Never found anyone to have this kind of seizure besides me!

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annietn41
New Member


Date Joined May 2009
Total Posts : 2
   Posted 5/17/2009 12:45 PM (GMT -7)   
I have weird seizures that are so hard to explain - I have found no one who has seizures like mine ever - no test has every shown me to have seizures - I have had every test there is even a stay in the hospital on video monitoring - took me off my pills completely and had me press a button when they hit - I did and nothing showed up. My doctor told me that is very normal that sometimes depending on where the seizure comes from it won't show up. He said the fact that the meds help (I am on 600 mg per day of Lamictal) proves I have seizures so I accept it. I have had what is known as abdominal seizures too a long time ago before I finally got on meds.

I have no auras or anything. If you were with me you wouldn't know unless you knew me. My family says they know immediately by the way I act - just kind of out of it. I could be at a shopping mall and someone who doesn't know me would have no clue I was having one. I will try to explain how I feel.

I can't understand written words or spell them - I would be watching tv and it will be like someone is speaking a foreign language to me - I can't understand a word they are saying. If I am on the phone and I start having one I won't be able to understand the person speaking to me again sounds like they are speaking a foreign language. I also get very irritable as in I want no one to touch me and no one to talk to me - just want to be myself when it is happening. They can last up to 5-10 minutes before my head clears completely. At night when I'm tired they are very bad whether on meds or not. Before the meds I was getting them 20-50 times a day - started off very slow once or twice a month then over the next 5 years increased up to 20-50 times a day. I had to quit work as I worked on a computer support helpdesk and was on the phone a lot so you can imagine why I couldn't work. I work at home now doing a job that I can do any time I want to - 24/7 (writing) so works out for me perfectly. It is very hard to live with and it makes me mad that doctors just pass it off as it's no big deal - one said to me "at least you aren't having grand mal seizures". I looked at him and said "do you realize if you had this you wouldn't be able to be a doctor - they would take your license away from you". I had another doctor tell me that my kind of seizures are harder to control than someone with grand mals. When I'm really tired and having one I couldn't tell you what my kids' names were. It's like these pill are now messing with me and taking so much away from me as in memory problems now. I will see someone I worked with years ago at a store or something and have no clue who they are. I act like I do but I don't. Lamictal is the only thing I have found that works tho - I have tried everything almost. I still have them but only a couple of times a day - never go a deay without one though. My doctor has told me basically I am the best I can get and I tend to agree with that. Living with 2 to 3 a day is nothing like 20-50 so I'm okay. One of the main problems I have is my family does not understand how hard this is on me. It makes me depressed that I finally get time to myself and I can't even sit down and read a book every time I want to. It really sucks big time. No one in my family has this so I have no clue where it came from - never had head trauma or anything. My doctor said when something runs in your family it has to start with someone and this has started with you. :(

Anyway - sorry so long - you have no idea how much I need to vent - I feel so alone in this world as everyone acts like it is no big deal but to me it is a very big deal. Anything that disrupts your life is a big deal to me. Lamictal makes my eyes really blurry if I don't eat enough - I get lost really easy now - driving in my neighborhood and can't find my street. I know this is the Lamictal and not seizures. Anyone out there with these kind of seizures? I have been researching this for so long and have found no one. Sure would be nice to talk with someone that had this so they can understand how hard this is on me. Oh I'm female - 43 - diagnosed when I was 33.

Rita

RanMan
Veteran Member


Date Joined Feb 2003
Total Posts : 665
   Posted 5/17/2009 10:03 PM (GMT -7)   
annietn41 said...
I can't understand written words or spell them - I would be watching tv and it will be like someone is speaking a foreign language to me - I can't understand a word they are saying. If I am on the phone and I start having one I won't be able to understand the person speaking to me again sounds like they are speaking a foreign language. I also get very irritable as in I want no one to touch me and no one to talk to me - just want to be myself when it is happening. They can last up to 5-10 minutes before my head clears completely. At night when I'm tired they are very bad whether on meds or not. Before the meds I was getting them 20-50 times a day - started off very slow once or twice a month then over the next 5 years increased up to 20-50 times a day. I had to quit work as I worked on a computer support helpdesk and was on the phone a lot so you can imagine why I couldn't work. I work at home now doing a job that I can do any time I want to - 24/7 (writing) so works out for me perfectly. It is very hard to live with and it makes me mad that doctors just pass it off as it's no big deal - one said to me "at least you aren't having grand mal seizures". I looked at him and said "do you realize if you had this you wouldn't be able to be a doctor - they would take your license away from you". I had another doctor tell me that my kind of seizures are harder to control than someone with grand mals. When I'm really tired and having one I couldn't tell you what my kids' names were. It's like these pill are now messing with me and taking so much away from me as in memory problems now. I will see someone I worked with years ago at a store or something and have no clue who they are. I act like I do but I don't. Lamictal is the only thing I have found that works tho - I have tried everything almost. I still have them but only a couple of times a day - never go a deay without one though. My doctor has told me basically I am the best I can get and I tend to agree with that.
 
