My mother has been doing hard core researching since we found out i have a type of seizure disorder. So she was on the mayo clinic website and found a seizure disorder called temporal lobe epilepsy.

She called me over to the computer and had me read the symptoms and guess what?!?!?! I have almost all of those syptoms. Its scary, anyone out there have temporal lobe epilepsy that can advise me?

Hi again!

Yep, looks like we have alot in common! I've had the "big" seizures many years ago, but my seizures just started up again after 10 seizures and now they have changed. These new ones have me diagnosed with Temporal Lobe Epilepsy. Honestly, I didn't think what you had was hypoglycemia, but you were asking what else it could be. Please get yourself another doctor who specializes in epilepsy. These seizures are treatable with the right medicatication - don't be frightened.

Just something to point out...some doctors don't openly welcome patients who diagnose themselves via the internet, so be sure to focus on your symptoms and your witness statements. Oh, one more thing...thank goodness for moms!

Temporal lobe epilepsy (TLE) can be controlled with the right medication or combination of medications; but from what I've read it can be more difficult to treat than other more incapacitating forms of epilepsy. Certainly true in my siutation as my seizures are still not controlled after 11 months of trying various meds. I'm going to be exploring other options with my neuro.

Anybody experiencing TLE like symptons should see a neuro so all the various tests (MRI, EEG, etc) can be conducted. In the event of a TLE diagnosis it is likley that meds will be prescribed and hopefully you will be one of the majority of such patients whose seizures are thus controlled. Good luck.

How was the diagnosis made? Did it take a long time? How many doctors did you have to go through before the right diagnosis was made?

It only took one doctor. My diagnosis was made immediately through an eeg, as it showed the abnormality in the temporal lobe region of the brain. Mine was showing it was spreading to other regions of the brain, indicating I was on the verge of going into grand mal seizures. I was not having any visible seizures at the time the eeg was taken, and it still showed it was abnormal. For some people, you have to be "lucky" to catch it on an eeg, and for others (like me) it's always there.

Have you decided what you're going to do?

i am going to go to another doctor and have the recent doc transfer me to someone else.

I hope you get some answers that explain what's going on. Please post back after your appt. Good luck.

i have a doctors appointment on moday the 28th!!! to see what up. -update

Glad you were able to get an appt. so quickly. Start making a list of questions now so you can be prepared. Hope you get some answers as to what's going on. Please post back after your appt. Good luck.

Well, I went to the doctor, and still... nothing. I cant believe it, no one can figure it out. My doctor has a whole team of doctors working on my case... and still nothing. How can this be? How am I supposed to live a normal life not knowing what is wrong with me? Not knowing when the next one is going to come, not knowing when I am going to go rigid, and have so much trouble breathing, causing my lips to turn blue.... I'll get through it though.... I am strong...

Did the doctor give you any indication as to what it might be? Did he mention stress/anxiety may be the cause? Did he mention it could be a pseudoseizure? What did he say?

Well he did mention that it could be stress and/or anxiety and he refered me to two different doctors a psychologist and a psychiatrist and they both did separate evaluations and neither of them thought that they were pseudo or stress/anxiety related. So they told me that it could be epilepsy but not caught at the "right" time. Now what? I'm only 19 I dont need to be going through this!!! I have a full life ahead of me. College, the medical field.

I know you don't "want" to have epilepsy, you're just looking for some answers. Have you had any incidents lately? I know they tested your sugar level, but from what I remember, you only tested it for diabetes. Consider testing for hypogycemia - low blood sugar. I started out fainting everyday and this was my first diagnosis. Just something to consider.

You also mention that you had a veeg done. How long were you in the hospital for? Mine took almost a full week to get me to seize. Maybe you didn't give it enough time to show up? Did you feel you had any episodes while an eeg or the veeg was being done? If so, then there's a good chance that it would have been picked up on a recording.

Have you had any episodes recently? Do you think it could possibly be related to stress? I had a seizure in college and was taken out by ambulance. The environment and workload can definitely be stressful. The summer is coming and if you don't have school to contend with, you could use it as a guide to see if your occurences lessen. It's not very scientific, but it's a thought.

Follow your heart. I hope you get some answers and relief from this. Any idea what you'll do next?

i am not recently in school because of the fact of these episodes. i have had episodes recently well one over the past week or two. i have no clue what i will do next. someone had said something along the lines of my heart or something?... ever heard of such? both of my doctors have ruled out stress... even while i was in school.... i dont understand... my blood pressure shoots up to like 140/80 and my blood oxygen level shoots down to like 70 and the ER doctor said that it is phenomenal how my pupils dont pinpoint when a flashlight is shined into them. i dunno what to think. you??

Did you have a tilt test done?

Guess not.... What is it? There have got to be some answers for me out there. This is almost like the shows mystery diagnosis and diagnosis x. What i dont understand though, is how this neurologist got to be #5 in the states?

A tilt table test is a test used when patients have a drop in blood pressure. People who experience dizziness, fainting or sudden changes in blood pressure or heart rate should have this test done. This type of fainting is either called vasovagal syncope or neurocardiogenic syncope (same thing).

The table tilts to all different angles and your heart rate, oxygen level and blood pressure are carefully monitored. Ironically, stress, dehydration and standing for long periods can slow the heartrate, causing a sudden drop in bloodpressure, which leads to fainting.

Being that your oxygen level shoots down and your pupils don't dilate was the thing that gave me the idea of the tilt test. I don't have any medical background, but it raised a flag for me. Does this test sound like something that could help?

maybe. in the er one of the time that i was rushed to the hospital after i came to, the nurse had me lay down and she took my blood pressure and she had me sit up and she took it again, and then she had me stand and she took it again. im not sure how close this is to the tilt test but instead of my blood pressure dropping it shot up. im not sure what the cause of that was. my blood pressure always went up really high it was my oxygen level the was super low.

Seems it might be worth looking into.

I was 26 when I was diagnosed as having TLE: the doctors note says 'a strong focus was detected' from an EEG done at the time. My problem mainly occurred exactly one hour after falling asleep. Five years ago I was put on Depakote. Then 18 months ago I started getting grand mal seizures. Doctors upped the dosage. To cut a long story short, with about three weeks I got very sick. I ended up in the Critical Care Unit, due to prolonged uncontrollable seizures. They put me on Keppra, Trileptal and Depakote all at the same time at massive dosage. After 11 days in hospital I was stable enough to go home, but the seizures returned, and I would get 2-3 seizures one after the other, up to 12 times a day (yes, 20-30 seizures a day!). I was a mess.

Eventually, after three months I was referred to the USF monitoring center. They quickly found no abnormal electrical activity occurring during these seizures and stopped all drugs immediately. This is very dangerous, as the withdrawal effects are horrendous. But within 24 hours the seizures stopped. I've had no seizures since (18 months now), though the night time problems returned.

I now believe the night problems are due to something called 'Night Terrors'. This is believed to be stress related. The medication I was on somehow provoked Non Epileptic Seizures (NES), often called Psuedo Seizures. What an awful misnomer - they were real enough to me I can tell you! But NES are also linked with stress.

USF told me that 15% of intractable seizures that don't respond to medication are NES that have been misdiagnosed. I was one of the 15%.

I'll probably never know whether I really was having TLE 25 years ago or whether it was misdiagnosed. But I am now acutely aware of how massively destructive stress can be, and at all times watch myself carefully to prevent stress build up as much as I can.

I'm not sure if this helps you, but my advice would be to get a conclusive diagnosis and then get an unbiased second opinion and be very careful about what drugs you take. I am now extremely skeptical about doctors and any medications. Don't rule out the potential effects of stress. Its hard to accept that stress can cause our own bodies to effectively turn destructively on ourselves, and having a concrete medical condition to pin our problems on sometimes feels better than nothing at all when you have a problem.

I set myself a project when I was recovering to tell my story in an entertaining way (I'm a musician): I created a short music video 'Falling Down' - its on You Tube, search "drewmo2000" if you're interested.

Good luck

Based upon my experiences, I'd certainly agree with the last poster about obtaining a second opinion. I should have done exactly that one year ago after first being diagonsed with TLE. Instead, I went along with the neuro's trial and error recommendation of trying various types and combinations of AED's. None of it has seemed to help much and some of the side effects, particularly with keppra, are just not worth it for me. With the neuro's permission, I'm being weaned off the last AED she prescribed, keppra. If going med free doesn't work I have referrals for epileptologists. Good luck to all.

I agree that you should see an epileptologist. If you are having any sort of seizures, they are the ones to figure it all out.

My instructor's friend (another instructor at the college i go to, also an rn) says that if nothing is found she and my instructor will both take me themselves to the mayo clinic to figure it all out, but i dont have any insurance what so ever and that makes things a little hard right now. but i have applied for a few different medical insurance places and am waiting on replies.

Best of luck to you; please keep us posted.

well i didnt get approved for any medical insurance. so i am still outta luck. now my doctors are looking into environmentally induced seizures (you may have already saw the thread about it) this is so frustrating... BAH

all doctors have released me... still have no idea... i give up for awhile.... i havent had any more so far... so....