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Can anyone describe their symptoms of a simple partial, temporal lobe seizure?

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Posted 1/7/2007 11:59 PM (GMT 0)
Hi everyone.

 

I'm in a major quandry. I don't want to explain what I'm experiencing until I hear from some of you!  I don't want to influence any answers! 

 

So if anyone here has simple partial seizures could you please tell me what a typical seizure for you would be like? The more detailed the better.

 

Also, if your simple partials are temporal lobe, that would be even better!  But I'll take any kind of simple partial seizure story, hehe. Thanks everyone.  I really appreciate it.  What is going on with me is that my neuro thinks that I might not be experiencing seizures after he diagnosed me with them 4 years ago.....Somthing else might be mimicking them......  I'm not happy. As you can probably imagine!

 

If anyone has advice on how to taper off of Clobazam without getting the tranquilizer dopiness that would be great!  I'm tapering off of it right now and honestly, I should probably be in a treatment center.  The withdrawal symptoms are awful....The neuro wants me off of Clobazam in order to see if these are seizures or not.  Plus the Clobazam isn't working for me anymore.  Yeah, lots going on.  Thanks for listening.

 

Ginny

Posted 1/10/2007 10:06 PM (GMT 0)

Hello Ginny

If I get a simple partial, I can't speak or even form words in my head. This seems to be the main symptom - my body operates OK otherwise providing I'm not doing anything too complicated. Each one lasts between 10 and 30 seconds. Sometimes I get 'aftershocks' a few minutes afterwards, which are basically milder versions. These can go on for a while, coming and going, and sometimes turn into a complex partial - though Keppra, almost entirely useless in every other respect, has cut down the number of times this happens.

It must be said, though, that I'm the only person I know who has this speech thing. A posting on this forum a while ago revealed a remarkable number of ways in which people experience simple partials. So if your own are different, that doesn't necessarily mean it's not epilepsy. I've no idea if mine are temporal lobe or not, and nothing to say about Clobazam. Five years after being diagnosed with this stupid condition and I've still done next to no research on the subject.

Take care,

Andrew

Posted 1/11/2007 12:00 AM (GMT 0)
Thank you Andrew!

 

That is big help to me to know that a simple partial can be totally different from one person to the next.  The symptoms I get are a sudden sense of "oh no....", then followed by a really awful smell and an intense episode of deja-vu.  Mine last about the same length as yours - 10 to 30 seconds or so.  I get about 1 or 2 a day right now.  I don't have the speech thing either.  That is interesting.  I remain 100% able to speak and communicate.  No one ever knows I'm having a seizure except me!  It's wild...

 

The reason why I'm tapering off the benzodiazapine med is that my body, over the last 5 years, has built up a tolerance to it and it no longer controls my seizures.  So I have to come off it.  It's been 3 weeks of hell so far.  I'm going really slow with the taper, but it's still producing some awful withdrawal symptoms.  Interestingly, my seizure activity hasn't changed!  It hasn't gotten worse or better and I'm down 10mg of the stuff.  Who knows....

 

Thanks so much for your response Andrew. All the best!

 

Ginny

Posted 1/12/2007 4:02 PM (GMT 0)

 I experienced complex partial seizures for over 5 years before any doctor diagnosed me. They began short, maybe 10-20 seconds and eventually lasted 45 sec to a minute. I would have a strange feeling wash over me, a dejuva ( it felt I should know what was going on but couldn't), and extreme tiredness followed. If i would have several in a row I would need to lie down. I could continue what I was doing with the seizure but not talk. I later learned that I would turn my head to the left and make a strange movement with my mouth.  My husband would call it a" blank in my tape". Only people who knew me well could tell when I would have one.

I eventually was diagnosed with a brain tumor in my right temporal lobe. It was benign but had to be removed to discover that. The seizures stopped after the surgery. I hope. Lately I have been having ? seizure but not exactly like before. Anyone had different seizure symptoms after surgery? thanks for any input.

Posted 1/12/2007 6:37 PM (GMT 0)
Wow , I havent posted on here for soooo, long !!

I always called my seizures " space outs " years ago the docs called them petit mal..

I can say... when I was spacing out I could not talk either.. only for 30-60 seconds...

I could not respond to a question... I could function bodily... just not mentally... Weird...

