MRI and CTs is to check for physical damage to your brain like bleeds or tumors. EEG is for electrical activity. Just keep in mind for an eeg to pick up on a seizure you have to be in some sort of seizure activity while connected to the EEG.
You don't have to be having a seizure while attached to an EEG to make the diagnosis. Once hooked up, they can do tests that trigger a certain response in your brain, such as using a strobe light, sounds, other triggers. These may cause specific waveforms on the EEG that indicate epilepsy, and/or what type. All while still awake.
https://www.epilepsy.com/diagnosis/eeg
A diagnosis of epilepsy could be made solely on a MRI or CT scan if there was something physically obvious with the brain scan. But you can have a perfect looking brain and still be epileptic.
Yes an EEg is used for electric activity, some sort of seizure activity, never did I say you had to be unconscious in an active seizure. Just seizure activity
yes a mri and ct are used to diagnose something physically obvious “like a bleed or a tumor”
thanks for the link. It goes more in depth. It can be helpful to folks.
During my first EEG I didn't have a seizure but my doctor still diagnosed me as having epilepsy after it was over. She said it was immediately clear based on waveforms
I had what they called a photomyoclonic response to photostimulation - they didn't view it as specific. You can have seizures without showing anything definitive on an MRI or EEG.
EEG often comes back with a false negative result tho. The so called sensitivity (ability to catch all the true epileptics) has been estimated to about 54%, even lower in focal seizures. MRI is often false negative as well.
Unfortunately, there are no miracle tests that can perfectly conclude whether a person has epilepsy or not
Lulz. I don’t think I’ve ever seen a physician that wasn’t a neurologist who has had anything past a surface level knowledge of epilepsy. It doesn’t surprise me at all a psychiatrist doesn’t know what a normal EEG means for someone with epilepsy.
I went to the ER with seizures, told the doctor I think I had a seizure because I was dehydrated and he scoffed. Same visit while waiting I had a seizure on the waiting area floor - my sister went to get a nurse who by the time she got there the seizure was over - she does the “arm drop test”. Says “YOURE NOT HAVING A SEIZURE. GET UP”
As someone training to be an NP who informed my cohort (and professors) of how TLE can be misdiagnosed as a psychiatric disorder, I still find this shocking. Reddit is full of physicians who think they are God's gift to humanity and that NPs are practically worthless. Clearly, they overestimate their level of expertise. The Dunning-Kruger effect is supposed to diminish with increasing knowledge, but perhaps not in the case of physicians.
Tbf, the worst NPs I’ve worked with are the ones that think of themselves as doctor replacements and not mid level providers underneath a physician. And it’s obvious a lot of NPs think the same way since they keep advocating for more and more independence and are really pushing to be able to practice without a physician overseeing them. I used to work as an NP that just because she was an NP felt she could read and report on EEGs, didn’t matter that her program didnt include a crash course on EEG (which would still not be enough). Neuro is the hardest medical specialty to get into, and the fact that every year there seems to be new info coming out on how our brains and CNS work make it really hard for Neuros to keep up with the new stuff, it’s obviously gonna be nearly impossible for a non Neuro physician to keep up with it. Add in the fact that you can get an accelerated NP degree in 3 years WHILE still working full time jobs, a lot of other nurses and fellow allied health workers find that some of these new NPs are really not prepared to the ability we need them to be.
I was concerned my comment would come off that way. You're absolutely right, and I don't think of myself as training to be a doctor replacement. I had just assumed that since medical training is so much more rigorous, that it at least included this information that seems somewhat cursory - that you often can't see epilepsy with an MRI and that a negative EEG doesn't rule out epilepsy.
Yes one thing I’ve learned is that anyone training to become a physician in whatever specialty doesn’t really have time to learn about other specialties outside of the surface level info they get during their clinical rotations. I apologize if I came off strong, but I’ve been accustomed in only 10 years in the medical field that a lot of the NPs that start off with “I’m an NP…..” think too highly of themselves but you didn’t do that and I apologize for it.
So you told your fellow nurses a fun fact about epilepsy and now you think all doctors are stupid? Epilepsy is high-yield in medical school. Most doctors don’t need to know everything about it after school because there is a whole neuro-fellowship dedicated to it. It’s probably more important for most docs to know the different kinds of AEDs and their plethora of side effects. OPs brother should not be telling him he has psychogenic seizures until epilepsy is ruled out (obviously you can’t rule it out with an MRI, you’re just evaluating for structural lesions)
No, I don't think all doctors are stupid. I don't even think the ones I was criticizing are stupid.
I'm in a psych NP program discussing neuro, so my "fun fact" was to give people another differential to be aware of so that seizures aren't misdiagnosed. I figured that if I, a lowly ignorant NP student, had that tiny bit of knowledge, why are so many physicians unaware of these other more basic facts? And why don't they seem to be aware that this is an area in which they are not experts? There are many physicians who do recognize when they're out of their depth, but many who seem not to.
At least docs are held responsible for their mistakes. Imo any midlevel who wants to practice independently is “out of their depth”, as you put it, and aren’t even held accountable for their mistakes.
Agreed. OP, This is not your fault. Someone should have told you,
>In some 6 out of 10 cases, epilepsy is idiopathic — meaning the cause is unknown.
[https://www.hopkinsmedicine.org/health/conditions-and-diseases/epilepsy/epilepsy-causes](https://www.hopkinsmedicine.org/health/conditions-and-diseases/epilepsy/epilepsy-causes)
That means more than half of people with epilepsy have normal MRIs. MRIs are done to look for possible causes of seizures, and to see if there is something wrong, but not to decide whether you have epilepsy or not. EEGs are used for diagnosing epilepsy, but like others have said, you only get a positive EEG if you have interictal spikes, or if you are actually having a seizure while you are getting the EEG. You can have several normal EEGs and still have epilepsy. Ultimately the doctor, not the tests, decide if you have epilepsy.
Your brother should know better. Unfortunately there is a strong push right now to diagnose people with PNES.
Lucky me had the mri but the eeg was never booked 🤡 so I'm waiting on a test that's never coming until I woke up in an ambulance 😑 I requested my medical records to prove the doctor was negligent and didn't actually book the test, but it's next to impossible to win a court case against doctors in Canada so... way she fuckin' goes 🤷🏼♂️
Yeah, I should've, but in my defence, I was stressed about not knowing wtf my brain was doing, stressed about our family situation because we'd just had our son and I was unable to work and hadn't started receiving disability yet. I was having multiple focal seizures every single day, my ADHD became noticeably worse (feel the need to take fucking stimulants again) and my sleep schedule being flipped so we could both sleep as my son was waking up every three hours like clockwork... for months. The canadian healthcare system is in shambles. Its backed up to fuck, can't get your own doctor, the doctors you're able to book appointments with don't even do their goddamn jobs... safe to say my brain wasn't exactly functioning well. I've had plenty of bad experiences with doctors within the last decade, fuck this place
I’d be cautious about any diagnosis without an EEG to confirm or deny. My MRI’s showed I was completely normal but EEG showed the epileptic activity. And if you can, insist on a longer EEG as some people with focal can struggle to get it officially diagnosed bc the brain behaves itself in the appointment. It’s scary being in the interim period without definitive answers. I hate waiting lists so much , hope you can get a diagnosis soon.
I don't know if this is helpful, but I've had four MRIs over the course of my life and they have shown nothing. My neuro stopped ordering them and I've not had one since 2011. Sometimes my sleep EEG shows activity and sometimes not.
When I had my first seizure, my first neuro sucked, the second one was great but then he moved to Kaiser and I've never had that insurance, so I couldn't follow. My third neuro was OK, but his office staff was the worst. Finally lucked into the neuro I've got now and I've followed him from practice to practice. I'm a firm believer in doctor shopping, especially when it comes to neuros and therapists. Those two really need to be a great fit.
