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Hey there, I thought I'd go ahead and make a forum post to introduce myself since I had started to browse around on the forums.

I was diagnosed with JME in November 2011.

Although the dx is new, the condition is not. I started having spasms in my neck, shoulders and upper arms around the age of 18 (I remember doing them in my first job, and people looking at me weird). I always played it off, and put it down to a shiver or just a twitch, and never really gave it much thought at all.

Move forward 10 years later and I end up having two sets of sinus reconstructive surgery. It turns out the right side of my head is a bit messed up. I had missing and mis-shaped sinuses, and an enlarged right tonsil and enlarged right turbinae (parts inside the nose). Anyway, The first sinus surgery was to drill a hole into my right sphenoid sinus (behind the eye and below the brain) to allow an infection to drain. The hole was drilled in the wrong place, and ended up entering the left sinus, so a second one was done in September 2011.

After that I noticed that the strength and frequency of the spasms was increasing, and the muscles around my right eye had started to constantly twitch, pretty much 24/7. I thought it might be related to the amount of phengran I had been taking to counter the pain medication following the surgery. I read that phenegran can reduce dopamine levels and lead to muscle spasms (and in my reasoning, make existing ones worse, right?). It got to the point that I was driving home from work one day (70 mile interstate drive each way) and I had a spasm that was so hard I pulled the wheel down sharply and lurched into the lane beside me. (Thankfully I was in the outside lane and there wasn't anything next to me).

That was the impetus to go and speak to my primary care about it (and my insurance was maxed out from two surgeries, so they were paying 100% of everything!). She originally put me on requip to try and balance out my dopamine (which would confirm the phenegran idea). After a week there were no changes, so she referred me to a neurologist.

I spoke with him, and explained everything (including some leg pain I had started to have). He took me off the Requipd and started a 75mg BID dose of Lyrica for neuropathy, and 250mg BID of Keppra to see if the spasms reduced, as he thought it may be some kind of myclonic jerking. He also did an EEG (nothing conclusive, slight elevation on my alpha waves, but didn't have a jerk during the base line EEG), EMG (confirmed some neuropathy in my legs, but nothing found in my arms, again no jerks during the test), MRI of neck and brain (neck was fine, nothing pressing any nerves although some signs of arthritis in C5 and C6 which could have been from the sudden jerking movements over the years causing them to rub together. Brain had two white spots in the right frontal lobe on the MRI T2, which might have suggested MS, although unlikely).

Over the course of a month I've had my Lyrica increased to 300mg BID and Keppra increased to 1000mg BID. My leg pain is gone, my eye has stopped twitching, and I think I've had one jerk in 3 weeks (when I first started, I was having jerks maybe 20-30 times a day).

So, the medication I am on is controlling the seizure activity. An 48 hour EEG has been scheduled for march, but I am thinking of cancelling it unless the results of it would change the course of action my neurologist is taking (new year means a new deductible to meet, and I can't afford tests for the sake of testing anymore).

So, that's about it. Sorry it's long and rambled. I've never really taken the time to write it all out before, and the people I've talked to have heard it in bits and pieces.

About me: I'm a 29yr old guy who lives in Mississippi, but moved here 4 years ago from England. Right now I consider Mississippi my home, but I guess that could always change. I don't think I'll go back to England though (although all of this would have been cheaper with our healthcare back there!). I work as a computer programmer. In my spare time (and when not medicated) I like to play video games, watch movies, go bowling, and run table top RPG games for friends. Back in England I used to go cave exploring and rock climbing too, but I've not found an outlet for that in MS, although I am looking at Urban Exploration to feed my exploring urges!

I've not been on my medication for long, but I am experiencing some side effects already. I'm definitely moving slower than I did when I take the meds, some of which is caused by the lyrica, and some is that I have to move slower because my coordination is also worse when medicated. If I try to move too fast, I can fall over. I drop things at night, but I am not sure if that's med related. I've put on 30lbs since I started my meds, my appetite is through the roof. I've also started to get more depressed and irritated since I moved to the high dose of Keppra (I was told it could happen at lower doses, but it didn't until now). I have patchy short term memory, and I have a real bad time with word recollection when medication (I've never experienced memory problems before, so these are quite distressing at times, and I can start to get into a panic attack when talking at work).

Wow, I am unloading here. Sorry!

Well, that's it. I'm here, I'm medicated, and I don't remember where I put my cell phone.

I look forward to getting to know a good number of you, and I hope I don't break your site. if I do, I'll try and fix it for a very reasonable price!


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Welcome Brittishguy. Im new 2 and I have found the forum to be very helpful. I wish ya da best! I hope you find your cell phone : )


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Welcome BritishGuy,

I take Keppra- 3000 mgs/day and it can/does cause depression, memory loss, etc., but if it gets worse and unbearable, call your neurologist. I don't know about Lyrica, never took that medication.

What part of Mississippi are ya'll livin' in? I used to live in Memphis. Not many places to go rock climbin' along the Mississippi, but out here in Colorado, there are lots of mountains to climb.
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