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Old 09-27-2012, 11:20 PM
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Just had my first tonic clonic...


Hey everybody. My name is Ivan, and I just had my first tonic clonic seizure. About 18 months ago I had a couple dozen simple partial seizures, where I would get incredibly strong deja vu, then feel total euphoria for about 30 seconds before I came to. They went away until this weekend when I had the same deja vu, but then I lost consciousness and went into convulsions :/ Had an MRI and blood work, both came back clean. So the doc says they could come back anytime for the rest of my life :/ thought I would join a forum and meet some people with similar issues. Anyway thanks for reading!
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Old 09-27-2012, 11:28 PM
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Welcome, sorry to hear about you having a tonic clonic. The simple partial are freaky enough as is. But when things go up a notch that gets really scary. It is good the MRI and blood work came back clean though. People here are awesome, and it always nice to have people that can relate.
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Old 09-28-2012, 12:13 AM
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Thanks for the reply man! I hope to get some good info off here!
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Old 09-28-2012, 12:29 AM
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No problem, you'd be amazed at how much you'll learn from scrolling through profiles, and former threads. I learn something every time I am on here. Good luck.
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Old 09-28-2012, 01:00 AM
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Hi Ivan and welcome to CWE; Fighter is so right, you receive so much help here from people who have epilepsy or have a loved one who is with epilepsy.

I was wondering if your doctor is going to do an EEG or any other further testing?
Also, did he prescribe any prescription medication?

Try to always get enough sleep, keep the stress low. For some, caffeine and alcohol can be seizure triggers.

Take care.
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Old 09-28-2012, 01:23 AM
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Hey I am glad you came here. It takes guts to pick up and reach out. Man, it sounds like your pretty OK and that is good. Stay cool if you can and you will be able find great help here ( i mean that even if you do not "stay cool" )
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Old 09-28-2012, 04:11 AM
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Well maryk, I don't have health insurance. My family convinced me to go to the emergency room after the seizure. They did an MRI and bloodwork, and recommended I see a neurologist, but to be honest, I can't really afford it. So I think I will be just kind of waiting it out. Which is tough, because I feel like I'm in the dark.

My best friend was there when it happened, I actually collapsed in her arms. She thought I was trying to hug her. She's completely devastated. She thought I was dying and she can't talk about it without crying. So I have to put on a brave face for her, and for my family, but in reality I'm pretty scared. I feel betrayed by my body. Like I can't trust it anymore. And sitting in that cold hospital alone for 9 hours while they poked and prodded... I really just wish I had someone there to hold my hand. :/ It feels good to get this off my chest. Thanks for listening guys.
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Old 09-28-2012, 04:58 AM
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I understand the feeling of being betrayed by your body, and frustration with being poked and prodded. Have they got any idea at all what the cause might be?
There are some awesome people here, all who have a fairly good understanding of what your going through. But don't put on a brave face just for the sake of your family, if you're scared let them know. The whole process of being poked, prodded and dealing with what is potentially a life long illness is exhausting enough.
Good luck with everything, I hope things start getting better
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Old 09-28-2012, 10:09 AM
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Originally Posted by hippyhippyshakes View Post:
So I think I will be just kind of waiting it out. Which is tough, because I feel like I'm in the dark.
Well, don't wait too long because, believe me, you do not want those seizures to get any worse. Seizures beget seizures and since you've already had simple partials that are progressing to tonic clonic, you don't want to be in dark long.


Originally Posted by hippyhippyshakes View Post:
My best friend was there when it happened, I actually collapsed in her arms. She thought I was trying to hug her. She's completely devastated. She thought I was dying and she can't talk about it without crying. So I have to put on a brave face for her, and for my family, but in reality I'm pretty scared. I feel betrayed by my body. Like I can't trust it anymore. .
I know that awful feeling, also. I've been betrayed by my body many times. My now grown kids have seen me have those type of seizures when they were young. My daughter thought her momma was dying on several occasions and still has trouble talking about it. Like CrunchyFrog said, let your family know that you're scared because it is a scary thing to contend with. None of us are super human.

I hope you find answers soon. Hang in there and keep coming back to CWE to vent or search for answers.
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Old 09-28-2012, 10:43 AM
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Hi Ivan, welcome to the forum.

Sorry to hear about your seizures. You will find a lot of information and support here though. Make yourself at home.
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New to CWE? I suggest reading the proactive prescription and epilepsy 101 threads. Also check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback. More great stuff can be found in the list of the best forum threads.

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Old 09-28-2012, 10:47 AM
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Hello, and welcome, Ivan! I just joined here a couple weeks back, and I already love it. I hope you will, too.