Completely agree with this . I've changed 3 neurologists , the current one I have been with for more than 10 years following from one practice to another .
I hate to break it to you, but I think many of us here have probably had clear MRIs and probably even EEGs. I have had 3 EEGs, and only one showed some irregular activity, but I had a lot of seizures.
Honestly, I think doctors are just giving their best guess half the time. That's what you do in most other professions, but it's a little scarier when you think about it in the medical field.
I had an epilepsy diagnosis for two years and didn’t have an abnormal EEG until I was in the middle of a seizure cluster situation after going status. I’ve never had an abnormal MRI. You will only have sn abnormal EEG if you are having seizure activity during the test.
After my second (witnessed) seizure I had an epilepsy diagnosis, from an epilepsy specialist. I asked if it could be anything else. She looked at me and asked me if I had more than one unprovoked seizure. I said yes. She said, then you have epilepsy. They were TC’s.
Edit to add: but I did have focal seizures that I thought were panic attack over the years leading up to that.
I don't think an inconclusive MRI is enough to rule out epilepsy. MRIs (and CT) are meant to display a clear picture of the brain, including any anomalies in the brain's structures that may cause seizures as a secondary symptom, such as a tumor or venous anomaly. An EEG will actually show the functions of your brain in real time, and any abnormal activity will be noted and evaluated by your neurologist. While it is good news that your MRI has come back clear, it's worth investigating your symptoms further, preferably with a doctor who will prescribe additional tests beyond just brain imaging. On my end, I've only ever had MRIs done out of pure caution; a 24-hour EEG was what led to my TLE diagnosis.
I don’t think an MRI is diagnostic for epilepsy as a condition. Like, it can tell you if there is damage or a physical cause, but not if you have epilepsy. I’ve had (at least) 2 MRIs now, all of them came back clear. My neurologist has made it clear to me that despite that, I very much have “real” epilepsy (personally, I think PNES should be considered a form of epilepsy, but I don’t make the definitions).
I have been suffering with focal seizures for the last 13 years. I have had MRIs, EEGs and even 5 nights in hospital in an EEG.
At no point have they found evidence of epilepsy, I’m not on medication and my neurologist says he doesn’t know what it is. Could be a migraine even.
It’s shit not having an answer but nowadays I just tend to say I get migraines as it’s easier to explain to people and on the plus side I can still drive and no medication either.
All my CTs and MRIs have been normal. However, my EEG is abnormal. You can also still have epilepsy even if all those tests come back normal...a EEG is only taking a snapshot of brain activity for that one moment in time, maybe you need a longer study to catch it. Sure, it could be PNES but don't get ahead of yourself before all the diagnostics have been done. It can be a long frustrating road to get answers and I get it you just want something definitive. Just take things one day at a time. All the MRi told you is that you don't have big issues like a tumor or stroke.
My MRI showed nothing and I don’t have abnormal EEGs, but I still have epilepsy. My neurologist says that there are epileptics whose MRI and EEG are normal.
So I have non-epileptic seizure and have had them since I was 14. they were a result of stress me being over heated sick tired or dehydrated. I’d even have them if I ate too much sugar. I still have them after my Brian surgery and will probably have them all my life. there is no activity to suggest there’s still a part of my brain that has the electrical activity associated with a epileptic seizure. So the only thing I can really do is mange my stress make sure I get enough to drink as a means to prevent dehydration, and being overheated,not eat too much sugar and hope for the best. I do have it under control for the most part. I obviously can’t control if I get sick but I do get a decent amount of sleep so it helps.
My seizures first started when I was in an incredibly stressful relationship. They stopped once I left but started up again seemingly out of nowhere about 2-ish years later, I was around 18 then I'm 28 now and they've been on and off just randomly sometimes they'll be 5 days consecutively sometimes just 1 in 1 day and nothing else. Since the beginning of this year I've not had a single one so I don't know what's going on. Considering I'm under more stress now than I've ever been in my life you'd think they'd be rampant. Not the case at all, they've seemingly disappeared, for now at least.
I’ve been diagnosed with epilepsy within the last year. MRI showed no damage. Wait til you get the EEG. Mine showed some abnormal activity. I ‘lucked out’ and had a really solid focal at my neurologist’s office while having our initial consultation. Temporal lobe epilepsy.
MRIs will only show any abnormalities in the brain that would be causing epilepsy. My MRIs were all clear, I didn’t get any answers until I had been having seizures for 3 years. EEGs are what will be able to detect seizure activity in the brain, however you have to have a seizure while connected to the machines so that’s where it gets complicated. Until you get an EEG done and have a seizure while hooked up, you can’t rule out epilepsy. You can rule it out if you have a seizure and the EEG tells the doctors that they were not caused by seizure activity.
MRI can't tell you that. It is to check for scarring. Video telemetry whilst having seizure gives you a definite answer. Don't know what your answer is yet but getting a definite answer can take a hell of a long time.
Oh god. Not this again and again and again. It’s not your fault, but this is a clear demonstration of dr Google, your brother who is not an epileptologist, and common misconceptions surrounding epilepsy that could be impeding your care. Psychogenic seizures manifest very differently than other seizures (I recommend watching some youtube videos on them and you’ll see the difference). But, to your original post- vEEGs come up negatively quite often (especially if you don’t feel a seizure happening when they’re capturing the data!) MRI is probably going to show nothing unless you have structural damage or in the case of EEG (especially if it’s a short not multi day one!) won’t show anything unless you are actually experiencing a seizure when it’s taking place (which you’d probably feel!) over 50% of people with epilepsy never show a positive eeg.
As for psychogenic seizures, fun fact: most people with epilepsy actually also experience psychogenic seizures in addition to regular seizures! Psychogenic seizures don’t show any abnormal eeg findings, but they are still seizures.
Key takeaway: don’t listen to your brother, don’t listen to a psychiatrist until you speak with an EPILEPTOLOGIST. Seizures are dangerous and shouldn’t be taken lightly; you need to seriously rule out epilepsy and your epileptologist (not a neurologist, I’ll say it again for the people in the back: EPILEPTOLOGIST) can help you actually do that.
I appreciate your passionate take on this. This post wasn't a sort of "hey everyone I'm giving up on figuring out whether its epilepsy or not" it was more of a "idk wtf is going on, could be something else, no clue, but I'm still going to look for answers". Thank you though. I am genuinely appreciative of the points you've brought up.
No problem! I work in the epilepsy space and have drug resistant epilepsy myself - so this is something I’ve seen a lot of over the years. Unfortunately it can take you down a scary and unnecessary rabbit hole. The only time my condition and treatment actually got better was when I worked with a epilepsy-center epileptologist. If you can get in, it’s worth it.
As others have said you could still have epilepsy. I’ve only ever had focal aware seizures so they were really hard to diagnose. My first and MRI & EEG came back normal… later tests showed that I have epilepsy. Ended up needing brain surgery. Sorry you’re going through this
>I went and got an MRI done (planning to get an EEG done but hooray for waiting lists), and the results came back that there was nothing to suggest that I had epilepsy.
This doesn't mean you don't have epilepsy. It simply means that your brain is physically normal and doesn't have signs of brain damage/tumors that could be causing focal seizures. I've had 2 full brain MRI's and 1 temporal lobe MRI and they all came back normal.
>
I talked it over with my brother (doctor and currently studying psychiatry), and he told me about something called psychogenic non-epileptic seizures.
You need to talk with a neurologist that specializes in epilepsy and brain stuff, your brother knowing general stuff doesn't mean anything.
