How to help if someone has a myoclonic seizure - Epilepsy Action Employer Toolkit 

My friends used to laugh and imitate me, which was good natured, and I didn't mind. Now, they tend to look at me with pity and pretend it didn't happen - which definitely feels worse!

@@mintygrey yeah I get it, it's as if you make everyone feel uncomfortable when you do it, like they have to expend energy to act sympathetic every time you have a jerk or a tic. I'm used to it now but I had a seizure nearly two years ago which made me really uneasy for 3 months that I couldn't really work and then afterwards is when I developed the muscle jerks (and vocal tics) so I guess it depends on the severity and specific type of health situation, because I didn't know why I was having them and whether they were a sign that I was going to have another seizure but now I've gotten used to them it doesn't bother me if people care or not, but if I see someone have a tic or jerk and look surprised or worried by it I will ask if they're okay, as it clearly means it's something that's new to them and that they're not sure about.

I recently got diagnosed with it last year and it sucks

Me too

@@Coolscarykid it really does

I get random jerks (not in a some periodic intervals) like i can get on in a day and then not have any other jerks for a week so not sure if that could be it but still I'm concerned about it and told my dad... he basically thinks im making things up. I know it's not that often but like im worried about what if i jerk while driving a car and die like wtf is going to happen then

Oh yeah and also when I write something in school i get a jerk and my hand basically draws a 3+ cm long line by itself just because ive got a jerk

Ikr. My brain don’t want to eat breakfast it just wants to wear it!!

breakfast is so deadly

I don't eat breakfast anymore, it was more hassle than worth, spilt a whole bowl of cereal down my pc once, that was the last straw for me.

I chucked coffee on my trousers, I would never voluntarily throw such a wonderful beverage away! Pure evil. What next? Accidentally punching people in public? lol

Launched a large bowl of spagettii, learned that concentrating to control it does the opposite. I can usually feel it building and trying to stop it makes the end result more intense. My strategy is to stop, relax and not focus on it...but not forcefully. I am getting much better at triggering them as they build so they are less intense. During episodes I can get some relief from the muscle pain by making them trigger as soon s they start...but that can be difficult when the frequency passes about 1x every 3-4 seconds but when the choice is pain/muscle tearing you do it.

My year old grandson was diagnosed with it today. Praying for the both of you🙏🙏

@@shakejackson7513 thank you 🙏🏻 it’s hard to live with

I have them too but I try not to get frustrated about them. I understand how others feel. They are so bothersome

@@katie4335 it just frustrates me that my body just doesn’t function correctly like it used to. Sometimes things will just randomly slip out of my hands for nothing and stuff

@@Coolscarykid try doing things at a slow but steady pace.

How did it go

Yea mines started in middle school because i was never sleeping. I wonder if i would've been sleeping then if i would be having them today

@@themango9644 also started when i was in middle school and not sleeping that much

@@themango9644did they go away ?

I really hope that things get better for you and your relationship. Sending positivity always 💞

@@ashdelkins Thank you!!! Better now than when I first posted that x

@@James_-_B that’s great to hear!

@@James_-_B That's great to hear! Hope you're doing well even now.

@@kamyashrivastava9328 I'm managing my stress levels a little bit better now, but it's hard when the Myoclonus starts up and I can't help but feel very panicked by it. Do you get like that? It's horrible not knowing when the next one is going to strike and how big it's going to be.

You should see your GP at least they can refer you to a neurologist, don’t take your health so lightly, I was diagnosed with hand tremor but now it’s progress to my legs so waiting for a neurologist again

I think it is very important for you to see your GP. They know you better than anyone else does. It's important to discuss it with a medical professional. If you do nothing about it, you will have more than what is normal. I have arm tremors almost every day but I take medicine for them

Bump. This is similar to my experience, as well. My shoulder jerks and I'll get tingles ("chill bumps"?) starting at my knees that run down my feet. I'm glad I'm not the only one.

Has anyone been diagnosed with myoclonic seizures or something else? Hope you’re all in the best of health

Me, too! I worry that I'll come off as a hypochondriac with some things. It's been consistently the same type of thing, and once in a blue moon. Always have called this a cold twitch

Hi - This sounds disorientating for you. Epilepsy can affect people in different ways and changes to sensations and memory can happen after a seizure. www.epilepsy.org.uk/info/seizures It can be really helpful to share support and information so I hope you hear from others here. You might be interested to know we have other online services as well. Here are the links to our Health Unlocked, Facebook, Instagram, Discord and Twitter pages. healthunlocked.com/epilepsyaction facebook.com/epilepsyaction/ instagram.com/epilepsyaction/ www.epilepsy.org.uk/support-for-you/the-epilepsy-discord-server twitter.com/epilepsyadvice Regards Mags Helpline Team.

yes! I find them exhausting.

