Why oh why?

[Crystal11]

Hello everyone- I thought I would write about something I do before my seizures that for some odd reason, I think its going to work to stop my seizure.
Day before yesterday I had an aura which lead up to a complex partial seizure. I was at home with my twin sis and my friend- both of them have epilepsy and are able to tell auras pretty well. I was in the studio and started feeling odd- I went to lay down and my friend came in. She asked me something and I either didnt respond or didnt respond correctly. I sat up and she says I started walking around the studio and pushing my way past her. She tried to block me in the room so I would not walk around so much.
I told her that sometimes I feel I have to do something to get the seizure to stop. I have never been successful at this though- sometimes I walk around the house the whole time, I play with things like the bottom of my shirt or my necklace or try to keep doing whatever I was doing- as if that will make it stop.
One time- I had my XM radio next to me and I was so convinced that I would be able to stop my seizure that I was constantly changing the channel and had turned the volume up all the way. I was playing with it for a minute and then eventually was not able to do much of anything. During my seizure I tend to get really still and am not able to move or talk.
I think its so strange how I feel so sure that whatever I'm going will stop a seizure as if its something I always do and as if it always work- LOL. Kinda makes me laugh at some of the things my friend or my sis says I do during or before a seizure.
Another time in the studio- I was sitting at my desk but had a stack of keyboards on their stands next to me. My twin said I was playing with the buttons, switches, modulation wheels and knobs as if I was designing a sound- even though I don't remember this at all.
My friend video-tapes this seizure and it made me sad to see myself "gone" and not responding to anyone's voice or anything. I looked to far away and my friend said she could see it in my eyes. Under my eyes were purple too- I don't breath very well during a complex partial.

After the seizure I often feel like "I can't possible have another seizure." as if my brain feels new.
Anyways else have these feelings or thoughts?

Just curious-
Crystal

[Nakamova]

I've also felt there must be a way to make a seizure stop before it fully arrives. I've tried things like pressing the area between my upper lip and nose (supposed to be a good anti-seizure pressure point). I've put my head between my knees. I'll talk to myself, repeating over and over "don't seize". But I don't know for sure if it works -- if I don't have end up having a seizure, maybe I wasn't going to have one anyway.

I know the feeling of the brain being new. Like it's rebooted, and all the error messages have been cleared out... A cousin of mine gets electroshock therapy (basically an induced seizure), for treating his depression. He feels better -- and newer -- afterwards too.

[Crystal11]

Oh wow- I have heard of ECT/electroconvulsive therapy before. I thought it was so interesting when I found out that they are inducing a generalized seizure on the person and its in a controlled environment- but somehow it does restart things over again for the patient.

I think my meds need to be change or increase or something- I am having seizures again like I did before I had medications. I take two now and thinking that the Tegretol has stopped working.

I hope your cousin is doing somewhat better. I know treatment like that takes time.

[Elaine H]

Hi Crystal

Wow, it never ceases to amaze me how all our auras/S.P's are so incredibly indepth and intense, and of course, so personal to us. I sometimes feel a bit of a twit trying to explain what happens with my auras to loved ones. Imagine if you'd never had an aura, and someone tries to explain an aura...here goes. I can be transported back to either a dream or a scenario from my childhood days, I am there, I am involved in it, I am totally experiencing whatever my aura is about it can be an amazing high or an awful low. I used to see a man in a flat cap, pulling his collar up against the wind, he would be in a 1930's cobbled street, and would look at me over his collar, I haven't seen him for a few years now, I have also read about folk that only have an aura, only when they cleaned their teeth!! wow, the human brain is incredible, come on you guys on CWE, tell us all about your "wobblers" as I call them, make us all feel better that it's not just us going potty!!!

My book is coming along well, I've had a cover designed for it and a few folk interested in publishing it, there's a bit of stuff still to type, but I am getting there. Tell us about your auras eh? I will write about them, but of course I would never name anyone, it's just so good to hear from you guys!!

I sincerely hope you are all well, and lets all stick together whatever, I've pointed a lot of guys from Facebook towards this website, and everyone has loved it so far, lets all put our fingers up to the rest of 'em yeah? Be proud, hold our heads up, and sod the rest of 'em!!!

Lots n' lots of love

Lainey xxxxxxxxxxxxxxxxxxxxxxxxxxxxx

[LastSteps]

Now that I've learned the term "aura" simply as a prefix to a seizure of some sort, all of my "auras" seem to have been partial seizures. But I may have that term incorrect, now.

I've had a near 70% chance of relaxing myself when the aura comes up, as I used to have them all the time while on my initial drug, Dilantin. From giving myself a kneck massage, breathing very deliberately, to lying face down on my bed/couch/any floor.

I'd been driving for most of my life, and the breathing and focusing on driving when I'd feel a spin and tasted steel flavoring in my tounghe. Reminding me that the road and cars weren't abnormal was basically the key, and reminding myself who/what I was by my own touch (obvious breath or massage) would confirm it all for me.

Elaine, you may want to check with your doc for other options you have for your meds - it doesn't sound like your med is going to block your sensations on its own.

I wish you the best!

[Crystal11]

Elaine- wow that is interesting that you say your totally involved or taken back into a dream like state.
During my auras- sounds changed drastically condensing into the middle of the room and everything else around me is slowed down or distorted- I was told my interpreters were trying to figure out what i was signing because non of it made sence to them. You think you're aware and then the seizure is over- and you have no memory of it. How odd. You have to remember it through witnesses point of view.

Congratulations on your book going so well. That is awesome Elaine.