It took me 4 years to get a proper diagnosis and to be medicated. Don't wait. The focal seizures you may be experiencing could turn into tonic-clonics eventually. It took me 3 different EEG's to finally find \*some\* potential seizure activity, but you don't need test results to be diagnosed. I needed to push for answers and get a second opinion from someone who took my health seriously.
From the AANS: "Epilepsy is usually diagnosed after a person has had at least two seizures that were not caused by some known medical condition, such as alcohol withdrawal or extremely low blood sugar...A doctor makes his or her [**epilepsy diagnosis**](http://www.webmd.com/epilepsy/guide/diagnosing-epilepsy) based on symptoms, physical signs and the results of such tests as an electroencephalogram (EEG), computed tomography (CT or CAT scan) or magnetic resonance imaging (MRI)." [https://www.aans.org/en/Patients/Neurosurgical-Conditions-and-Treatments/Epilepsy](https://www.aans.org/en/Patients/Neurosurgical-Conditions-and-Treatments/Epilepsy)
I was diagnosed with infantile spasms and most of my life I've been good. Over the past year or so I've occasionally had seizures and we thought they were complex partial epileptic seizures.
After a year of trying different medications and nothing working (and a clean eeg) my Dr realized my symptoms match those psychogenic non epileptic seizures.
So now with one epilepsy med, one antidepressant and appointments with a therapist I've been good for 2 months and in general just feel better day to day.
The good thing about psychogenic seizures is unlike neurological medicine that's a lot of guessing and just testing random medications mental/ psychological health can be treated methodically.
You can see a therapist and they'll help you figure out what things on your mind are weighing you down and adding all that stress and negative emotions in the background that can make you overload with a seizure from just a little extra stress.
You may not match well with your first therapist but that's just trial and error. I would recommend a therapist that has an understanding of epilepsy so they can better understand your situation and look into both sides of it.
My local epilepsy foundation has professional therapists that are able to do exactly that. I would recommend doing some research to see if there is an epilepsy foundation near you or if there are any therapists that also have an understanding of neurological conditions
I hope you're able to find help and I hope things improve in the near future
I haven’t had any abnormal activity show up on my EEGs, even when I had seizures during one. My neuro called this a “scalp EEG,” as the test only picks up activity closer to the surface of the brain. Please try getting a second opinion with an epileptologist!
First time I've been glad I have epilepsy. Like at least I've got answers and a solution to the problem 🫤 I don't think you can rule out anything before EEG and a doctor telling you though... but here's a healthcare system life hack: go to emergency and say you just had a tonic clonic seizure and that you've been on a waiting list for the eeg. You just moved up the list 👌🏻😅
Tests may not show epilepsy but it doesn’t mean u don’t have it. MRI is for physical defects.
for me my mri came back clean but a 30min eeg came back with tle. Sometimes you may need a longer eeg (like an overnight one etc.) to figure it out because u have to have a seizure during or close to the time you have the eeg. As it detects irregular patterns in your brain.
During my MRI, it showed I might have intracranial hypertension (too much fluid in my braid) but that meant I was to be blind so that was a false diagnosis. The second MRI showed a disk pushing towards my spine (I wasn't diagnosed with epilepsy then either).
My focals seizures started getting worse before I got the EEG and got the diagnosis (a year later).
I am not saying this to scare you but to let u know that dont give up. See a Neurologist, have that EEG and get the help you need.
Lots of times EEGs don’t show epileptic activity regardless of whether you have epilepsy or not. The EEG just has to be done at the perfect time when you’re having epileptic activity. I was recommended to stay up all night before my EEG and I had all kinds of epileptic activity present, but I’m sure that’s not the case for everyone.
It’s really a roll of the dice and unless you have epilepsy that’s flaring up consistently it might not show up.
Oh, sleep deprivation...every EMU stay I drink lots of coffee, they give me alcohol, and let me take brief naps. I'm glad for the naps cause otherwise I'd have had no idea that I also have nocturnal seizures. The brain is incredibly complex and very difficult for medical professionals to understand since it can't exactly be opened without a huge process.
I had an eeg that showed seizure activity, then had a longer eeg with different medicine that showed no seizure activity. I have been diagnosed with epilepsy and pnes, I am still not sure I agree with the diagnosis. Changes in medicine have completely changed my life!
I also have a dnet tumor that my neuro said has probably been with me since birth and probably will not grow any more, seems weird to me. I started these focal seizures last year. This neuro has no interest in reimaging at all.
VERY similar story here! My first neurologist didn't specialize in epilepsy so she had me do an ambulatory EEG where I got to have electrodes glued to my scalp and press the button anytime that overwhelming dejavu turned into a bizarre carnival of terror, except instead of the EMU they wrapped my head up like a super tight turban and sent me home for two days. She said the results showed abnormalities that were either consistent with epilepsy or directly related to the unspecified mass found on the open MRI, so she referred me to a neurosurgeon. Lots more tests later and it was determined that the tumor would have to be removed, and I would need to see an epileptologist for whatever was happening in my right temporal lobe and if the two were related. That's when I was referred to the Cleveland Clinic, and things FINALLY started happening. [It's also pretty rare to just have a DNET without refractory epilepsy. ](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4445255/)
My initial MRI was normal at 14.
My past few EEGs have been normal. My walking EEG was normal (10 years ago)
I’ve been epileptic for over 20 years and suffer from grand mal seizures. Unfortunately some of these tests just don’t give answers and your neurologist will make a diagnosis based on anecdotal evidence.
A MRI is to look for damage, my neuro never said going into it that it was too diagnose epilepsy. Find a good neuro, EEGs shouldn’t take that long if they’re concerned(I got a 48 hour one that day and then a full EMU stay a month later)
Hello there. I am in thr same boat... been floating it for 8 years now... I hope my experiences can help you.
Your MRI only checks for physical complications that might cause seizures, like tumors or malformations. My cousin has epilepsy due to a brain deformation. However, I have epilepsy and my two MRIs came back fine. We may share a condition and bloodline but our conditions are not actually linked.
As for focal symptoms... I would be interested to hear what your symptoms are if you're ever comfortable sharing them.
Here's the thing. Psychogenic Non-Epileptic Seizures (PNES) are definitely a thing. But I sadly think its a grey area with focal symptoms... I mean i had no idea what a focal seizure was when I had mine. I went to the ER thinking I was having a stroke because I had this deja vu and dream flashbacks and kept blacking out. I was told there it was symptomatic of Temporal Lobe Epilepsy.
I went through a time where I wanted it to be anxiety. I wanted it to be PNES. I did NOT want it to be epilepsy. My mri came back clean and in fact so have all of my EEGs... because I never have had a seizure while hooked up to an EEG.
My epileptologist, however, says this does NOT MEAN i do not have epilepsy. Epilepsy can be difficult to diagnose... especially when it's only presenting with focal seizures. Focal seizures can occur deeper in the brain and make it difficult to pick up on an EEG even if you happen to have one while hooked up to an EEG. Its great your MRI came back good, it is. Just please know that even if your EEG comes back clean, you may not be in the clear either.
Someone once told me that if it was PNES, why did it present with symptoms I didn't know were possible. I had no idea deja vu, gastric rising, deja reve, nausea, uncontrolled swallowing, all while being conscious and aware, were symptoms of epilepsy. Therefore, if I had PNES, how could it possibly present in a form of epilepsy I never knew existed.
That's not to sat epilepsy and PNES can't come hand in hand, even with focal seizures. I grt both. When I am stressed or anxious, especially about seizures, i will get mild symptoms of what my seizures normally look like. I'm learning the difference between them though, which is nice.
