Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

Myoclonus? Epilepsy? Too many buzz words!

Fri, 03/09/2007 - 06:53
I'm not alone! I was reading back through the archives of these forums, and came across a story about a girl in her early twenties who sounded as though she was experiencing the same thing as me. Strangely this gave me huge comfort, and has prompted me to finally post something. For the last couple of years I've been been experiencing twitches/jerks through my entire body. Sometimes they're mild, only barely a ripple through the muscles and a slight jerk, but there have been really scary ones when they're very violent, arms and legs go flying, chest tightens, possible eyes close (I'm not sure, I'm too focused on the fact my limbs suddenly want to dance). My boyfriend has often told me to go to the doctor over them and worries a great deal, so they must be fairly weird to witness. I did go to the doctor in November of last year (2006), who referred me to a neurosurgon, but due to my lack of insurance, I have to wait til late 2008 for my appointment. One of my main problems is the fact that the jerks are so spread out and unpredictable. This is making me confused, as everything I've read about myoclonus implies that it's fairly constant. Mine don't fit that pattern, sometimes I can have several in an hour or spread over a day, other times I have only a single one, and I don't have them every day. In fact, they're spread out all over the place, I can't detect a pattern. I noticed some people talking about auras, and I know that many times I can feel a weird sensation beforehand, which tells me one's probably about to happen. I have no idea exactly what is going on, everything I read is almost right, except for some details. Sometimes bright lights (not necessarily strobing, but certainly flashes, for example when a movie depicts lightning directly on screen) cause a couple, sometimes they come out of the blue, or at least I don't notice a trigger. I don't normally get them in the morning, as with JME, I don't get them with caffeine (I mainline coke and have done for years), and as mentioned above, they don't happen most of the time, they're quite spread out. Does any of this sound familiar to anyone, and could you give me some idea of what's to come, in terms of what the doctors will say? I feel a little hypochondriacal (such a cool word) posting on here when I'm almost certain it can't be epilepsy (though I think that's more because I associate epilepsy with falling down, convulsing and losing consciousness, even though I know there are many many more forms than that) and I'm worried I'm blowing a silly little thing into a huge thing. However, whenever I get hit by another one, I get freaked all over again because it's quite scary. Advice would be appreciated! (Also, sometimes I think medical websites should be password protected so people can't scare themselves to death)

Comments

Re: Myoclonus? Epilepsy? Too many buzz words!

Submitted by maraj on Fri, 2007-03-09 - 08:48
I think it sounds like JME. I did get my jerks mostly in the morning or when I was tired, but there was no pattern. Epilepsy comes in many forms! Please don't wait until the end of 2008 to go to a doctor. I was told recently by my doctor that even though I have not had a grand mal seizure, doesn't mean I never will. I know the insurance issue sucks, but this is your health. If possible, try to see an epileptologist. I have found that general neuros do not always know enough about epilepsy. Best of luck to you!

Re: Myoclonus? Epilepsy? Too many buzz words!

Submitted by Jersey on Sat, 2007-03-10 - 00:26
I didn't get my first jerks until I was around 18/19, but was diagnosed with temporal lobe epilepsy when I was 16. They rediagnosed me with juvenile myoclonic epilepsy. I've only had three grand mal seizures(the first and second were 6 years apart) but my jerks were really bad and kept getting worse. When I was sick, didn't get enough sleep, or was woken suddenly they got even worse. I've thrown two brita water pitchers across my kitchen from a jerk just trying to pour water to take my meds in the morning. I had one on a sidewalk and my ex said I "bounced" i hit the concrete so hard. Although the above were obvious triggers, I'd get them for no reason. The jerks associated with JME are unpredictable.

Re: Re: Myoclonus? Epilepsy? Too many buzz words!

Submitted by drusilla_rb on Mon, 2007-03-12 - 16:03
I'd really like to get mine checked out sooner, I think I may attempt to get an earlier appointment. I had a fairly bad day today (for me) with many small mild jerks, in addition to some violent ones. I didn't realise tiredness could cause jerks, thanks! I have one other main question. If you have a disorder such as JME, do you get jerks every day? Or is it just once in a while? If it's the latter, is medication every day really necessary? (Btw, thanks for the replies, they're oddly comforting!)

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.