Chat and Community Forums Closed

Due to the popularity of social media, we have seen decreasing engagement on our forums and chat. Please know we want to keep talking to you about epilepsy, seizures, and what you need. We want to stay connected with you.

Community Forum

Difference between twitches and myoclonic jerks?

I'm sure this has been asked before, but I can't seem to find it on the site (or at least I don't think so). For the last 10 years I've had "twitches" that I thought were normal. I'm still not sure if they are. But they seemed to go away after a while on Keppra. I recently had my dose increased to 3,000 mg a day and I'm having lots of these "twitches". I never mentioned these to my neuro because I thought they were normal. They used to be relatively infrequent, but now they happen so often that they're becoming a concern. I feel an electric shock in my head and prick of pain as my body twitches. Usually the little prick of pain(like a needle) is in a finger or toe, even if it isn't that exact spot. I had this before my Keppra dose was increased. My myoclonic jerks are getting worse too, which seems quite opposite of what others have experienced. I WAS on 2000 mg of Keppra a day, now I'm on 3000 mg a day, but things just seem to be getting worse. It's been a few weeks now, and though some seizures are improved, the twitching seems to be going back to what it was before I was on meds, if not worse. Sorry for my ignorance, but I had trouble finding other information. I seriously don't know why they've come back. I have been stressed lately, but not nearly as much as before I started on meds. Has anyone else experienced this? Sorry for the long post, michi

Comments

Re: Difference between twitches and myoclonic jerks?

Great question. My daughters never fully went away till we switched to deprakote . She has very few right now as compared to all through the day.

Re: Difference between twitches and myoclonic jerks?

Everyone's opinion is valuable, and I don't like appearing like I'm arguing with anybody. Mine is just another opinion, but comes from experience. Please be very careful with taking supplements, and get a baseline blood count of the various vitamin and mineral levels first.
For example, a potassium level that is too high can lead to heart issues which in turn can lead to death. I was considering taking supplements and for another reason had some bloodwork done and found out my potassium level is consistently high-normal to mildly above normal. After a year of monitoring this every couple of months, the conclusion was it's just how I am. But I am never to take potassium supplements in the amount beyond what is in a typical daily multivitamin (which apparently isn't very much).
Always check with your family Dr. and neurologist before taking supplements, and make sure there are no contraindications for taking certain ones.

Re: Difference between twitches and myoclonic jerks?

 Unfortunately most doctors have very little knowledge of nutrition and supplementation so when you go to them and ask can I take this.. they often have no idea. I agree with you on getting your blood levels checked but unfortunately doctors do not test you for multitudes of vitamins and minerals as well. They will do folate, b-6(sometimes) b-12, Vitamin D, Calcium, Sodium, and Potassium but that's pretty much it. 

 

Your high potassium levels were most likely caused by whatever medications you were on and either caused kidney impairment or you already had kidney impairment. You shouldn't just say that's "just how I am". This issue should not be overlooked. Most likely doctors won't freak out unless you are excessively out of range for long periods of time but it doesn't mean that you don't have kidney problems. 

 

 

"And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away" - Rev 21:4

Re: Difference between twitches and myoclonic jerks?

Thanks for the tips about what could have caused the high K level. None of the medications I'm on have increased potassium as a side effect "so those can't possibly be the cause". Sound like a familiar line? It's frustrating how we are all supposed to know absolutely everything so we can know when to ask the Dr. about something. I will ask about the kidney issue. Again, thanks.

Re: Difference between twitches and myoclonic jerks?

I just happened to post about my twitches today, and the weird "prick" sensation I feel as well at the beginning.  I can remember having them for YEARS, however they got worse back 4 years ago when I was first "diagnosed" with epilepsy/migraines.  Several of the drugs they had me on, the "twitches" were worse while on those meds, however I've been off from meds for over a year now, and I still get these same "prick" twitches, and about half of my twitches are not associated with the "prick" or "shock".  These happen several times throughout the day, sometimes more, sometimes less.  Quite annoying, and embarassing when somebody sees.  I don't have an answer for them, nor has anyone given me an answer.

Re: Difference between twitches and myoclonic jerks?

I was diagnosed with JME but I've never experiened the typical jerks. I think twitches are normal, especially when your about to fall asleep. I think with myoclonus what you should look for is uncontrollable jerks just after awaken from sleep. Also jerks that make you drop things a lot. I've also seen videos where people are just relaxing and their limbs non-stop twitch for no reasons. Muscle twitches can be caused by electrolyte imbalances and I think this is hugely over looked in the epilepsy community. Keep sodium and calcium intake around the RDA while keeping magnesium and potassium intake high. A easy way to get your potassium intake up is sprinkle salt-substitute on your foods. You want the one that has potassium chloride in it. No MSG. Supplemental pottasium tablets are typically sold at around 99mg only. That's only around 3% of the RDA. You can safely take up to 3,500mg of potassium a day and even more depending on your weight/sex also. Just look up the recommendations for you. Most people take in way too much sodium and not enough potassium. Potassium will help to balance out your sodium levels also. Another very very important one is magnesium. I can't stress this mineral enough. It's hugely overlooked and doctors aren't trained to detect and treat magnesium deficiency. They don't even test for it. You want to get a highly bioavailable form of magnesium like citrate or taurate. Citrate will be your cheapest option. You can use capsules but powder should be cheaper in most cases. If you get powder you want to go with a product similiar to "CALM" magnesium. Search and you'll find it.  With magnesium you have to ramp it up slow otherwise it will start a laxative effect. I'd start out with 200mg 1-2 times a day. If that's ok go to 200 2x a day and work your way up to 1,000mg in divided doses. 

I would be very curious to see if myoclonus would either dissapear or drastically was reduced with this regimen. If you try it please post your results. 

 

The closest thing I think I experienced to myoclonus was when I noticed while on zonegran I would randomly drop my keys and bags. I didn't notice a jerk though it was just like my hand would release. The doc told me it was probably myoclonus but this never happend to me before. The problem was pretty much on and off since zonegran. Went to lamictal,depakote,keppra and once in awhile it would still happen but nothing like on zonegran. I believe the meds brought it out because I never had issues before zonegran. I'am currently getting off keppra but I haven't noticed it in awhile. I have been taking high doses of magnesium though. I believe there is a connection. I think many epileptics are magneisum and potassium deficient. Many AED's also lower these minerals so over time you will notice deficieny symptoms. 

 

 

 

"And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away" - Rev 21:4

Re: Difference between twitches and myoclonic jerks?

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

 
24/7 helpline