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Mermaid15 04-04-2003 05:26 PM

Temporal Lobe Seizures
I really, really need some help. I felt really sick almost a month ago. I had a strange deja vu feeling that caused a rush of fear to go through me. Then I felt really strange, almost like I was being separated from myself - I just don't know how else to explain it. It lasted about a minute. I was in the breakroom at work. When I felt somewhat better, I went to the restroom. In the cubicle it happened again; a thought felt like deja vu, caused me to panic, again I started to panic and felt like my soul was leaving my body. I got so nervous I yanked at the cubicle door and ran to the sink. I got so hot I got all red and started to sweat. I went back to my desk, but I just felt so weird - I just don't know how to explain it. I decided to ask to go home because I just felt like maybe I was going crazy and I should go home. Then I had a third episode, and this time in addition to the deja vu, separation of self, and sweep of deep fear, I thought I was smelling something foul. It felt like the foul odor was coming from my nose. I felt so humiliated when I got home - like how could I leave work because I was panicking from deja vu? And I figured I hyperventilated so much that I created the foul smell in my nose somehow - like I must have broken a blood vessel or created a lot of mucus from breathing heavy. I never smelled this foul smell before - it didn't smell like anything I ever smelled before and I can't describe it except that it was foul. I laid down for a while when I got home, but I was so upset over these episodes that I decided to type "deja vu" into the internet to see if I was psychotic or something. I found that deja vu could be a symptom of a temporal lobe seizure, and as I dug deeper into my internet research I even found this message board, which has people on it describing just about my exact same symptoms. I thought I was doing the right thing by going to my doctor and asking if I should be checked to see if I had a temporal lobe seizure. I had this same experience once six months ago when I had just started an antidepressant. It was one of the reasons why I went off of it. The only other time I had an episode like this was in the fall of 2000. I've always been a little odd - highly emotional and very high strung and very creative - so I had just shrugged these episodes off as my mind being weird on me. I told all this to my doctor and I was referred to a neurologist. I saw him yesterday and my whole life has been turned upside down. Just by what I told him he wants me to take a medication called Keppra - even before I have my MRI and EEG. And he says he'll write a letter to the DMV so I can keep my license IF I take this medication! And he doesn't want me to drive until he sees me again in two weeks. I have had at least 15 severe crying episodes since yesterday - so much to the point that I had a pounding headache today and I thought I was going to vomit - as well as lose my mind. Now I'm second guessing myself and I'm starting to think these episodes never happened, or they didn't happen the same way as a temporal lobe seizure, or they weren't as severe and I only had a panic attack and maybe the deja vu is just because I'm psychic (or psychotic) or something. I argued with the doctor that I only had one episode in 2000, one six months ago from the antidepressant that I stopped right away, and the three that one day three weeks ago, so why can't I drive, and why should I be medicated? I don't even know for sure that I had a temporal lobe seizure, I just had something weird happen to me and I thought I would be prudent to just be checked to see if it happened in case it did happen - so that I don't have brain damage or have a grand mal seizure someday or something like that. I thought I was going to go into the doctor's office, explain my symptoms, be told yeah maybe and be sent off for MRIs and EEGs before anything would be said like I definitely had seizures and need meds or I can't drive. This neurologist insists that clinically what I described can be nothing but a temporal lobe seizure and I must take the medication because of legal liability on the doctor if I have a seizure when I drive. I AM SO ANGRY. I NEVER BLACKED OUT OR LOST CONSCIOUSNESS WHEN I HAD THES EPISODES. I HAVEN'T EVEN HAD MY TESTS YET, SO WHO'S TO SAY THAT I REALLY HAD TEMPORAL LOBE SEIZURES? I thought I was doing the right thing by asking to be checked, but I think I just ruined my life. This guy is making me take meds that I may not need, "blackmailing" me by making my keeping my license contingent upon taking these meds, and if I don't need them and I take them what if the meds make me an epileptic when I wasn't one? I totally despise my primary care doctor for subjecting me to this neurologist without advising me of what he might say or do. I drove myself from work to the neurologist's office and was planning on driving myself back to work. What did that guy think I was going to do to get myself back to work? Why didn't someone tell me more ahead of time? And now I'm getting comments from my boyfriend and members of my family that it's my fault for going on the internet and looking for a disease to label myself with and going to the doctor and saying I have it. I simply found symptoms that fit exactly what I had and those symptoms were called temporal lobe seizures. Coughing is an exact symptom of bronchitis, but not everyone who coughs has bronchitis! So why in a matter of 10 minutes did I ruin my life? And all I can do is sit here and cry and type post and hope someone reads it and can at least partially understand what I am going through. If I have temporal lobe epilepsy I am strong enough to deal with it, and I will be a big girl and take my meds, but I don't agree with being given meds before I am tested - I refuse to believe that I can be properly diagnosed from what I told the neurologist without being tested. If a person is given antipsychotic medicine when they do not need it their healthy brain can become psychotic. If a person takes strong antibiotics for a little cold, they could end up coming down with a supervirus that there is no effective treatment for. So if this guy gives me anti-seizure medication when I may not be epileptic, I guess then I'm stuck on it for life because I'll become an epileptic because of it. But there's the driving issue. I can't just refuse treatment because then he'll tell the DMV that I'm epileptic and not taking my meds. I contacted another neurologist and I'm going to her for a second opinion in a week. I'm having my MRI on Monday and my second opinion neurologist wants to give me an EEG herself. This taking the matter into my own hands and going for a second opinion has calmed me down somewhat, but I am hoping that I have a brain tumor or proof of seizures in the tests because I don't know how I can live with taking the meds if I don't have proof that I need them. And the neurologist said that my tests will probably come out negative because temporal lobe seizures usually don't show in them. So I don't understand how he can make me take meds and call the DMV if he has no proof other than what I said! I'm sorry this post is so long, but I am in so much agony. Is there anything anyone can contribute? What is going to happen to me?