Yes!

Hi, I have have it since I was 15, in my experience medication has helped a lot, but it has been error and trial. The first medication i took didn't work at all (valproic acid), but the medication i am on now has really been useful (levetiracetam). I would recommend to go to your doctor to find the best treatment for you.

@@aleja12509 thnx bro

@@sss333s3 I'm 45 years old male in Pretty good shape and I'm beginning to have these jerks more often than usual. I'd say I started experiencing these jerks about a year ago. Never really thought much of it at first, I would tell myself maybe I'm just tired and having a Hypnic Jerk from not enough rest. But the last couple of months it gotten worse, to the point that I literally will just all of a sudden throw my phone halfway across the room, nod off for what feels like a 100th of a second. Now I'm also to the point where I can't hold on to my tools at work sometimes, once again just a quick jerk and "Bam" all of a sudden I'm having to pick my Tool back up and now I'm starting to experience in other parts of my body. I'm sorry I went on a rant, but I really can't show anyone when it happens, because I'm always by myself when it happens. I'm making an appointment with my Dr Monday to see if he can explain to me what's going on or Refer me to a Neurologist. I hope you and Ale D find some kind of help with your issues also. Keep me updated.

@@aleja12509 How did levitaceram help? Did it reduce the number of jerks? Did you also have lips jerks when talking (fast) and mumbling episodes? I am completely devasted by this JME, it affects my social life and job.

@@ovidiugall5689 Levetiracetam help me reduce the amount of jerks a lot. Without medication I could have around 100 jerks per hour, but now with medication I rarely have jerks. Right now I only have a couple of jerks if a trigger is presented like cold temperature or lots of stress. I didn't have lip jerks, so I didn't present problems with talking. I understand that having this condition can be really devastating, specially in social terms. In my case I always have to explain people that I just met for the first time what I have so they don't get scare o weirded out when a jerk happens. There have been instances when having this has suck a lot in social terms, like when I spilled a drink on stranger that I was just starting to know, not really a good first impression tbh. So I sympathize a lot with you, I hope you can find a treatment that is the right fit for you. I would recommend to go to a good neurologist and start trying different medications (always under the supervision of your doctor) till you find the best option for you. Sometimes finding the best thing is lots of trial and error. I wish you the best, have a nice day :)

Me too, I suffer from memory problems with it too, mine can get really bad and completely flunked my mock exams because of the increased stress and tiredness, also through my pen across the room because of it, wasn't diagnosed then, still aren't but going through the proses, I got lucky when the government used predicted grades for my gcse's

My myoclonic jerks and seizures don't hurt at all but personally I would agree with you on feeling like you've been hit with a bolt of lighting, there's just no pain association

Can I ask what meds you use? My seizures have gotten terrible lately and my maintenance meds aren't cutting it

@@RB-kh6fo my epilepsy is mild from mild cp, raynaulds diease and mitral valve prolapse due to a brain cyst. I also have simple partial seizure/focal. I have been on lamotrogine (lamictal) and the clonazepam (klonopin) the same dosage for yrs. Things are changing now due to my age and the fact im in peri menopause so my meds may change. Im a volunteer for the epilepsy foundation so let me know if u need anything

This recently happened with my 18year old am finding it difficult to accept and he feel embarrassed everytime the episodes happen. It's just to much

Dear Gladys Thank you for your question. You will be pleased to hear, we are aware of people with epilepsy working in the medical sector such as a doctor or nurse. When you apply to college, you will be assessed as an individual. For someone still having seizures, they will carry a risk assessment and if needed make reasonable adjustment. Also if your epilepsy isn't fully controlled there maybe some restrictions on certain areas of medical work. We have further information on going to university and work assessments on our website. www.epilepsy.org.uk/info/education/education-after-sixteen www.epilepsy.org.uk/info/employment/seizures-advice-employers Good luck Diane Advice and Information Team

I 'zone out' like this, could be a focal seizure. I have JME and what you describe sounds quite typical.

