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So Monday I follow up with my neuro. My MRI was perfect. I can understand that.

I had originally been seeing my neuro for chronic classic migraines (15-20/month). He throws in my lap while I am there that he's pretty sure my migraines weren't stand alone events. I haven't had a single migraine in almost a month now since hitting 750mg of Keppra twice a day. My migraines were not helped by propanalol (beta blocker) or while on topamax (never made it passed 25mg as the day I was supposed to up the dose to 50mg I got put on an antiviral for shingles). My migraines have progressively gotten worse since (safely I can say) July of 2010. May of this year was when I finally said enough is enough and said something to my old family dr. Whom told me I needed to go to the neuro and here's some propanalol and imitrex/maxalt til you get there. My neuro mentioned that some people with nocturnal seizures can get migraines during the day from their seizure the "night" before. Great is all I was even able to say to him. Then tells me this is probably what has gone on for a few years, especially since I don't regularly sleep next to anyone who can be like oh hey you had a seizure in your sleep.

He THEN tells me, im allowed to start driving again in february unless I have an "episode" reportable to another dr (ie emergency room trip). But then goes on to tell me that he wants to repeat my EEGs in August of 2013 to see if I can come off of the Keppra.

The more I think about this... 1. If I was having nocturnal seizures, shouldn't I be waking my 2 year old up, who still co-sleeps 90% of the night any more and still slept with me all the time since march of 2010? 2. Did my neuro seriously scold me for being single since "I don't have anyone to ask"? 3. This to me is the most important one... WHY if my migraines are seizure related would I even want to entertain the thought of coming off of the medications that are keeping my migraines at bay and helping me to "not lose consciousness/time/keeping my seizures that I do have during the day under control"????? That's the one I can't figure out at all.

I have simple and complex partial seizures left temporal lobe by the way in case that helps (and so you don't have to dig for it).

Thanks for any input or advice and even just reading. Sorry its so long.
Lisa
 
Hi Lisa --

Neurologists recommend at least 2 seizure-free years before having someone try coming off meds. I don't think your neuro was necessarily suggesting that course for you (although he could have been if he's tone-deaf to your particular situation), but just letting you know what your options are. Many people with epilepsy (such as myself) can't wait to try going off our meds at the soonest possible interval.

And he probably wasn't scolding you for being single -- just pointing out that it would be hard for you to know what's going on without someone there to witness it. His tone could have been rude or clueless -- I've certainly known neurologists like that -- but his basic point was valid. It would be great if you could have a sleep study done. Then you could potentially see what's really going on, and what part of the sleep phase any disturbances occur in. Depending on what kind of nocturnal seizures you may be having, your 2-year old might or might not be disturbed by them. It also depends on how deep a sleeper your 2-year old is!
 
Hi Lisa, I saw your post and wanted to respond!

I have left temporal lobe seizures, and for years, had complex partial and grand mal seizures growing up. I was dx'd with Epilepsy at 18 months old. I was put on Keppra at around the age of 18, and then they also added Carbatrol to that as well. For years, Ive complained of having migraines. So bad, that a neurologist I was seeing a few years back, said it was seizures that were trying to come on, but not going into full effect. He told me to try the advil migraine pills, which helped, but didnt take it completely away. He then took my Keppra where I was taking 3000mgs a day, and increased it to 4000mgs a day, along with the Carbatrol, which at the time I was taking 1200mgs a day too. That lasted for about a month, and I had break through seizures, terriable terriable headaches, to the point where my husband had to hold my head for me because even moving my head a single little bit would make my head feel like it was going to explode! The neurologist wasnt listening to me at all. I contacted the drs office, told the nurses what was going on, and took myself back down to 3000mgs of Keppra. It took all the bad bad headaches away, but I was still stuck with having migraines that I was use to having all the time for years. Turned out the neurologist I was seeing, he got promoted to a different position, and I was put with his partner. That is who I am now seeing. His partner saw me for the first time, and said that one thing he believes why Im having the headaches is because the Keppra can have a different affect for everyone. Once you take your medication it raises your level and then starts to come back down again, til you take your next dose. He told me about Keppra XR. He said the difference between Keppra and Keppra XR is that the Keppra XR stays in your system longer and doesnt give the affect of going "up and down" like the Keppra would. He had to try the Keppra XR and within a week, all those headaches I was experiencing for years were gone! No more having to take advil or go through tons of bottles of ibuphrophen. Have you ever tried the Keppra XR? If not, I would recommend bringing this up to your neurologist and seeing what they have to say about it. For me, I know everyone has different insurances, but I was paying more for the Keppra, than I am now for the Keppra XR. So not only did it help me with the headaches I was having, but also turned out the be cheaper for me too. I wouldnt go back to just taking Keppra again. The Keppra XR has improved my life in so many ways. I know exacly where youre coming from when I read about the headaches and Keppra. Like my dr told me, some people's body reactions different to it, and for me, it was making my Keppra levels go up and down, causing the headaches. But the Keppra XR helped. :)

If you have any other questions, please feel free to ask. Im a stay at home mom, and have three little boys, two of which are in school. I know how it can be having epilepsy and dealing with all this, along with the other things in life. Hang in there. If you need anything, let me know! :)

P.S. --- I forgot to add, since having my VEEG in march of this year, I never had a grand mal, but started having simple partial seizures. Since then, Ive had simple partial seizures and a couple of complex partial seizures. My dr believes I might have outgrown the grand mal seizures, and is willing to try to get me off Keppra XR next year.... Thats if Im not too scared to try it!
 
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