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  • Complex Partial/Temporal Lobe Seizures

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    Old 07-02-2003, 02:24 PM   #1
    amyanne1
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    Question Complex Partial/Temporal Lobe Seizures

    I have recently been diagnosed with complex partial seizures, and am taking Dilantin for the time being. The doctor thinks that it started after a bad concussion that I had (I had one gran mal, then these started quite some time later). I had no idea what was going on with me, and had no idea this type of seizure even existed. I thought I was going crazy! I have tried explaining to my boyfriend and family exactly what they feel like, but it's hard for someone that doesn't have them to understand. Even though I do not like the thought of taking seizure medication, I am just glad they have been diagnosed and can be controlled. They usually come every 3-4 weeks, and I have about 7-10 a day, and they last about three days. I would love to hear from anyone else that has these and what they go through. I would have one out of the blue and it would physically do something to me as well as mentally (hallucinations, vivid dejavu) and then afterwards extreme exhaustion, nausea, etc. Thank you so much!

     
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    Old 07-02-2003, 05:23 PM   #2
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    Hi - my 18 year old daughter has complex partials as well as tonic clonic. I can tell you that the complex partials sometime wear her out more than the tonic - clonic. They are an exhausting seizure. After heaving alot of them - she gets migrain headaches as well. She is developmentally delayed so this is just what we have seen........thinking of you........Paula
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    Old 07-02-2003, 05:35 PM   #3
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    Hi.My brother has all 3 types of seizures.The types he gets are called convulsive or generalized seizures known as gran mal.When he gets this type he usually falls to the ground and moves all over, sometimes up to 7minutes and he moans.

    2nd type is absent seizure where he is in la la land.You can talk to him,but is zoned out in another world for about 10seconds and doesn't recall anything you said to him.Kind of like concetrating on something hard and not hearing a word.

    3rd type is complex partial.My brother will chew on his lips,or itch his hands and not even realize he's doing it but is seizure activity ready to happen.It starts on one side of his brain and spreads to the other.

    So as I've learned from the epilepsy society,my brother has seizures every day of his life and doesn't know it's happening.He may not have the "big"one happen all the time,but has mild ones every day.I've only seen my brother have the "big"one once,and it made me scared and helpless.But I do and have seen him have his "small"ones all the time.I think that people that don't have epilepsy should be aware of what's going on and how to handle it,because for someone that's never seen one,can get quite emotional.

    My brother will get seizures if he plays video games because there's too much brain activity going back and forth.
    He gets them if he sees flashing lights,whether it be an ambulance,firetruck,police,or strobe lights.
    By being on the computer and concentrating very hard.
    He doesn't drive anymore because he's totalled 7 cars in 2 yrs. due to his gran mal seizures.Complete loss of driving.
    Sun stroke can cause him also to have a seizure.


     
    Old 07-02-2003, 06:35 PM   #4
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    How long since you were diagnosed & on dilantin? You say you have frequent seizures. Sounds like if you have been on dilantin for some time & still " flop" often it might be wise to get a better drug. Obviously dilantin is not doing the trick.

     
    Old 07-02-2003, 08:36 PM   #5
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    I literally have been trying for months to get to a neurologist. I made notes of everything that I can remember after they happen and the symptoms afterwards (i.e. memory loss, extreme fatigue, nausea, loss of muscle control, confusion lasts for about 30-45 minutes. During the seizure, I will play with my hands or pull my hair, I don't lose consciousness, but lose all grasp of my surroundings and have no idea where I am and have almost a paranoia feeling (this lasts for about 30 seconds). It's almost like a strange movie in my head going on during the seizure...It's also an intense dejavu feeling, but I can't remember any details really afterwards. My insurance requires a referral from my PCP and it has taken forever. They finally referred me to a neurologist after many phone calls and several visits to my PCP and the neurologist turned out to be someone who only treated headache patients, nothing else. I started having them one day again, and had roughly seven in a 6 hour period and my boyfriend took me to the emergency room this time. I was still in a state of confusion and couldn't remember what day it was (about 15 minutes after my last one). They admitted me in and I was finally able to work with the neurologist on call. They put me on Dilantin immediately that evening and I was on 1500 milligrams in a twelve hour period. I still had some the next day (about 7 and then roughly 25-30 "small ones" where I would just feel the sinking feeling and kind of zone out to my surroundings, not as intense as they can be). They did a tremendous amount of blood work and said my white blood cell count was extremely high which was normal after having seizures. The neurologist calls it complex partial and temporal lobe seizures. I am hoping that the Dilantin will wipe them out, although I am not enjoying the Dilantin! (I have been on it for two weeks, 300 mg a day, for two weeks, and am still having trouble adjusting to the exhaustion and dizziness. I go back to the neurologist next week (FINALLY able to get a referral by changing my PCP!) and am hoping to see the different seizure medications available. I truly appreciate everyone's imput, this is all pretty new to me!