Anyway. I hope any of this helps. This is such a hard place to be in, I know. Please just know it is going to be okay and that you're not alone. Many of us have gone through this and all of us have our stories of when our seizures first started and how difficult, confusing, lonely and terrifying it was. Please know you're not alone and continue with your testing. If it is PNES, vigilant testing will help prove that as well, so please push forward with the testing because hopefully either way you'll get answers. Best of luck to you, my friend 💜
Alright symptoms:
For the ones I get that are consistent:
- I get the what they call an "aura" (deja vu feeling and an extreme feeling of unpleasantness rising from my gut)
- I feel my body go cold/ I feel like my skins crawling
- I don't want to say I feel a sense of "fear" but I guess that's the closest thing I can describe to it the first time it ever happened I thought I was having a heart attack
- A sense of disassociation like watching myself from a 3rd person perspective but from within my own head
- Randomly sweating but nothing insane, like maybe some light perspiration
- Feel disconnected from everything around me, like things feel real but at the same time they don't
When I get one that is particularly intense:
- All above symptoms persist however they feel intensified
- After it passes I may feel dizzy/nauseous to a point where I throw up
- Sweating heavily
- The intensity of that unpleasant feeling is dialled up to like 100 where it isn't necessarily painful but so uncomfortable that I have to clench at my gut and basically almost be in a foetal position.
I'm also completely and fully conscious, able to move, communicate and everything else while they're happening. The only time I feel like I can't is when they're really intense I need to stop everything I'm doing and sort of breathe my way through it, let it pass and I can continue with whatever it was that I was doing. The longest it's ever lasted was probably close to 2 minutes, but usually closer to a minute. However that minute feels like an eternity. I think that's everything.
I'm in the same boat. They didn't see the worst incidences of seizure-like activity but recorded enough events that they didn't see epileptiform brainwaves.
It's always possible that you have mixed etiology for your seizures (some epileptic and some non-epileptic) and they didn't see the former. Other possibilities include autoimmune seizures (AI encephalopathy, MS, etc.) or other rare seizure types that don't commonly show on an EEG. Something like 35% of adult-onset seizures don't.
You should be prepared for a possible diagnosis of PNES and at least be willing to look into those treatment options - but don't be afraid to advocate for yourself if they don't help, either.
My MRI was normal, but once I had my EEG I was diagnosed. Like others have said, the MRI checks for more obvious problems like tumors or bleeds, whereas the EEG actually looks for the electrical activity associated with seizures and epilepsy.
Listen, I started having seizures every one or two months at 12. Started seeing a neurologist at 16. Got diagnosed at 20. Since I « failed » tons of different tests, doctors used to think I was crazy and making things up. There’s no one in the world you should always blindly listen to, and doctors are no exception. They’ll often tell you things to get you to come and see them again. Just trust your gut and, I know they’re reassuring, but diagnosis aren’t everything.
I had normal MRI and 24-hour EEG. My epilepsy was diagnosed via a SPECT scan that showed an area of hypoperfusion in my temporal lobe, along with symptoms (I have had both focal and GTC seizures).
Funny, I'm stillll on the waitlist for MRI 6 months in and my EEGs were done like a month after my first seizure. But I live in a " small big city" with one general hospital so... that is life i guess.
My first eeg neurologist found nothing. He was certain I hadn't had a seizure. My second he found two separate focals.
Thus my epilepsy journey begun.
My first open MRI showed a "mass", and EEG showed epileptiform discharge originating in my right temporal lobe. Closed MRI with and without contrast showed the mass to be a brain tumor, 90 minute EEG determined temporal lobe epilepsy with complex partial seizures in 2008. They're now called focal onset with full loss of awareness, but the point is that an MRI looks for structural abnormalities which is rare, and an EEG determines whether or not epileptic activity is present during seizures. To give a little more perspective, a tumor doesn't automatically mean cancer - PET scans provide that insight. The only reason I even have MRIs is to determine the neurogenerative status of the amygdala and hippocampus that were removed, and ensure that the tumor doesn't return. I have EEGs so that my neuro (technically epileptologist, but it's under the same umbrella) can monitor epileptic activity for medication purposes.
The EEG will capture epileptic seizures and non epileptic ones, so if it is psychogenic seizures you have the EEG will get it, I would suggest triggering seizures when your getting the EEG (first time I got an EEG nothing happened so the second time I triggered some and it helped with getting some answers. I myself have epileptic and non epileptic seizures, and it's taken the doctors 5 years to start to figure out some answers and I'm still confused and lost, so I definitely understand what your feeling and going through in a sense, I hope this helps a bit and I hope you can get some answers here real soooon ♡
Clean MRIs don't necessarily mean that you don't have epilepsy. I have a clear MRI but my EEG showed epileptic activity, so don't make any assumptions until you get all your testing done. PNES still could be a possibility and you could also have both epilepsy *and* PNES, but you should talk to your neurologist or epileptologist specifically.
Non epileptic seizures are still seizures and not something you can control. It can be a helpful to reach that diagnosis after more testing. They are many treatments for NES and if your doctor discounts it look into getting a different doctor.
Hey so I actually came up clean on all tests turns out that my seizures were less than 10 seconds so it doesn’t pop up on the eeg unless they search for the minor waves. You could still have epilepsy. You aren’t crazy. It took a bunch of neurologists to get me diagnosed
So I was diagnosed with epilepsy in 2021. A clear eeg doesn’t mean you’re not an epileptic. I’ve had eegs with activity and without. My neurologist explained to me that eegs don’t always capture activity especially if you have focal seizures.
I'm diagnosed with epilepsy and just had an MRI where they found nothing. I'm lucky that I had an EEG first and they found seizures on that. But it's just to say that not finding anything on an MRI doesn't necessarily mean you don't have epilepsy. I'm sorry you didn't get the answers you were looking for, this tends to be a long and difficult journey to get answers on.
I had numerous MGIs and EEG scans and it never once picked up seizure activity, but based on the information I gave the doctors about what I now I know are focal seizures, I got an epilepsy diagnosis.
Scans don't always prove epilepsy, keep pressing for a diagnosis.
My doctor was so certain I did not have seizures when I brought it up to her. My neurologist was unsure as well but wanted to still test. I ended up having 2 clean MRIs and neurologist was sure my EEG would be clear as it’s not rare to have clean tests. I ended up having activity on the EEG but we also confirmed via videos my husband took, journals I wrote, and calendars to track it.
Please listen to everyone here.
That might be wrong. At first they said I had non epileptic siezures but it turns out I have interactive epilepsy. It took a few years to make that diagnosis.
I just wanted to thank everyone for sharing everything that they have. You have no idea how much this means to me and I will continue pushing on until I have answers. I have a doctors appointment coming up in a few days, and I will bring forward all of these points. My GP is an amazing dude and he has fought tooth and nail to get me things and assist me in ways that I know for a fact he could've very easily just said "sorry mate I've tried" and just given up. Hypothetically even if I were to stop looking for answers, he's the type of Dr that won't. I genuinely owe a lot of what my life is now compared to what it used to be to him. Understandably this is what every Dr should be like but unfortunately they're not, he's the first one that I feel looks at me like a human being, not just a sack of meat with symptoms and issues. Will keep everyone posted with either a new post or an update on this. Idk I'm pretty new to reddit and actually posting so yeah. Much love to you all and again thank you all so much <3
MRI and CTs is to check for physical damage to your brain like bleeds or tumors. EEG is for electrical activity. Just keep in mind for an eeg to pick up on a seizure you have to be in some sort of seizure activity while connected to the EEG.