Take care-
Crystal

[Elaine H]

Now that I've learned the term "aura" simply as a prefix to a seizure of some sort, all of my "auras" seem to have been partial seizures. But I may have that term incorrect, now.

I've had a near 70% chance of relaxing myself when the aura comes up, as I used to have them all the time while on my initial drug, Dilantin. From giving myself a kneck massage, breathing very deliberately, to lying face down on my bed/couch/any floor.

I'd been driving for most of my life, and the breathing and focusing on driving when I'd feel a spin and tasted steel flavoring in my tounghe. Reminding me that the road and cars weren't abnormal was basically the key, and reminding myself who/what I was by my own touch (obvious breath or massage) would confirm it all for me.

Elaine, you may want to check with your doc for other options you have for your meds - it doesn't sound like your med is going to block your sensations on its own.

I wish you the best!

Hi There New Guy

Hope you enjoy your time on this wonderful site, you will meet some amazing people!
Thanks for your comment at the bottom of your aura piece, but in 23 years with this problem, I have tried all the drugs there are, had brain surgery twice, and it has become a bit of "an old friend" it can cause amazing highs, but horrendous lows, my specialist says he is determined to rid me of it once and for all, but it is the most difficult form of epilepsy to control, (trust me huh). It's just since the last op, my main problems are in the morning, I usually wake up from the most detailed and memorable dreams, so incredibly vivid, and there is a very fine line between sleep and that few minutes when we first wake up, I have to literally jump out of bed, switch the radio on, boogie round the bathroom, sing very loud, and let my brain know that I am no longer asleep, semi-conscious, I am positive the brain is more likely to pick up on epileptic activity when it is just waking up. I see my professor on 18th November and I am going to mention this to him, there are probably others that are experiencing the same thing, and if we don't discuss this with the "experts" how are they ever going to know and learn from us?
Having studied epilepsy at University for four years, I was interested to find out more about Dilantin, as it's one drug that I had never come across before, and was fascinated to know that it's the same as Phenytoin which is the generic name for Epanutin, I've tried that one too, many years ago, I came off it because of the awful side effects. I actually recall sitting in front of the doc, he said to me, "Do you realise that Phenytoin/Epanutin can cause acne and facial hair?", I was like, "Well, that's ok doc, because you won't see my spots and zits if I have a full beard huh?!" He just looked at me, and thankfully he did smile eventually! I hope your docs point out side effects that could happen, although I always think, we are all so different that I try not to take to much notice, I just think we should all be aware of what could happen, liver inflammation, hepatitis, rickets, and gum inflammation were also possibles.
Anyway, keep positive, enjoy your time on here, and I hope you get a lot of support from all the guys, we all have that one special thing in common eh? Yep, we are all completely bonkers!!!!!!

Lol

Lainey xx

[LastSteps]

Eileen,
I do think it's interesting that my docs seem more distressed than I am about my situation - like yours who had to stop and think before they realized you weren't terribly distraught about potential side affects.

Yes, I was on Dilantin and phenytoin, and the only 2 side affects were seizures.... and fat gums. I just wanted him to listen to my first side effect, really.

But yes, understanding my body and mind and learning to control when & what I can is definitely my focus. Every person knows about themselves better than a scientific percentage about us ever will!

-Ryan

[Meetz1064]

Elaine! Long time, girlie girl!

Yup, phenytoin, Epanutin & Dilantin are one and the same. Phenytoin is the generic for the other two--Dilantin is the American brand name. Epanutin is the brand name used elsewhere.

And I was on that stuff for 35 years........

[Ruth]

I got Steves Johnson Syndrome from Dilantin when I was 6 years old.

My parents told me that I was going to die. I am still here!
I decided not to drive when I turned 16 years old. I did not want to kill myself or someone else. At that time it was legal for a person with seizures to drive.

I take public transportation, walk or my husband drives me places.

I would never have ECT. Anything that brings on seizures is not for me. You have to sign a consent form for it.

[Endless]

Hi, Crystal,

Yes, me too, sort of. After a seizure, I do feel like the reset button is pushed. But I'm also usually really tired, too. I've tried lots of stuff to prevent a seizure from happening. Nothing seems to work for me. My auras aren't a good predictor, either. A seizure might come, might not.

You play with buttons or switches? Me, too. During my complex partial's, I've been known to press lots of buttons if there are any nearby. I've come out of it in the elevator with security on the speaker asking if I'm alright. Apparently I pushed the alarm button. Along with the buttons for every floor in the building. All I can think of to say is "sorry, my mistake" Then I ride out the elevator stopping at every floor.

[Ruth]

A couple of times I called my doctor about 50 times. I have done this to another doctor as well during seizures.

I just had a colonoscopy, during the prep I got dehydrated and felt seizures coming on. I called the doctor and he put me in the ER and gave me an IV and Lorazepam, only 2 mg. I was not allowed to take anything by mouth, that included my seizure medicines.

In the ER when I needed the nurse, I would press twice on the button. I did it out of habit from when we have to press twice on places in the internet.

Then I was taken upstairs for more prep for the colonoscopy. I started having seizures. Again I told them that 2 mg would not do it. They asked me if I wanted to cancel it. I had been cancelling it for a year. I asked the nurse to ask the doctor if he could stop the seizures so I could have the procedure done.

He had me take my medicines for the morning by mouth and rushed me in without the rest of the prep, gave me an anesthia. I got through it!! No polyps or cancer.

That was the last thing I rememberd, I think I went into seizures. The next thing I remembered was waking up and feeling alert. Then they sent me home. The doctor found out about the types of seizures that I have. Poor doctor!!