Does Temporal Lobe Epilepsy cause Headache?

[aurora2000]

Does temporal lobe epilepsy cause head pain?  Does it mimick or can it be confused for migraine pain?  Does it or can it co-exist with migraine pain?

I would appreciate first-hand accounts of head pain from those who suffer from temporal lobe epilepsy (TLE), please describe your symptoms if you can esp. head pain, it would be very helpful to me.  (for example, is the pain stabbing or pounding, or short or of long duration....)

More questions (most interested in first-hand accounts):
-does TLE reliably show up on EEG?
-what medicines or combinations of medicines are used to treat TLE, and dosages?
-if you have been diagnosed, what was your process like? (I am still seeking answers.)

thanking you all in advance for your help,
aurora

[medco]

hi, i have TLE. some seizures can be confused with migraines and vice versa, particularly simple partial seizures (e.g. visual distortions). some people have both TLE and migraines. but the TLE itself shouldn't really cause headaches. i probably have more headaches than others because of the stress accompanied by the TLE.

TLE may show up on an EEG, but it may not.

i'm taking tegretol. it's been quite effective - the only downside is the constant feeling of tiredness.

when first diagnosed, i was given a CT, EEG, MRI, and halt monitor test. all came back normal. then i had another seizure, and went through all the tests again (save the halt monitor). the EEG showed some brain activity that was characteristic of TLE, and i was diagnosed with the disorder.

[loriann12]

I'm in the process of diagnosis, so I'm not really sure my answer is what you need, but I'll give it a shot.  I got the diagnosis yesterday of temporal lobe seizure disorder, not officially epilepsy (but I understand that's just a technicality, they just sugar coat it now).  I also get migraines, but the pain I get when I get a seizure is totally different than a migraine.  It's more of a pain like something trying to burst out of my head, like something is bigger than my head and doesn't fit, a steady pressure, but not like sinus, like the opposite of a vise pressing in.  My migraines are more of a pounding, pulsing pain like a heart beat, while the pain after a seizure is more constant, not like a heart beat. My husband joking says Alien is bursting out....

My seizures were diagnosed after an MRI, and then differentiated from migraines with a 48 hour EEG.  I was having break through seizures even on 100 mg of topamax a day.  They said they were coming from the occipital lobe, but after having 4 just this past weekend on 200 mg of topamax, and seeing my neurologist yesterday and explaining the symptoms, he said they're coming from the temporal lobe, and he's raising my dose of topamax to eventually reach 400 mg.  So basically, I'm not under control yet.  I may try tegretol, like medco, if topamax doesn't work.  So far, I only seem to lose a couple seconds.  Saturday I had an absence seizure around my husband.....he said I was gone a couple seconds and I missed what he said so I guess that qualifies as a complex partial seizure?  I'm new to this, too, but I do know that I do have classic migraines, and what I was having was different than my classic migraines, which made me look deeper.  If I hadn't had classic migraines, it could have been confused for a migraine, because they have tried to tell me it's just a different kind of migraine, and I know in my soul it's not.

[aurora2000]

When you guys had your EEG's, were you on meds, or off?

Also, do you experience any motor seizures with TLE, or mainly psychic/perceptual seizures?

many thanks for your responses, you are being extremely helpful and informative,
aurora

[deedle1976]

It can definitely cause headaches no matter what the doctors say. I think this is due to increased blood flow and vascular dilation to meet the increased metabolic needs of the hyperactive areas. I got daily headaches when my TLE was uncontrolled. The headaches were pulsating and sharp. The epilepsy was incorrectly diagnosed as atypical migraine as I had numbness down one side.
My first EEG was normal but then I had a sleep deprived EEG on which the abnormalities showed up. (You have to stay awake the night before.The sleep deprivation stresses the brain a bit which can unmask abnormalities. )I was then diagnosed and put on meds. I was having about 20 seizures a day before this but they were gone after a week on meds. The headaches disapeared with the seizures.
The TLE was fully controlled on lamotrigine which I took for 3 1/2 years before weaning off. I then took nothing for 6 years. Unfortunately I started having symptoms again after childbirth and now back on meds.  
I think if you are on meds and you seizures are under control the eeg is less likely to show abnormalities but I'm not 100% sure on that one.
My seizures involved the temporal lobes and the parietal lobes. Symptoms were a suddon feeling of impending doom, derealization, confusion, difficulty understanding language. This was accompanied by numbness in the right hand, arm and side of face. The sensory symptoms were from the parietal lobe.

[loriann12]

My EEG was on meds, but a low dose because they thought everything was due to migraines, not seizures.  Turns out they're now saying it's both.  I'm saying it's seizures and NOT migraines.  I know what migraines feel like and these are not them.  I've never had numbness with a migraine.  Mine are mostly psychic/perceptual seizures and not motor as far as I don't shake or have twitches.  I do get extremely weak sometimes and have to sit down, or lie down.  I almost fell down the stairs today.  Usually the headaches only last as long as the sleepiness, which is the 20-30 minutes of the episode.  The actual "seizure" is only a couple minutes.  The episode includes the sleepiness and lasts the whole 20-30 minutes.  I've been told mine include the temporal and occipital lobes.

[aurora2000]

Okay, deedle, your response was very helpful!

In march I had an EEG, at home, no meds, which showed some sharp waves in the right parietal area every time I had my "foot spasms".  These are the spasms of the right big toe or right foot (rarely whole right leg) which have been waking me out of sleep since February and which have made me seek a diagnosis of seizure.  For the past six years or so, I have had a sense of numbness/ weakness in that same right leg and sometimes my right arm during headache episodes.  Because of the bad headaches I have been having for the past six years and the weakness on one side, the doctors told me it was hemiplegic migraines.  However, I have also been having many psychic/perceptual symptoms (many of which I do not share with doctors for fear of being misinterpreted as having an emotional or psychiatric disorder) which is why I do not feel I have been having only migraines.

I am only just now getting the courage to start sharing these symptoms with doctors.  I have many of the behavioral changes associated with TLE such as having had an experience of meeting God and Divine Union, which made me convert my religion and become very centered on Jesus Christ (all of this from a terrible headache experience) and I have visions of geometric patterns which I feel compelled to draw for many hours each day, both to calm myself and to impart important information to people here on earth.  At my most confused state, immediately after my conversion experience, I felt I was in the afterlife (sometimes Heaven, sometimes Hell) and I became homeless because my math and cognitive skills had been severely disrupted and I put myself in faith in Jesus's hands to lead me "on assignment" to where I needed to go to do His work, knowing that He would take care of me and lead me through.

My life is different now.  I have worked hard to "sort through" what is real and what is false.  I have had to learn, through trial and error, that I am indeed on earth and alive, not in an after life at all, and have had many friends and family members tell me and remind me of that.  However, after some "episodes" (since I have not officially found out whether they are seizures yet?) I would have convulsions then return to the deep-seated knowledge that I was dead and experiencing my afterlife.

Even two nights ago, I experienced a seizure of my left arm, and immediately afterward had a vision of Jesus with his hand outstretched to me.  This is, somewhat difficult to talk about, because, I am even a little bit used to having visions and interacting with Jesus and my spirit guides, and have been interacting with them for so many years now, it feels normal and I do not consider it to be a negative or pathological symptom at all.  It is a very new way of thinking to me, to even consider that it may be connected to a disease, instead of to my Lord and my religion.

However, I will say that at the same time I have been feeling very sick with massive head pain.  If it is migraines brought on by seizures or if it is head pain associated with seizures or whatever, I can tell you that at times I have so much head pounding that I cannot lie down to sleep, and I know that no Diety wants me to suffer like that.  When I go to doctors, I tell them about the physical symptoms I experience, like head pain, nausea, sensitivity to smells and sounds and numbness down my leg or my leg spasms in the night, but I have not always told the doctors about seeing geometric visions and feeling Jesus's arms around me and feeling angels comforting me in the darkest times, because I am afraid that doctors would presume a psychiatric disorder (as several of my family members have.  It has been an uphill battle with those family members, and basically, I have just learned to keep certain aspects of my experiences "confidential" for my own good.)

