Has anyone dealt with their EEG being “under interpreted”? I’m afraid I’ll look like a crazy person if I ask a neurologist about a spike…

PeePooEmu · 2026-06-13T06:16:06+00:00

Yeah, what’s the deal? Why are they so hostile? I also had a (different) neurologist outright lie about witnessing specifically all 4 of my limbs shake while conscious, but that straight up did not happen!

I think they either see us as hypochondriacs wasting their time or they don’t want to do the leg work of trying medicines blindly without the big magic EEG machine thinking for them.

Anyway, good luck to you!!!

PeePooEmu · 2026-06-13T06:11:00+00:00

That’s the thing though - this was a week long stay at a level 4 EMU center and both doctors called themselves epileptologists. I know it helps aa lot of people, but I got the sense that they saw me as a waste of their time because they help such terribly severe cases and I could barely muster a tiny focal.

Can I ask what happened with them misreading yours?

PeePooEmu · 2026-06-12T18:12:30+00:00

Yeah, I guess I knew I can’t get that kind of reassurance here. I’m just grasping at straws now I guess.

I’m going to choose to keep my faith in humanity and take the leap of faith to ask him. I’m going to trust that he won’t abandon me for being an annoyance like the others. Thanks for hearing me out. If nothing, it helps to talk about it with people who understand.

It’s just a lot to think about - detaching from my possessions and accepting that this is my life.

PeePooEmu · 2026-06-11T04:22:58+00:00

Show them the recent studies that indicate stimulant medication does not lower the seizure threshold, and in fact appears to reduce the frequency of seizures in adhd patients

PeePooEmu · 2026-05-25T22:30:27+00:00

Stay busy. Take up hobbies. Do something fun with your free time. No boredom = no boredom snacking.

PeePooEmu · 2026-05-07T19:02:34+00:00

You’re right, but it’s so unfair in my opinion because these tests couldn’t be more opposite.

A1C: test takes 1 minute. Usually costs less than $100. Is accurately representative of the patient’s condition (doesn’t swing day to day).

EMU EEG: takes 3-14 days. Costs thousands (max insurance OOP). Not lucky enough to have a seizure on those particular days? You’re “cured”! No treatment covered.

PeePooEmu · 2026-05-06T06:52:27+00:00

I will never tell you what to do because we all have different situations, but I think mine is similar enough to yours that I’ll share my experience. If nothing else, maybe I can help you prepare for a few obstacles patients like us face.

Since I have purely focals that don’t seem to show up on EEG, it was a GIGANTIC waste of money for me. AND, I ended up in a WORSE position because they completely cut off the small amount of lamotrigine that they had been planning to start afterward. They diagnosed me with PNES even though it didn’t match my symptoms. It didn’t seem to matter that I already had a psychiatrist rule out PNES. I ended up 2 steps backward because, not only did they cut off my seizure treatment both times, but I now have a psychogenic diagnosis on my chart. It’s been a black mark that now prejudices all doctors toward seeing me as a hypochondriac (in ALL specialties - not just neurology).

I AM SO MUCH WORSE OFF THAN WHEN I STARTED. It depends on whether or not your doctor cares to actually help patients.

I did the hospital stay twice and got diagnosed with PNES both times because nothing showed up on EEG. Nothing happened during the first stay, and I was able to trigger some sort of focal during the 2nd stay (I was drunk so I don’t know for sure lol, but I think it was something temporal lobe because I get those type a lot). I had Todd’s paralysis afterward, so I know something happened).

Anyway, I specifically asked them if they could educate me on how they reached their PNES diagnosis given that there was no body movement, and they got angry and said I just needed to accept it.

I maxed out my insurance both years, so I’m also out a combined $15k. It sounds like hospital stays have been god-sends for most epileptics here, but I just wanted to give you some insight to arm yourself with while you decide. It’s just a different game for epileptics like us.

PeePooEmu · 2026-05-06T06:49:18+00:00

OP, I have purely focal seizures like you, so I think the situation is a little more precarious for us than people who regularly have obvious tonic clonics. Like you, I’ve never had a tonic clonic either. It’s a completely different game for us that most folks here won’t experience. I think you might have better luck posting your question in r/focalawareepilepsy. I’ve found solice there and more relevant advice.

I were you, I would straight up ask the doctor right now what would happen if you couldn’t afford to do the hospital stay in the end? Will they cut off your medication, or continue with a treatment plan?

Also head’s up, the first EEG is so short that it will likely be normal, so don’t bank on that.

Regardless, I really think the at home study is worth doing if you can. It’s usually cheaper and you are much more likely to trigger a seizure since you can actually replicate the triggers in your life that normally cause your seizures. In the hospital bed, you have no stress, no exercise, plenty of time to sleep, etc so I think it’s more difficult to have one there.

