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  • Complex Partial/Temporal Lobe Seizures

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    Old 07-25-2003, 08:17 AM   #61
    amyanne1
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    I understand! My mother reminds me that I don't need to talk about it so much, because people will get tired of hearing it. The last seizures I had were SO bad, my boyfriend had come to pick me up and we were in his car, and all of th sudden one hit...when the worst part was over, I could still kind of see what I was doing, but was in a dream state still...I remember trying to open the car door, not because I wanted to hurt myself, but because I was scared. My boyfriend said I kept saying "SHHH", and then I told him I had to go because they were going to find us??? I don't remember that, I just remember my hand on the car handle. That was the scaredest I have ever been because that's when I was like "I can't trust myself alone anymore"...I would never intentionally hurt myself, it was just the seizure. I tried to explain that, and my answer was "Well at least you're safe NOW"...I wanted to scream "I TRIED TO CRAWL OUT OF A MOVING CAR!!!!!". My boyfriend, my aunt and some of my closest friends are so supportive, but sometimes I just really still need my "mommy", but I know that's not going to happen. She's there I guess as much as she thinks she can be, but unfortunately some people just don't realize that we really need them sometimes. They were on vacation when I had my first neuro visit, and I just kind of felt alone. Imagine, I'm 32 and wanted to cry because my mommy wasn't there! I just can't make her understand how scared I am, and if I tell her how bad I feel then I pretty much get "Well complaining will only make it worse!"....I don't mean this hateful, but I really wish that she and your mom and anyone else that is so convinced that they "know what we're going through" could have just ONE of our seizures, and ONE DAY of our med's and see how they feel!

    The bright spot in all of this is that this message board is wonderful, and I hope that I can at least brighten one person's day and give them any kind of advice or answer any questions that will help them.

    Take care, and please feel free to write anytime, I will always write you back

    Amy

     
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    Old 07-25-2003, 09:28 AM   #62
    KittyMom
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    Tinker,

    Hello and welcome. I know you got the run down on how great this place is and I bet you know first hand already. You found someone who is just like you and you don't feel crazy anymore. Well, guess what? You have another 'someone' who is just like you. We have all felt 'crazy' until we found this board.

    Amyd, Grumps, and I all seem to have the same EXACT things happen to us yet we are all on different medication. Funny Huh?? This whole place is full of people who will understand and give you their experiences to make you feel better about all of this "E" stuff. I love this place! Heck, I NEED this place...lol.

    I am 32 and my seizures came out of no where also. Looking back I could tell you exactly when they started but I didn't know what the heck was going on. In February 2002 I was doing dishes and had this strange feeling (I was living in NJ). It was bothering me so much that even at the risk of sounding like a loon I called my friend and asked her if she had ever felt this feeling I had. I felt as though everything in the world made sense. Everything was clear and made sense...sort of like I was being taken to heaven or something. Then as fast as it came, it went. I couldn't remember what made sense or the problems that were solved but the memory of the feeling lingered. She, of course, thought I was tired and needed sleep. I could use some more but I didn't think that was it.

    Those same feelings came and went for a few weeks when the NEW ONE started. I was getting this sence of deja vu only it was different. I was scared of them instead of ammused by them...hmmmmm?! Those went on for months and increased in lenght and intensity. I found that if I was driving and had one I would have to pull over. I was so scared that I would cry and pray, "Please please please take this away from me!! I am scared! This is not normal!" I felt as thought I was paralized and standing in front of an oncoming train at full speed. It was HORROR!! Then when they would pass I would be scared of having another one. I eventually would start sweating and shaking due to fear.

