What was your first seizure like?

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phylisfeinerjohnson
Regular Member


Date Joined Oct 2009
Total Posts : 56
   Posted 10/11/2009 7:30 AM (GMT -7)   

 

I can remember being in the shower, washing my very long hair.  It was one of those old-fashioned showers with a heavy plate glass door and a stainless steel  handle that you had to turn to get in and get out.  There were 4 water jets…three coming from the side wall…and a shower head in the ceiling.

 

All of a sudden, it felt like my blood was rushing out of my toes.  As all my energy drained out of me, I thought: “I’m going to drown.”  Then as I fought with the locked door handle to get out, I realized: “I’m going to die.”

 

With one last  push, I managed to turn the handle before I went down.  And thankfully, my head landed on the floor, outside of the shower.

 

I was terrified.

 

phylisfeinerjohnson

 

 

 

Post Edited By Moderator (stkitt) : 11/10/2009 11:30:26 AM (GMT-7)


phylisfeinerjohnson
Regular Member


Date Joined Oct 2009
Total Posts : 56
   Posted 10/11/2009 10:01 AM (GMT -7)   
 
I just spoke to someone whose first seizure was at 18 months.  Poor thing fell out of bed and put her teeth through her lip.  (I guess it's a good thing that they were baby teeth?)
 
phylisfeinerjohnson
 
 
From you link:
 
 Phylis Feiner Johnson was a professional direct response copywriter for 30 years, before becoming a full time epilepsy advocate. She also spent 20 years with epilepsy. (They weren't pretty.) She writes from the heart to increase education, awareness and funding for epilepsy research.
 
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    Post Edited By Moderator (stkitt) : 11/10/2009 11:34:30 AM (GMT-7)


    1uglypug
    New Member


    Date Joined Apr 2013
    Total Posts : 10
       Posted 4/11/2013 6:12 PM (GMT -7)   
    I had my first seizure at work in 1998. I just passed out and woke up throwing up over the trash can. I was in my forty's and had never had a problem before in my life. I was getting exposed to flea spray with permethrin in it. I also had a lot of flea powder in my house, and my little dog was having seizures and was put on phenobarbitol. I cleaned out all the carpets in my house and got rid of all the permethryn and my dog no longer has seizures and no longer takes medication, but, I am still having problems. My wife was complaining about bugs in the house and had put the permethrin on my clothes. I think this has caused me to start having seizures, and now, I am on trileptal, which is lowering my sodium levels. I don't know if this is now causing me problems. Any one else having been exposed to pesticides and then start having seizures??

    ramge
    New Member


    Date Joined May 2014
    Total Posts : 4
       Posted 5/10/2014 7:52 PM (GMT -7)   
    Hello. I just read this post. I had my first seizure while I was sleeping 6 years ago in 2009. I have grand mal seizures only while I am sleeping, never had a seizure awake. I had all the tests done, CT Scan, MRI, and EEG. All tests came back negative showing no seizure activity. I used to take seizure medication Phenytoin 100 mg 2xaday, but had to stop taking it because I lost my job and health insurance in 2011 and could not afford the meds.s anymore. Plus I was experiencing memory loss as well. I have 1 maybe 2 seizures a month. Last year I had 10 seizures and now this year I have had 6 seizures so far. When I come out of the seizures, I am confused and extremely tired. It takes a half hour to an hr. for me to become fully coherent after the seizure. I have a bad headache and extreme nausea and always have to change my clothes. I have auras many times before the seizure and I have auras for days after the seizure. I have stomach nausea 5-20 times a month and I have headaches 5-10 times a month as well. I think I had absence seizures when I was a child. There are several times I remember zoning out and one time when I was little I was on the big slide looking down. The next thing I know I am on the ground with dirt up my nose and in my mouth. I don't remember falling. I have also fell several times as a child and hit my head. Dr. have not really diagnosed me with Epilepsy, they just say I have a Seizure Disorder.

