Coping With Epilepsy Seizure Study
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  #1  
Old 03-14-2008, 09:00 PM
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New Poster From Canada


Hello everyone, I hail from Winnipeg Canada.

my first epilepsy seizure was back in June of 2007. I was in the hospital for a pain surge in my head, but was in emergency when I had the seizure. Apparently I saw the nurse and went to go to the washroom and they heard me fall against the toilet and I was unconcious shaking.

They recorded me having grand maul epilepsy seizures and I was unconcious for close to four hours.

ever since then. I have been having pain in the top part of my head and it goes from their down to my forhead. At first I feel like they are migranes, but these pain spikes were registered on an EKG they did on me about 5 weeks ago.

It makes me dizzy, I see stars, and my body shakes quite a bit. I feel sick a lot and unable to move at times.

The doctor's can't give me any pain medication because that might trigure a full seizure, so I feel that I am caught between the lines. Any suggestions?

I have been to the emergency countless times and also seen my doctor every month.
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  #2  
Old 03-14-2008, 09:01 PM
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PS I am 32 single, and living off of dissability, with severe chronic depression and chronic pain I feel that I have a constant fever, and I often smell a burning sensation. After every CT scan I smell the radiation very badly and it makes me sick to my stomach.

Last edited by Mikeink; 03-14-2008 at 09:04 PM.
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  #3  
Old 03-14-2008, 10:42 PM
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Welcome! My name is Jon. I have had epilepsy since I was 12. I am also living off of disability just like you.
Thats so lame you have to deal with all that crap, depression and pain and such. Im not a doctor but Ive never heard of pain medication causing a seizure, that sucks they wont give you any.
As far as your depression goes, just hang in there and things will get better. If you ever need to talk about anything, me and Im sure anyone else on these forums will help you the best we can. We all have problems and we all help each other out. The people on these forums are great. Hope to hear more from you.

-Jon
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Old 03-14-2008, 10:47 PM
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Hi Mikeink, welcome to the forum.

I hear that acupuncture can be effective for chronic pain, but I have no personal experience with it.

I'd suggest keeping a detailed journal on your neurological issues, diet, sleep, etc. and see what patterns develop over time.
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Check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback
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  #5  
Old 03-14-2008, 10:56 PM
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thank you for responding. I was a bit nervous in typing this out. I don't really open up to people well.
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Old 03-14-2008, 11:02 PM
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I hear ya, I dont open up easily either. But hang out on the forums and youll start to get to know people and itll get easier.

Bernard has made some excellent suggestions, you should try them.
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  #7  
Old 03-15-2008, 01:00 AM
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Mike!

Welcome to CWE, and glad to see
another Canadian onboard! Sorry
you are having to experience all of
this. Have you consulted with your
Neurologist or Epileptologist? If not,
Have you considered looking for one?

The banner below can be of assistance,
Just click on it and go ...



Feel free to make yourself a home here
and browse around!


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Sharon

Advocate & Member of


Head Storms - Resource Center
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  #8  
Old 03-15-2008, 01:03 AM
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Hi Mike - Welcome to CWE
Posting does become easier. I am so sorry that you have been dealing with this. My daughter also started having seizures in June of 2007 as well. She is now 16.

Learn as much as you can about the disorder and it will become easier to make decisions and to manage it. My daughter at the moment is not on any medication and nutritional choices, supplements and now neurofeedback are ways that we are controlling her seizures.

I hope you find info here that is useful.
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Old 03-15-2008, 02:24 AM
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Another Canadian, Awright!


Welcome from Vancouver Island. This is a great place. I often am pretty quiet but there are some pretty interesting conversations here & with some pretty interesting characters that I just have to participate in.

I've had epilepsy all my life but I've still learned lots from this place.

Anyway hope you lots out of this site.
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It's no longer a question of staying healthy. It's a question of finding a sickness you like.
-Jackie Mason
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  #10  
Old 03-15-2008, 03:23 AM
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wow thanks all for your responses.. By the way my name is Michael Doyle. I chose mikeink because I like to write. With Ink in my name, always liked that nickname online.

The past two months have been especially hard for me because of the amount of pain in my head. Its a surging pain that makes me feel sick and really knocks the wind out of me.

I just woke up from a bad dream and found myself twitching in bed. Like big twitches. But I am calming down and telling myself its just anxiety because of the CT scan.

My mom, and dad have been calling me a lot this week making sure I am ok. I live in a group home that supports people with dissability. So along with my depression I have anxiety disorder.

During the spring time I fight seasonal allergies with Sinusitus. I get very dry throats, and a lot of preasure on top of that.

Roll all this into one package and you have my medical physical condition. That takes its toll on my mental state too. I just wish that I can find a balance.

But you guys are great. This has been so helpful to write this out and talk about it on a community.

Thank you so much for your warm invitations...if you are reading and not responding; thank you so much for your time too. I do hope that you respond, but I understand if you dont, or can't.

Kindest Regards.
Michael Doyle.
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  #11  
Old 03-15-2008, 07:05 AM
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Welcome Michael




Bernard's design of this web site as a home really represents it well. It can feel like a home with an extra family. Lots of support for each other, plenty of educational ideas, and still room for laughter (my favorite medicine).

Always room for more Canadians!

As far as your headaches, you will find some good links around here for migraines if that is what you are having. Either way, find a GOOD neurologist. They should be able to work with others to help your pain management.
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  #12  
Old 03-15-2008, 06:18 PM
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Talking Nice to meet you, Mike!


Make yourself at home here. You'll find plenty of us to talk to, and feel free to vent if you need to.

Wish I knew what to tell ya about the pain med thing, but Mr. B DID bring up a good idea about acupuncture. My 94 year old grandmother was even using it before she died...with success.

I like your screen name......I'm a writer too.

Welcome!

Meetz
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  #13  
Old 03-15-2008, 08:07 PM
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Hi Mike,

Glad you're here!! This forum has been really helpful to me. I think you'll find it helpful also...very supportive and good info. I am newly diagnosed with seizures..howver I've had them for yrs. I also have chronic pain. My anxiety/depression does get bad when I feel so terrible from the seizures and pain, so I understand completely. For years..they thought it was just panic attacks. I kept telling Dr. after Dr. about these "spells" very specifically and I didn't have panic attacks. It was completely connected to these spells. I eventually went to a Pulmonolgist and found out I have sleep apnea and restless leg. The night spells continued..went to many more drs. and finally an eeg showed the seizure activity. I knew all along something was wrong. I did not realize pain meds can trigger seizures. See, I am still learning! My seizures were awful after my surgery in the hospital..I also read something about anesthesia as well. We didn't know what it was at the time and I kept telling the hospital how weird I was feeling etc.
Anyways....just wanted to say Hi and welcome and glad you're here!

Michelle
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  #14  
Old 03-16-2008, 08:53 AM
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I understand seing a dozen doctors myself. Mostly in emergency. They tell me they really can't do anything for me before a seizure or after a seizure. They said that emergency can only really help during a seizure. I really got upset my last visit with them. Some of them thought I was seeking attention because the amount of visits. But they did an EKG and found high spikes in my head. Now I'm hesitant on going to the emergency, but sometimes I feel the need to go. So i'm trying to fight a new routine for me.

Michael.
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