I relate to what you said about feeling betrayed by your body and scared. I have tonic-clonics. I hate them. I hate coming to with people hovering over me all scared, I hate how I panic and freak out every single time when I realize what's happened (I don't ever know until someone tells me), and I hate how I feel defective and completely out of control. Ugh. It's nice to talk to people who have experienced what I have. It helps to know that I'm not alone, and to realize that there's nothing I did wrong and my life does not need to stop because I have seizures.


Summer
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Old 09-28-2012, 10:50 AM
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When mine started I remember it took me years to be able to talk about it. The temptation can be to keep it to yourself. Coming here and being open is a big step.
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Old 09-28-2012, 10:58 AM
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Originally Posted by no.guru View Post:
When mine started I remember it took me years to be able to talk about it. The temptation can be to keep it to yourself.
I wanted to keep it to myself, but if seizures progress from simple partial to tonic clonic, that can be very difficult. When my tonic clonic's started happening in public, there was no way I could keep it to myself any longer. IMO, it's better to let people know so they can be of assistance.
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Old 09-28-2012, 11:14 AM
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Hi Hippy, and welcome.
I agree too that putting on a brave face for everyone else that is scared may not be the best thing to do, for two reasons.
-Keeping things bottled up creates stress and tension inside the body and mind, and for many stress is a seizure trigger. The more 'cleaned out' and calm you can keep your thoughts the better, seizure-wise and for peace of mind.
-If those around you who are scared see you let your guard down and emotions out, it will be easier for them to do the same. Cry together if necessary, it's very therapeutic for all involved and believe me, it will feel like a ton has come off your shoulders. If she's your best friend she'll be going through a lot with you from here on in (this is assuming you have more and see a neurologist and meds...), and going through it together and her not feeling like an emotional trainwreck on her own will make it easier for both of you.
It's tough man, and we all feel your frustration with this one, but leaning on others is going to become unavoidable, may as well start now.

You sure started out in the right place by coming here. (((HUGS))) and hope to see you around!
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Old 09-28-2012, 11:34 AM
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Ivan Here are a couple links from the University of Nebraska
http://www.nebraskamed.com/neuro/epilepsy

http://www.unmc.edu/neurologicalsciences/epilepsy.htm

There are many on CWE that have to deal with no insurance, especially in the USA. Hopefully, one of them will be able to offer you advice on this. In the meantime, maybe you can check back with the hospital that saw you initially and ask if they would refer you to a neurologist or possibly check with your family's primary care doctor.

Take care.

Last edited by MaryK; 09-28-2012 at 11:44 AM. Reason: additional info
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Old 09-28-2012, 11:47 AM
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Originally Posted by Cint View Post:
I wanted to keep it to myself, but if seizures progress from simple partial to tonic clonic, that can be very difficult. When my tonic clonic's started happening in public, there was no way I could keep it to myself any longer. IMO, it's better to let people know so they can be of assistance.
Definitely not a good idea to keep it to yourself. They won't go away and will only get worse.
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Old 09-28-2012, 09:47 PM
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Hi! Welcome! I have learned so much here. Great people, fast replys too. Ive posted on some forums where no one answers for weeks or ever! Sorry to hear about your Tonic Clonic, I know how scary those are. My daughter has seizures and it breaks my heart , I wish I could take them from her. Glad your tests came back clean, that's great!! Hang in there

Last edited by LisaBee; 09-29-2012 at 01:41 AM.
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Old 09-28-2012, 10:53 PM
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Smile tonic clonics


Hi Ivan; welcome to CWE. So sorry a t/c has invaded your world. I have had t/cs for over 40 years. Some simple partials too. That betrayal that our brain pulls on us is a little on the scary side. This is by far the best place to be for continual online support and information. I joined in 2009 and the people on here are amazing. Are you on medication? There is a whole lot more to seizure prevention these days than just drugs. Educate yourself on every aspect of those options. Everyone is different and has their own triggers, a common denominator would be stressors. You will have to be your own health advocate. ((Hugs))
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Old 09-28-2012, 11:45 PM
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Hi Ivan, welcome. I remember how scared I was when I had my first t/c. It was so strange, I walked the trail for 40 mins, felt fine. Came home and was going to vacuum. I went to empty the cannister in the garage... Next thing I know I was in bed, calling my hubby and asking when he'd be home for dinner. He reminded me we had dinner at our usual time and he and my oldest were at scouts like usual on Monday nights. I must have really upset him, he came rushing home. My tongue was in shreds.

Sorry to hear you're having seizures. They suck ass.
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Old 09-29-2012, 01:54 AM
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Wow... Thanks for all the kind words and support! It's really been helpful to hear from people who have been through this before. And it helps a ton to know I'm not alone. You guys are the best.

I was wondering, how long does it take you guys to completely recover from a seizure? It's been a week now, and i still feel pretty worn out, and i seem to be fairly forgetful and slower than usual. Just not quite myself...
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