Myoclonics

[Trinity]

My diagnosis is idiopathic generalised epilepsy and I've always had tonic clonics only - well officially anyway. I haven't had tc for 11 years. I have had muscle jerking/twitching before but my last few EEGs have been completely clear and they only happened very sporadically. That is until the last 2-3 weeks where I've had lots. I had an EEG yesterday with a number of twitches at the time of the test which showed up as spike wave patterns. The doctor diagnosed me with myoclonic seizures and I am now on Topamax as well as the Epilim I was already on.

 

[lindsayschu2]

My guess is your twitching and jerks were always myoclonics, but they weren't tracked on the EEG previously. I know for myself, the myoclonics showed up later in life--I was in a car accident and had a head injury and that may be why. I suggest taking special care on eating a healthy diet to be sure you are getting lots of potassium, magnesium and calcium--not only can topamax upset electrolyte balance in some people, having a good level of all of those can help to calm myoclonics--I've greatly reduced my frequency through diet and supplementation (though I only get potassium through diet, which is recommended). B12 supplements can also help if you are low--if your doctor hasn't ordered a blood panel, you might ask to have a metabolic panel and B vitamin levels to see if you are in balance, since you've had a recent increase in seizures. I hate to sound like a vitamin commercial but I have been struggling with myos very seriously for the past year and learned that, at least for me, my nutritional balance was at least as important as meds in gaining better control.

 

[Trinity]

Thank you, your response is very helpful. I have had a blood panel and everything came out clear but my diet can definitely do with some perfecting so I'll try to keep in mind the things you said. Thankfully I enjoy eating nuts, yoghurt, cheese, bananas, mushrooms and baked potatoes with skins on them and also like milk. I like chocolate too so perhaps I need to start having dark chocolate even though it's never been my preferred - apparently it has magnesium in it. I do agree that the twitching/jerks were likely always myoclonics but I do have some questions for anyone who can answer them. Are myoclonic seizures always associated with an epilepsy syndrome (that is what it seemed to say on the internet)? With Juvenile myoclonic epilepsy can the tc start before the myoclonics? Finally, if it is a progressive syndrome how quickly would it progress?

 

[lindsayschu2]

Myoclonic SEIZURES are associated with epilepsy, but there are all kinds of myoclonics that can happen for a number of different reasons not associated with epilepsy. My doctors weren't sure for a while whether mine were seizures or not until they got very severe, started with auras and woke me from sound sleep. However the fact that you have idiopathic generalized epilepsy, as I do, make them more likely to be epileptic in nature I would assume, but doesn't necessarily mean they are. There are types of progressive myoclonic epilepsies that have bad prognoses but most of those have fairly early juvenile onsets (I've researched this a lot since I was having very freqnuent severe myoclonic seizures that just started a couple of years ago and was worried). You could just be going through a low seizure threshold phase and/or your meds need adjusting. Trust me I know they are unsettling, but hopefully you and your doctor will get to the bottom of it and get better control.