Did anyone think they were crazy prior to diagnosis?

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I haven't been diagnosed yet, but I am hoping for a Temporal Lobe Epilepsy diagnosis. I know it may sound like a strange thing to hope for, but I am just hoping there is an explanation to what happens to me.

Anyway, I am wondering if any of you thought you had a psychological or mental health problem prior to your diagnoses? I have paranoid/angry/depressed/anxious symptoms that have had me diagnosed with different mental illnesses. When my dejavu episodes started, I thought I was really really insane. But now I am wondering if all of this could be connected to epilepsy.

I have my sleep deprived EEG this week. My greatest fear is that nothing shows on it.
 
popcorn said:
I have my sleep deprived EEG this week. My greatest fear is that nothing shows on it.
Click to expand...

Epilepsy has been confused with mental illness, but most of that is thankfully in the past.

Be prepared, though. Depending on your condition, if no seizure-related activity is going on at the time there may not be a sign in your EEG. That's common and it doesn't mean you don't have seizures.

Your relationship with your doctor is what's critical. If there is nothing abnormal about your EEG, they should still trust you.
 
Yes. My experience is very similar to yours, and I went on to be diagnosed with temporal lobe epilepsy. I didn't have deja vu, but a lot of others things which led to it being treated as mental health issues before they ran some 'routine' tests and figured something else might be happening.

Mine was found on a sleep deprived EEG - the first time they said it was a 'red herring' then they did another one, and boom. They sent me to see a neurologist - suddenly a lot of what had been happening to me made sense.
 
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I was having olfactory hallucinations for years before developing TCs. I thought I was developing some sort of psychosis. All my GPs over the years just shrugged when I bought it up, which I thought was weird because I too have had mental health issues over the years. I've been diagnosed with both temporal lobe epilepsy AND psychogenic seizures. I have been questioning my sanity for years.
 
feeling crazy

I'm liking this board the more i read, finaly reading what others like me face on a daily basis.Wow, not that E is cool, it's not but it does help knowing i'm not alone. I can remember before i was diagnosed, i saw what i called dancing lights in my bedroom at night, sometimes they were white, sometimes its blue flashes, and i figured someone like a roomie was messing with me, it made me a little paranoid, i'd hear people talking when i was sleeping or trying to sleep,i'd get tunnel vision and it sounded like a freight train was in my room.. sometimes I try and stand up only to fall and hurt myself on the way down, almost 9yrs ago I had a gran mal while at a superbowl party(i was later told i was the hit of the party) i seized, bit my tongue & i had blood streamiing out of my mouth I woke up with several paramedics asking me questions i couldn't answer, then I was in a ambulance racing with lights and sirens blaring on the way to the hospital....my memory was fuzzy for a few weeks after that incident, i'd have family visit, their faces were familiar, but i could not remember who they were...now i've been having a lot of seizures, the meds, their side effects have their own set of problems, CRAZY, who me?
 
Our 8 year old son has temporal lobe epilepsy, and he also has some psychotic behavior. The behavior waxes and wanes, depending on whether he's having a lot of seizures, or is in a seizure free state. During the periods where he's been seizure free for months on end, we don't see the psychotic behavior. When he's having lots of seizures, the behavior gets worse.

When he was on one medication (Trileptal) he got really really bad, and then got better when he was weaned off. But he has exhibited "insane" behavior even when not on any meds at all, which leads me to conclude that his psychosis is related to the seizures themselves, but for some reason, that one med aggravated it.

Actually, his neurologist is thinking that his psychotic behavior is probably a type of seizure in and of itself, and Jon will be having a video EEG this weekend to check out that theory.

Types of psychosis we are noting:
1) Violence (in a normally sweet, laid back, affectionate child) -- right now he's doing a lot of scratching and pinching. He's also been known to hit, pull hair, yank glasses off someone's face, kick, etc.

2) Hissing and growling

3) A type of manic behavior involving giggling for hours (when nothing is funny) and/or super hyper-activity, coupled with insomnia.

4) Self-harming -- banging his head against the wall

5) After a tonic seizure, he will lie still for about 1 minute, as he recovers and gets his breath back. Then, suddenly, he will jerk all his limbs and leap up. He'll then lunge forward with no thought to safety. Sometimes he'll jump up and start running and dancing around, but his balance is all off, and he's running into things. Last week, he jumped up and ran into a closed door full speed.
 