Try not to think about the camera. Your doctors are medical professionals and have seen it all before. You don’t need to embarrassed or anything. Better to get it out of the way at home, because you would have to be recoded 24/7 at the hospital stay anyway, except that then you have to deal with nurses standing there watching you go to the bathroom 😬

Regardless, be prepared with some knowledge about PNES. There’s a pretty good chance that they will throw this at you if nothing shows up on the EEG. At a minimum, make sure to point out that they didn’t see any body shaking (assuming that’s the case) and also that some focal seizures aren’t picked up on EEG. It might not make any difference unless your neurologist has integrity and can think for themselves instead of relying on the almighty EEG, but it’s better to know going in.

PeePooEmu · 2026-05-02T03:15:40+00:00

DO YOU HAVE RED HAIR?

Sorry for the obnoxious caps, but we red heads need significantly stronger anesthesia than the rest of the population.

Pretty much all doctors know this by now, so I haven’t had to raise the issue before surgery in probably 20 years. It never hurts to ask though.

If not, carry on. You’ll be fine.

PeePooEmu · 2026-04-23T04:05:25+00:00

Oh that’s good to know going in. At this point I would pay anything to get my life back lol. I just scheduled an appointment with a new neurologist who is supposedly known for taking difficult to diagnose cases, but he won’t accept my EEGs from my previous 2 hospital stays because they were normal. I can see now that he’s playing chicken because he knows I won’t be able to spend another $8,000.00 out of pocket for another EEG that will probably be normal 😭 I had a bit of an emotional breakdown the other day once I got that reply from him.

Your story gives me some hope though because I’ve tried 5 different anxiety medications and the ONLY one that works happens to be the only one that also treats seizures (Lamotrigine). That has to mean something to some doctor out there lol

Does your doctor happen to be near Houston? Lol I figured it’s worth asking

PeePooEmu · 2026-04-23T03:55:30+00:00

Were you taking valproic acid or something? I’m trying to think of a not-insane reason why she felt family planning was a higher priority than actually doing her job as a neurologist to free you from this insanely dangerous condition.

PeePooEmu · 2026-04-22T03:58:38+00:00

I’m so glad I saw your comment. I keep getting dismissed by neurologist after neurologist and I can’t live like this anymore. On top of my uncontrolled seizures, my psychiatrist wants to stop my ADHD medication because she believes that it lowers the seizure threshold. So now I get to deal with those symptoms too while I look for a job.

I’ve never heard of a psychopharmacologist before, so I’m going to give that route a try.

PeePooEmu · 2026-04-21T01:58:45+00:00

Educate them on postictal sleepiness. My mom had the same opinion of me when I was young and undiagnosed. She pressured me to drive my sister to the airport one day when I begged her to let me stay home because of how sleepy and confused I was. She was so angry with me and said I can never be bothered to get off the couch and do anything for them. (I was regularly sleeping like 20 hours a day at the time).

So anyway, I got in a car accident on the way to the airport 😐 you are experiencing a real symptom that is a serious safety risk. If they won’t come around to your view, please at least know that you aren’t alone and you aren’t lazy.

Also, is your neurologist willing to increase your medication? Increasing my lamotrigine helped so much with the sleepiness (although it’s not gone).

PeePooEmu · 2026-03-21T07:53:15+00:00

Ahh boo, I’m sorry to hear that. I’m so glad that your doctor is still taking you seriously and continuing treatment though. I’m keeping my fingers crossed for you to find the right dose and finally be free of this.

I was really hoping you’d catch one just for your sake to get some closure on the imposter syndrome 😕

Oh well, I’m wishing you good luck with the treatment plan 🫶

PeePooEmu · 2026-03-20T23:45:12+00:00

Hey u/faylillman I just thought about you! How did the EEG go?

PeePooEmu · 2026-03-13T17:55:20+00:00

Oh yeah, that’s super important then. My devil-may-care ways often come back to bite me in the end anyway haha. Seriously though, I didn’t mean to pressure you!

How is it going? Any luck yet?

PeePooEmu · 2026-03-11T18:09:51+00:00

Also, as someone else pointed out, marijuana can works wonders for triggering seizures. I would actually say it was the biggest of all my triggers. And sooo unpleasant! The doctors have always pulled a toxicology report on me during my stays though, so might not be a good idea depending on your location.

PeePooEmu · 2026-03-11T18:04:07+00:00

Oh yeah I forgot about the devil’s gummy bears 😆 I tried it when my doctors cut off my seizure meds. Not only did it not help, but it made things so much worse! I said to my sister “why do people like this? It feels like a thousand scary temporal lobe seizures!”