Interesting. The neurologist said my assessment, called them myoclonic jerks, and offered me Gabapentin. 99 percent of mine is at night.

Interesting, I find I don't have them until I'm not engaged in anything in particular and just kind of day dreaming but now I've started having them when walking. I say this because lying in bed is kind of like a day dreaming state.

Dose it Improve, my mother suffering from this more at night

What do you mean curing? There’s no cure for epilepsy 😢

​@@kelseyann6748 there is . its not always permanent

Hello I understand this is concerning for you. We're not medically trained, so I can't say if what you are experiencing are myoclonic seizures. Your doctor should be able to help you. They may refer you to an epilepsy specialist if they think this could be related to epilepsy. Our website has more information about diagnosing epilepsy and about seizure types. If we can help any further, our helpline is free to call for people in the UK, 0808 800 5050. www.epilepsy.org.uk/info/seizures/myoclonic-seizures www.epilepsy.org.uk/info/diagnosis www.epilepsy.org.uk/info/seizures-explained www.epilepsy.org.uk/info/support/helpline Regards David Epilepsy Action Helpline Team

Hi, Thanks for your message. There are many different types of seizures with lots of different symptoms. You can read more about seizure types here: www.epilepsy.org.uk/info/seizures If you think you might be having seizures, you should see your GP. If they think you might have epilepsy, they will usually arrange for you to see an epilepsy specialist at the hospital. This is to make sure you get the right diagnosis and have the best treatment for your epilepsy. The epilepsy specialist is usually a neurologist (for adults). You can read more about how epilepsy is diagnosed here: www.epilepsy.org.uk/info/diagnosis If we can be of any more help, please feel free to contact the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday 8.30am until 5.00pm and Saturday 10.00am until 4.00pm. Regards Jess Epilepsy Action Helpline Team

They know that.

@@danielledewitt1 Then they should explain themselves correctly. Perhaps they meant that the JERK stops almost immediately, but that's very different to saying that the SEIZURE stops almost immediately.

@@IshayuG Or a slip of the tongue mr never had a slip of the tongue.

Keppra is very bad.

@@danielledewitt1 im on keppra and orfiril. works for me. what should be the bad of keppra?

@@arisig Terrible mood swings and for me it didn’t work anyway.

Yeah keppra is really good medicine for me. Earlier i was told to take valproate 500mg but that was very bad for me. That has very side effects i was continuously vomiting for many days because of that and didn't suit my body but keppra is very nice i m taking this since 7 months and it doesn't have any side effects

@@sujatakashyap9550 Keppra does have side effects. Nasty evil side effects. I know because I used to be on it and those nasty evil side effects happened to me. Evil keppra don’t take it.

Hi. If someone has myoclonic seizures, it's unlikely they will get a warning beforehand. But if someone also has tonic-clonic seizures, a myoclonic seizure can be a warning sign that a tonic-clonic seizure may happen. We've more information about myoclonic seizures on our website - www.epilepsy.org.uk/info/seizures/myoclonic-seizures Regards Diane Helpline Team

Hi J Thank you for your question. We are not aware of whiplash been the cause for epilepsy - Whiplash - NHS www.nhs.uk/conditions/whiplash/ Possible causes of epilepsy include: • Brain damage, for example damage caused by a stroke, head injury or infection • Brain tumours • The way the brain developed in the womb • Changes in a person’s genes But in over one third of all people with epilepsy, doctors don’t know the cause. There are a number of medical conditions that can cause symptoms similar to epilepsy. But if you have concerns you may have epilepsy, if you haven’t already, it would be advisable to talk to your doctor regarding your concerns and symptoms. www.epilepsy.org.uk/info/diagnosis If we can be of any more help, please feel free to contact us again, either by email, live chat or the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday 8.30am until 5.00pm and Saturday 10.00am until 4.00pm www.epilepsy.org.uk/support-for-you/the-epilepsy-action-helpline Regards Diane Helpline Team

Same…Trying to figure what is going on with me…have you been diagnosed by a neurologist? Or just self diagnosed?

@@lydiabodder8560 neurologist they just gave me gabapentin

Same, when I'm just daydreaming, bam! lol

They just swapped my meds to duloxetine now

@@Redflowers9 ?