I also needed to go lay down, I was always exhausted after these wipe outs !!

I had temp lobe epilepsy... I had an angioma in my Left temp lobe... I had it removed finally about 5 months ago... I think I have been seizure free since, but I get extremely crazy... Mood swings are uncontrollable....

I am curious to know... Does anybody out there have any plates in their head ??  They are killing me.... the screws I could feel on my scalp... under my skin...

Seizure free... Yes...... Other problems now.... sometimes I wonder which are worse eyes

Posted 1/20/2007 5:16 PM (GMT 0)
I understand how you feel. I thought I was the only one with uncontrollable mmod swings. I am so irritable at times, esp. if alot of noise is around. Anyone else? I wish I knew if these are regualr symptoms of brain surgery or if it is only me. I don't have a plate in my head but staple things and a couple of things that look like flowers on an xray. I can feel all these ridges in my head and my skull has sunk in. sometimes such headaches! i at times wonder what would be worse seizures or this. I hope you are soon feeling better. try avoiding to much noise stimulation at once. It seems to help.
Posted 2/2/2007 12:09 AM (GMT 0)
I too suffer from simple partial seizures. I experience them approximately once every two months, over the course of a 3-day cycle. It has always seemed very strange to me and I am uncertain as to how to rectify the problem. It begins later in the day on the first day; I begin with a 30-60 second sense of dejavu, much like has been described here. I can continue to move normally, but cannot speak during this time because I seem absorbed by my thoughts. On the second day I have numerous episodes similar to this. Then on the third day, I have one or two in the morning, feel like sleeping the rest of the day to catch up, and that is it for the next month or two. Within a day or so I am clear headed and fine.

I presently take topamax and lamictal and have continued to increase these medications as these seizures have reoccurred, to little avail. Does anyone have any suggestions? I have become very frustrated over time. It doesn't seem to matter whether I increase the medication or not...there is no effect.
Posted 2/3/2007 9:55 PM (GMT 0)

Andrew50,

I also have SPs I used to think of as Petit-Mals,

I've had epilepsy since 1979, controlled by meds.
I get a form of petit mal seizures that my Dr. calls "speech arrest". It only lasts a few seconds, I am aware of what is going on around me but I can't respond.

When I try to talk, my speech is slurred (more than usual).
Most people have no problem speaking but I have to concentrate to form every word. (all the time but twice as hard during a speech arrest).
Everybody thinks I'm stoned all the time.

Boy, I didn't realize that we take our speech for granted so much.

My neurologist says that if I wasn't on meds, I would have a full out Grand-Mal seizure.

This just proves that the meds are working.

Randy (Ontario) <!-- google_ad_section_end -->

Posted 2/12/2007 9:54 PM (GMT 0)

I get the slurring too, Ran Man. I also do a certain amount of mumbling. I wasn't aware of either, incidentally. But the hospital recently asked someone who'd seen me having a seizure to write down the symptoms.  It was quite an eye-opener. This is probably a useful exercise for everyone - sometimes our bodies can be doing this we're totally unaware of.

And you're right about us taking speech for granted. After a big seizure, it can be up to half an hour before I can speak again. It always feels like I can't think at all during this time. I can, of course, I can do nearly everything. But as I can't put anything into words, it just doesn't feel like thought.

Posted 2/24/2007 11:03 PM (GMT 0)
Hi Everyone!  And especially set 74!!

This is my first visit to this site.  I have never done anything like this before, so please forgive me for any internet faux pas.  I just wanted to reply to "set 74" and say that it sounds like we are having very similar seizure types and patterning.  I was just diagnosed with simple partial right temporal lobe seizures in Dec. 2006 but had been having the seizures (I called them "episodes" before Dec.) for 3 1/2 years.  No one (my primary MD and OB/GYN) seemed to know what they were.  They both referred me to counseling.  I refused.  I knew that these were not "all in my head"...as the saying goes.  But I guess you can only really find out what is going on through an epilepsy specialist.  I had to see a second Neurologist (the first one was not an epilepsy specialist) before I was diagnosed...the first one did not find anything.  I did some research to find my second doctor and it did not take long.  With my type of regular seizure patterning, I was able to go in for an EEG on the day that they were happening and they captured it right away.  I was diagnosed that same day.  My doctor started me on low dose of Keppra right away and, so far so good. I did not have my usual monthly seizure "day" in January and I do not have any noticeable side effects from the medication.  I am hoping that the pattern has been broken and we are getting some control over this.  I wanted to share with "set 74", that I in addition to the deja vu, I also had the taste aura (strong sweet, metallic taste), a feeliing of foreboding, nausea, and noise/light sensitivity.  Fortunately, I have not lost consciousness at any time.  Because of the reporting laws in California, I am very concerned about losing my driving privileges.  I have a daughter, a successful career, and a home that I love....alot to lose if I can't get to work.  I would really love to hear from others who have had to deal with the DMV in California around maintaining their right to drive.  Thanks for listening.  It is nice to have a place to share thoughts and feelings about all of this.  It is scary and frustrating at times...but I do not feel that it is hopeless!  Please feel free to share  your thoughts and ideas.  Thanks!

