Questions about my seizures.

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MuayThaiFighter

MuayThaiFighter

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Lately things have been pretty bad, and my seizures have started getting a very strong consistency. Things pretty much play out the same everyday, sometimes better sometimes worse.

The guess I was wondering if anyone had insight to what is going on with me. When I have a seizure I am a lot less aware now, which is concerning. So i'm not sure of everything I do. I can hear and feel things, depending on how long the seizure lasts.

My girlfriend has noticed the exact pattern and it was never like this when they were controlled. She says I tend to make a humming noise right before a seizure. I click my tongue on the roof of my mouth. I move my left index finger in the same pattern, and sometimes move the left hand in a repetitive motion. My eyes are usually rolled back all the way. I

If I lose awareness then I lock up on the left side. I get really stiff to the point that I am pulling muscle all over the left side of my body. I have no idea how long these last. My girlfriend said around 3 minutes on average. I also bicycle with my legs, or kick forward with the left leg. She has kept track of my seizures thankfully, so I have a good seizure diary to go off of.

I am unable to sleep before 4 or 5 am within the last 2 months. Rare occasions my body gives in, buts its rare. But like clockwork, as soon waking occurs I go right into seizures. These cluster for most of the day. It has me to the point that basically the day is just a blur. This is really bad considering I have to see Dr.s and I am unable to really get up.

Sorry for the long post, i'm just so confused and honestly pretty afraid. I fear going to sleep knowing how my days is going to play out. Soon i'll go up in my med and might try keppra again. Any insight would be great.
 
Sorry to hear what you are going thru.

what stood out to me is the fact you are not sleeping that much at all. When I don't get 8 hours sleep the seizure ALWAYS come on me.

Have you change meds lately?

It great that your GF is keeping a diary for you.
 
I'm sorry that things haven't been the greatest for you lately my friend.
I agree with jyearta, I'm glad that your girlfriend is keeping a diary for you. It could really come in handy for docs to help. Have you and or a doctor looked at your diary and notice any patterns? Questions to think about: Is there anything you have changed or anything happened lately that could have spiked your seizures?
With things changing, it's definitely something to keep an eye on and ask your doctor any questions or concerns that you may have.

Take care my friend and best of luck, keep us posted when you can. Hugs
 
MTF, sorry that your seizures may be getting worse. If you're less aware than in the past, it sounds like they may be generalizing faster into Complex Partials, and lasting longer. I hope you can get meds to get them under control soon.
 
All I know is that something is changing and has been for awhile. This makes me think the seizures aren't the same as they were in 2012. Because when I was put on Keppra the second time my reaction wasn't typical to say the least.

So im going to just make sure I have all my info for the neurologist when I see him. Maybe this time things will be more apparent to them. Still have no idea about the MRI, but im pretty sure that will come up clean, it always does. Thanks for the advice everyone.
 
My seizures have changed over the years, they got where they seem to come more often, lasted longer, and were stronger.

Now I'm thankful to say they are better than they have been.
could be I went through the change ( I much older than you)
It seems that hormones play a big part with our seizures,

Don't know if this will help you, just wanted to share.
 
I'm glad they got less intense for you. It does help and I really do think hormones do have a change in the seizures.
 
Oh mate, I didn't realise they were quite so debilitating and so frequent! But you are just starting on a new med right? I hope that helps, keep us posted. If all else fails, be a koala and get stoned on eucalyptus!
 
I am so sorry that it sucks so bad right now for you! I have found that my body chemistry changes about every 2 years or so. When that happens, then meds have to be tweaked as seizure activity increases. How long has it been since the med change? do you think that this could be adding to your problem? Big (((HUGS)))
 
Nakamova said:
MTF, sorry that your seizures may be getting worse. If you're less aware than in the past, it sounds like they may be generalizing faster into Complex Partials, and lasting longer. I hope you can get meds to get them under control soon.
Click to expand...

I was going to say the same thing. They sound alot like Complex Partial seizures. I really hope you get into the drs soon! I pray for you everyday that things will get better for you my friend! :hugs:
 
Things are just really weird right now. My mind is so fogged and I know it is because of the seizures peaking. I didn't sleep at all, I tried but no luck. So because of that I just clustered all day. I seriously hope upping the triliptal might help and adding keppra might help. I just feel like I downed a fifth of whiskey all the time. Like im stuck in a post ictal state.
 
have you started taking the Triliptal? I hope it works for you! I want to see you get better and be seizure free!
 
Yeah, I honestly don't remember when I started it. My memory just keeps getting worse, but i know it hasn't been long. The problem is the dose. It is way to small, and now I have to get someone to make a phone call to get it up higher. Ugh!
 
MTF, I am so glad you have a supportive girlfriend to help you. She sounds like a legend. Have you been able to get hold of a doctor about upping the tripital? Holding you in my thoughts xxx
 
She is a legend haha. I'm to out of it during the day to really get the med stuff figured out so she is calling to give keppra another go.
 
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