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Mdwall

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Howdy all. I found your site searching for some info and possibly some kindred spirits. I'm from Midland, TX and now live in San Antonio TX (job related)

My story goes like this, I had my first seizure at 13, then one a couple of months later. My mom took me to Scott and White and they did a sleep deprived EEG and basically said I have epilepsy big surprise there....

So I went on Depakote and was on it until I turned 17 at which time I was taken off since being seizure free for so long they felt it was no longer necessary. I didn't have one more problem until I turned 24 when I had another seizure. I didn't do anything about that one and the next year had a seizure on my honeymoon. Went to a doc and they said it was JME so they put me on Lamotrigene and I remained sezure free for 6 years. Now the occasional jerks early in the morning still would happen but if I laid down it would pass and everything would be okay so no actual breaktrhoughs occurred.

Last year after new years we were going home and I had a seizure which I attributed to drinking heavily the night before and staying up far, far too late for my own good. (a big nono I know) Thought all was fine until I had one in mid April of last year. The strange thing about that one was no aura no jerking and it hit about 9 at night. Went to the doc, had my levels checked and they said to up the meds and it would be fine so we did that and it was fine until June when the same thing happened again right after work so they did a sleep test and said I have sleep apnea and got a fun little machine.

Everything was fine until December when it happened again, again the upped the meds at that time. So everything was fine until last night when we were at dinner and I had a mild seizure, meaning it didn't last long and unlike every other time, I was not terribly groggy, or in pain or any of the usual after effects I have had for 20 years.

So my question after that wall of text is has anyone else had this happen to them? I'm really just beside myself about it all since 1. I don't know why this is happening, 2. It really bothers me for my family and my independance.
I don't really care that I have seizures, been that way for a long time, if I could just get back to having the jerks and disorientation beforehand I'd know to go lay down and let the storm pass.
 
Hi Mdwall, welcome to CWE!

If there's on thing I've learned here at CWE, it's that with seizures anything can happen -- they can change, they can stay the same, meds can help, meds and can make them worse, doctors can help, doctors can make things worse...

Seizures can change over the time for multiple reasons. It's possible that yours have changed because your brain has "gotten used to seizing". The little side routes that your neurons were less likely to follow in the past may have become major highways. Other things can play a role too: changes in your metabolism or sensitivity, your hormones, your environment, your reactions to stress, etc. Different things can lower your seizure threshold and act as triggers. If you can, try and figure out what factors, if any might have contributed to your seizures. (I know it can be tough if you don't have seizures very often).

If the Lamictal isn't helping consistently, and you've maxed out on your dosage, you might want to look into making dietary adjustments or using neurofeedback to see if they can help. More info here http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/ and here http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-501/

Best,
Nakamova
 
Thanks for the welcome!

I think what really is bothering us is that I have gone for 6+ years with nary a problem sure there would be the occasional early morning bouts with myoclonic jerks but if I laid down and ate something heavy it would all pass on and things would be hunky dory.

It's almost like this all started up without warning, I am and have always been under quite a bit of stress though as of late it has been more than usual at work. I;m plannig to go to my current dr. with a laundry list of this stuff and tell him that I would like a complete workup since it seems the meds are not doing what they're supposed to which makes me worry that there is some other outlying situation that is aggrivating my condition :(
 
Lamictal can be lowered when estrogen levels are higher, so if your hormones are changing, that could play a role. You might about getting a work-up to look at thyroid levels too.
 
Well they did a blood test, another EEG and another MRI. Blood test came back normal and oddly with a 100 mg increase in lamictal my levels are now a 18.5 where they were a 3.4. I've laid off the 15 cups of coffee a day and started back to taking vitamins A,C,E and a multi B. feeling a bit better and all. Did have a spell Saturday morning like the old days where I had some warning and could lay down til the storm passed and was fine and dandy.

Dr calls today to say that the EEG came back with some readings that wasnt similar to my old JME readings but the nurse wasn't really informative other than to tell me that now along with the lammy I now Ned to start keppra. The EEG and MRI were before my nutritional revisions so I'm kind of questioning the need for another drug but what do I know?
 
You could certainly ask your neurologist about holding off until you get a better sense of how you are feeling with your latest dietary changes. He can't force you to start on the Keppra.
 
One thing I have learned with epilepsy is change! Meds change, seizures change, doctors change. Futunately my family has been there for me every step of the way. (immediate family...ok, my husband and kids and some truly wonderful friends). Talk to your doctor, he/she needs to know. Pay attention to your body. Hang in there!
 
Thanks guys I guess what's driving me insane is that all of this has relapsed after six years of no trouble and it has been a long year of trying to get everything back under control. That and I really miss driving freely. At least it's not photosensitive or my other major hobby would be out the door
 
paradise survivor said:
One thing I have learned with epilepsy is change! Meds change, seizures change, doctors change.
Click to expand...

And as Nakamova said earlier, brains change, bodies, hormones change, treatments change. So do friends over the years.
 
I have almost the same experiences! on and off again with the Depakote until the docs put me on the Lamictal. I too had break through seizures a couple of times and always contributed them to stress, lack of sleep, poor nutrition, hormones......
I recently got married and 3months later we moved away from all of our friends and family in Michigan to New York for my husbands grad school.
I have an excellent family and friends to support me; sometimes I just get frustrated and wish i could be back to 'normal'
 
Oh my dear Flustered, normal can be sooo boring!! Think of all the floors you would miss, the ambulence drivers you would never meet, the neurologists that would never get to meet you...:roflmao:
 
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