Posted 2/25/2007 4:07 AM (GMT 0)
Thank you for all the responses.  I can relate most to Set74 and littlesisser8.  We all have very common symptoms with the deja vu, strange smells, or tastes, feeling of foreboding or fear. 

 

They are driving me crazy right now.  I had to stop the taper of my frisium because the seizures were getting too frequent.  I'm on 30mg of it now and I'm having seizures every day.  They get really bad about 10 days before my period starts, so my neuro knows it's hormonal in nature too.

 

I'm scheduled to go in for an EEG/video monitoring session sometime this year.  I'm on a wait list, so I don't know exactly when it will happen.  I"m just glad that they are taking me seriously and trying to determine exactly where the seizures are originating etc.  All of me EEG's come back normal.  Go figure eh!

 

I did have a seizure a couple of weeks ago in front of my mom.  She said that I put my hand over my mouth, stared up at the ceiling and swallowed a lot.  I didn't know I was doing that, but I am always able to maintain complete awareness and continue conversations when they're happening.  So who knows what they are all about.  All I know is that they freak me out!  I haven't had one while driving, which is a good thing.

 

Thanks again for everyone's insight and experiences on their seizures.  I appreciate it!

 

Ginny

I thought I'd also note that having conversations will trigger a seizure, and they happen usually between 5 and 10pm!  I never have them in the morning. 

Posted 3/3/2007 12:28 PM (GMT 0)
Thanks to littlesisser8 and ginny for your replies! It is nice to hear from others who have similar characteristics with regard to their seizures. Like you, littlesisser8, I too cannot afford to lose my license as a result of career demands. I am grateful that I do not lose consciousness and am lucky to have some sense of when my seizure "cycle" will be happening next. And while, like ginny, I have never experienced a seizure while driving, there is that gnawing sense of fear that I might someday.

I admire your persistence, littlesisser8, in determining your diagnosis. That had to have been frustrating to have been told you needed counseling when you knew that there was something wrong! You listed a variety of symptoms that you experience in addition to the deja vu to which I can relate; the taste aura, the sense of foreboding, and the nausea.

After last month, one of medications was increased one more time. While this has not been effective in the past, there is always hope that I will arrive at a level that will do the trick. So, we shall see...

Take care.
Posted 3/4/2007 4:38 PM (GMT 0)

Dear Set 74, thank you for your nice comments.  It was extremely frustrating to not be heard or understood for over 3 years.  But I am glad that I was able to be persistent.  I just worry about all of the people out there who are suffering these mysterious symptoms and are not getting the care that they need because their doctors do not believe them or do not have the knowledge to help them further.  Very sad. 

The gnawing feeling about driving that you spoke of is very familiar to me.  Since I last wrote, I actually did have my driving privileges revoked and then quickly reinstated (thank God!).  That was quite a blow!  But I was one of the fortunate ones.  My doctor's office was so supportive and helped me through this.  Since I was diagnosed with "clustering simple partial seizures", the DMV felt that I could better judge when I was/was not safe to drive.  Now that I know that what I have is seizures, I will refrain from driving on my "seizure days"....just in case. 

This Thursday I will be going in for a Tesla-3 MRI to see if there is something going on in my temporal lobe and/or hypothalamus that might be causing these seizures.  This will, in turn, determine whether I will need surgery....for which I will certainly obtain a second opinion.  My heart goes out to all of you who have been on this path longer than I and have had to endure all of this uncertainty and angst. 

