Myoclonic seizures

CDC funded page

Not a CDC funded Page

Hi everyone! I'm Marissa, and I'm a 20 year old college student who has been dealing with muscle jerks for the last 7 months. They started in September before I'd go to sleep. A little annoying, because they'd bring me out of a light sleep. Then I started getting them in the early mornings or late at night if I was staying up late for work. I also noticed that they really only happen after I drink coffee. Pop is fine for some reason. The jerks had basically gone away after I'd cut out coffee and were not present for the one 20 minute eeg and the four day inpatient eeg. They told me I had no sign of epilepsy, and I was pretty confident in that response, because I don't want to lose my license and not be able to drive. It's been three weeks since the inpatient eeg, and I've started drinking coffee every morning for the last week and a half. In the beginning, I'd occasionally get a jerk while I was lying on the couch hanging out. Not really in the morning or before bed. Last night while trying to sleep, I began having jerks for an hour that consisted of legs kicking out, jerking back if I was sitting up, and arms jerking every which way. Today I immediately began jerking when I woke up and have had them on and off. I've been sitting on the couch for most of the day, so I couldn't throw my computer that far. I see my neurologist in May, and I'm slightly nervous for this encounter. I have newer videos of what the jerks look like, which no one has seen before because I live by myself so I have no eye witnesses. I'm worried that he may accuse me of faking since two eegs came back with no abnormalities or activity. But we can't necessarily rule out myoclonic seizures since I've never had one on an eeg right? I don't know, I just don't want to be called crazy or a faker. Does anyone have any insight on a situation like this?

Comments

Hi, Thank you for sharing

Submitted by Anonymous on Fri, 2020-04-03 - 08:59

Hi, Thank you for sharing your story and we understand your concerns. A normal EEG does not mean that you are “faking” or that you are not experiencing the symptoms you’ve described experiencing. Approximately one-half of all EEGs done for patients with seizures are interpreted as normal. Even someone who has seizures every week can have a normal EEG test. This is because the EEG only shows brain activity during the time of the test. If you aren't having a seizure at that time, there may not be any unusual brain waves for the test to record. https://www.epilepsy.com/learn/diagnosis/eeg/what-if-its-normal . We are glad that you’re following up with your neurologist to discuss your changes in symptoms further. If your symptoms continue or get worse, you may want to call your neurologist and ask if you can schedule a time to talk via phone/other telehealth resources you can utilize prior to your appointment in May. Be open and honest with your doctor about your feeling and how this is impacting your health and daily life. If you feel you can’t talk openly with your team, or you aren’t working towards the same goals, it may be time to get a second opinion. you. It’s also important that you’re able to identify and recognize your triggers. For some people living with epilepsy excessive amounts of caffeine and lack of, or poor-quality sleep may be a trigger. If these are triggers for you, you can document this by using a journal or a diary. This can help you and your healthcare team detect potential patterns, allowing you to modify your behavior and lifestyle, as appropriate. https://www.epilepsy.com/learn/triggers-seizures. In addition to identifying your triggers, documenting these new episodes you’ve experienced and how your feeling in detail, (like you did in your post) and sharing the videos you’ve taken, will be very helpful to review with your doctors. My Seizure Diary can be used to organize your health issues, manage medications, record side effects, other therapies or personal experiences and more which can be shared with members of your healthcare team. https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary . Additionally, you may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, contactus@efa.org. epilepsy.com/helpline

Hi, Thank you for sharing your story and we understand your concerns. A normal EEG does not mean that you are “faking” or that you are not experiencing the symptoms you’ve described experiencing. Approximately one-half of all EEGs done for patients with seizures are interpreted as normal. Even someone who has seizures every week can have a normal EEG test. This is because the EEG only shows brain activity during the time of the test. If you aren't having a seizure at that time, there may not be any unusual brain waves for the test to record.  https://www.epilepsy.com/learn/diagnosis/eeg/what-if-its-normal . We are glad that you’re following up with your neurologist to discuss your changes in symptoms further. If your symptoms continue or get worse, you may want to call your neurologist and ask if you can schedule a time to talk via phone/other telehealth resources you can utilize prior to your appointment in May. Be open and honest with your doctor about your feeling and how this is impacting your health and daily life. If you feel you can’t talk openly with your team, or you aren’t working towards the same goals, it may be time to get a second opinion. you. It’s also important that you’re able to identify and recognize your triggers. For some people living with epilepsy excessive amounts of caffeine and lack of, or poor-quality sleep may be a trigger. If these are triggers for you, you can document this by using a journal or a diary. This can help you and your healthcare team detect potential patterns, allowing you to modify your behavior and lifestyle, as appropriate. https://www.epilepsy.com/learn/triggers-seizures. In addition to identifying your triggers, documenting these new episodes you’ve experienced and how your feeling in detail, (like you did in your post) and sharing the videos you’ve taken, will be very helpful to review with your doctors. My Seizure Diary can be used to organize your health issues, manage medications, record side effects, other therapies or personal experiences and more which can be shared with members of your healthcare team. https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary . Additionally, you may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, contactus@efa.org. epilepsy.com/helpline 