Lainie45 04-05-2003 04:46 AM

First of all, relax. Second of all, I'm not sure and I'm certainly no doctor, but I haven't heard of AED's causing one to become *epileptic* (to be politically correct, that would be a person with seizures). They may cause all types of other side effects, but not epilepsy itself unless you are at a toxic level of the med (like dilantin). Your neuro is basing his temporary diagnosis on the symptoms you gave him, which does match TLE. He is erring on the side of caution. That's what you went to him for. In your research have you come up with any info on kindling? In simple terms (because I forget exactly how to explain it technically), once the neurons in the brain begin having seizures they "learn" the pathways and continue to seize. Additionally, if you are having seizures, they may at some point get worse and worse and eventually generalize into a grand mal. That really bites it, IMO.
As far as the driving issue, you were told not to drive for 2 weeks! So what. He will give you a letter for the DMV if you take your meds. This is for your own safety, as well as the others on the road (and sidewalk!). Many on this board cannnot drive at all. You want to vent to us about not being able to drive for 2 weeks? Get over it. If you were dizzy with the flu for 2 weeks would you drive?
What you gonna do if you do generalize to a grand mal from not taking your meds?

Mermaid15 04-05-2003 07:22 AM

In regards to the response to my post, I'm sorry if I offended anyone who can't drive at all and I'm also sorry if using the term "epileptic" isn't politically correct (the insert on the Keppra pill package says it's anti-epileptic). I'm hurt by the comment that I should "grow up." I'm just new to this experience and I'm very scared. I'm not getting much support from people at home. Maybe I'm in denial. The main reason why I'm so frightened is because I tend to have bad side effects from medications. And I can't help but think of the medication as something that's going to play with my brain and give me side effects and that terrifies me. The episode I had last July was when I was on the antidepressant Celexa, and I thought the medication was making me go crazy. And the main point of the big ramble I posted last night was that I just don't understand being medicated before my test results come back.

Again, I'm very sorry for offending anyone.