Set 74, I sure hope that you find the right level of medication.  That is so critical to you sense of well-being and hope.  Good luck to you!  Take care.

Posted 3/5/2007 2:46 AM (GMT 0)
Set74,

 

Which medications are you on for your seizures?  I'm curious because I will have to be put on something different than the benzodiazapine that I'm on now.  By the way, if any of you get prescribed a benzo class drug, RUN AWAY!  They are tranquilizers and very addictive to the body.  I'm in a bad place right now..... Seizures with a combo of nasty withdrawal symptoms including anxiety and depression.  FUN.  NOT!!!

 

Ginny

Posted 3/9/2007 3:40 AM (GMT 0)

Ginny,

I had the four day EEG.  I think it is the best test you can ever have to diagnose your seizures.  Being wired that long is no fun, but it doesn't hurt.  I would advise you to take gowns that button up the front because you won't be able to pull gowns or pajamas up over your head.  Also plan on not being able to take a shower.  You will be able to take a sponge bath. Your wires will reach into the bathroom.  That is the only place you will not be videod.  If you enjoy reading, take some good books.

Good luck!

Carla

Posted 3/11/2007 1:53 AM (GMT 0)

Carla thank you so much!  That is the exact advice I was looking for.  I'll definitely bring books and work with me. That'll set off the bells and whistles!  Hehehe....Nothing like a little stress to encourage a seizure to come on!

Thanks again!

Ginny

Posted 3/11/2007 10:55 PM (GMT 0)
Ginny,

It sounds like your medications have really been quite a trip! I am happy to say that I have not had to take any of the tranquilizers that you described and hope that I continue to steer clear of them. I am currently on topamax and lamictal. I take 75 mg of topamax and 150 mg of lamictal in the AM, and 100 mg of topamax and 225 mg of lamictal in the PM. It continues to be a bit of a balancing act with regard to the medications. As I have noted previously in other emails, I have had to increase each of the medications alternately when I begin to sense seizures coming on and hope each time that I have reached a level that will put a stop to them. My last increase was about 6 weeks ago and so far, so good. I always have hope that this will be it : )

I wish you well with your upcoming tests. I hope that you have some spellbinding books to tide you over through all of that!

Set74
Posted 3/14/2007 1:46 AM (GMT 0)

Ginny,

Be sure and let us know how that turns out.  If you have any guys you are tying to impress right now, I wouldn't advise having them come to visit you unless you are in a real close relationship.  You are definitely are going to be having the worst hair days you will every have in your entire life.  You will have a lot more wires and glue (whatever they call it) on your head than you have in a regular EEG.  I can't remember if I mentioned this before or not,  but take gowns or pajamas that button up the front.  You won't be able to pull anything over your head while you are wired.

Take care!

Carla

Posted 3/26/2007 9:58 PM (GMT 0)
Hehehe, thanks Carla!  That was funny!  I have no one to impress so that is good.  My hubby has seen my bad hair days so it won't surprise him.  If my hair is going to be as bad as you say it will be, he might bring his camera for memories!  Hehe!

 

I will keep you all informed on when I go in.  I haven't heard from my neuro at all, so it might be a bit of a wait.

 

Thanks!

Ginny

Posted 3/27/2007 12:10 AM (GMT 0)
I get these noxious smells and altered states feelings. It's like I can float or levitate and leave my body. Also, it feels like I can make things happen by just thinking about them. I experience precognition feelings too. I'm completely aware of everything around me, but I either can't or don't dare talk because whatever comes out of my mouth would be completely weird (if anything could come out of it at all). Sometimes it's scary to me, but a lot of the time it's actually pleasant. For me, the smells are the worst part (NOTpleasant at all). They can last for DAYS!!

