that, I stopped going for follow-ups.
Now, I finally went back to a neurologist, and my EEG showed dysrhythmic changes... but he barely said anything. He was kind of an arrogant jerk. He just noted that I should get an MRI and some blood work done. Meanwhile, my primary care doctor thinks this might be complex partial epilepsy and insists I need a full neurological workup—an EEG after sleep deprivation, a polysomnography, the whole nine yards. Has anyone else dealt with similar symptoms? Or does anyone here have this specific type of epilepsy? Please, I need some advice.

I am 100% with the primary care doctor on this one.

vividsailor7 said:I’m definitely on the same page as that GP.

So, could someone maybe give me a quick rundown on what a polysomnography actually is..? And—if it turns out this specific type of epilepsy is what we're looking at—is it totally possible to keep everything under control (like, zero seizures) just by using the right medication?
Thanks!

Donna Fowler2 said:nothing happened yet... just waiting on my TCD results
but I definitely noticed something, and even the doctor thought it was weird
my nerves in my legs aren't really working right
and that numbness in my thumb? I can't even feel that nerve anymore, even though before it was super obvious whenever I ran my finger over it

If you can, try going to Mayo Clinic or Johns Hopkins—their neurology departments are top-tier, everyone there is an amazing doctor. Or maybe try Mount Sinai and see Dr. Basic-Kes. Honestly, I was actually hospitalized at one of those spots a few months ago because they suspected I had MS. Thank God everything turned out fine on that front, but please, take getting your health issues sorted out seriously.🙂

🙂

electrichound78 said:If you can manage to get an appointment at Mayo Clinic, specifically within their neurology department, I’d highly recommend it—the doctors there are absolutely top-tier. Another great option would be heading over to Johns Hopkins; I know a specialist there, Dr. Basic-Kes, who does incredible work. To be honest, I was actually in a similar boat just a few months ago. I spent some time being tested because they suspected I might have MS. Thank God, everything turned out fine on my end, but it was still a huge scare. Please, I’m telling you this as someone who’s been there: please take these health concerns seriously and really dive into getting answers.🙂

It’s been a while since I’ve checked in here. Honestly, things have been pretty quiet on my end lately—I haven't had any major seizures in quite some time. I still get those moments where I start babbling when I'm exhausted right before bed, you know? It makes it such a struggle to just speak normally, but at least the intense dizziness isn't there anymore, and I haven't dealt with that numbness on my right side. 🙂
I'm just sitting here waiting on my CT scan results... we'll see if my nerves hold up under the pressure. 🙂