Nighttime Shakes and Daytime Jerks and Lapses

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Hi everyone, So I am 30 yrs old and was just diagnosed with partial epilepsy "focal predominantly left anterior temporal but also right anterior temporal and intermittently generalized epileptiform activity without clinical accompaniment." At night I have these strange shaking seizures where I go in and out of consciousness while my body shakes like having a really bad case of the shivers. In the past, I have tried several antidepressants and with each one I start to have frequent and worsening nighttime shakes and have to stop them. Along with this, In the daytime I have constant jerks. I can only describe them as momentary lapses in consciousness which only last a split second. What I've noticed is that I tell my brain to perform an action and nothing happens, then when the connection is made a split second later, it explodes out as if it was building up energy while it wasn't responding, therefore creating jerking movements. I also notice this with my balance when I'm leaning over a sink shaving or doing the dishes. Suddenly, my balance gives for a split second and my body reacts violently because I feel like I'm falling over and jerks back up--same thing. I used to play video games, but I cant anymore because I'm always jerking around. The main issue, though, is that I work in IT where I use computers constantly and I accidentally click things I'm not supposed to and press actions that cause issues that I then have to reverse while still jerking around. I have to methodically do each task slowly so that I don't cause issues and it really slows me down and I don't make timelines. This goes hand in hand with nystagmus I experience which I have to wait until it stops. Most of all, though (it's hard to recognize), but I think that my brain experiences these frequent lapses also because for some reason, I have a hard time following sentences like I'm always buffering the information each second to process intermittently and sometimes it's just too overwhelming and I can't comprehend what people are saying or create sentences of my own. Anyway, that's a lot of description, but is anyone else experiencing any of these symptoms? My neurologist just says he's not sure what's causing them, but my MRI looks good so I shouldn't worry about it and just keeps throwing meds at me that don't work, but I really need to find an answer so I'm switching Neurologists here soon to find one. Anybody in the same boat? Any info would be highly appreciated. Thanks!

Comments

Hi,I'm 30 years old too. I

Submitted by kimbaloca on Sat, 2019-11-23 - 17:26

Hi,I'm 30 years old too. I have the nighttime shakes too. Woke up last night, sweating all over, jerking. Sometimes this turns into a grand mal seizure, sometimes not. Last night I think I just went back to sleep. Woke up with twitches (or jerks) this morning. CBD helps me, feels like it calms down my brain. I took the pharmaceuticals for 10 years, they actually caused the jerks to be much worse. I took Zonegran, Topamax, and others..I tried for a long time to find something that worked. My neurologist told me I would have to adjust to the side effects because they all have some. Honestly, I haven't been to a neurologist in 6 years. Nothing ever was showing up on my MRIs either. I guess for me, it's better to have a few grand mal seizures a year, versus the constant jerking I experienced while on the meds. I'm sorry you're having these problems, I feel the struggle too. Hope you find something that works for you and brings you peace. I would also like to know more about what causes this type of brain activity and how to lessen it.

Good that you are going to

Submitted by Patriotrehab on Sat, 2019-11-23 - 20:11

Good that you are going to get a second opinion. I would advise you to see a neurologist at an epilepsy center also called an epileptologist and to discuss the possibility of getting a 7 day video EEG to see if they can capture several of your events. Many people who have epilepsy have normal MRIs or their MRIs don’t show anything until they get a high resolution MRI. What matters most is the EEG when it comes to epilepsy. I think that’s bad advice for a neurologist to tell you “not to worry too much about it” when you already have been diagnosed because of abnormalities on the EEG. As one of my epilepsy specialists told me, it doesn’t matter what the MRI says when it comes to diagnosis if they are able to capture a seizure on VEEG. The MRI after that is just to tell them if there is any structural abnormality that they can possibly correct with surgical intervention. Most other cases are a mystery. I wish you the best!