My MRI was fine, but the sleep deprived EEG was screwed up. I'm on Trileptal, but my symptoms are returning, so I'm off to the neuro in 2 weeks.
Posted 3/28/2007 5:13 AM (GMT 0)
I have the speech problem. I can't understand words, written or spoken, although numbers are fine. I can still function physically, and usually dont' quit what I am doing. It doesn't make me tired or anything. I actually told my dr about it and they hooked me up to the brain monitor thing, and it didn't show them as being seizures. So maybe it is something else in my case. It is very annoying though. I try not to read or write anywhere unless I don't have to talk to anyone, incase I get a spell, cause then I make no sense and people would think I am crazy! I think it makes people think I can't read though! And I don't know what I am going to do when my little boy gets older and I have to help him with homework and stuff!
RanMan's sympotms sound just like mine, I had grandmal seizures and they are undercontrol, with meds (knock on wood!) but I still have that speech problem, but it only usually comes on when I read or something like that. I don't want to mess with my meds, cause I dont' want to risk screwing them up and having the grandmal seizures come back!
Posted 3/28/2007 8:53 PM (GMT 0)
Hi Everyone! I'm new here too and joined because of this post. It's one of meaning to me because I think SPS's might be what I'm experiencing also. My neuro diagnosed me with Migraines a month ago and put me on Topamax but I had another "episode" yesterday that scared the daylights out of me. Usually they are rather pleasant, but not this one. It almost felt like the medicine had calmed or changed what was happening but didn't prevent it. I had started a calendar since seeing her and turns out it's almost exactly a month to the day, since my last "episode".

Typically it goes like this... I get this overwhelming sense of Déjà vu. Not just a little “this seems familiar” but knock your socks of feeling. Better described as visual illusion or hallucination than a just a feeling. The feeling will start and I can feel myself staring maybe even a smell a weird smell or taste dry taste in my mouth as well as a “jump” in my stomach followed by a rapid succession of imagery. It's almost a feeling of satisfaction at having retrieved a memory although the memory was not actively sought. Although it's frustrating and moving very fast. I feel like it's something I can figure it out and I feel like I have too! I don't see colors or zig zags, or dots or any of that. Then in a flash the images are gone and I almost feel like I’m going to hyperventilate but instead the left side of my body gets numb and tingly. With in a few minutes the tingling goes away and I’m left with only a faint memory of what has happened. I may feel nauseous, tired and certainly out of it but am almost obsessed with figuring the images out, keeping the memory of them fresh in my mind. Although I never can, they always fade away.

However this time when it happened everything was less intense and there were no images to attach my feelings too. So the intrigue was replaced with fear. The episode seemed shorter and I seem more conscious than during previous episodes but still had the numbness. It started with the familiar feeling of a stomach roller coaster and I was more scared than ever by the time it was over. I couldn't believe it had happened again. I just started uncontrollably crying and searching for my notebook, which I couldn't find, and that made me cry even more.

I called my neuro today and made an appointment for tomorrow. I still feel that all of this can't really just be migraines. Of course what do I know? I do feel blessed that I have a doctor who has such open availably and that if it is SPS it's not something more serious.

Just thought I would put my two cents in. Any thoughts on what my problem might be are welcome! Thanks for listening.
Posted 3/28/2007 9:12 PM (GMT 0)

I am 56 years old and was diagnosed with epilepsy last summer, but did have a few seizures as a child.  I am glad you are seeing your neuro soon.  What happened to you does not sound like migraines at all, in my opinion any way.  I do have migraines also which are triggered by allergeries.  When I was in high school I also had what I considered "zoning out" seizures.  I just didn't know until recently that they were actually seizures. Until you described it, I never thought about it that way, but when I had those seizures, it did feel like a "good place to zone out to for a while." It was usually a pleasant experience and then I would seem to pop back into what was going on around me.  Is this similar to what you have been experiencing?   I now have several different types of seizures. 

Please do follow up with your neuro soon and let us know what you find out.  I have found this forum to be very helpful.

Carla

Posted 3/28/2007 9:37 PM (GMT 0)
Thanks! I'll surely keep you posted. I do get headaches and have for quite some time, but I never though to them as migranes because I could always get rid og them with enough Advil or sleep. Even if I was sensitive to sound and light. But when I went in for the "episodes" she just kept focusing on the headaches and I didn't want to interfere with the dx with my owo.. "well I saw on the internet.. which I know they love so much!" So I thought I would wait it out and see if she was right. However I almost feel like the Topamax is giving me more headaches even though I know it can be used to treat both problems. Athough I'm not entierly certain that I'm just now noticing my headaches more because someone brought them to my attention. Ugh.. who knows about this crazy head of mine!

My appointment it tomorrow 10am.. I'll let you know what she says!
Michelle
Posted 3/28/2007 9:38 PM (GMT 0)
Sorry about all the typo's.. I'll have to be more careful :(
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