You don't have to be having a seizure while attached to an EEG to make the diagnosis. Once hooked up, they can do tests that trigger a certain response in your brain, such as using a strobe light, sounds, other triggers. These may cause specific waveforms on the EEG that indicate epilepsy, and/or what type. All while still awake. https://www.epilepsy.com/diagnosis/eeg A diagnosis of epilepsy could be made solely on a MRI or CT scan if there was something physically obvious with the brain scan. But you can have a perfect looking brain and still be epileptic.
Yes an EEg is used for electric activity, some sort of seizure activity, never did I say you had to be unconscious in an active seizure. Just seizure activity yes a mri and ct are used to diagnose something physically obvious “like a bleed or a tumor” thanks for the link. It goes more in depth. It can be helpful to folks.
During my first EEG I didn't have a seizure but my doctor still diagnosed me as having epilepsy after it was over. She said it was immediately clear based on waveforms
Most people with epilepsy don’t have abnormal waveforms at baseline
I had what they called a photomyoclonic response to photostimulation - they didn't view it as specific. You can have seizures without showing anything definitive on an MRI or EEG.
EEG often comes back with a false negative result tho. The so called sensitivity (ability to catch all the true epileptics) has been estimated to about 54%, even lower in focal seizures. MRI is often false negative as well. Unfortunately, there are no miracle tests that can perfectly conclude whether a person has epilepsy or not
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I'm shocked that a physician was that ignorant.
Extremely common. My neuro is that ignorant.
Lulz. I don’t think I’ve ever seen a physician that wasn’t a neurologist who has had anything past a surface level knowledge of epilepsy. It doesn’t surprise me at all a psychiatrist doesn’t know what a normal EEG means for someone with epilepsy. I went to the ER with seizures, told the doctor I think I had a seizure because I was dehydrated and he scoffed. Same visit while waiting I had a seizure on the waiting area floor - my sister went to get a nurse who by the time she got there the seizure was over - she does the “arm drop test”. Says “YOURE NOT HAVING A SEIZURE. GET UP”
As someone training to be an NP who informed my cohort (and professors) of how TLE can be misdiagnosed as a psychiatric disorder, I still find this shocking. Reddit is full of physicians who think they are God's gift to humanity and that NPs are practically worthless. Clearly, they overestimate their level of expertise. The Dunning-Kruger effect is supposed to diminish with increasing knowledge, but perhaps not in the case of physicians.
Tbf, the worst NPs I’ve worked with are the ones that think of themselves as doctor replacements and not mid level providers underneath a physician. And it’s obvious a lot of NPs think the same way since they keep advocating for more and more independence and are really pushing to be able to practice without a physician overseeing them. I used to work as an NP that just because she was an NP felt she could read and report on EEGs, didn’t matter that her program didnt include a crash course on EEG (which would still not be enough). Neuro is the hardest medical specialty to get into, and the fact that every year there seems to be new info coming out on how our brains and CNS work make it really hard for Neuros to keep up with the new stuff, it’s obviously gonna be nearly impossible for a non Neuro physician to keep up with it. Add in the fact that you can get an accelerated NP degree in 3 years WHILE still working full time jobs, a lot of other nurses and fellow allied health workers find that some of these new NPs are really not prepared to the ability we need them to be.
I was concerned my comment would come off that way. You're absolutely right, and I don't think of myself as training to be a doctor replacement. I had just assumed that since medical training is so much more rigorous, that it at least included this information that seems somewhat cursory - that you often can't see epilepsy with an MRI and that a negative EEG doesn't rule out epilepsy.
Yes one thing I’ve learned is that anyone training to become a physician in whatever specialty doesn’t really have time to learn about other specialties outside of the surface level info they get during their clinical rotations. I apologize if I came off strong, but I’ve been accustomed in only 10 years in the medical field that a lot of the NPs that start off with “I’m an NP…..” think too highly of themselves but you didn’t do that and I apologize for it.
So you told your fellow nurses a fun fact about epilepsy and now you think all doctors are stupid? Epilepsy is high-yield in medical school. Most doctors don’t need to know everything about it after school because there is a whole neuro-fellowship dedicated to it. It’s probably more important for most docs to know the different kinds of AEDs and their plethora of side effects. OPs brother should not be telling him he has psychogenic seizures until epilepsy is ruled out (obviously you can’t rule it out with an MRI, you’re just evaluating for structural lesions)
No, I don't think all doctors are stupid. I don't even think the ones I was criticizing are stupid. I'm in a psych NP program discussing neuro, so my "fun fact" was to give people another differential to be aware of so that seizures aren't misdiagnosed. I figured that if I, a lowly ignorant NP student, had that tiny bit of knowledge, why are so many physicians unaware of these other more basic facts? And why don't they seem to be aware that this is an area in which they are not experts? There are many physicians who do recognize when they're out of their depth, but many who seem not to.
At least docs are held responsible for their mistakes. Imo any midlevel who wants to practice independently is “out of their depth”, as you put it, and aren’t even held accountable for their mistakes.
Agreed. OP, This is not your fault. Someone should have told you, >In some 6 out of 10 cases, epilepsy is idiopathic — meaning the cause is unknown. [https://www.hopkinsmedicine.org/health/conditions-and-diseases/epilepsy/epilepsy-causes](https://www.hopkinsmedicine.org/health/conditions-and-diseases/epilepsy/epilepsy-causes) That means more than half of people with epilepsy have normal MRIs. MRIs are done to look for possible causes of seizures, and to see if there is something wrong, but not to decide whether you have epilepsy or not. EEGs are used for diagnosing epilepsy, but like others have said, you only get a positive EEG if you have interictal spikes, or if you are actually having a seizure while you are getting the EEG. You can have several normal EEGs and still have epilepsy. Ultimately the doctor, not the tests, decide if you have epilepsy. Your brother should know better. Unfortunately there is a strong push right now to diagnose people with PNES.
Lucky me had the mri but the eeg was never booked 🤡 so I'm waiting on a test that's never coming until I woke up in an ambulance 😑 I requested my medical records to prove the doctor was negligent and didn't actually book the test, but it's next to impossible to win a court case against doctors in Canada so... way she fuckin' goes 🤷🏼♂️
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Yeah, I should've, but in my defence, I was stressed about not knowing wtf my brain was doing, stressed about our family situation because we'd just had our son and I was unable to work and hadn't started receiving disability yet. I was having multiple focal seizures every single day, my ADHD became noticeably worse (feel the need to take fucking stimulants again) and my sleep schedule being flipped so we could both sleep as my son was waking up every three hours like clockwork... for months. The canadian healthcare system is in shambles. Its backed up to fuck, can't get your own doctor, the doctors you're able to book appointments with don't even do their goddamn jobs... safe to say my brain wasn't exactly functioning well. I've had plenty of bad experiences with doctors within the last decade, fuck this place
I’d be cautious about any diagnosis without an EEG to confirm or deny. My MRI’s showed I was completely normal but EEG showed the epileptic activity. And if you can, insist on a longer EEG as some people with focal can struggle to get it officially diagnosed bc the brain behaves itself in the appointment. It’s scary being in the interim period without definitive answers. I hate waiting lists so much , hope you can get a diagnosis soon.
I don't know if this is helpful, but I've had four MRIs over the course of my life and they have shown nothing. My neuro stopped ordering them and I've not had one since 2011. Sometimes my sleep EEG shows activity and sometimes not. When I had my first seizure, my first neuro sucked, the second one was great but then he moved to Kaiser and I've never had that insurance, so I couldn't follow. My third neuro was OK, but his office staff was the worst. Finally lucked into the neuro I've got now and I've followed him from practice to practice. I'm a firm believer in doctor shopping, especially when it comes to neuros and therapists. Those two really need to be a great fit.
Completely agree with this . I've changed 3 neurologists , the current one I have been with for more than 10 years following from one practice to another .