     
    Old 07-03-2003, 09:04 AM   #6
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    Don't you just love how those referrals always get caught in the "going out" pile?
    Dilantin is always the first drug they try. It's terrible for memory & always keeps you tired.
    If you have only been on it for a couple of weeks though, that's expected. It will take time to adjust to any new drug. If you read past messages you'll see that some people love it & others don't. You'll see that in every drug, so hopefully your neuro. will work w/ you until you're satisfied & under control.
    Keep taking notes of your episodes & drill that neuro. with them. Good Luck!

     
    Old 07-03-2003, 10:40 AM   #7
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    WOW Amy,

    What you describe is me EXACTLY!!! I have CPS and SPS and I to would have 20-30 SPS a day and up to 2 PCS a day for a few days and then I would have one about every 3 days. All of that was happening for a while.

    Before I knew what was happening to me I thought I was going crazy. I would have hallucinations(sp?)and deja vus daily, several times a day. I would be driving and get one. I would pull over and start praying for someone to take this away from me. I would cry and cry because my deja vus are accomanied by extreem fear. I get panic stricken and deathly affraid...of what I don't know. I would keep this all from my family. I didn't want to tell them for fear that they would think I was going nuts. I thought they were anxiety attacks because all of this happened after some really stressful times in my life. When the stress was gone, they kept coming. I didn't understand it. I was in a job interview after about 8 months of the deja vus and hallucinations, I was speaking to the woman doing the interview and telling her about how I was qualified for the job when the feeling struck. I had a REALLY BAD deja vu and I went pale and started sweating a cold sweat. I kept my cool and went on like nothing was happening. She was asking me a question and the next thing I knew I was half way across the parking lot heading for my car. I FREAKED OUT!! I didn't remember anything at all!! I was drunk feeling and confused. I didn't know where I was at first and why I was there. After about 15 min. I figured out where I was and what I was doing there and then I cried. I went home like nothing happened again!!! I had another while I was driving my parents home from our house (my mom is blind). I had the BAD deja vu again and I kept it a secret AGAIN. I went out in the middle of a turn and from what they tell me I told my mother that I didn't know where I was going or what I was doing. She panicked and told me to pull over. I did but was still half way in the street. My husband got out of the car and helped me get the car all the way over and helped me to turn down the street I was blocking. When I came to I didn't know where I was again. I had the same confusion and drunk feeling. That was enough to send me to the hospital.

    Like you, I didn't even know these seizures existed. I thought seizures were the gran mal type only. I didn't know. I was so shocked.

    I am now on Neurontin. It is a great medication!!! I only have the sleepy side effect and that went away in about 2 weeks. It is the most "natural" medication there is. I have a very low tollerance to anything. I was on Tegratol and Keppra but both of those gave me severe depression and mood swings. They were destructive and they didn't really help with my seizures. Neurontin is wounderful. I have been taking it for a little over a month and I have just started to see how it is doing with my seizures. I have been seizure free (cps)for 9 days now and that is GREAT for me. I still have some mild deja vus and hallucinations but they are going away too. I see more when I am tired or stressed so I TRY not to let that happen.

    I just wanted you to know that you are NOT alone! I have everything you have but have never had a gran mal. YOU HAVE A FREIND IN EPILEPSY! Write again, I would love to hear more about you! OH, and WELCOME to the board!! Great people here!!!

    God Bless,
    KittyMom

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    Old 07-03-2003, 11:11 AM   #8
    amyanne1
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    Thank you kittymom! I had tears in my eyes and goosebumps when I read your post, you are the first person that I have EVER talked to that has this exact thing! I started having these and had no idea what they were, I was so scared because I thought it was a mental illness or something because I didn't know what they were and had never heard of such a thing! When I would have one for example I would be on the phone with someone, and the next thing I knew I would be off the phone and couldn't remember any of the last off the conversation nor hanging up. My boyfriend and I went to see my parents one week-end and I had one, and when it was through I had a diet coke in my hands and couldn't remember where it came from (he had given it to me), and my dad was sitting in the room. I didn't know where I was, and when it was over, I asked my boyfriend what my dad was doing there because I didn't remember anything. (I had about seven in all that day) It's always a very intense dejavu feeling and a paranoia feeling, but when it's over, I can't remember anything that went through my mind usually. Right afterwards, I am confused and exhausted for about 30-45 minutes, sometimes nauseated, sometimes loss of muscle control. Right afterwards I am extremely scared and extremely paranoid. Sometimes if there are people around during the seizure, it feels like an "out of body" experience, not so much that I can see myself, but I am looking at them like I think they can't see me almost. Especially if I am by myself, I am extremely paranoid and scared after they are over, as well as extremely exhausted. As long as I don't try to talk during them, I think I am okay, but if I start talking, I know I don't make any sense. When I went to the doctor orginally, I made a sheet of notes of all the "symptoms" during and after, and was so scared that it was something else, but they had gotten so much more frequent I knew I had to do something. When the doctor told me they were seizures, I was just so shocked!

    By the way, do they have any idea why yours started? Right before I turned 14 (I am 31 now) I had a really bad concussion and had a gran mal seizure about a year later. They attributed that to the concussion because it was such a pivotal age. They put me on Phenobarbital and then Tegretol in high school, and then eventually took me off to see what would happen (about 2 years later) and thought that the seizure was just a one time thing. So, these have started and could be just something from that, but they don't know for sure.

    I understand about the driving! I had one time in the car, and nothing looked famaliar, I don't even think I recognized a road! I just knew to follow the car in front of me (I was on a highway and couldn't pull over!). I followed them and kept driving, and was absolutely petrified because I didn't know where I was. I pulled over as soon as I could until I felt better to drive, but did not know where I was!

    I thank you again for your response, it has done wonders to know that someone else can understand how these work!

    Thank you and God bless you! Please feel free to email me anytime!

    Amy

     
    Old 07-05-2003, 04:33 AM   #9
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    Hi Amy,
    Your complex partial and temporal lobe seizures sound a lot like mine. I've had both absence (petit mal) and complex partial seizures for 31 yrs. and according to my Epileptologist cp sz. are the hardest form of sz. to control.
    When I have a cp sz. I start to get a nervous feeling in my stomach like butterflies and then I begin to see colors flashing back and forth in my eyes and I hear one word repeated over and over which makes it sound like an echo. The next thing I notice is that I'm not sure of where I'm at even if I'm sitting in my own home.
    If you get any warning before your sz. begins tighten all the muscles in your body and make your hands into tight fists often this will stop the sz. I learned about this back in the 1970's and take my word it has stopped many of my sz.
    You have mentioned that you have these sz. in clusters and I know I'm no Dr. but when I womans hormones change each month this can cause her to have seizures because the estrogen level is to high which can lead to sz. and the progesterone level is to low and progesterone helps calm the nerves.
    My Dr. told me to keep a calendar writing down the time of day/night along with a description of my seizures. He also told me to write down when I start and stop my period. After reviewing the calendar for a full yr. my Dr. saw a pattern of when I have seizures and just like you I have at least 2 days each month that I have clusters of sz. and this is all do to hormones changing.
    Over the yrs. and trying over 10 sz. meds I have found that neurontin, diamox, and mysoline are the best meds to control my sz.
    Here's wishing you well and May God Bless You!