Thank you for letting me be this honest.

That being said, I live in upstate New York in the Hudson Valley and I am under the care of a neurologist (who's pretty good) but I am seeking the care of a specialist in epilepsy, specifically Temporal Lobe Epilepsy, so that when I tell them my story they won't presume an emotional or psychiatric problem or just laugh me right out of their expensive office.

Do any of you have a recommendation?

many thanks, Aurora

P.S.  My most recent EEG in June was in hospital video and was on meds (topamax 200 mg) but did not show signs of seizures.  The doctor who read it wrote in his report that it did not rule out seizures, just that it did not confirm a diagnosis.  I was trying to figure out what went "wrong", or if I should have lobbied to be off meds for that EEG, or if TL seizures don't show on EEG's.

[medco]

these afterlife and religious episodes that you have where you feel like you're im heaven or hell or see Jesus - how long do they last?

[aurora2000]

When I saw Jesus two nights ago it lasted for a second and I am now somewhat skeptical of what I am experiencing, so my feelings afterward were less strong, and I am also on 250 mg of topamax.  I am still a Christian, however, I no longer believe that I am in my afterlife.

Here's the best way I can explain it:  certain ways of thinking are a "slippery slope" for me, like "bad mental territory", for example, thinking that I'm a dead person, so I stay away from that whole line of thinking.  I have had to practice learning to think that "I am an alive person" to counteract the feelings that I was a dead person that came from the time in 2004 when I was homeless and had very poor nutrition and had head shaking episodes where my head would shake for about thirty seconds up and down then afterward I would feel like I was in heaven and the feeling would last for quite some time (hours, even days).  Even after the feeling would fade, I would still have the set of beliefs constructed around it that didn't fade, and so I would still act and behave as if I were a 'dead person' even to the point of literally going up to people and saying, "Hi, my name is Aurora, and I am a Dead Person!"

In the past three years, I have put my life back together, learned to keep my religous thoughts confidential, worked steadily at my full time job as a custom framer until head pain has made it impossible to continue and I am now on temporary medical leave, and my "unusual perceptions" are limited to talking with my spirit guides and Jesus and receiving geometric visions which I paint and draw 'compulsively' (a lot) and smelling through my fingertips.

[aurora2000]

In re-reading my post, I realized that I had to clarify exactly what the feeling is that I experienced as part of the after-effect of the experience.  It is not necessarily a "good" or "euophoric" feeling of oneness, far from it, sometimes it was a negative experience.

The best term I have come across to describe it is "enlightened feelings", and a term I made up for it just now is "behind-the-scenes knowledge".  For me, the "behind-the-scenes knowledge" on the director's cut of reality that I was watching was that I was actually dead, having gone through my near-death experience and divine union in 2001 in another 'episode', and that everyone around me was actually Angels and Jesus playing different parts or speaking through different people and that everything I saw, no matter how familiar, was actually a cunning reproduction in Heaven's waiting room.  Whenever I had a shaking episode, the feeling of being a "dead person" would return strongly, and the sense that I was in a special relationship with Jesus, and that no matter how confusing or painful it all seemed to hang on and have faith and it would all be revealed at some point.  

(If you have ever had a dream where you "just knew" something in the dream, like you were looking for a purple sock and you "just knew" you were looking for it, nobody told you about it in the dream, that is the best metaphor I can give you for "behind-the-scenes knowledge".  It feels like you "just know" on a very deep level.)

[medco]

interesting. perhaps you've generalized these episodes that you've had of seeing Jesus and thinking you're in the afterlife, so much so, that it has become chronic condition. i believe this generalization happens sometimes with those who experience feelings of depersonalization or derealization when having a seizure.