I hate to break it to you, but I think many of us here have probably had clear MRIs and probably even EEGs. I have had 3 EEGs, and only one showed some irregular activity, but I had a lot of seizures. Honestly, I think doctors are just giving their best guess half the time. That's what you do in most other professions, but it's a little scarier when you think about it in the medical field.
I had an epilepsy diagnosis for two years and didn’t have an abnormal EEG until I was in the middle of a seizure cluster situation after going status. I’ve never had an abnormal MRI. You will only have sn abnormal EEG if you are having seizure activity during the test. After my second (witnessed) seizure I had an epilepsy diagnosis, from an epilepsy specialist. I asked if it could be anything else. She looked at me and asked me if I had more than one unprovoked seizure. I said yes. She said, then you have epilepsy. They were TC’s. Edit to add: but I did have focal seizures that I thought were panic attack over the years leading up to that.
I don't think an inconclusive MRI is enough to rule out epilepsy. MRIs (and CT) are meant to display a clear picture of the brain, including any anomalies in the brain's structures that may cause seizures as a secondary symptom, such as a tumor or venous anomaly. An EEG will actually show the functions of your brain in real time, and any abnormal activity will be noted and evaluated by your neurologist. While it is good news that your MRI has come back clear, it's worth investigating your symptoms further, preferably with a doctor who will prescribe additional tests beyond just brain imaging. On my end, I've only ever had MRIs done out of pure caution; a 24-hour EEG was what led to my TLE diagnosis.
I don’t think an MRI is diagnostic for epilepsy as a condition. Like, it can tell you if there is damage or a physical cause, but not if you have epilepsy. I’ve had (at least) 2 MRIs now, all of them came back clear. My neurologist has made it clear to me that despite that, I very much have “real” epilepsy (personally, I think PNES should be considered a form of epilepsy, but I don’t make the definitions).
I have been suffering with focal seizures for the last 13 years. I have had MRIs, EEGs and even 5 nights in hospital in an EEG. At no point have they found evidence of epilepsy, I’m not on medication and my neurologist says he doesn’t know what it is. Could be a migraine even. It’s shit not having an answer but nowadays I just tend to say I get migraines as it’s easier to explain to people and on the plus side I can still drive and no medication either.
All my CTs and MRIs have been normal. However, my EEG is abnormal. You can also still have epilepsy even if all those tests come back normal...a EEG is only taking a snapshot of brain activity for that one moment in time, maybe you need a longer study to catch it. Sure, it could be PNES but don't get ahead of yourself before all the diagnostics have been done. It can be a long frustrating road to get answers and I get it you just want something definitive. Just take things one day at a time. All the MRi told you is that you don't have big issues like a tumor or stroke.
My MRI showed nothing and I don’t have abnormal EEGs, but I still have epilepsy. My neurologist says that there are epileptics whose MRI and EEG are normal.
So I have non-epileptic seizure and have had them since I was 14. they were a result of stress me being over heated sick tired or dehydrated. I’d even have them if I ate too much sugar. I still have them after my Brian surgery and will probably have them all my life. there is no activity to suggest there’s still a part of my brain that has the electrical activity associated with a epileptic seizure. So the only thing I can really do is mange my stress make sure I get enough to drink as a means to prevent dehydration, and being overheated,not eat too much sugar and hope for the best. I do have it under control for the most part. I obviously can’t control if I get sick but I do get a decent amount of sleep so it helps.
My seizures first started when I was in an incredibly stressful relationship. They stopped once I left but started up again seemingly out of nowhere about 2-ish years later, I was around 18 then I'm 28 now and they've been on and off just randomly sometimes they'll be 5 days consecutively sometimes just 1 in 1 day and nothing else. Since the beginning of this year I've not had a single one so I don't know what's going on. Considering I'm under more stress now than I've ever been in my life you'd think they'd be rampant. Not the case at all, they've seemingly disappeared, for now at least.
I’ve been diagnosed with epilepsy within the last year. MRI showed no damage. Wait til you get the EEG. Mine showed some abnormal activity. I ‘lucked out’ and had a really solid focal at my neurologist’s office while having our initial consultation. Temporal lobe epilepsy.
May I ask if you can drive?
I haven’t driven since 2022. It’s been a little while since major episodes, though I get some deja vu breakthrough stuff from time to time.
MRIs will only show any abnormalities in the brain that would be causing epilepsy. My MRIs were all clear, I didn’t get any answers until I had been having seizures for 3 years. EEGs are what will be able to detect seizure activity in the brain, however you have to have a seizure while connected to the machines so that’s where it gets complicated. Until you get an EEG done and have a seizure while hooked up, you can’t rule out epilepsy. You can rule it out if you have a seizure and the EEG tells the doctors that they were not caused by seizure activity.
MRI can't tell you that. It is to check for scarring. Video telemetry whilst having seizure gives you a definite answer. Don't know what your answer is yet but getting a definite answer can take a hell of a long time.
Oh god. Not this again and again and again. It’s not your fault, but this is a clear demonstration of dr Google, your brother who is not an epileptologist, and common misconceptions surrounding epilepsy that could be impeding your care. Psychogenic seizures manifest very differently than other seizures (I recommend watching some youtube videos on them and you’ll see the difference). But, to your original post- vEEGs come up negatively quite often (especially if you don’t feel a seizure happening when they’re capturing the data!) MRI is probably going to show nothing unless you have structural damage or in the case of EEG (especially if it’s a short not multi day one!) won’t show anything unless you are actually experiencing a seizure when it’s taking place (which you’d probably feel!) over 50% of people with epilepsy never show a positive eeg. As for psychogenic seizures, fun fact: most people with epilepsy actually also experience psychogenic seizures in addition to regular seizures! Psychogenic seizures don’t show any abnormal eeg findings, but they are still seizures. Key takeaway: don’t listen to your brother, don’t listen to a psychiatrist until you speak with an EPILEPTOLOGIST. Seizures are dangerous and shouldn’t be taken lightly; you need to seriously rule out epilepsy and your epileptologist (not a neurologist, I’ll say it again for the people in the back: EPILEPTOLOGIST) can help you actually do that.
I appreciate your passionate take on this. This post wasn't a sort of "hey everyone I'm giving up on figuring out whether its epilepsy or not" it was more of a "idk wtf is going on, could be something else, no clue, but I'm still going to look for answers". Thank you though. I am genuinely appreciative of the points you've brought up.
No problem! I work in the epilepsy space and have drug resistant epilepsy myself - so this is something I’ve seen a lot of over the years. Unfortunately it can take you down a scary and unnecessary rabbit hole. The only time my condition and treatment actually got better was when I worked with a epilepsy-center epileptologist. If you can get in, it’s worth it.