    1uglypug
    New Member


    Date Joined Apr 2013
    Total Posts : 10
       Posted 5/11/2014 5:10 AM (GMT -7)   
    If you are only having seizures while sleeping, make sure there is nothing in your room affecting you! Could be termite treatment under your house seeping into your room. Do you have night seizures if you travel somewhere else? Have you treated your bed for 'bed bugs'? That has permethrin in it! Permethrin kill bugs by attacking their nervous systems, just like nerve gas kills people! Watch a roach get sprayed and see how they roll over and kick their feet in the air? It causes convulsions and then they die!
    I have found out, my sodium level runs very low, sometimes below the minimum 135 level. My wife has been after me for years about eating too much salt, which I have always eaten a lot of salt. My doctor had me on Trileptal. I got severely dehydrated and passed out, and found out at the hospital, my sodium was extremely low. I was so dehydrated, the attendant had trouble getting a blood sample from between my fingers, and had to thin it with the saline solution. The doctor at the hospital told me Trileptal lowers your sodium level. So, between my wife slamming me about salt, and lowering my salt intake, and the trileptal, and getting so dehydrated, I was a walking time bomb. Now, I am on the lowest dose of Kepra I can take because it makes me so drowsy on anything higher, and eating all the salt I can stand, and drinking all the Gatorade I can stand, I have my sodium ''all the way up to 137'' just 2 points above the minimum. I think most of my problems have probably been related to low sodium and the poison permethryn and the trileptal lowering my sodium! I haven't had a seizure in 14 months! Check your sodium level, and stay away from any pest control product containing permethrin or nervous system attacking chemicals. Even Termidor by terminex attacks the nervous system. Not having a seizure until in my late forties suggests to me something in my environment was causing my problems. Now, keeping my sodium levels above the minimum and staying away from poisons, I am seizure free. My dog was having seizures due to the Adams spray and flea powder, and I took all my powder coated carpet out of the house and only spray alcohol on him for the fleas, and he too is now seizure free! My vet even had him on phenobarbital and the seizures did not stop until I cleaned out all the poisons! Hope this gives you some ideas on trying something to help you.

    Post Edited (1uglypug) : 5/11/2014 6:19:33 AM (GMT-6)


    Katydid4
    Regular Member


    Date Joined May 2014
    Total Posts : 40
       Posted 6/1/2014 5:12 AM (GMT -7)   
    I believe I had my first seizure at 13. I woke up in the morning to get ready for school and my lip hurt I thought I had a chapped lip. I looked in the mirror and my braces were busted there were black and blue marks on my face blood on my pillow and blood on the floor. Doctors said I had a "drop fall seizure" never heard of that before... I never had any after that until I was 16 and had my first official Grand-mal seizure in front of my mom, dad and then boyfriend. That whole day I felt so tired and had a awful headache. The last thing I remember was sitting at the kitchen table talking to them and then I'm laying on the floor waking up and my family is freaking out. I'm almost 26 now with 2 kids and I married my then boyfriend and he's seen literally every seizure I've ever had so he knows what it looks like and knows what I look like before I have a seizure. If I'm lucky and I consider a aura lucky so you can lay yourself somewhere safe before it happens. When I have an aura then a seizure my aura feels like the top of my head floats off and I get really hot and space out. I mumble my words and get confused then my heart starts beating really fast and then I go into a grand-mal seizure. Now if it's a petit-mal seizure I don't feel anything but tired afterwards and my husband says when I have one of those I just stare off for a little and either my hand or foot will twitch and then that's it. So for me those are what my seizures feel like. I take Keppra 1750mg twice a day and Lamictal 350mg twice a day and I have a VNS (vagal nerve stimulator) The longest I've been seizure free is a month. Hope this helps. Take care!

    1uglypug
    New Member


    Date Joined Apr 2013
    Total Posts : 10
       Posted 6/1/2014 7:57 PM (GMT -7)   
    Make sure your sodium level is staying above 135, which is the minumum. I found my sodium was running low. Since I have been eating lots of salt and drinking lots of gator aide, I have been seizure free. I am still taking the Keppra , 500 mg in the morning, and 500 mg at night, just in case. I have a habit of not drinking enough water too and have to watch getting dehydrated. I was seizure free all my life until I met my current wife, who was always after me to not eat meat and so much salt, which I grew up on. Changing my diet and cutting my salt intake almost killed me!! I now eat what I want like I always did growing up, and feel lots better. Taking all these steps, eating lots of salt and drinking lots of gator aide, my sodium level is still only running around 137, just two points above the minimum!! See what your sodium level is. Low sodium can cause seizures!... Who knows what is too low for different people!!
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