Not Sure If Epileptic Or Not

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Hey, I'm Ashley. Found this forum in researching temporal lobe epilepsy. I strongly suspect that I have it, but I haven't gone to a neurologist yet and it may take some time before I can. For a while now I've been pretty sure that I've at least had auras. When I was a kid, I had this quite often, especially when laying down to sleep. The best way I can describe it is this sudden slip into this weird mindset where everything I see or feel in my mind or "mind's eye" is suddenly far away, along with this almost disembodied sense of vastness or enormity. And with this sensation, I'll also get some anxiety because it just feels wrong. Usually doesn't last long, but I've had it linger for several minutes before. I don't experience this very often anymore but probably have at least once or twice in the past year. However, I've also dealt with other things that I think are related, like depersonalization/derealization (which can get bad at times), some anxiety and depression, and I also have other temporal lobe conditions like synesthesia and auditory processing disorder. And I'm starting to wonder if I experience absence seizures, but it's hard to tell. There are plenty of times where I do space out, like my mind has just gone blank and I'm just treading water. Or even more common, I'll sometimes pause briefly in a conversation and struggle to remember what I was talking about or going to say, so I talk in circles hoping to spiral back to my point. Very frustrating. In fact, I do that quite often, losing my train of thought. Sometimes when I'm web-browsing, I'll just automatically go to sites or open up google, or open a tab and just not know what I'm doing or was going to do. Just not sure how to tell if this is just a poor attention span, concentration, and memory or if it could be bouts of epilepsy. I guess since nobody can really diagnose me right now, maybe some of this stuff will click for someone and I can at least get some support. I'm sure some coping strategies or even just reading about similar stories would help me.

Comments

I've learned a ton of

Submitted by Roald on Tue, 2017-04-18 - 20:20

I've learned a ton of information on this website! I've been experiencing seizures since a MVA hit and run in 2013. I am still in the process of getting a proper diagnosis 4 years later and have seen many specialists and diagnostic tests etc. and I am finally starting to get some answers. One thing I will say is it is hard to get Drs to believe you are having seizures or diagnosis you unless you have something abnormal on an EEG test or have a seizure directly Infront of them. There are many kinds of seizures and they want to be sure what kind without just saying that you have seizures. In some ways this is good because it can prevent you from getting unnecessary Rx's but it can also be frustrating to have a severe nagging medical problem linger undiagnosed. Some Drs will just start throwing Rx's at you too on the other hand if you're not careful. One issue for me was that I only considered "grand Mal" tonic clonic convulsive black out collapse on the floor "seizures" which I have had many but I never counted my "auras" as seizures, only as premonitions or deja Vu of an impending seizure or the feeling of a seizure starting but not an actual "seizure" itself even though they progressed to generalized seizures. These were/are my focal seizures in my right temple. So I had many other seizures along the way but I only counted the times I woke up in the ER after having generalized status seizures as my "seizures". This is what I think most people think of when they think "seizure" and many can go undiagnosed. This is also hard to show/demonstrate/prove seizure disorders to Drs or on diagnostic machines on demand to get some better idea of what is going on during your set appointment time. See if you can take a video EEG test for several days like 4 or 5. Even with that amount of time you are still "lucky" if they are able to capture and record abnormal brain activity. I know that sounds messed up. When I first learned about those tests and was recommended to have them done they scared the sh*t out of me and I thought you had to be crazy to volunteer to do one, but they actually aren't that bad, the staff are very nice and understanding, and if you are going to have a seizure that is the best place to have one. The long term video EEG tests have given me and my treating Drs the most valuable information about my epilepsy.

WrongAll that is necessary to

Submitted by just_joe on Fri, 2017-04-21 - 13:00

WrongAll that is necessary to diagnose epilepsy is 2 seizures that are known

A lot of what you write about

Submitted by Exlibris on Sun, 2017-04-30 - 19:15

A lot of what you write about sounds like my experiences. I wasn't diagnosed until my twenties, my useless school knew something was wrong but only made a token effect to find out what then forgot about it. It meant I grew up missing vital social cues, which I've had to learn later in life. Does that sound familiar? Also, do you have gloriously vivid and creative dreams?I was only persuaded to go to the doctor when one of my fellow uni students told me off for cycling through a red light at a busy crossroads during rush hour....I had no recollection I'd done that. I could have been killed. Get down to you doctor and tell her what you've experienced. They'll send you for an EEG which is NOT a bad experience, don't be worried about it. Tablets can eventually control epilepsy (depends on the person) and at the very least make things so much better. Not taking action could mean that a blank at an inopportune moment could have serious consequences - for example, do you drive?I know how intimidating it is going to the doctor about this, you feel like you're going to be laughed at because you've never had the type of seizures everyone associates with epilepsy. She won't. When I got diagnosed I actually found I was very happy - all my life I'd been labelled as 'slow' and 'a bit of a dreamer'. Nope, it was just epilepsy.Good luck.