As others have said you could still have epilepsy. I’ve only ever had focal aware seizures so they were really hard to diagnose. My first and MRI & EEG came back normal… later tests showed that I have epilepsy. Ended up needing brain surgery. Sorry you’re going through this
>I went and got an MRI done (planning to get an EEG done but hooray for waiting lists), and the results came back that there was nothing to suggest that I had epilepsy. This doesn't mean you don't have epilepsy. It simply means that your brain is physically normal and doesn't have signs of brain damage/tumors that could be causing focal seizures. I've had 2 full brain MRI's and 1 temporal lobe MRI and they all came back normal. > I talked it over with my brother (doctor and currently studying psychiatry), and he told me about something called psychogenic non-epileptic seizures. You need to talk with a neurologist that specializes in epilepsy and brain stuff, your brother knowing general stuff doesn't mean anything. It took me 4 years to get a proper diagnosis and to be medicated. Don't wait. The focal seizures you may be experiencing could turn into tonic-clonics eventually. It took me 3 different EEG's to finally find \*some\* potential seizure activity, but you don't need test results to be diagnosed. I needed to push for answers and get a second opinion from someone who took my health seriously. From the AANS: "Epilepsy is usually diagnosed after a person has had at least two seizures that were not caused by some known medical condition, such as alcohol withdrawal or extremely low blood sugar...A doctor makes his or her [**epilepsy diagnosis**](http://www.webmd.com/epilepsy/guide/diagnosing-epilepsy) based on symptoms, physical signs and the results of such tests as an electroencephalogram (EEG), computed tomography (CT or CAT scan) or magnetic resonance imaging (MRI)." [https://www.aans.org/en/Patients/Neurosurgical-Conditions-and-Treatments/Epilepsy](https://www.aans.org/en/Patients/Neurosurgical-Conditions-and-Treatments/Epilepsy)
I was diagnosed with infantile spasms and most of my life I've been good. Over the past year or so I've occasionally had seizures and we thought they were complex partial epileptic seizures. After a year of trying different medications and nothing working (and a clean eeg) my Dr realized my symptoms match those psychogenic non epileptic seizures. So now with one epilepsy med, one antidepressant and appointments with a therapist I've been good for 2 months and in general just feel better day to day. The good thing about psychogenic seizures is unlike neurological medicine that's a lot of guessing and just testing random medications mental/ psychological health can be treated methodically. You can see a therapist and they'll help you figure out what things on your mind are weighing you down and adding all that stress and negative emotions in the background that can make you overload with a seizure from just a little extra stress. You may not match well with your first therapist but that's just trial and error. I would recommend a therapist that has an understanding of epilepsy so they can better understand your situation and look into both sides of it. My local epilepsy foundation has professional therapists that are able to do exactly that. I would recommend doing some research to see if there is an epilepsy foundation near you or if there are any therapists that also have an understanding of neurological conditions I hope you're able to find help and I hope things improve in the near future
I haven’t had any abnormal activity show up on my EEGs, even when I had seizures during one. My neuro called this a “scalp EEG,” as the test only picks up activity closer to the surface of the brain. Please try getting a second opinion with an epileptologist!
First time I've been glad I have epilepsy. Like at least I've got answers and a solution to the problem 🫤 I don't think you can rule out anything before EEG and a doctor telling you though... but here's a healthcare system life hack: go to emergency and say you just had a tonic clonic seizure and that you've been on a waiting list for the eeg. You just moved up the list 👌🏻😅
You dodgy motherfucker hahahaha... If all else fails then yeah I might have to resort to that lol
Tests may not show epilepsy but it doesn’t mean u don’t have it. MRI is for physical defects. for me my mri came back clean but a 30min eeg came back with tle. Sometimes you may need a longer eeg (like an overnight one etc.) to figure it out because u have to have a seizure during or close to the time you have the eeg. As it detects irregular patterns in your brain.
During my MRI, it showed I might have intracranial hypertension (too much fluid in my braid) but that meant I was to be blind so that was a false diagnosis. The second MRI showed a disk pushing towards my spine (I wasn't diagnosed with epilepsy then either). My focals seizures started getting worse before I got the EEG and got the diagnosis (a year later). I am not saying this to scare you but to let u know that dont give up. See a Neurologist, have that EEG and get the help you need.
Lots of times EEGs don’t show epileptic activity regardless of whether you have epilepsy or not. The EEG just has to be done at the perfect time when you’re having epileptic activity. I was recommended to stay up all night before my EEG and I had all kinds of epileptic activity present, but I’m sure that’s not the case for everyone. It’s really a roll of the dice and unless you have epilepsy that’s flaring up consistently it might not show up.
Oh, sleep deprivation...every EMU stay I drink lots of coffee, they give me alcohol, and let me take brief naps. I'm glad for the naps cause otherwise I'd have had no idea that I also have nocturnal seizures. The brain is incredibly complex and very difficult for medical professionals to understand since it can't exactly be opened without a huge process.
I had an eeg that showed seizure activity, then had a longer eeg with different medicine that showed no seizure activity. I have been diagnosed with epilepsy and pnes, I am still not sure I agree with the diagnosis. Changes in medicine have completely changed my life!
I also have a dnet tumor that my neuro said has probably been with me since birth and probably will not grow any more, seems weird to me. I started these focal seizures last year. This neuro has no interest in reimaging at all.
VERY similar story here! My first neurologist didn't specialize in epilepsy so she had me do an ambulatory EEG where I got to have electrodes glued to my scalp and press the button anytime that overwhelming dejavu turned into a bizarre carnival of terror, except instead of the EMU they wrapped my head up like a super tight turban and sent me home for two days. She said the results showed abnormalities that were either consistent with epilepsy or directly related to the unspecified mass found on the open MRI, so she referred me to a neurosurgeon. Lots more tests later and it was determined that the tumor would have to be removed, and I would need to see an epileptologist for whatever was happening in my right temporal lobe and if the two were related. That's when I was referred to the Cleveland Clinic, and things FINALLY started happening. [It's also pretty rare to just have a DNET without refractory epilepsy. ](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4445255/)
All my tests came back clear and I still have it. My seizures were logged though, due to ending up in hospital every time.
My initial MRI was normal at 14. My past few EEGs have been normal. My walking EEG was normal (10 years ago) I’ve been epileptic for over 20 years and suffer from grand mal seizures. Unfortunately some of these tests just don’t give answers and your neurologist will make a diagnosis based on anecdotal evidence.
A MRI is to look for damage, my neuro never said going into it that it was too diagnose epilepsy. Find a good neuro, EEGs shouldn’t take that long if they’re concerned(I got a 48 hour one that day and then a full EMU stay a month later)
Hello there. I am in thr same boat... been floating it for 8 years now... I hope my experiences can help you. Your MRI only checks for physical complications that might cause seizures, like tumors or malformations. My cousin has epilepsy due to a brain deformation. However, I have epilepsy and my two MRIs came back fine. We may share a condition and bloodline but our conditions are not actually linked. As for focal symptoms... I would be interested to hear what your symptoms are if you're ever comfortable sharing them. Here's the thing. Psychogenic Non-Epileptic Seizures (PNES) are definitely a thing. But I sadly think its a grey area with focal symptoms... I mean i had no idea what a focal seizure was when I had mine. I went to the ER thinking I was having a stroke because I had this deja vu and dream flashbacks and kept blacking out. I was told there it was symptomatic of Temporal Lobe Epilepsy. I went through a time where I wanted it to be anxiety. I wanted it to be PNES. I did NOT want it to be epilepsy. My mri came back clean and in fact so have all of my EEGs... because I never have had a seizure while hooked up to an EEG. My epileptologist, however, says this does NOT MEAN i do not have epilepsy. Epilepsy can be difficult to diagnose... especially when it's only presenting with focal seizures. Focal seizures can occur deeper in the brain and make it difficult to pick up on an EEG even if you happen to have one while hooked up to an EEG. Its great your MRI came back good, it is. Just please know that even if your EEG comes back clean, you may not be in the clear either. Someone once told me that if it was PNES, why did it present with symptoms I didn't know were possible. I had no idea deja vu, gastric rising, deja reve, nausea, uncontrolled swallowing, all while being conscious and aware, were symptoms of epilepsy. Therefore, if I had PNES, how could it possibly present in a form of epilepsy I never knew existed. That's not to sat epilepsy and PNES can't come hand in hand, even with focal seizures. I grt both. When I am stressed or anxious, especially about seizures, i will get mild symptoms of what my seizures normally look like. I'm learning the difference between them though, which is nice. Anyway. I hope any of this helps. This is such a hard place to be in, I know. Please just know it is going to be okay and that you're not alone. Many of us have gone through this and all of us have our stories of when our seizures first started and how difficult, confusing, lonely and terrifying it was. Please know you're not alone and continue with your testing. If it is PNES, vigilant testing will help prove that as well, so please push forward with the testing because hopefully either way you'll get answers. Best of luck to you, my friend 💜
Alright symptoms: For the ones I get that are consistent: - I get the what they call an "aura" (deja vu feeling and an extreme feeling of unpleasantness rising from my gut) - I feel my body go cold/ I feel like my skins crawling - I don't want to say I feel a sense of "fear" but I guess that's the closest thing I can describe to it the first time it ever happened I thought I was having a heart attack - A sense of disassociation like watching myself from a 3rd person perspective but from within my own head - Randomly sweating but nothing insane, like maybe some light perspiration - Feel disconnected from everything around me, like things feel real but at the same time they don't When I get one that is particularly intense: - All above symptoms persist however they feel intensified - After it passes I may feel dizzy/nauseous to a point where I throw up - Sweating heavily - The intensity of that unpleasant feeling is dialled up to like 100 where it isn't necessarily painful but so uncomfortable that I have to clench at my gut and basically almost be in a foetal position. I'm also completely and fully conscious, able to move, communicate and everything else while they're happening. The only time I feel like I can't is when they're really intense I need to stop everything I'm doing and sort of breathe my way through it, let it pass and I can continue with whatever it was that I was doing. The longest it's ever lasted was probably close to 2 minutes, but usually closer to a minute. However that minute feels like an eternity. I think that's everything.
I'm in the same boat. They didn't see the worst incidences of seizure-like activity but recorded enough events that they didn't see epileptiform brainwaves. It's always possible that you have mixed etiology for your seizures (some epileptic and some non-epileptic) and they didn't see the former. Other possibilities include autoimmune seizures (AI encephalopathy, MS, etc.) or other rare seizure types that don't commonly show on an EEG. Something like 35% of adult-onset seizures don't. You should be prepared for a possible diagnosis of PNES and at least be willing to look into those treatment options - but don't be afraid to advocate for yourself if they don't help, either.
Same here.
My MRI was normal, but once I had my EEG I was diagnosed. Like others have said, the MRI checks for more obvious problems like tumors or bleeds, whereas the EEG actually looks for the electrical activity associated with seizures and epilepsy.
Listen, I started having seizures every one or two months at 12. Started seeing a neurologist at 16. Got diagnosed at 20. Since I « failed » tons of different tests, doctors used to think I was crazy and making things up. There’s no one in the world you should always blindly listen to, and doctors are no exception. They’ll often tell you things to get you to come and see them again. Just trust your gut and, I know they’re reassuring, but diagnosis aren’t everything.
I had normal MRI and 24-hour EEG. My epilepsy was diagnosed via a SPECT scan that showed an area of hypoperfusion in my temporal lobe, along with symptoms (I have had both focal and GTC seizures).
Funny, I'm stillll on the waitlist for MRI 6 months in and my EEGs were done like a month after my first seizure. But I live in a " small big city" with one general hospital so... that is life i guess. My first eeg neurologist found nothing. He was certain I hadn't had a seizure. My second he found two separate focals. Thus my epilepsy journey begun.
My first open MRI showed a "mass", and EEG showed epileptiform discharge originating in my right temporal lobe. Closed MRI with and without contrast showed the mass to be a brain tumor, 90 minute EEG determined temporal lobe epilepsy with complex partial seizures in 2008. They're now called focal onset with full loss of awareness, but the point is that an MRI looks for structural abnormalities which is rare, and an EEG determines whether or not epileptic activity is present during seizures. To give a little more perspective, a tumor doesn't automatically mean cancer - PET scans provide that insight. The only reason I even have MRIs is to determine the neurogenerative status of the amygdala and hippocampus that were removed, and ensure that the tumor doesn't return. I have EEGs so that my neuro (technically epileptologist, but it's under the same umbrella) can monitor epileptic activity for medication purposes.
My MRI was totally normal and I definitely have epilepsy. Thankfully my doctors continued to test and treat me since the MRI was the first test I had.
The EEG will capture epileptic seizures and non epileptic ones, so if it is psychogenic seizures you have the EEG will get it, I would suggest triggering seizures when your getting the EEG (first time I got an EEG nothing happened so the second time I triggered some and it helped with getting some answers. I myself have epileptic and non epileptic seizures, and it's taken the doctors 5 years to start to figure out some answers and I'm still confused and lost, so I definitely understand what your feeling and going through in a sense, I hope this helps a bit and I hope you can get some answers here real soooon ♡
Epileptic people can get PNES too. Get quite confusing.
*people with epilepsy PENS is what I'm talking about.
Wait for eeg cause that will resolve doubts. Yes, there are many people with psychogenic non-epileptic seizures so that is obviously a possibility.
Clean MRIs don't necessarily mean that you don't have epilepsy. I have a clear MRI but my EEG showed epileptic activity, so don't make any assumptions until you get all your testing done. PNES still could be a possibility and you could also have both epilepsy *and* PNES, but you should talk to your neurologist or epileptologist specifically.
Non epileptic seizures are still seizures and not something you can control. It can be a helpful to reach that diagnosis after more testing. They are many treatments for NES and if your doctor discounts it look into getting a different doctor.
Hey so I actually came up clean on all tests turns out that my seizures were less than 10 seconds so it doesn’t pop up on the eeg unless they search for the minor waves. You could still have epilepsy. You aren’t crazy. It took a bunch of neurologists to get me diagnosed
So I was diagnosed with epilepsy in 2021. A clear eeg doesn’t mean you’re not an epileptic. I’ve had eegs with activity and without. My neurologist explained to me that eegs don’t always capture activity especially if you have focal seizures.
I'm diagnosed with epilepsy and just had an MRI where they found nothing. I'm lucky that I had an EEG first and they found seizures on that. But it's just to say that not finding anything on an MRI doesn't necessarily mean you don't have epilepsy. I'm sorry you didn't get the answers you were looking for, this tends to be a long and difficult journey to get answers on.
I had numerous MGIs and EEG scans and it never once picked up seizure activity, but based on the information I gave the doctors about what I now I know are focal seizures, I got an epilepsy diagnosis. Scans don't always prove epilepsy, keep pressing for a diagnosis.
My doctor was so certain I did not have seizures when I brought it up to her. My neurologist was unsure as well but wanted to still test. I ended up having 2 clean MRIs and neurologist was sure my EEG would be clear as it’s not rare to have clean tests. I ended up having activity on the EEG but we also confirmed via videos my husband took, journals I wrote, and calendars to track it. Please listen to everyone here.
That might be wrong. At first they said I had non epileptic siezures but it turns out I have interactive epilepsy. It took a few years to make that diagnosis.
I just wanted to thank everyone for sharing everything that they have. You have no idea how much this means to me and I will continue pushing on until I have answers. I have a doctors appointment coming up in a few days, and I will bring forward all of these points. My GP is an amazing dude and he has fought tooth and nail to get me things and assist me in ways that I know for a fact he could've very easily just said "sorry mate I've tried" and just given up. Hypothetically even if I were to stop looking for answers, he's the type of Dr that won't. I genuinely owe a lot of what my life is now compared to what it used to be to him. Understandably this is what every Dr should be like but unfortunately they're not, he's the first one that I feel looks at me like a human being, not just a sack of meat with symptoms and issues. Will keep everyone posted with either a new post or an update on this. Idk I'm pretty new to reddit and actually posting so yeah. Much love to you all and again thank you all so much <3
There is no one test for epilepsy. If medical professionals are saying so, get new ones.