Temporal Lobe Epilepsy and Ictal Headaches

[morganomics]

Hello everyone, I'm new to coping with epilepsy and I've found myself fitting in with many posts. I'm 27yrs old and I've been in psychiatric treatment for 12yrs for depression, anxiety, and OCD. since 1993-4 when I was 10 I've had sleeping issues that are a bit different than the common sleep disorders associated with depression. My falling asleep in high school actually led towards people giving me nicknames for my inability to stay awake. I also had episodes in college where I'd go into a funny sleep state where my eyes would roll back and I would drool, I'd come to embarrassed with my friends looking on, not knowing if I was joking or what to think. These same friends have told me that during these states I've often times started drawing as if I were conscious. I was surprised to find this out as I didn't even know I did this. My what are believed to be simple partial seizures usually happen when I'm trying to get to bed. I'll have a vibrating feeling on my lips, my hands get clammy and my heart starts to race, and I feel a feeling of euphoria. During these episodes I can say that there is no other feeling in the world that compares even sex to the feelings I get. I feel as though I can understand the language of the universe and I'm one with the world. Sounds new-agey but that is how it feels. I see colors and shapes and they have a feeling that I've always known them. It also feels as if I'm dying and being born at the same time. I only get these episodes about once a month that I can remember, though some of my dreams I suspect might be sleeping auras as I dream of colors having vivid meaning and have qualities of other senses like a color has a taste or texture. The waking episodes only last for a few minutes and vary in intensity. I wish I could have the intense euphoric seizures more often, as I have a headache on the left side of my head and left side only everyday. The feeling is similar to a burn on the skin as it is intense and lasts a long time. It feels like there is broken glass in my head and its poking my head. I can say my cognition, mood and personality are affected. I have a feeling that my thoughts are being forced and it is very uncomfortable and distressing. I've been on tegretol, lamictal, topamax, depakote and gabapentin nothing has worked thus far but I feel the gabapentin might have a slight benefit. I'm supposed to see an epileptologist in early February and I'm praying they'll be able to help my headaches and seizure events. Two psychiatrists unrelated in practice made the diagnosis of Temporal Lobe Epilepsy the second was quite confident and intrigued at my condition. I've been endlessly searching temporal lobe epilepsy on the internet since, and I'm so surprised at how similar my condition is to others with simple-partials. The posts people have written describing their experiences with temporal lobe epilepsy are incredibly valuable as a textbook could never describe the nuances of a simple partial seizure. I've only had one spell were I did go unconscious, and remember feeling the deja vu feeling and as if time had slowed, this was when I was 16 and the psychiatrist thought nothing of it. Dude I fell and went unconscious! Anyways I'll end my long post here and if anybody has any advice I'm open to everything. Thanks.

 

[Nakamova]

Hi morganomics, welcome to CWE!

I don't have TLE (just plain ol' tonic-clonics for me), but a number of people here at CWE do, and can no doubt relate to some of the symptoms you've described. I have had different seizure-related headaches, and dealing with them has involved everything from prevention (minimal caffeine, MSG, or aspartame) to cure (over-the counter pain relievers, curling up in a dark room, drinking lots and lots of water/juice). Others here will chime in with their own remedies and suggestions.

I hope you feel free to explore the forums and archives. You can search for info on a specific topic using the "search" tab at the op.

Best,
Nakamova

 

[nagendra]

Hi,
In your post u said yr thoughts feel 'forced'.Please explain that a bit.Even I feel that way every night.

Warm Regards
Nagendra

 

[morganomics]

forced thoughts

Lets see, I feel that there is a force in my head that compresses my thoughts and feelings until the sort of impulsive OCD thoughts simply freeze and I cannot think or feel clearly. I have images that pass through my head or thoughts and when I'm tired or my headache has flared up they become worse almost like part of my language or self is frozen in my head unable to think or express itself. During intense headaches these thoughts are at their worst and may lead to saying things or phrases to calm the intense intrusive feeling. To use a metaphor, imagine you're thoughts are a car on the highway driving at a comfortable speed and then behind you come semi-trucks tailgating you and forcing you to drive faster until you're out of control. You are aware the whole time things aren't right and you feel pressured by the trucks, but you can simply speed up to avoid their intimidating tactics. During these periods my behavior becomes much more rigid as does my thinking and all I wish to do is sleep. How do your thoughts feel forced? I'm quite curious.

 

[nagendra]

suppose i am thinking about some thing.under normal circumstances, i wud think in a stereotyped way one thought after another.what happens for me is that some thought wud force itself into my awareness even when i am not done finishing my current thought.i wonder why this thought came this fast, i wud hav thought this thought anyway afer this current thought.not only this.i get past memories out of nowhere for 2 to 5 secs.this happens around 10 to 20 times a day.the neuro told me it is sensory focal epilepsy.do u get past memories like this?

