Hello all, I last posted here during summer last year (summer 2015) and was concerned I mightve had a form of epilepsy. I had testing done around that time last year and after they came back clear (I did have an eeg in 2012 though that showed left temporal lobe activity that they called a normal "variant") I eventually stopped coming on here to focus on my mental health instead. I have not completely given up on the neurological aspect however and still suspect something is wrong. My symptoms (depersonalization/derealization) are always present from what I think was due to a bad drug trip years ago. However I get symptoms like what I experienced today that make me think there could be more to it than just something psychiatric. Today when I was at a car dealership with someone I had to pay attention to what the salesman was saying. Pretty much as soon as I got there I noticed how bad my symptoms were. Severe cognitive impairment, VERY strange feelings in my head (this is what makes me think it could be neurological), extreme constant visual disturbances (seeing yellow spots), and just feeling dazed and horrible. I was so cognitively impaired and spaced out that I could not focus or concentrate on ANYTHING and could not take in anything anyone was saying and felt like I had the inability to learn. It felt hard to talk even. I fear that this may be schizophrenia and it probably is (or something similar) but I wanted to post here anyways to see if someone has any answers. I should note that I do get worse after playing video games and I did play alot today. If anyone knows anything please help me, Im desperate.
Something Is Wrong and I need help
- Thread starter tom21
- Start date
Welcome to the Coping With Epilepsy Forums
Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.
Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!
No I have not. I've only seen a neurologist and havent been to see any neurologist for that matter at any recent time. Just talked to him over the phone or emailed and he doesn't think Im neurologically ill. He called what showed up on my eeg in 2012 a "normal variant". I did have an eeg this past summer that came up normal but I know those can show normal results even when someone is having seizure activity so I have not given up yet.
Reaction To Flashing Lights
Tom,
Flashing lights don't trigger everyone. I can watch a strobe light for as long as I want, without any negative results.
Having these strange feelings in your head doesn't necessarily mean they are 'mental problems'. There are many different levels of seizures. When a person has an 'Aura', they are having a light seizure. NOT ALL seizures present themselves in the same way. A seizure may be smelling a individual smell, seeing something, moving in a different way, etc. The big problem is that every person can have a different trigger! This may make it hard for someone to understand what is happening to them:twocents:
ACsHuman
Tom,
Flashing lights don't trigger everyone. I can watch a strobe light for as long as I want, without any negative results.
Having these strange feelings in your head doesn't necessarily mean they are 'mental problems'. There are many different levels of seizures. When a person has an 'Aura', they are having a light seizure. NOT ALL seizures present themselves in the same way. A seizure may be smelling a individual smell, seeing something, moving in a different way, etc. The big problem is that every person can have a different trigger! This may make it hard for someone to understand what is happening to them:twocents:
ACsHuman
In my opinion a referral to a neurologist is warranted. It sounds like it has been four years (you mention a 2012 EEG) since you have seen one, and another appointment to discuss your symptoms may be helpful. Your symptoms also sound slightly like migraines; not all migraines have to be accompanied by pain.
- Messages
- 17,355
- Reaction score
- 756
- Points
- 263
Yes, my first thought was that they could be migraines. But a neuro should help you sort out what's going on. Try keeping a journal of when the symptoms occur, how long they last, and what happens during them. That will be helpful to both you and any doc who is evaluating your symptoms to look for a diagnosis.
And go easy on the video games.
And go easy on the video games.
What you are describing could be auras. I can recall complaining of "strange feelings" in my head since childhood, but nobody knew what they were. It wasn't until after I had 3 or 4 Tonic Clonic seizures in 1987 that one occurred during an EEG. Those feelings were finally diagnosed--as Simple Partial seizures.
In my case, they were originating in my brain where I had scar tissue. I was a forceps delivery, & had scar tissue from it.
In my case, they were originating in my brain where I had scar tissue. I was a forceps delivery, & had scar tissue from it.
Kyla
New
- Messages
- 79
- Reaction score
- 0
- Points
- 0
I'm in the same boat as you my friend. This sounds a lot like one of the things I experience as well (depersonalization/derealization 24/7, sudden really intense feelings of it and feeling dazy, etc). The only I don't experience is the yellow lights...I get blurred and double vision. I've also had EEGs and they've come back clear as well, although they are still thinking they could be simple partial seizures. It's hard to diagnose simple partial seizures if they are all your having (ie, no complex partial or grand mals) because they can be deep in the brain and easy to mis or easily mimic another condition. Don't give, like everyone else is saying, keep a diary of when these events occur, what happens during them, how often they occur, and if you can (this might be the most helpful to your doc because they sound like simple partials) record, or have someone else record you having one of your events.
