Temporal Lobe Epilepsy

[afbnegx3]

I'm a 40 yr old female, I had my first migraine and sleep paralysis w/ night terrors around age 12. I continued to get these symptoms ocassionally, and they increased in frequency in my 20s. But for the past two years, the headaches have become unbearable, usually before my period, but not always. I also smell things that aren't there and have subtle trouble remembering things. I've tried imitrex without success. I now use maxalt but get a lot of rebound headaches and take too many pills. My neurologist is afraid of the cardiac side-effects but I cannot function without these pills. I just started verapamil as preventative treatment. She thinks I might have menstrual migraines but also mentioned the possiblilty of me having petit mal seizures. I laughed at her, but now I'm starting to wonder about it. I read somewhere that Temporal Lobe Epilepsy (TLE) can cause my symptoms. I had a negative brain MRI in Jan 2006. I'm out of the country until December and was wondering if TLE is easy to diagnose. Would an EEG pick up TLE? Do I need sleep studies? I read that an MRI may not show TLE lesions. I would have to pay cash (no insurance) so I want to make sure I spend my money wisely. Thanks.

[CCF-Neuro-M.D.-SH]

First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
   The symptoms you describe are most consistent with migraine headaches, but I would recommend testing to evaluate for temopral lobe epilepsy (less likely).  Temporal lobe epilepsy (TLE) does sometimes present with and aura of smelling things and is associated with memory problems.  However, TLE is rarely associated with headaches.  It is possible that you could have both TLE and migraines.  
   To test for TLE I would recommend an EEG.  However, the EEG is most helpful if you have a spell (such as one of your smells) while hooked up to the EEG.  
   As far as your migraines people with menstrual related migraines are often helped by long-acting triptans such as Frova and Amerge.  These can be taken for the 3-5 days around your period to stop a migraine from occuring.  A migraine preventative medication is a good idea, but many times patients need to try 2-4 medications before they find the right one for them.  Others include elavil, nadolol, topamax, neurontin, lyrica, etc.
I hope this was helpful.

[cheery]

Wow, you have very similar symptoms to mine! I also have suffered from sleep paralysis for a long time. About 1.5 yrs ago I started smelling things that aren't there- mostly when I am very tired and about to fall asleep (tho sometimes I wake up in the middle of the night smelling things). I do not have the headaches, tho (thankfully). I had an eeg and the results said left temporal lobe slowing when drowsy- but I still don't have a diagnosis. Does anyone know if there is anything they could do for partial seizures anyway? Just knowing the cause would be nice though.

Take care and I hope you get some answers!

[constant fear]

I have temporal lobe epilepsy.  I also have 3 other kinds, there are about 30 different types of seizures and only a specialist usually can pick up temporal lobe seizures on an EEG.  It was an adult onset.  The scary thing about temporal lobe is the fact you can be functioning and never know you had or are having a seizure.  It's a behavioral type seizure.  Jack Ruby got off from killing Lee Harvey Oswald because the defense was he was having a temporal lobe seizure.  I would go charge things and never remember going shopping.   I now take medication for it and it is under control, Thank God.  Now my neuropathy is a totally different game.  I have lost use of extremeties.  They wanted to amputate my left leg from the knee down, but with hard work and determination, I got the leg to work again.  Not anymore.  I will lose use of my hands with no warning, same with both legs.  Something new has started.  I've had a headache for 5 straight days and loss of vision randomly.  I drop things, I fall, I get confused, a large part of my head and face are totally numb at all times.  I am a 36 year old female, had my first heart attack at 28 and now have a pacemaker and 3 stents in my heart.  I don't know how to deal with all of this and my fear is it's gone into the brain.  I truly live in constant fear.  Am I going to fall down the stairs?  Am I going to have another heart attack?  The pain in my back and actually almost everywhere is excrutiating.  I take Morphine just so I can get out of bed.  I apologize for getting off track.  I was having many black outs and found they were caused from temporal lobe seizures.  I hope they catch it in time for you.

[jan]

Petit Mals are generalized seizures known now as absence seizures.  TLE consists are partial seizures.  It could be though that your dr. meant a partial seizure and used the wrong term.  Mine did exactly that just a few weeks ago, but I know seizure term. and such having been diag. with TLE.

I gave this site out before, but it had crashed.  It's up again and it is for epilepsy, but there aren't drs. to ask questions, just people with E.  It is a very nice forum.

http://brain.hastypastry.net/forums/forumdisplay.php?f=144

[ro13]

I was diagnosed just 5 years ago with TLE after finally having a grand mal seizure.  Most would be upset with the news but I was happy.  I kept a diary of my menstrual periods during high school because I thought one day someone would believe me and not think I was just a crybaby trying to get out of work and school because her periods.  They consisted of extreme headaches; sleep episodes where I never thought I would wake again and finally an obnoxious smell.  Memory loss was frequent.    My self-esteem was low; I never could remember anything especially at that time of the month.  (This was the joke of the family) I would be standing talking to someone and not even hear what he or she had to say.  I called in sick to work and school.  So when, 14 years later I had a grand mal my little diary came in handy.    From the EEG I was semi-diagnosed.  I have tendencies, but will not completely diagnoses.     After four years, on medicine my doctor told me that I could get off the medicine, because these cases can be TEMPORAY.  However, I declined.  I am currently on Limictal, but whatever the doctor recommends, I do not claim to be a doctor all I can say what works for me.

[karib]

Sensations  of being out of body are also associated with TLE. After the smell aura and weird emotional sensations  at onset, I was diagnosed because of my symptoms even while EEG was unable to capture it. 10 years ago the neurologist was going to put me on Tegratol but explained  that  I would lose driving privelege. Read a book called Seized by Eve La Plant about living with episodes as part of being a creative individual. Rather than taking seizure medication I used Klonopin to treat seizure disorder at onset. It worked and I have very rarely had episodes.
There are alternatives to medicine.

[justdiagnosed]

Well I started with migraine headaches about 8 years ago and now I've built myself up now to about 2-3 migraines per week.  I had my first grand mal seizure one year ago Nov. 1, 2005.  Just this past Oct. 14, I was taken to the hospital by ambulance having a seizure and was admitted to the hospital.  They ran a bunch of tests one of which was an MRI and I was diagnosed with arteriovenous malformation left temporal lobe and since then I have been having seizures regularly 1 sometimes 2 per week.  I am on Tegretol and Topamax.  I am to go to Pittsburgh to a Seizure Specialist this week and next week to a Neurosurgeon.  I'm still getting the migraines regularly.  The Neurologist whom I am seeing in town says that the migraines are not related to the AVM.  Along with all of this I have diabetes and fibromyalgia, restless legs syndrome.
Also on the MRI report was a finding of periventricular leukoencephalomalacia disease whatever that is I'm not sure.  The Neurologist didn't mention that.  So I am very anxious and nervous about this doctor's appointment.

Thanks for listening.

Lori in New Castle.

[JP23]

I've been suffering De Ja Vu's for as long as i can remember, but lately they've become far more frequent and associated with strong feelings of fear. As well as these symptoms i have had instances of phantom smells, and a general feeling of familiarity shrouding my day to day life (and before you ask, no, i don't think it's quite *that* monotonous). Temporal Lobe Epilepsy was a disorder that has popped up as a query in the past, but i've never had a grand mal seizure. I must reiterate, i do associate the De Ja Vu with a strong, mortal fear. Does this sound a neurological condition or is perhaps psych the avenue i should be taking for treatment?

Cheers, J.P.