Hi, Thank you for sharing your story and we understand your concerns. A normal EEG does not mean that you are “faking” or that you are not experiencing the symptoms you’ve described experiencing. Approximately one-half of all EEGs done for patients with seizures are interpreted as normal. Even someone who has seizures every week can have a normal EEG test. This is because the EEG only shows brain activity during the time of the test. If you aren't having a seizure at that time, there may not be any unusual brain waves for the test to record. https://www.epilepsy.com/learn/diagnosis/eeg/what-if-its-normal . We are glad that you’re following up with your neurologist to discuss your changes in symptoms further. If your symptoms continue or get worse, you may want to call your neurologist and ask if you can schedule a time to talk via phone/other telehealth resources you can utilize prior to your appointment in May. Be open and honest with your doctor about your feeling and how this is impacting your health and daily life. If you feel you can’t talk openly with your team, or you aren’t working towards the same goals, it may be time to get a second opinion. you. It’s also important that you’re able to identify and recognize your triggers. For some people living with epilepsy excessive amounts of caffeine and lack of, or poor-quality sleep may be a trigger. If these are triggers for you, you can document this by using a journal or a diary. This can help you and your healthcare team detect potential patterns, allowing you to modify your behavior and lifestyle, as appropriate. https://www.epilepsy.com/learn/triggers-seizures. In addition to identifying your triggers, documenting these new episodes you’ve experienced and how your feeling in detail, (like you did in your post) and sharing the videos you’ve taken, will be very helpful to review with your doctors. My Seizure Diary can be used to organize your health issues, manage medications, record side effects, other therapies or personal experiences and more which can be shared with members of your healthcare team. https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary . Additionally, you may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, contactus@efa.org. epilepsy.com/helpline

Epilepsy is idiopathic. Look

Submitted by irangel on Tue, 2020-04-07 - 23:52

Epilepsy is idiopathic. Look it up. You keep mentioning 'coffee' being a trigger for your myoclonic seizures, so why are you still drinking coffee? Take a look at Atkins for Seizures' website https://atkinsforseizures.com/dietary-chemical-seizure-triggers/ which lists caffeine (e.g. coffee) as a trigger. This website will also list many other seizure triggers that epileptics have reported. Seems like you've been able to do a version of My Seizure Diary, which the Epilepsy Foundation has a nice reading section regarding this. As for me, doing my version of a My Seizure Diary, long before I even heard of it, I recently realized that I'm highly sensitive to calcium carbonate....... it's what triggers my myoclonic seizures when I'm trying to sleep and when I'm waking up in the morning. Here's my list from My Seizure Diary that I kept track over the last 30 years that I avoid/minimize in my daily contact/intake: Blah, blah, blah blah (Please see below for my list of seizure triggers).It's either I avoid/reduce these items in my life or I will have 2 choices: 1) Lose my driver's license; 2) Give up my life of being AED free for the past 30+ yearsSo here's my list of Blah, blah, blah, blah.....which the only common chemical compound is calcium carbonate.....coffee (caffeine) contains calcium carbonate:......: Mortar Mix, Latex Paint, Sparkling Mineral Water, Nitrile GlovesI was able to prove, yet only to myself because no Neurologist wants to take it to the next degree to confirm that calcium carbon exists in all these items, and only after coming in contact with these items, randomly over a 30+ year period, did they trigger my myoclonic seizures resurface, each and every time.Epilepsy is idiopathic. And if you know that coffee is triggering your seizures, why do you still want to drink coffee? Personally, I do love the taste of coffee, but I must limit it to a great degree..........And if you know of family member(s) in chemistry and attorney of law, please do send me them my way, irma.rangel05@gmail.com for I'm on a quest to prove that calcium carbonate exists in Mortar Mix, Latex Paint, Sparkling Mineral Water, Nitrile Gloves.Irma