 

[Endless]

Hi, Morganomics,

I have TLE. All the different types of seizures boggles my mind. Before my diagnosis I thought I was going crazy. Everyone's seizures are a individual to them, and you may or may not share some seizure types with others (like hallucinations, weird smells, etc.) Especially weird for me is the "Alice in Wonderland" stuff. Objects get REALLY BIG or really small. Time and speed warp. It's all so odd.

Use the search function to find posts on temporal lobe epilepsy. It's near the top of the page. By reading people's posts, you may see even more kinds of temporal lobe seizures that you share.

Have you seen a neurologist yet? It's important to see one, in addition to your psychiatrist. Sometimes there is a cause for seizures, and it's important to rule those out.

It's a good idea to keep a seizure diary. It helps your doctor sort out what's going on with you and whether your meds are right. Here's a thread on the different formats seizure diaries:
http://www.coping-with-epilepsy.com/forums/f23/seizure-journals-10776/

 

[Frink]

Hi Morganomics,
right side TLE here.

I often experience post-ictal and inter-ictal headaches, very intense headaches worse than any hangover I used to get from drinking to much, even my teeth hurt.
I never experience ictal headaches, actually during the seizure (ictal), I feel no physical pain.

I do not feel euphoria, in fact its a sinking, fight or flight feeling of full alarm, "SOMETHING IS WRONG HERE!!! " type of feeling, I often think it must be what dying feels like, with an intense feeling of deja vu.

I experience I very unpleasant smell then taste, it feels like it runs down the back of my throat like a post nasal drip and after the smell becomes a taste I have to swallow to get the taste out of my mouth.

I see people/ faces, lately its been an actor but I can never remember who it is.

I sometimes get the alice in wonderland stuff from time to time.



Hi Nagendra,

I also experience the intrusive, racing thoughts and memory flashes just about daily.

 

[manwithepilepsy]

I have left temporal lobe epilepsy. i also have panoramic memory. My brain nevery stops, it's like having multiple movies running at the same time all the time. I can choose the subjects of the 2 or 3 most important ones to me when I studying something complicated. It gets real old when I am trying to watch the news on the tv. My recall of past event is almost 98% pure. It amazes me at times all the different things that I experence because of epilepsy. I am fortunate that due to the brain ijury, i do not experince normal fear emotion so these things do not scary me in the manner the do most people. I have had wake dreams, the first time it happened I had all ready read about them. Man, that was wierd. For me thoughts are not words but are pictures and videos. The only time my thoughts are words is when I am trying to type or write a letter.

 

[morganomics]

Thank you everyone for your feedback it truly is great to know I'm not alone. To answer some of your questions, I have seen several neurologists and they're always a bit stumped by my symptoms, the last one I saw went ahead and put me on Depakote, but because of not having health insurance at the time I didnt take it, but have in the past for bipolar disorder, which I'm not too sure that I actually have. I'm going to see an Epileptologist and I'm really happy to finally be seeing somebody, I've had neuropsychiatrists just lump me in the psychiatric category, I'll go on an antipsychotic and things really don't change at all. I can say I'm always grounded in reality, except for the bad months when I was taking Topamax. I should start with my diet, I've wondered if the ketonogenic diet might help out, but I don't want to start anything too extreme without the epileptologist being in on the treatment.
My thoughts are in images as well, especially the ocd thoughts, when I become really tired (partial seizures seem to come out of the dark), I also start getting more visual OCD thoughts and sometimes they are really disturbing. My headaches may be pre or post or inter, I'm not too sure as of yet, all I know is I really need to get a handle on these symptoms so I feel I can live independently and function. Like others here my MRIs, EEGs come up empty, but my neuro says that many times TLE isn't evident on the tests.
I can say I'm very musical I can here whole albums vividly as well as images in my head. I have a great visual memory as I can see images from a decade ago, yet my working and short-term memory are really crappy, which makes me look a little slow and frustrates me quite a bit.

Thanks everyone! I'm still interested in how TLE manifests itself in others so continue sharing! How were you all diagnosed and what treatments work best for seizures and other symptoms?

 

[momof3boys]

I have left temporal lobe epilepsy. I was diagnosted when I was 18 months old. Im 29 now. since then, when it comes to seizures, Ive had many different feelings. I have complex partial seizures. When I was younger and into my teen years, right before having a seizure, I would recall seeing this line of people, and then get the feeling as though I was being passed down the line of poeple. It was weird. I still recall that in my mind. As I got older, that went away, but when I do have seizures, I get this weird feeling, like Im not all there right before I have one. I at times will mumble, or jerk on my right side of my body. I look to my right side when Im having a seizure. A few months ago, I had break through seizures when my medication was increased. those seizures, I did fall unconsious. Afterwords, I get a really bad headache and become very tired the rest of the day.