    That lasted, as I said, for months and months. We drove across the country to live here in Arizona to be with my mom who's health is failing. How I made it across country I don't even question. After we were settled here I had a few questionable experiences. I was driving my mothers truck to take her home and as I rounded a corner I 'went out' (complex partial seizure). I told her that I didn't know where I was going or what I was doing. She freaked and told me to pull over. I did and when I came to I didn't know what had happened to me or where I was. Weird! The one that made me go to the doctor was this: I was in a job interview and I was talking with this woman about my qualifications when the 'deja vu' came over me. I told myself to stay calm and not let her see that anything was wrong. I did that but then she started telling me about job duties and asking me if I could perform them and the next thing I know I am in the parking lot looking for my car. I remember nothing in between. I don't know how the interview went or what made her let me go. I don't even know if I said something stupid (I am famous for doing that when I am 'out'). I was so scared that I drove home crying and told my husband to take me to the ER. I went and they referred me to my GP. They said that I was having seizures but I didn't believe them. Seizures were the gran mal type only right??? When my GP told me I was having seizures I laughed in her face. When she showed me how many different types of seizures there were I about fainted. Off to the Neuro who said that what I described to him was Partial Complex and Simple Partial seizures. WOW!!

    So here I am One MRI, 2 EEG's, Heart tests, blood work, and CAT scans and all show NOTHING!! I have no history in my family and I don't remember ever injuring my head in my lifetime. I think I would remember that. I am having a long term video EEG on the 4th of Aug. and I am looking forward to it. I get to talk to a specialist! I have been on only three medications and none have worked at all. I have been diagnosed for only 3 months but I have the information for someone who has had "E" for years!! Ha ha.

    So, you have a new friend who knows what you are going thru. Just stop in anytime and post. The more the better. We would love to hear from you. It is always nice to meet someone who 'understands' you.

    Welcome and God Bless you,

    KittyMom

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    Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!

     
    Old 07-26-2003, 01:38 PM   #63
    Peggysue
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    Hi everyone,
    Thanks for the replies, I love hearing from everyone, its so nice to know that I am not on my own.
    I feel really paranoid today about the smallest things, cant shake the feeling that something bad is about to happen but I have no idea what I am frightened of.
    Could not get to sleep last night because my E was playing me up.
    I know what you mean about home being a safe place. Sometimes I feel so frightened I am rooted to the spot.
    My Husband is really good and understands why I am so strange at times.
    Well the good news is things might be moving on for me, when I called in the Doctors for my meds, there was a note for me to make an appointment because the Neuro had contacted my Doctor.
    By the way, does anyone sleepwalk? They told me I did when I was in the Hospital and that it could be my E.
    After a seizure does anyone find that their skin itches? Mine does and it doesnt matter what cream I put on, it makes no difference.

    Looking forward to your replies.

     
    Old 07-27-2003, 10:21 AM   #64
    KittyMom
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    Peggy,

    No, I have never had my skin itch after a seizure. These are all soooo different even though we have the same kind seizures. Weird! How have you been?? Keep posting. You know you can post on other topics too. This one is so long. Anyway,

    Gotta get to work. Write some more!!


    God Bless,
    KittyMom

    ------------------
    Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!

     
    Old 07-29-2003, 04:43 AM   #65
    smc080178
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    I am very glad to have found this site.

    I was diagnosed with Temporal Lobe Seizures a little over 4 years ago while I was in the Navy. I had a lot of bad experience with medications. I was allergic to three different kinds i tried and one of them had me hospitalized for a little over a week.

    I have pretty much just tried to go it on my own. Doctors havent been much help to me and the meds have been so horrible.

    I thought that only the "passing out" was the only symptom and that a lot of the other stuff is because I had gone crazy after getting discharged and all the stuff I have gone through since I got out.

    I get a pension from them and can't drive anymore. I havent had much luck holding down a job either. It has been about nine months since I left the house for anything other than groceries I guess. I quit working. I have been and really still am scared to death most of the time.

    I havent talked to a doctor about it because I didnt think it was normal and that eventually things would get better.

    Anyway, I am going to call my doctor today. She is probably a little upset as I have missed a few years of monthly appointments, but maybe I could be treated and be normal again.

     
    Old 03-07-2006, 04:19 PM   #66
    David_A
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    Re: Complex Partial/Temporal Lobe Seizures

    Hi- Every five weeks for two years I have had complex-partial seizures 3 or 4 times a day and last for 3 or 4 days on top of grand mals that only happen if I get the flu. I wish I could tell myself my brain is playing tricks on me and that horrifiying mental feeling and bizzarre smells for a few seconds is not real but it just doesn't work that way with those complex temporal partial lobe seizures me.