Epilepsy is idiopathic.  Look it up.  You keep mentioning 'coffee' being a trigger for your myoclonic seizures, so why are you still drinking coffee?  Take a look at Atkins for Seizures' website https://atkinsforseizures.com/dietary-chemical-seizure-triggers/ which lists caffeine (e.g. coffee) as a trigger.   This website will also list many other seizure triggers that epileptics have reported.  Seems like you've been able to do a version of My Seizure Diary, which the Epilepsy Foundation has a nice reading section regarding this.  As for me, doing my version of a My Seizure Diary, long before I even heard of it, I recently realized that I'm highly sensitive to calcium carbonate....... it's what triggers my myoclonic seizures when I'm trying to sleep and when I'm waking up in the morning.  Here's my list from My Seizure Diary that I kept track over the last 30 years that I avoid/minimize in my daily contact/intake: Blah, blah, blah blah (Please see below for my list of seizure triggers).It's either I avoid/reduce these items in my life or I will have 2 choices:  1) Lose my driver's license;  2) Give up my life of being AED free for the past 30+ yearsSo here's my list of Blah, blah, blah, blah.....which the only common chemical compound is calcium carbonate.....coffee (caffeine) contains calcium carbonate:......: Mortar Mix, Latex Paint, Sparkling Mineral Water,  Nitrile GlovesI was able to prove, yet only to myself because no Neurologist wants to take it to the next degree to confirm that calcium carbon exists in all these items, and only after coming in contact with these items, randomly over a 30+ year period, did they trigger my myoclonic seizures resurface, each and every time.Epilepsy is idiopathic.   And if you know that coffee is triggering your seizures, why do you still want to drink coffee?   Personally, I do love the taste of coffee, but I must limit it to a great degree..........And if you know of family member(s) in chemistry and attorney of law, please do send me them my way, irma.rangel05@gmail.com for I'm on a quest to prove that calcium carbonate exists in Mortar Mix, Latex Paint, Sparkling Mineral Water, Nitrile Gloves.Irma

Epilepsy is idiopathic. Look it up. You keep mentioning 'coffee' being a trigger for your myoclonic seizures, so why are you still drinking coffee? Take a look at Atkins for Seizures' website https://atkinsforseizures.com/dietary-chemical-seizure-triggers/ which lists caffeine (e.g. coffee) as a trigger. This website will also list many other seizure triggers that epileptics have reported. Seems like you've been able to do a version of My Seizure Diary, which the Epilepsy Foundation has a nice reading section regarding this. As for me, doing my version of a My Seizure Diary, long before I even heard of it, I recently realized that I'm highly sensitive to calcium carbonate....... it's what triggers my myoclonic seizures when I'm trying to sleep and when I'm waking up in the morning. Here's my list from My Seizure Diary that I kept track over the last 30 years that I avoid/minimize in my daily contact/intake: Blah, blah, blah blah (Please see below for my list of seizure triggers).It's either I avoid/reduce these items in my life or I will have 2 choices: 1) Lose my driver's license; 2) Give up my life of being AED free for the past 30+ yearsSo here's my list of Blah, blah, blah, blah.....which the only common chemical compound is calcium carbonate.....coffee (caffeine) contains calcium carbonate:......: Mortar Mix, Latex Paint, Sparkling Mineral Water, Nitrile GlovesI was able to prove, yet only to myself because no Neurologist wants to take it to the next degree to confirm that calcium carbon exists in all these items, and only after coming in contact with these items, randomly over a 30+ year period, did they trigger my myoclonic seizures resurface, each and every time.Epilepsy is idiopathic. And if you know that coffee is triggering your seizures, why do you still want to drink coffee? Personally, I do love the taste of coffee, but I must limit it to a great degree..........And if you know of family member(s) in chemistry and attorney of law, please do send me them my way, irma.rangel05@gmail.com for I'm on a quest to prove that calcium carbonate exists in Mortar Mix, Latex Paint, Sparkling Mineral Water, Nitrile Gloves.Irma

Don't feel bad or be labelled

Submitted by Paulf_5a363f10272a7 on Fri, 2020-05-15 - 11:37

Don't feel bad or be labelled a faker. My eeg and mri scans were clear.But if I don't take my medicine I will take a nocturnal seizure or absense seizure. As you say I am constantly falling asleep and awake with a bolt. I sat in a meeting one day and my arm wouldn't start jumping. 2 days later I had a seizure just before I went to bed. I found my medicine on the ground beside a smashed glass. The good news for you is your not having really bad episodes. So the point here is a clear eeg and mri don't pick up all the stuff that goes on in our brains. Exactly above too much caffeine is a bit trouble as good sleep is needed. Hopefully you relax and get good sleep don't worry too much about what might be going on. No coffee after 8.00pm. I do find if I'm stressed out coffee makes me worse and shaky.