Feel free to private message me, welcome to the forum and best of luck
Kyla
Feel free to private message me, welcome to the forum and best of luck
Kyla
My auras are intense fear and the intense fear is a main symptom of my complex partials. As a child and teenager, my doctors assumed they were anxiety attacks and never sent me to a neurologist. At 21 years old, I had a tonic-clonic and was taken to the ER. A neurologist spoke to me in the ER and I told him about my "attacks" which I remembered having one right before the grand mal. Before I could even finish describing the symptoms, the neurologist said that's a complex partial seizure. I always knew they were not anxiety attacks but I had no idea what they were. A 24 hour EEG confirmed. After having the tonic-clonic, I found out I had a tonic-clonic the day I was born but test results didn't show anything at that time.
Frink
New
- Messages
- 1,012
- Reaction score
- 1
- Points
- 0
Boy that sounds familiar, except for the tonic clonic. I was also misdiagnosed for years with panic attacks/ anxiety, and it was a hard diagnosis to get removed.
I recall how happy I was when I finally knew what those 'feelings' were (the SPs/auras). I had gotten sick of people accusing me of faking something to get out of doing things. Now I could tell them that I had proof--I wasn't faking anything.
That day in the ER when the neurologist diagnosed me, I was like are you serious I've been having these all my life. Well, I can remember having them as far back as 7 years old. It was a great relief to finally find out what was wrong with me after all those years. I thought I was crazy when I was a teenager and the only one to experience what I experienced. I know this will sound crazy but I felt like there was a devil inside my head. I'm sorry that others have had similar experiences but it also helps me feel better to know I'm not alone in my experiences and that others can understand what I went through. Pediatricians, primary care physicians, and psychiatrists need to be better educated about epilepsy. I hope they are better educated today than when I was growing up.
Last edited:
At one time, they thought I had a heart problem, & did EKGs--reg. & 24 hour. Of course, they didn't find anything.
When I had the Tonic Clinics, they did EEGs & CT scans. That's when they diagnosed my Simple Partial seizures. I had one during an EEG, so they knew what I had been referring to. I have scar tissue in my brain where the SPs originate. I was a forceps delivery, & the scar is from that.
When I had the Tonic Clinics, they did EEGs & CT scans. That's when they diagnosed my Simple Partial seizures. I had one during an EEG, so they knew what I had been referring to. I have scar tissue in my brain where the SPs originate. I was a forceps delivery, & the scar is from that.
I was a forceps delivery and my MRI showed scar tissue, but I don't know if the scar tissue is from the forceps. I have scar tissue on the left temporal lobe and occipital lobe. My VEEG showed that my complex partials start in my left temporal lobe and that's the location that was operated on.
Hey Music36, I tried pm-ing you but couldnt and I really hope you see this post. I read some of your replies in my thread here and also read your about me section. I feel that I can relate to the "extreme fear" part perhaps because for awhile, when it was happening alot last year, I remmeber telling my therapist about when I would get this extreme fear unlike anything Ive ever felt in my life. I told her it was like a "primal fear" and that when it would happen it came along with an increase in dp/dr symptoms and she chalked it up to psychiatric symptoms that come with things like dissociation and ptsd. What youre saying though about the "i knew it wasnt anxiety attacks", extreme fear, etc I truly do wonder if maybe my case is similar to yours and that maybe youre right about me possibly having complex partial seizures.
Edit: Interesting how you also mention the problems originating in your left temporal lobe. I had an EEG in 2012 that showed left temporal lobe seizure activity that they ended up saying was a "normal variant". Very suspicious.
Last edited:
Tom,
People who have epilepsy don't always have abnormal EEGs. Others have experienced a similar situation as mine in being wrongly diagnosed in the beginning. The thing is it took me having a tonic-clonic to get diagnosed correctly and many years of living with it before being diagnosed. My doctors didn't even consider the possibility of epilepsy and I was never sent to have an EEG. I knew they were not anxiety attacks b/c my state of consciousness is altered and also b/c of all the other symptoms I experience. But, like a lot of people I was not educated about epilepsy so I had no idea what was wrong with me. Often, people who have epilepsy also have psychological issues. Anxiety and depression are both quite common to go with epilepsy. But, of course, not everyone has these issues. So, you can have both epilepsy and psychological issues. They just have to be separated in diagnosing. Having gone through epilepsy surgery last year has brought on new issues for me, but it was worth it.
People who have epilepsy don't always have abnormal EEGs. Others have experienced a similar situation as mine in being wrongly diagnosed in the beginning. The thing is it took me having a tonic-clonic to get diagnosed correctly and many years of living with it before being diagnosed. My doctors didn't even consider the possibility of epilepsy and I was never sent to have an EEG. I knew they were not anxiety attacks b/c my state of consciousness is altered and also b/c of all the other symptoms I experience. But, like a lot of people I was not educated about epilepsy so I had no idea what was wrong with me. Often, people who have epilepsy also have psychological issues. Anxiety and depression are both quite common to go with epilepsy. But, of course, not everyone has these issues. So, you can have both epilepsy and psychological issues. They just have to be separated in diagnosing. Having gone through epilepsy surgery last year has brought on new issues for me, but it was worth it.