Hi Ali, Thanks for your comment. The information we have on juvenile myoclonic epilepsy (JME), which was checked by an epilepsy specialist, is that all people with JME will have myoclonic seizures. We would recommend contacting your doctor about your concerns. Our website has some guidance on getting the right treatment in different parts of the UK. We also have information about focal seizures that may be helpful for you. If we can be of any more help, please feel free to contact the Epilepsy Action Helpline freephone (UK) 0808 800 5050. Our helpline is open Monday to Friday 8.30am until 5.00pm and Saturday 10.00am until 4.00pm. www.epilepsy.org.uk/info/syndromes/juvenile-myoclonic-epilepsy-janz www.epilepsy.org.uk/info/seizures/myoclonic-seizures www.epilepsy.org.uk/info/treatment/getting-right-treatment-care-for-epilepsy www.epilepsy.org.uk/info/seizures/focal-seizures www.epilepsy.org.uk/info/support/helpline Rosie Helpline Team

Hi Thank you for your comment. Myoclonic seizures can indeed jut be one brief movement lasting a second or two without any repetition. There are also other types of seizures that can have symptoms like you're describing, such as focal seizures. You can find more information here - www.epilepsy.org.uk/info/seizures#row-fc-5 As you're unsure what is causing these symptoms, it would be a good idea to speak to your doctor about them as soon as possible. If they think you could be having seizures, they will usually arrange for you to see an epilepsy specialist at the hospital. We have more information about epilepsy diagnosis on our website - www.epilepsy.org.uk/info/diagnosis Regards Jess Helpline Team

@@epilepsyaction thank you :)

would be pretty hard to find someone who does have them who is willing to share and then actually capture it on footage since it happens randomly.

I challenge you to go out and find somebody with epilepsy who will say yes I will show you my seizures. I’d refuse if you approached me.

​@@danielledewitt1 of course im not going to ask a stranger that: but for educational videos accuracy is important - and a lot of them have really bad actors.

@@samhaine6804 So you want a real seizure to be filmed. Listen I know about seizures, they are no fun at all.

Tonic clonic.

Dear Katlyn Thank you for your comment. What you've described sounds very scary. A number of medical conditions can cause symptoms similar to epilepsy. For this reason you need to get a medical diagnosis. If you haven’t already, it would be best to talk to your family doctor regarding this. If they think it could be epilepsy, they should refer you to an epilepsy specialist for a diagnosis (www.epilepsy.org.uk/info/diagnosis). This would usually be to a neurologist. The ideal would be to someone with a specialist interest in epilepsy, as there are many different neurological conditions, and neurologists tend to specialise in different ones. It would be helpful to keep a diary and take some video clips if you experience more of these events. You can then take them any appointments. Also take your husband with you as he witnessed it. Alternatively, a written description from your husband could be really helpful. Here is a link to our information on what to do when you think you may have had a seizure - www.epilepsy.org.uk/info/first-aid If we can be of any more help, please feel free to contact us again, either by email, live chat or the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday 8.30am until 5.00pm and Saturday 10.00am until 4.00pm www.epilepsy.org.uk/support-for-you/the-epilepsy-action-helpline Regards Diane Helpline Team

@@epilepsyaction thank you for your input. I appreciate it. I’ll check that out. I have a neurology appointment coming up in April. I haven’t had a full on seizure (I’m not sure if dazing off, twitching and other stuff is considered seizures as well sometimes) since I really got started on my medicine. I’ve had all kinds of weird symptoms and other things happen to me but no seizures. What’s really weird is that I was epileptic as an infant and never had a seizure again until I was 29. I just think this is the craziest thing I’ve ever went through so if anyone else on here sees this and knows anything, then hit me up.

@@epilepsyaction oh yeah I was diagnosed with epilepsy, yes. I’ve only been to the doctor a few times. I don’t like going to the doctor because every time I’ve been they just hurry you out the door to get to their next patient so I just want to find someone who actual gives a crap.

If you want to talk about scarey I have tonic clonic seizures. I have epilepsy and so far it’s fractured my neck and cut my head open twice. Both times my head had to be glued together, more recent one from the beginning of the month meant a trip to a&e. Somehow I can still walk etc. mine is triggered by hormones and endometriosis.

@@danielledewitt1 thanks for your input. That really sucks that you’ve had to go through all that. I haven’t had a seizure in a while so I’m very blessed. That comment above was from 5 months ago when I was in a real low point. Not saying I’m totally fixed or anything. God helped me out of it and can help you too if you want His help. I’ll be praying for you hun.

Being unalived from covid worsens everything