It took me years to get a diagnosis. I went to a few dr's in my area & they all thought I
was imagining things. Not one of them did any testing. I finally got so sick my DH took me to a dr in another state & after an MRI I was diagnosed with temporal lobe seizures. I think the first question the dr asked was did I ever have Dejavu. I have also had a brain injury. The dr's here had me convinced that I was a mental case. Don't give up.
 
I grew up with regular deja vue and this olfactory SP that felt like water rushing up my nose. I just thought these things happened to everyone. Once in little league I took a baseball to the eye. One the way to the doctors all the house looked tiny, almost as doll houses. My epileptologist said the injury did not cause my E but might has excited some neurons at that moment. I always loved reflecting on those experiences as a kid.

When I was in my 20’s before my first TC, while listening to music my brain would tell me I was hearing someone singing even though it was an instrumental section. I equated it to have too much youthful fun. 6-12 months later I had a TC at the office and in the following days these mysteries were answered. I still remember the neurologists first words were, “have you recently become very religious” and I though “WHAT TYPE OF QUESTION IS THAT!?!?!”. I chuckle looking back on that. :)


KarenB said:
After a tonic seizure, he will lie still for about 1 minute, as he recovers and gets his breath back. Then, suddenly, he will jerk all his limbs and leap up. He'll then lunge forward with no thought to safety. Sometimes he'll jump up and start running and dancing around, but his balance is all off, and he's running into things.
Click to expand...

After my first TC when I was postical, I apparently shot out of my chair ran a few laps around the office, flung my shoes off, battled two coworkers and jumped over a cubical (I really wish I was there to see it!). At that point my limbic system was in control and it was all fight or flight. After my second TC, I fought a bunch of fire fighter, emts and police because I nauseas and wouldn’t lie down in the ambulance. Your son is in good company which I’m sure you are seeing as you read through the threads. If you haven’t yet, look up postical and interictal states. Hopefully it will shed some light on some of his behaviors…. And best of luck!!
 
I think i was pretty lucky in the respect that i was diagnosed with Epilepsy straight away.

I mean that was bad enough, and i still felt depressed about it, but i don't think i could have coped with years of being told i have a mental illness.
 
Wow, P-Funk -- your behavior after your first tonic clonic sounds so much like Jon!

I have been looking up the postictal and interictal states, but it all says that the psychosis usually happens a few hours or even a few days AFTER the seizure. But Jon gets "crazy" just as he's coming out of the seizure. Usually, if it's a tonic clonic, he's too wiped out to do anything, but the tonics allow him enough energy to go nuts. And that's becoming the scariest part of the seizures - we've had to put his mattress down on the floor, because I'm afraid he'll throw himself out of the bed and on to the hard tile floor (most of his seizures are at night), and also afraid he'll jump up and run into something and injure himself.
 
I noticed a connection between my seizures and uncontrollable emotions and a type of paranoia. I felt easily slighted one Friday morning and had two seizures an hour upon waking. I slept that day, but the next two days I was so upset and angry and I felt like everyone was hurting me on purpose. A total nightmare.

Before thinking there was a link, I have been trying to find out why I have these emotional times that I cannot connect to food or hormonal cycles.
 
I felt like I was losing my mind many times before I ever had a seizure. Certain drugs I took for depression was like gasoline on a fire. Long road before the seizures were treated and things were kind of under control. Though, I don't discourage anti-depressants or other drugs that can alleviate emotional stress. They can work really well for some. Just never feel alone, or that you are totally lost. I've said this a good amount of times, but the people on here are amazing.
 
Yes, they are -- a great source of comfort and encouragement.
 
popcorn said:
I haven't been diagnosed yet, but I am hoping for a Temporal Lobe Epilepsy diagnosis. I know it may sound like a strange thing to hope for, but I am just hoping there is an explanation to what happens to me.

Anyway, I am wondering if any of you thought you had a psychological or mental health problem prior to your diagnoses? I have paranoid/angry/depressed/anxious symptoms that have had me diagnosed with different mental illnesses. When my dejavu episodes started, I thought I was really really insane. But now I am wondering if all of this could be connected to epilepsy.

I have my sleep deprived EEG this week. My greatest fear is that nothing shows on it.
Click to expand...

I can so relate. I wasn't diagnosed until I was 20 and I, too, so hoped they'd find something on the EEG. Mine was sleep-deprived, but they also used nasopharyngeal leads (don't know if they do that anymore, but it's the only way they can detect my seizure activity), which essentially made the diagnosis.