     
    Old 03-07-2006, 09:31 PM   #67
    neurowreck
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    Re: Complex Partial/Temporal Lobe Seizures

    By the looks of my tongue, today hasn't been good....but who knows since I live alone. I've had respiratory infections, including the actual flu, for the last month, with low grade temps....

     
    Old 03-11-2006, 05:25 PM   #68
    wheezie_66
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    Re: Complex Partial/Temporal Lobe Seizures

    Your symptoms are exactly what I get..............extreme dejavu........for the longest time I thought I was psychic or something. Dejavu with ridiculous detail..........for example at a stop light....bam dejavu (seizure) because the traffic is in the exact spot....the stores and all of the people on the sidewalks. How is it possible. Also during my seizures I go into full gag reflex, if I had eaten recently there are times when I will throw up the gag reflex is so strong. High exhaustion after a seizure and short term memory loss. After a batch of seizures I can no longer remember how many seizures I have actually had.

    I recently had a brain MRI as my mom died suddenly from an aneurysm....the MRI did not indicate any abnormal blood vessels or tissues such as scarring. Not sure if the concussion is the culprit or not.

    I have had them since I was about 16............they haven't changed based on hormonal levels. I too had a concussion at about 9 or 10. My seizures cluster as well.

    I have not taken meds but I do try to control them as best I can..........if I keep a consistent sleeping pattern, try to avoid stress and eat healthy they can stay at bay for many months. As soon as they start I know that my lifestyle is out of balance.

    How long have you been on Dilantin?

    Elizabeth

    Last edited by wheezie_66; 03-11-2006 at 05:28 PM.

     
    Old 03-16-2006, 10:00 AM   #69
    amyanne1
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    Re: Complex Partial/Temporal Lobe Seizures

    Hello~

    I was on Dilantin for awhile (as well as several other drugs) and then got on Lamictal which I am currently on. It hasn't completely stopped them, but so far nothing else has. It has controlled them some, plus I don't have the awful side effects like I did with the other meds.

    When I first went to the doctor with my symptoms, I thought they would lock me in a padded cell somewhere, I thought I was going crazy! No one can understand what's going on unless they have had the same thing.

    I know that some seizures in people can be triggered by stress, lack of sleep, etc. however I have never had that, sometimes I get them when I'm relaxed and rested, other times I can be as stressed and/or tired as possible and nothing.

    I understand the nausea, when I am having them, I don't even want to eat anything because the worse they are, the more sick I get, completely understand that gag reflex!

    Hope that helps some! Let me know if you have any questions at all, this board is so great to get answers.

     
    Old 03-16-2006, 04:26 PM   #70
    aussie308
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    Re: Complex Partial/Temporal Lobe Seizures

    Hello Amy, I too have petit mals and occasionaly gran mals. I know exactly how you all feel after seizures. It's the worst!!!!! I also have auras and that "funny" feeling often before mine. I've had them almost exactly 4 years now. I am on 150 mg. phenobarb. and have a VNS implant (what your dr. refered to). I've had it approx. 15 months and it has helped. I still have seizs. about once a month (that time) but I will usually have one at a time instead of 4or 5 like I used to. I will still sometimes have more than 1 a week but they are not as bad as before. If you'd like further info on the VNS i'd be happy to answer any questions you may have.

    Nice to make your cyber aquaintance.

    Laura

     
    Old 03-27-2006, 05:52 PM   #71
    kathyjb
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    Re: Complex Partial/Temporal Lobe Seizures

    Hi there, I had this type of seizure undiagnosed for about 18/24 months before the 'biggie'.

    it was like a buzzing in my head, like a switch had been turned on, then deja vu and a terrible fear that I was going to die, sometimes, but not so often, I had jamais vu. When it was finished I would get a headache. But throughout all this I could still function to a certain degree.

    I could get this several times a day, every day for a couple of weeks then it would go away for a couple of months and I'd forget about it.... until it came back. Dilantin has kept me free from siezures for a while now.

     
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