sekharp 04-05-2003 09:03 AM

I am sorry that you are scared, but I understand feeling that way. Personally, my license has been suspended since Feb. 24; it's a pain. Because of the nature of my job (reporter), I can't go back to work until I can drive. And right now, I am experiencing a change in my seizure pattern that is really knocking me for a loop (clusters included). I understand that you feel like, "Hey, wait a minute!" during all of this that is happening. Your doctor is medicating you -- and believe me, I am hypersensitive to AEDs -- and logically, you can't understand why. Normally, doctors run tests and then prescribe medication. However, epilepsy isn't always the same as other disorders. I've had a few normal EEGs and, basically, a normal MRI and several CT scans. Still, my epileptologist says he bases most of his diagnosis on history, seizure pattern, risk factors and response to medication. It's possible that your doctor wants to see how you respond to the medication (was it Keppra? I was on that, too; in fact, I still am) and in the meantime, get your seizures under some measure of control. I can also understand how frustrating it is for people on these boards who can't drive at all (like myself). We wish we would only have a two-week restriction but that's not always the way it is. All I can say is to take your medication, let your doctor know about the side effects -- and any more episodes you have -- and take it one day at a time. I know this is overwhelming but all this is just leading (hopefully) toward a definitive diagnosis (maybe even a seizure focus) and control. I hope you feel better soon.
P.S.: About your family's concerns about "self-diagnosis," I would say that you were just scared and wanted to find out what was happening to you. It certainly seems like, preliminarily, it was confirmed by the neurologist. It probably is hard for them to deal with, given what people know (and more importantly, don't know) about epilepsy. A lot of people think it's just something children have, that adults don't get it that often, and there is no other type besides the generalized tonic-clonic seizure (formerly known as "grand mal"). Education is the key but it sucks when you're the one who is suffering. See what the tests say and make sure you share what your neurologist has to say about your condition and the results.

All of us has an angel, if only we know where to look.

[This message has been edited by sekharp (edited 04-05-2003).]

[This message has been edited by sekharp (edited 04-05-2003).]

nic-avery 04-05-2003 11:32 AM

Hello Mermaid :)

I can relate to your post. I too have TLE
and when I first went to the my doctor and explained what was happening to me, he told me it sounds like epilepsy (i was floored). He prescribed some pills for me to take. I asked for how long and he said - "oh, probably forever". EEK!! I think I almost even cried when he said that.
It was really hard to absorb to say the least.
When I got home from the doctors office I phoned a family member and explained what happened and what the doctor wanted me to do and she said - "Go get a second opinion, now!!" So, thats exactly what I did. I went to another city that same day to a different doctor and explained what happened to me and lo and behold.. he said the exact same thing - "Sounds like TLE, take these little pills, don't drive and wait for a neuro appointment". I hesitated because it really is a hard pill to swallow (no pun intended).
TLE - was something I had no idea existed and I was shocked that I got something like that. I'm in my prime and have never been sick before and I'm suppose to be invinceable. :(

After I seized a few more times, I realized that the doctor was just doing his job and was only trying to help me, so I started to take the med. It made me a little more than dizzy/drunk feeling at first, which was hard to handle, but as time went on, I got used to the AEDs. The doctor told me that if I don't get the seizures under control that they *would* get worse and then I'ld really be in trouble.

I know its a hard road to travel but just remember to take it one day at a time.


ps: As it turns out both my eeg and mri were abnormal. But I do know that for many ppl, their test results are perfectly normal and they still have E and still have to take AEDs.

Please take care of yourself, Mermaid. One day at a time. :)

Mermaid15 04-06-2003 02:01 PM

Thanks for your input, everyone. My boyfriend left me at a shopping mall all day Saturday - per my request so I wouldn't go nuts. He took me to Church today and I spoke to some people who basically said the same thing - I need to take this one day at a time and see what my test results are. I have the MRI tomorrow.

I'll talk to you all soon.

Mermaid15 05-26-2003 04:23 PM

I don't think you're allowed to post your e-mail address on this board. I think someone else just got in trouble for that recently.

I had a second opinion in mid-April, and that doctor was great! However, my new dilemma is she had me see a psychiatrist to rule out stress, but the psychiatrist was as bad as the first neurologist. He didn't even spend 15 minutes with me before medicating me and sending me on my way! And he said he can't really say the episodes I had were from stress until the neurologist rules out epilepsy, but the neurologist said she can't rule out epilepsy until the psychiatrist rules out stress! :mad:

The new neurologist ordered another MRI, this one with dye, and an EEG. I had both tests done, but I haven't heard anything. I would assume if something is wrong someone would have called me by now. My follow up with the neurologist is on June 17, and my follow up with the psychiatrist is on June 18. So things are still up in the air until then. [img][/img]

Thanks for your interest in my posts, though. Take care of yourself and have a happy Memorial Day!


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