Music36, did you ever get symptoms of depersonalization/derealization or symptoms that mimick psychosis?
Last edited:
Frink
New
- Messages
- 1,012
- Reaction score
- 1
- Points
- 0
After reading the definitions of depersonalization and derealization from here http://psychcentral.com/disorders/depersonalization-derealization-disorder-symptoms/
YES I have experienced both as side effects of temporal lobe epilepsy. I would get these feelings when postictal and interictally when experiencing a lot of seizures.
Sometimes everything looked fake, Lamictal made the world look fake, like everything was part of a movie set 24/7, very weird. After a seizure (postictal) and in between seizures (interictal) during periods of increased seizure activity I would not quite feel like my normal self, like I was only able to access and use part of my brain and part of my personality was missing, emotionally blunted.
It is very hard to explain but it does make sense, the brain is partially "offline" after a seizure and until sleep and or a long period of seizure free time will remain kind of in a "limp home mode", you may get where your going, but it will not be a smooth normal ride.
I have also experienced a lot of micropsia and some macropsia aka Alice in Wonderland Syndrome
Primal fear, my seizures start with a very strong sense of alarm, I would not call it fear, I have felt fear, this is definitely in the fight or flight response arena but kind of like you have not decided to fight or flee, you are just stuck in this all consuming sense of alarm.
This lasts a few seconds then the deja vu X1000 starts, then there is the weird queasy/ free falling stomach feeling, then a smell/olfactory feeling that becomes a taste/ post nasal drip feeling with swallowing, then a brief dreamy video I cannot remember and then poof, I am gone, unconscious. Most of my seizures stop at the taste part and I do not pass out.
I have often thought this is a lot like what dying must feel like, the sudden alarm/ fear, the weird queasy feeling of impending doom, the harsh acceptance of the ride you are about to take and then POOF!!! your gone. Hopefully death does not include the weird smells, tastes and videos.
For the first 13 - 17 years I only passed out once, all of my other seizures (that I was aware of) stopped at the deja vu part and for years I thought they were some kind of premonition and would change my plans for the next few days. My seizures started when I was 13 but was not diagnosed until I was 40.
All of my short EEG's (15 - 30 min) were normal, only a 72 hr ambulatory EEG picked up small sub clinical interictal discharges in the right temporal lobe, since I had no bigger seizures while attached to the EEG's it makes sense that nothing bigger was caught on the EEG's.
YES I have experienced both as side effects of temporal lobe epilepsy. I would get these feelings when postictal and interictally when experiencing a lot of seizures.
Sometimes everything looked fake, Lamictal made the world look fake, like everything was part of a movie set 24/7, very weird. After a seizure (postictal) and in between seizures (interictal) during periods of increased seizure activity I would not quite feel like my normal self, like I was only able to access and use part of my brain and part of my personality was missing, emotionally blunted.
It is very hard to explain but it does make sense, the brain is partially "offline" after a seizure and until sleep and or a long period of seizure free time will remain kind of in a "limp home mode", you may get where your going, but it will not be a smooth normal ride.
I have also experienced a lot of micropsia and some macropsia aka Alice in Wonderland Syndrome
Primal fear, my seizures start with a very strong sense of alarm, I would not call it fear, I have felt fear, this is definitely in the fight or flight response arena but kind of like you have not decided to fight or flee, you are just stuck in this all consuming sense of alarm.
This lasts a few seconds then the deja vu X1000 starts, then there is the weird queasy/ free falling stomach feeling, then a smell/olfactory feeling that becomes a taste/ post nasal drip feeling with swallowing, then a brief dreamy video I cannot remember and then poof, I am gone, unconscious. Most of my seizures stop at the taste part and I do not pass out.
I have often thought this is a lot like what dying must feel like, the sudden alarm/ fear, the weird queasy feeling of impending doom, the harsh acceptance of the ride you are about to take and then POOF!!! your gone. Hopefully death does not include the weird smells, tastes and videos.
For the first 13 - 17 years I only passed out once, all of my other seizures (that I was aware of) stopped at the deja vu part and for years I thought they were some kind of premonition and would change my plans for the next few days. My seizures started when I was 13 but was not diagnosed until I was 40.
All of my short EEG's (15 - 30 min) were normal, only a 72 hr ambulatory EEG picked up small sub clinical interictal discharges in the right temporal lobe, since I had no bigger seizures while attached to the EEG's it makes sense that nothing bigger was caught on the EEG's.
Last edited: