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

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  • เผยแพร่เมื่อ 27 พ.ค. 2021
  • This video is part of Epilepsy Action’s Employer toolkit.
    Find out more how to support employees with epilepsy at work employers.epilepsy.org.uk/
    To speak to a trained adviser about how you can support employees with epilepsy, call the Epilepsy Action Helpline on freephone 0808 800 5050

ความคิดเห็น • 211

  • @Redflowers9
    @Redflowers9 ปีที่แล้ว +16

    "Oh are you okay" nobody actually asks that lol even when my whole body lurches forward

    • @mintygrey
      @mintygrey หลายเดือนก่อน +1

      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!

    • @Redflowers9
      @Redflowers9 หลายเดือนก่อน

      @@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.

  • @pongtang3
    @pongtang3 2 ปีที่แล้ว +100

    I had myoclonic seizures my entire life, I just assumed it was a chill that ran up my body sometimes... Then when I was 26, I had 3 gran mal seizures that broke my jaw, ribs, and back... Talk to your doctor if you think you have these.

    • @Coolscarykid
      @Coolscarykid ปีที่แล้ว +1

      I recently got diagnosed with it last year and it sucks

    • @ethanrichards6979
      @ethanrichards6979 ปีที่แล้ว

      Me too

    • @themango9644
      @themango9644 ปีที่แล้ว

      @@Coolscarykid it really does

    • @patrikbionda3786
      @patrikbionda3786 ปีที่แล้ว +5

      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

    • @patrikbionda3786
      @patrikbionda3786 ปีที่แล้ว +3

      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

  • @Coolscarykid
    @Coolscarykid 2 ปีที่แล้ว +74

    I just found out I have these. I had my neurologist appointment today and my nurse wrote down all the shivers/jerks I’ve had.

    • @shakejackson7513
      @shakejackson7513 2 ปีที่แล้ว +8

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

    • @Coolscarykid
      @Coolscarykid 2 ปีที่แล้ว +5

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

    • @katie4335
      @katie4335 2 ปีที่แล้ว +4

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

    • @Coolscarykid
      @Coolscarykid 2 ปีที่แล้ว +6

      @@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

    • @katie4335
      @katie4335 ปีที่แล้ว

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

  • @Ravenesque19
    @Ravenesque19 ปีที่แล้ว +10

    I have these too. They started last year. I'm seeing a neurologist, doing all the tests now. I didn't know what was happening 😳

  • @fatimajaved5223
    @fatimajaved5223 9 หลายเดือนก่อน +5

    I used to get these once or twice under stress but never payed attention thought it was normal, until I had a baby and my sleep cycle was disrupted completely and I was also going through postpartum depression and stress so all things combined it kicked in and some days I would get 40 seizures a day, if I were holding a cup with a seizure I’d drop it, I got so scared I wouldn’t even pick my own child that I might drop him too 🥺 and doctors couldn’t even refer me to a neurologist and prescribed me medication for restlessness and it did it’s job until I had a flown blown epileptic episode then they were able to pick traces of it in EEG. I don’t take any medication now but I’m aware what triggers it and I try to avoid them and live a good lifestyle

  • @layahima184
    @layahima184 9 หลายเดือนก่อน +3

    I have this type of seizure and before I learned I have this I got so embarrassed every time it happened and I’ll try to hide it but now I can trust few people about my condition and it helped me to feel a bit “safer” around them and I got less tense and therefore less seizure episodes

  • @JuanaPerez-hn2he
    @JuanaPerez-hn2he ปีที่แล้ว +12

    got dianogsed w/ epilepsy when i was 17... i was having these jerks for my whole life but I thought they were just chills... i did notice that they would happen when I was very tired but I never took it seriously...then I had a gran mal during the day time(I might have had some in my sleep in the past but ill never know) and then I got diagnosed a week later

    • @themango9644
      @themango9644 ปีที่แล้ว +1

      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

    • @louisgandionco
      @louisgandionco ปีที่แล้ว +1

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

    • @christianalexander4010
      @christianalexander4010 หลายเดือนก่อน

      @@themango9644did they go away ?

  • @urbanhawk2886
    @urbanhawk2886 9 หลายเดือนก่อน

    Literally just got back from A&E after having a massive jerk and hitting my neck on a bar. They told me going by what happened this time and previous incidents that they are down to myclonic seizures, which I had no clue about. Before when I dropped or spilt anything me and others who were around me at the time just laughed it off as me being clumsy or just having a random spasm. Just glad I have an answer to it now.

  • @annapurna9893
    @annapurna9893 2 ปีที่แล้ว +16

    These are the worst! I was in the shops the other day and dropped a bottle of wine 😫

  • @sell3100
    @sell3100 11 หลายเดือนก่อน +1

    I need to get tested for this...

  • @sophiaashcraft8146
    @sophiaashcraft8146 2 ปีที่แล้ว +5

    I have JME and it's extremely frustrating indeed

  • @aimee4009
    @aimee4009 2 ปีที่แล้ว +23

    Chucked my bloody weetabix on myself 😐

    • @liapat814
      @liapat814 2 ปีที่แล้ว +3

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

    • @Emilypwilson
      @Emilypwilson 2 ปีที่แล้ว +2

      breakfast is so deadly

    • @callumbayman1436
      @callumbayman1436 2 ปีที่แล้ว +2

      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.

    • @Redflowers9
      @Redflowers9 ปีที่แล้ว +1

      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

    • @otto7979
      @otto7979 8 หลายเดือนก่อน +1

      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.

  • @James_-_B
    @James_-_B 2 ปีที่แล้ว +26

    Myoclonus blights my life. Mine are violent, send me flying forwards. I'm typing this with a very sore and stiff wrist after going down outside, in the dark, on my own a couple of days ago. I get so many it's ridiculous. Can have hundreds in a day (it's not like I'm counting though) then it's usually followed up by a Tonic-Clonic seizure. I really hate having epilepsy. I'm literally worried at the minute because it's having a direct impact on my relationship with my partner, he's worrying so much about me when we're not together. I swear he's going to leave me because I cause so much fuss, even though I try to remain calm and not tell anyone, I know the fuss, worry and problems it causes other people.

    • @ashdelkins
      @ashdelkins 2 ปีที่แล้ว +5

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

    • @James_-_B
      @James_-_B 2 ปีที่แล้ว +5

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

    • @ashdelkins
      @ashdelkins 2 ปีที่แล้ว +2

      @@James_-_B that’s great to hear!

    • @kamyashrivastava9328
      @kamyashrivastava9328 2 ปีที่แล้ว +2

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

    • @James_-_B
      @James_-_B 2 ปีที่แล้ว +5

      @@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.

  • @chanabayla1823
    @chanabayla1823 2 ปีที่แล้ว +5

    I have meds i intervene with when they get bad. Im fortunate enough to know what triggers them and most of the time when they're coming. If u dont know the person you may think theyre just cold or have tourette syndrome. Just like any seizure if its bad enough to cause post generalization and the person normally doesnt have that medical attention is needed

    • @RB-kh6fo
      @RB-kh6fo 2 ปีที่แล้ว

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

    • @chanabayla1823
      @chanabayla1823 2 ปีที่แล้ว

      @@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

  • @sss333s3
    @sss333s3 3 ปีที่แล้ว +22

    I have lived with it all my life and just knew what it was now am 32 I was looking for an answer for long

    • @aleja12509
      @aleja12509 3 ปีที่แล้ว +3

      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.

    • @sss333s3
      @sss333s3 3 ปีที่แล้ว

      @@aleja12509 thnx bro

    • @erichodges9536
      @erichodges9536 3 ปีที่แล้ว +5

      @@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.

    • @ovidiugall5689
      @ovidiugall5689 2 ปีที่แล้ว +1

      @@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.

    • @aleja12509
      @aleja12509 2 ปีที่แล้ว

      @@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 :)

  • @carolngumo6904
    @carolngumo6904 8 หลายเดือนก่อน

    I have had for last 10yrs now....for me they are more frequent when am stress or on my monthly periods. Its embarrassing when those jerks happen. Currently managing it with medication and avoiding much stress n make sure i have enough rest/sleep.

  • @niki6788
    @niki6788 2 ปีที่แล้ว +24

    I’ve had these jerks for years - my neck will jerk and I’ll throw my head to one side. Then I get tingles across my head or down my legs. I wondered if I should see my GP but I don’t want to look silly incase it’s nothing. It happens most when I’m tired.

    • @lydialondonn
      @lydialondonn 2 ปีที่แล้ว +7

      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

    • @katie4335
      @katie4335 2 ปีที่แล้ว +1

      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

    • @user-hr9sl7ti2q
      @user-hr9sl7ti2q ปีที่แล้ว

      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.

    • @mahboobahussain5855
      @mahboobahussain5855 2 หลายเดือนก่อน

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

  • @teshayazzie3095
    @teshayazzie3095 ปีที่แล้ว +1

    I have jerking in my shoulders. It started years ago. Stopped for a while now they are back. They are freaking annoying. I need to make a doctors appointment. Is hand tremors part of this as well.

  • @nadew.02
    @nadew.02 7 หลายเดือนก่อน

    I've been having this kind of quick and involuntary jerks throughout my trunk for some years now. They have gotten a little too intense in the past months so I've become concerned. After some research it seems that I have myoclonic seizure, since its symptoms match what I've been going through. I'm considering visiting a doctor to see if the cause is curable, or if at least I can get medicine that makes the seizures less frequent.

  • @alannah01
    @alannah01 2 ปีที่แล้ว +1

    i think i have tics but it might be myoclonus as i had hepatorenal syndrome and jaundice as a child. However, if you can help,, here is my problem:
    I had frequent leg jerks and movements (very often, 10-60 seconds apart)
    Arm movements (1-5 minutes apart)
    Neck movements (10-15 minutes apart)
    Hiccups (might not be tics but 10 mins- 2 hours apart)
    Eye twitches (once or twice a day)
    Finger locks in place (2-5 times a day)
    Leg(s) lock in place (1-4 times a day)
    Jaw locks in place (once or twice a week)
    so yeah.... and I've had it for 2 years

    • @epilepsyaction
      @epilepsyaction  2 ปีที่แล้ว

      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

  • @jendougal7863
    @jendougal7863 10 หลายเดือนก่อน +1

    Mine are like how lightning doesn't strike the same place twice. First it could be my hand, next my leg, etc...

  • @connorwalker2297
    @connorwalker2297 ปีที่แล้ว +4

    Mine last all day until I go to sleep and it effects my whole body also I am really confused and can't speak a normal sentence without forgetting

  • @michellenegron313
    @michellenegron313 ปีที่แล้ว

    Relatable...tg for good friends and family

  • @M-R-Amal
    @M-R-Amal 2 ปีที่แล้ว

    I have this .

  • @christinacooner8518
    @christinacooner8518 2 ปีที่แล้ว +8

    I have these but mine are far worse. I'm on Keppra & it does help.

    • @danielledewitt1
      @danielledewitt1 2 ปีที่แล้ว

      Keppra is very bad.

    • @arisig
      @arisig 2 ปีที่แล้ว

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

    • @danielledewitt1
      @danielledewitt1 2 ปีที่แล้ว

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

    • @sujatakashyap9550
      @sujatakashyap9550 2 ปีที่แล้ว +1

      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

    • @danielledewitt1
      @danielledewitt1 2 ปีที่แล้ว

      @@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.

  • @spikey420
    @spikey420 ปีที่แล้ว +1

    I have vocal tics, and some motors. so I cant tell the difference

  • @aslmad1
    @aslmad1 5 หลายเดือนก่อน

    I have a back injury due to trying too hard to stop a seizure victim from hitting the pavement.
    I can’t find anything that addresses what I should have done.

  • @deadinside1777
    @deadinside1777 2 ปีที่แล้ว +4

    It looks over dramatic but that’s exactly what it’s like except the pain of it is so severe you will sometimes fuvking cry when mine happen I sometimes will forget what I’m talking about (I had one while typing this lol)

    • @callumbayman1436
      @callumbayman1436 2 ปีที่แล้ว

      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

  • @hockeyboys61
    @hockeyboys61 ปีที่แล้ว +8

    Myoclonic seizures/jerks feel longer than they really are. I have a camera in my room for epilepsy reasons. When I have a jerk, I look at the camera and see that it lasts like a quick second, but it felt like five seconds when I had it. Does anybody else get that feeling?

    • @epilepsyaction
      @epilepsyaction  ปีที่แล้ว

      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.

    • @karent9134
      @karent9134 ปีที่แล้ว +1

      yes! I find them exhausting.

    • @dyamondj.174
      @dyamondj.174 ปีที่แล้ว

      Yes!

  • @rgvn5
    @rgvn5 2 ปีที่แล้ว +6

    I was studying pathophysiology and I read the symptoms and wondered if I had them. For me I get a sharp sudden pain sensation at my upper left trap. I sometimes look back cause I think someone is hitting me. Does anyone have the same sensation? It doesn't make me jerk, but hurts like some lightning struck through.

    • @James_-_B
      @James_-_B ปีที่แล้ว +1

      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

  • @notagamer9380
    @notagamer9380 9 หลายเดือนก่อน +1

    I have had myoclonic seizures since I was about 11 or 12. Around the time I had my first seizure (I’m 18 now) and it hurts my body when I have myoclonic seizures. I tend to make loud hiccups or gasps. I have thrown phones and broken them without meaning to. I have squeezed soda bottles to the point it simply went everywhere. I have almost choked on food. I have thrown things at times too. I was diagnosed with a tic disorder which was connected with myoclonic seizures so I have these random facial tics where it looks like I’m smiling or I’m scrunching up my nose. I have head twitches where I suddenly move my head. With my myoclonic seizures I would get laughed at during school since it was just random and mine were loud. At the time I had no clue what they were and was recently diagnosed with myoclonic seizures (which ong finally I know what they are) but I hate them cause it hurts for me and I feel bad if I break something. That’s why I use plastic cups or plates or bowls.

    • @ladygladyg6830
      @ladygladyg6830 7 หลายเดือนก่อน

      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

  • @gladysnjengah717
    @gladysnjengah717 ปีที่แล้ว +3

    I have myoclonus seizures as well.
    They are controlled most of the time except when exposed to my triggers.
    I got accepted into Medical School.I'm happy about that but I worry that i might not be allowed to practice and I also fear that I might hurt a patient one day.
    Are people with epilepsy allowed to practice Medicine?

    • @epilepsyaction
      @epilepsyaction  ปีที่แล้ว

      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

  • @Manishatyagi1
    @Manishatyagi1 ปีที่แล้ว

    I experienced it only once in my life… but sometimes all of sudden my tongue comes out in between of my front teeth, is it also the part of it..?

  • @jmpice
    @jmpice ปีที่แล้ว

    can these start after a severe whiplash injury? it’s just that around 10 yrs ago i got severe whiplash in my neck and my arms went tingly. several years after i’d have these ‘jerks’ where my head would throw to the side and sometimes lock, and my body would just spasm. it’s not that severe now but i still get them. thought it could be nerve damage.

    • @epilepsyaction
      @epilepsyaction  ปีที่แล้ว

      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

  • @jaket5991
    @jaket5991 หลายเดือนก่อน

    Do you get a warning sign before one of these happens?

    • @epilepsyaction
      @epilepsyaction  25 วันที่ผ่านมา

      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

  • @louisgandionco
    @louisgandionco ปีที่แล้ว +1

    This is my case but i still dont know if it's a myoclonic. Since we dont have money to have a checkup.
    My myoclonic seizure usually happens when i just stare to nowhere.

    • @JamesGibbs8
      @JamesGibbs8 ปีที่แล้ว +1

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

  • @con1._.1artist
    @con1._.1artist ปีที่แล้ว

    Do they always happen in succession, or can they just be one whole movement?
    My upper body kinda locks up for a second: shoulders go up, arms go up and towards my chest, breath sucks in, and head goes down and to the right. All happens at once, in about a second ot two. Happens several times a week. Ive only had it happen once where it happened, and then happended again a minute later. Its always the same, and sometimes feels like a chill/someone walking over your grave sensation. Happens more when im tired or cold. No change in consciousness or awareness.
    Would this still be a myclonic seziure, or do they have to be repeative within a short time span like in the video?
    My mums a disability care worker, and just had a training session on epilepsy, and saw the myoclonic seizures and thought thats exactly what happens to me. We just thought they were muscle spasms, and since theyve never caused issues like hurting myself or spilling/breaking something we've never bothered to bring it up to the doctor, even though they've been happening for a few years now.
    Since we think it may be seizure now, we'll bring it up at the next doctors appointment, but for now im just doing my own research, and alot of it says theyre repetitive, and while mine are the same each time, they are not repetitive in a short time span, so im a bit confused on that part.

    • @epilepsyaction
      @epilepsyaction  11 หลายเดือนก่อน +1

      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

    • @con1._.1artist
      @con1._.1artist 11 หลายเดือนก่อน

      @@epilepsyaction thank you :)

  • @iniobong5571
    @iniobong5571 2 ปีที่แล้ว +10

    Let me take out a moment in my busy life to send a thank you note to a very amazing doctor who is full of love and commitment,Dr ogie is truly a blessing to the world thanks for curing my epilepsy...

    • @kelseyann6748
      @kelseyann6748 ปีที่แล้ว

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

    • @Infernalith
      @Infernalith 5 หลายเดือนก่อน

      ​@@kelseyann6748
      there is . its not always permanent

  • @jamesgray2353
    @jamesgray2353 4 หลายเดือนก่อน

    If someone was having a myoclonic seizure, I’d always call for medical help because these can last all day or could potentially be stroke related.

  • @spike16965
    @spike16965 2 ปีที่แล้ว +3

    I have myoclonic epilepsy. Mine are mostly at night.

    • @gardengirl11ify
      @gardengirl11ify 2 ปีที่แล้ว

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

    • @Redflowers9
      @Redflowers9 ปีที่แล้ว

      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.

    • @dr.yeasinarafat609
      @dr.yeasinarafat609 ปีที่แล้ว

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

  • @embananasplit2935
    @embananasplit2935 2 ปีที่แล้ว +2

    I am sad

  • @TavareHill
    @TavareHill 2 ปีที่แล้ว +3

    Mine are really bad when I relax or attempt to lay down

    • @lydiabodder8560
      @lydiabodder8560 2 ปีที่แล้ว

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

    • @TavareHill
      @TavareHill 2 ปีที่แล้ว

      @@lydiabodder8560 neurologist they just gave me gabapentin

    • @Redflowers9
      @Redflowers9 ปีที่แล้ว

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

    • @TavareHill
      @TavareHill ปีที่แล้ว

      They just swapped my meds to duloxetine now

    • @TavareHill
      @TavareHill ปีที่แล้ว

      @@Redflowers9 ?

  • @InsaneFacts220
    @InsaneFacts220 2 ปีที่แล้ว

    Im 23 and they told me i have juvenile myoclonic epilepsy , but i have no jerks , during my seizure i only have a weird feeling in my nose and my vision gets darkened
    can it be myoclonic epilepsy or is it something else ?

    • @epilepsyaction
      @epilepsyaction  2 ปีที่แล้ว

      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

  • @katlynbitner4520
    @katlynbitner4520 ปีที่แล้ว

    I think I just had a myoclonic seizure or something like it last night. I don’t know what it was but it was the scariest thing I’ve ever dealt with in my life. If anyone knows anything about this and can help me, that would be absolutely amazing. I had the longest seizure I’ve ever experienced last night. I had involuntary movements for a couple hours last night. I almost made my husband wreck our car. If someone could please help me out, that would be so amazing. It happened when I got super stressed out and my heart started to race. My poor husband and son had to deal with me not being able to control my own body for two hours last night. What the crap was that?!?!? I need someone to please help me out and please tell me what the heck went on with me? It was so scary and I couldn’t even control myself. My husband thought I was dancing at first which is so embarrassing because I don’t remember it all. I remember a lot of it but some of it I was totally out of it. Can someone please help me with this? Does anyone know anything about involuntary movements?

    • @epilepsyaction
      @epilepsyaction  ปีที่แล้ว +2

      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

    • @katlynbitner4520
      @katlynbitner4520 ปีที่แล้ว

      @@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.

    • @katlynbitner4520
      @katlynbitner4520 ปีที่แล้ว +1

      @@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.

    • @danielledewitt1
      @danielledewitt1 11 หลายเดือนก่อน

      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.

    • @katlynbitner4520
      @katlynbitner4520 11 หลายเดือนก่อน

      @@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.

  • @jackhibbs898
    @jackhibbs898 2 ปีที่แล้ว +1

    i have tonic clonic seizures

  • @mhalqurashi7021
    @mhalqurashi7021 8 หลายเดือนก่อน

    I was worried that the women will have a myoclonic seizure while she was holding the cup

  • @joyjohnson3561
    @joyjohnson3561 ปีที่แล้ว

    #DrObahistoricalherbs

  • @miracletaylor596
    @miracletaylor596 2 ปีที่แล้ว

    I have taonic clinic

  • @Greekmilsim
    @Greekmilsim 2 ปีที่แล้ว

    I have this shit .my doctor issued me the briviacetam

  • @IshayuG
    @IshayuG ปีที่แล้ว +1

    It's not true that myoclonic seizures last almost no time and recover immediately after a jerk. I've had them and I was jerking around every 10 seconds or so for up to an hour.

    • @danielledewitt1
      @danielledewitt1 11 หลายเดือนก่อน

      They know that.

    • @IshayuG
      @IshayuG 11 หลายเดือนก่อน

      @@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.

    • @danielledewitt1
      @danielledewitt1 11 หลายเดือนก่อน

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

  • @user-vn9mq2no1e
    @user-vn9mq2no1e 7 หลายเดือนก่อน

    Oh shit

  • @edsonmartins966
    @edsonmartins966 2 ปีที่แล้ว +3

    Renata😙😚15?♡☆

  • @CaptinHoot51
    @CaptinHoot51 2 ปีที่แล้ว

    👀

  • @CaptinHoot51
    @CaptinHoot51 2 ปีที่แล้ว

    💔💔💔💔💔💔💔💔

  • @CaptinHoot51
    @CaptinHoot51 2 ปีที่แล้ว

    💔💔💔💔

  • @samhaine6804
    @samhaine6804 ปีที่แล้ว

    why do they always have actors in these videos? it never looks real

    • @EzeDaGreat03
      @EzeDaGreat03 ปีที่แล้ว +1

      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.

    • @danielledewitt1
      @danielledewitt1 11 หลายเดือนก่อน

      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.

    • @samhaine6804
      @samhaine6804 11 หลายเดือนก่อน

      ​@@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.

    • @danielledewitt1
      @danielledewitt1 11 หลายเดือนก่อน

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

  • @uzochiideh1714
    @uzochiideh1714 2 ปีที่แล้ว +1

    Testifying about Dr Obulor, for curing my Epilepsy. i wonder what could have become of me if you weren't the one who handled my case, I sincerely appreciate you #Drobulor.

  • @bentleyporscheanderson7726
    @bentleyporscheanderson7726 2 ปีที่แล้ว +2

    Woof, the jab worsens the seizures

  • @charonvallejo1580
    @charonvallejo1580 2 ปีที่แล้ว +1

    my current situation 😭 I have both types of seizures and have been going through this for the last 6 hours I just wanted to go to sleep, my jerks are not mild they are extreme and painful💔🥲

  • @CaptinHoot51
    @CaptinHoot51 2 ปีที่แล้ว

    👀

  • @CaptinHoot51
    @CaptinHoot51 2 ปีที่แล้ว

    💔💔💔💔