    Sue

     
    Old 07-06-2003, 11:23 PM   #10
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    scooby..You explained that like my brother has them too.Very disoriented but for 10seconds,kind of like your in a deep thinking mode.And yes we would have to watch him too because it's only time before the gran mal would hit,whether it be after that or a day or 2 after.He's 23 and has had them since he was 16,but we never knew for at least6months they were petit mals.We thought he was on drugs.But now we know what to look for.

     
    Old 07-07-2003, 08:28 AM   #11
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    Amy

    Your szrs sound very similar to mine I'm 32 and from the UK mine started at the age of 17. One question for you.... have you made a journal of when your szrs happen - is there any pattern you say they are every 3-4 weeks and last about 3 days - not anywhere near your peiod are they?????

    I also agree with previous postings does not sound as if the current drugs are doing their job - maybe a push for a secondry or a different primary drug would be a good idea.

    Don't know about the US but I had to ask for a re-referall to a different specialist I then received the best treatment I have ever had in the 15 years I have suffered from E

    Best wishes and keep well



     
    Old 07-07-2003, 08:39 AM   #12
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    First of all, thank you all for your response, I have gotten more information for you all than I have my doctor and the ER! It just amazes me the time and frustration that it has taken to finally get a neurologist! I am hoping that he will take me off of the Dilantin, it is a bit better after two weeks of taking it, but it is so hard for me to concentrate and remember things, plus I feel "drugged" all the time. It finally starts wearing off and I feel like my old self, and guess what, time to take it again! (I'm taking it before bedtime). I have kept a journal of all the seizure activity, but unfortunately there is no rhyme-or-reason. Sometimes they happen right around my cycle, but other times it can be mid month. Alot of info I have read is that this particular form of seizure activity is hard to treat sometimes. I dread the thought of having to try different medications! I would almost rather take my chances with the seizures! The last round I had though were so bad though, I guess I should be glad that I'm finally on SOMETHING though! With some of these neurologists, I wish we could just hook them up to a "magic machine" and they could see exactly what these feel like.

    Also, I have read up on the ketogenic diet, but don't know much about it to be honest, but is it supposed to work for this type of seizure activity? Even though it is quite disciplined, I would rather do that than have to take medication. This could all just be wishful thinking on my part!

    Thanks again to everyone, and I truly appreciate all your posts!

    Amy

     
    Old 07-08-2003, 09:27 AM   #13
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    Amydianne,

    You, Grumps and I should get together and go on holiday. We all have the same feelings and experiences. This is great!! We are sisters in "E".

    God Bless you all,

    KittyMom http://www.healthboards.com/ubb/wow.gif

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    Old 07-08-2003, 09:57 AM   #14
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    The vacation sounds good to me Kittymom!

    BTW, I am trying out a new neurologist on Thursday that was a referral from the ER...Hmmm, hope this turns out to be good! Wish me luck! I am armed with lots of notes. As you, I have started researching so much since I was diagnosed, it's like I just can't get enough information! I am so ready to go, I am hoping and praying he will try something else besides the Dilantin, I am tired of feeling "sluggish" and dizzy all the time!

     
    Old 07-09-2003, 07:34 AM   #15
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    I do wish you nothing but luck when you go to the new doctor. Let us know if he says anyhting different. I hope they get you figured out.

    Mine is getting worse again. I am having seizures more frequently now and the auras are BAD! The mini Deja vus are BAD also. How do you feel after a seizure? Not the immediate after but the next day? My post ictals scare me...sort of like the deja vus scare me. I had a seizure last night and now this morning I feel strange. I have mini deja vus but the are making me scared. Anyway, how do you feel after them?

    Hope you are doing well and hope to hear from you soon.

    God Bless you,

    KittyMom

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