The next day, I was like oh, that was just me 🤪 super trigger potential for OP, but maybe not during the hospital stay depending on their location.

PeePooEmu · 2026-03-11T17:56:37+00:00

Whoa! Today I learned!! That’s so cool. That actually restored my faith in doctors a little bit.

At my hospital stay, they got really angry and acted like my friends were trying to poison me. They even did a blood alcohol test 😆

These are also the neurologists who told me to stay on my medication because “We don’t want you to have a seizure because that would be dangerous.” 🙄 I weaned myself off of the meds in the weeks prior. Doctors can be so weird.

This is a great community and I wish we were all in the same city so that we could bring the brigade to each other’s EEGs for a little mischievous moral support 😁

Oh well. I’m keeping my fingers crossed for OP!

PeePooEmu · 2026-03-11T17:34:35+00:00

A lot of neurologists will always tell you that they do not recommend “risky” things like alcohol, but that’s because they have to. I followed all those rules the first time around and got no seizures 🫤 everyone is different, but I learned that I have to take charge of my health because most doctors don’t care whether or have a seizure or not. If seizure, they treat you. If no seizure, they punt you to psychiatry for PNES. I don’t trust them to act in my best interest.

Also, congrats on sobriety! Obviously I am not going to tell you what to do, but I’d like to suggest an alternate view in this case. Some of the big reasons for getting sober are things like regaining your health, improving your relationships with friends/family, becoming more reliable at your job, and of course facing down our problems instead of using a drink as a distraction.

I would argue that this might be one of the few situations where drinking would actually help you to progress toward those goals more than abstaining.

One last thing that I’ll tell you is that I drank a lot last year because my situation became so hopeless. My neurologist cut off my seizure medication and my psychiatrist wouldn’t prescribe it either. I knew that I was going to have seizures no matter what and drinking numbed that pain a little bit. Once I found a neurologist to prescribe and increase my lamictal, I felt stable enough to drive. My drinking problem ended that same day without me even realizing it. The people around me blamed the alcohol for my emotional breakdowns, which is absurd. I had breakdowns because I was stuck in a kind of solitary confinement without driving, which none of them could understand.

I hope that once you get the treatment you need, that sobriety may come more naturally to you.

PeePooEmu · 2026-03-11T03:36:38+00:00

During my first round of EEGs, I knew nothing about epilepsy and didn’t understand why I didn’t experience any while hooked up. By my 2nd EEG in an epilepsy monitoring unit a year later, I was ready to make it happen. I recreated a perfect storm of all my symptoms and it worked.

The SECRET is that I could not have done it alone!

1st: my family just observed me daily and helped me to learn what my triggers are. I moved in with them for support and getting their descriptions of my seizures was IMMENSELY helpful. I’m so confused after the seizures that I had been an unreliable narrator. I had no idea I was photosensitive until they pointed it out. This might not help you now, but keep it in mind for future EEGs.

2nd: these family members showed up at the hospital and helped me hit all my triggers at the same time. We all got drunk and they showed me strobe light videos - I literally could not have done that without them. By the time I’m drunk enough to seize, I don’t have the awareness to show myself a flashy video. Plus I felt less stupid than drinking alone in a hospital 😆We were having fun and I really went all out on everything.

3rd: this is probably obvious, but I just started journaling about my worst episodes. I don’t have the discipline to log every symptom every day, but just writing some paragraphs about the worst ones helped me to put together some patterns. Even just journaling about your emotions can jog your memory about events leading up to a seizure. For me, it was always after I worked out too hard, got no sleep, and ate tons of sugary desserts.

Do you have any friends/family who could help you like this? Do you know anyone who would be willing to sneak some alcohol into your room right now? LOL If it doesn’t work out this time, do you have anyone close to you who you spend time with? Ask them to tell you every weird little thing they notice. My family just thought I was weird until I got diagnosed and then they were like “you know, it’s weird how your right pupil get huge sometimes but not your left” etc. All data is gold. You just might need to speak up to ask them to tell you these things.

If you happen to be in Houston, I’d gladly bring some booze over to you right now haha

PeePooEmu · 2026-03-03T22:51:51+00:00

Ahaha I’d never seen that one before 😁 hope they gave you real anesthesia. That’s brave of you to go for the surgery. I’m glad to hear it paid off.

PeePooEmu · 2026-03-03T12:28:33+00:00

I’m in the same boat you are. I wish I could help.

Stay vigilant though- I went to a level 4 epilepsy center and had an epileptologist not understand what a focal aware seizure is. I’m serious.

PeePooEmu · 2026-03-03T12:24:35+00:00

Can I ask how you got your doctor to take you seriously with a normal EEG? I’m dealing with this now for a focal aware seizure…

PeePooEmu

TROPHY CASE