I was experiencing all sorts of stuff - jamais vu (the opposite of deja vu), auditory hallucinations, visual hallucinations, feelings of fear - it went on and on. I was relieved with the temporal lobe diagnosis, because I finally had something to explain all the odd sensations.

Now, 31 years later, I'm still grateful for the diagnosis, but I've learned a whole lot since those first days. I'm very careful about choosing neurologists and plan my visits very carefully. 'Cause it seems that, even with the diagnosis, there is still the tendency to rely too heavily on physical tests to determine whether a patient is "really" having a seizure, or if the symptom is psychological. I've had countless symptoms that were eliminated by meds but, because I didn't show seizure activity on an EEG, my neurologist said they were psychological.

I wish you well in your journey. This seems to be a great place to come, to be, and to share. Hope to chat with you more here.
 
popcorn said:
I noticed a connection between my seizures and uncontrollable emotions and a type of paranoia. I felt easily slighted one Friday morning and had two seizures an hour upon waking. I slept that day, but the next two days I was so upset and angry and I felt like everyone was hurting me on purpose. A total nightmare.

Before thinking there was a link, I have been trying to find out why I have these emotional times that I cannot connect to food or hormonal cycles.
Click to expand...

My emotions are strange before a seizure too, though I never noticed the link until a couple weeks ago when I was feeling really depressed for no good reason. I was anxious, had a pit in my stomach, and wanted to throw something. I also had a really weird desire to be self-destructive. For example I wanted to go get wasted (I didn't), and I made myself run twice in one day, and didn't care that it was really hot outside (though I did bring water!), and just wanted to run until I was too tired to feel anything. Normally that is not the reason I run. For the next two days I had several strong partial seizures. After the seizures my mood was weird again. Then I went back to feeling normal with no seizure activity. Actually, now that I think about it, I have had those self-destructive and depressed feelings before for no good reason, but I had no diagnosis. I've always wondered how long my epilepsy has been going on, and I wonder if some of my old mood swings were at all related to epilepsy.
 
If you're not doing so already, you might want to keep a log of your seizure activity, and then in a parallel column, list any strange mood swings, self-destructive urges, etc. Then you could take that to your next visit to the neurologist to discuss.

Jon's having an overnight video EEG tomorrow night to see if his self-destructive and manic behavior is actually a part of the seizure or part of the post-ictal period or what (basically, his neurologist wants to see what's going on when he has this behavior).
 
On one hand, I am sorry to hear of so many who suffer from these symptoms. But on the other hand, it gives me hope to know that I am not alone.

Sleep deprived EEG tomorrow. It's almost 11pm. Test is at 10am.
 
absolutely!! i was totally ignored by the first neurologist for 6 months. my husband and i were so frustrated that he would not listen to us. i had the usual test that were negative even though i had suffered a tonic clonic seizures that were witnessed and we kept a diary of all of my episodes since that period of time i do not recall. i had to have someone with me continously with me while my husband worked because we were not sure if it would happen again. i suffered numerous falls and have periods of time that i was unable to speak and in alot of pain from the seizures. about 6 months after the first one while my husband was at work my daughter wass with me and i had a severe seizure that caused a really bad fall and i broke 3 vertebrae in my back that caused excruiating pain. at the hospital i was unable to speak and the er doc called my husband and he told him what all had been happening and asked for a new neurologist to see me and i was started on keppra that night and had to have my back fused together but i thank god i saw the new doc. in the past 1 1/2 years i have had to be given 3 different meds at the same time to get more control over them before i finally had a seizure that showed up on the eeg. the doc explained alot of people never have them show up because they must happen while the eeg is being given. i have been diagnosed with left temporal lobe epilepsy and may have to have that portion of my brain removed but i finally feel like a weight has been lifted off my back and can get back to a life. i have lost so much time due to memory loss and feel like the first doc played a roll in causing me so much unnecssary pain, injury, and memory loss that i did not have to go through if he would only listen to my husband. i am so thankful to the doc i have now and so relieved to finally have a chance at recovery. my spirits have been lifted so much and feel like i can finally get my life back!!! if this story is like anyone else's please do not give up and if the doc does not listen then find another one that will. i felt so alone but i no longer feel this way since i have found these forums to read other stories and can relate to others that are going through the same things. i am greatful for my new doc and my family for helping me when i could not take care of myself:)
 
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