Hi Rita,
 
I get the same thing as you, my Neurologist calls it a "speech arrest"
 
I've been on anti-convulsant medications since 1979. (I also have ulcerative colitis which I also take medication for).
For the last few years, I have these staring episodes and speach arrest. I'm aware of what is going on around me but I can't respond. My neoro. says they are petit mal seizures, brought on by stress. It usually strikes after a stressful event, when your defenses are down. If I wasn't on the meds then these would be full blown gran-mal seizures.

I have been on the same meds for 28 years (dilantin and pheonobarbitol) and because of the long term use, It would be risky to change meds because I could have lower brain stem damage.
When I have these staring spells, everybody looks at me funny.

One thing that would happen is if I'm reading, all the words would be garbled for a few seconds.
In my case it's just something that I have to accept.

It got to the point where my employer of 30 years had to let me go b/c they were getting worse and affecting my work by slowing me down, not responding to callers on the phone, getting confused easy, not being able to multi-task any more, etc.

I totally understand what you're going thru.  Ppl. look at you like you have 2 heads.

The actual petit mal seizure only lasts a few seconds but I get "Post ictal" after, irritable and confused for about 10-15 mins.after before my head gets back to normal.



Randy


Diagnosed with Epilepsy & Ulcerative Colitis.
Current Medications: Diantin 275mg, Pheonobarb 150mg, Asocol 3,000 mg.


annietn41
New Member


Date Joined May 2009
Total Posts : 2
   Posted 5/18/2009 12:45 PM (GMT -7)   
Well, kind of like me - I get them out of the blue and not stress related at all - I could be sitting down watching TV or something. It's really weird. Like this morning my daughter stayed home sick from school on Friday so I had to write her a note. Please excuse Jessi from school on Friday. She was not feeling well. That is what I had to write - I wrote please excuse Jessi and that is when it hit - my daughter had to stand next to me and spell out the rest of the words (she is 12). It seems when someone comes up and breaks my concentration it will hit sometimes. Noises get really loud say if I'm sitting in the quiet and someone turns a radio on realy loud all sounds are like ten times louder than they really are. Do you get this too? My doctor just said had to be part of seizure activity but this happens whether I'm having a seizure or not. I don't know - just seizures - just have to live with it and know I'm as good as I'm ever going to get. Thanks a lot!

Rita

Chiyo
New Member


Date Joined Feb 2009
Total Posts : 15
   Posted 7/22/2009 4:42 PM (GMT -7)   
HEllo i am new to this site i was diagnosed with epilepsy in december of this year 2009 i had a grand mal seizure, my father had severe epilepsy also he actually died in 1999 from a grand mal. anyways i have been on Keppra i take 3000mg daily and i think i might be having these same issue's as well it irritates me to death and i feel like an idiot i couldnt figure out why i felt this way untill i read these post tonight!! So maybe i need to go visit my Neuro again and let him know whats going on with me.
Thank you all for sharing your storys i sometimes wish my dad was here so i could ask him about things with the epilepsy he had every seizure known to man so it would be interesting to know if maybe that is my problem as well.
Thanks to all
Chiyo, Troup. TX

Chiyo
New Member


Date Joined Feb 2009
Total Posts : 15
   Posted 7/22/2009 4:58 PM (GMT -7)   
Ok well see i do the same things lol i was diagnosed in December 2008 not 2009

shellsncheese
Regular Member


Date Joined Aug 2009
Total Posts : 35
   Posted 8/2/2009 11:03 AM (GMT -7)   
    I have some of those things happening to me also. I am 33 yrs old and i have had seizures since i was 15. But i have been seizure free now for about 6-7 years. But the last one that i had 6-7 yrs ago and the ones before that i would just stare off into space. You could be talking with me and i wouldn't respond to you. I couldn't concentrate on the conversation. I would just stare off into space. Then a few minutes later i would go into a grand mal seizure. I have two older brothers and a twin and my oldest brother has seizures as well. But not my twin. Why is that? My kids show no signs of them either which is a blessing in itself. Doctor has said that mine are brought on by stress. And i take generic Tegratol 800mg a day for mine. It seems to be under control for the most part. But i do get some sensations like i feel like i could have one. That is really scary.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/2/2009 9:47 PM (GMT -7)   
i have the same thing happen to me sometimes. It only lasts for about 10 to 15 seconds and happens maybe 4 or 5 times a week. Usualy if i am really tired. I can do everything but write and understand words. i can understand numbers though. Written or spoken. I found to straighten it out, i can make the room quiet and then concentrate on one sentence. something simple and just read it a few times until it starts to make sense. Or if it shoudl happen when i am not reading, i recite the pledge of allegiance (just because its something i know) and that clears it up.
I take 800mg of lamictal and 100 of phenobarbital.

Ranman-I had UC too, (i had surgery 2 years ago and am CURED now, woo hoo, lol) i have seen alot of people with both. I always wonder if there is some kind of connection.
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