Hi,Thank you for posting. We

Submitted by Anonymous on Mon, 2019-11-25 - 08:42

Hi,Thank you for posting. We understand this must be very upsetting and frustrating for you to experience, especially if you feel like your doctor is not listening to your concerns. It’s best that you follow-up with your healthcare team, (that you’re comfortable with) to discuss these episodes you describe further and if you continue to experience any changes in seizure types/frequency, side effects, symptoms, behaviors and moods, to determine what individual treatment plan is best for you. It is common for those living with epilepsy to report having difficulties with thinking & memory, so it’s also important that you continue to address those challenges and other concerns you may have with your healthcare team: https://www.epilepsy.com/learn/challenges-epilepsy It can be challenging to find a healthcare team that you're comfortable with, but if you feel you can’t talk openly with your team or aren't working towards the same goals, it may be time to get a second opinion. For information regarding second opinions or assistance finding a specialist near you, please visit : https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist A key part of managing epilepsy is knowing how it can affect a person's independence and day-to-day needs. Visit our independent living pages here: https://www.epilepsy.com/living-epilepsy/independent-living to learn more about resources that are available & when help is needed. Additionally, you may want to consider keeping a journal or a diary. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for tracking seizures, setting reminders, recording your medical history, managing medication & other therapies, recognizing triggers, side effects, behaviors and other health events, which can be shared with yourhealthcare team. For additional information regarding seizure safety at night, please visit: https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe/safety-while-sleeping And review our seizure alert device factsheet with your doctor, to see if a seizure alert device is an option for you: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf Sometimes it's helpful to connect with other people who live with epilepsy, to ask questions, share experiences, find & give support to each other. Contact your local Epilepsy Foundation at: https://www.epilepsy.com/affiliates to find-support groups, events, and programs in your community. Or contact 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, andaccess to national and local resources. 1-800-332-1000, or contactus@efa.org. epilepsy.com/helpline

Hi,Thank you for posting. We understand this must be very upsetting and frustrating for you to experience, especially if you feel like your doctor is not listening to your concerns. It’s best that you follow-up with your healthcare team, (that you’re comfortable with) to discuss these episodes you describe further and if you continue to experience any changes in seizure types/frequency, side effects, symptoms, behaviors and moods, to determine what individual treatment plan is best for you. It is common for those living with epilepsy to report having difficulties with thinking & memory, so it’s also important that you continue to address those challenges and other concerns you may have with your healthcare team: https://www.epilepsy.com/learn/challenges-epilepsy  It can be challenging to find a healthcare team that you're comfortable with, but if you feel you can’t talk openly with your team or aren't working towards the same goals, it may be time to get a second opinion. For information regarding second opinions or assistance finding a specialist near you, please visit : https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist A key part of managing epilepsy is knowing how it can affect a person's independence and day-to-day needs. Visit our independent living pages here: https://www.epilepsy.com/living-epilepsy/independent-living  to learn more about resources that are available & when help is needed. Additionally, you may want to consider keeping a journal or a diary. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for tracking seizures, setting reminders, recording your medical history, managing medication & other therapies, recognizing triggers, side effects, behaviors and other health events, which can be shared with yourhealthcare team. For additional information regarding seizure safety at night, please visit: https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe/safety-while-sleeping  And review our seizure alert device factsheet with your doctor, to see if a seizure alert device is an option for you: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf Sometimes it's helpful to connect with other people who live with epilepsy, to ask questions, share experiences, find & give support to each other. Contact your local Epilepsy Foundation at: https://www.epilepsy.com/affiliates  to find-support groups, events, and programs in your community. Or contact 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, andaccess to national and local resources. 1-800-332-1000, or contactus@efa.org. epilepsy.com/helpline

Hi,Thank you for posting. We understand this must be very upsetting and frustrating for you to experience, especially if you feel like your doctor is not listening to your concerns. It’s best that you follow-up with your healthcare team, (that you’re comfortable with) to discuss these episodes you describe further and if you continue to experience any changes in seizure types/frequency, side effects, symptoms, behaviors and moods, to determine what individual treatment plan is best for you. It is common for those living with epilepsy to report having difficulties with thinking & memory, so it’s also important that you continue to address those challenges and other concerns you may have with your healthcare team: https://www.epilepsy.com/learn/challenges-epilepsy It can be challenging to find a healthcare team that you're comfortable with, but if you feel you can’t talk openly with your team or aren't working towards the same goals, it may be time to get a second opinion. For information regarding second opinions or assistance finding a specialist near you, please visit : https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist A key part of managing epilepsy is knowing how it can affect a person's independence and day-to-day needs. Visit our independent living pages here: https://www.epilepsy.com/living-epilepsy/independent-living to learn more about resources that are available & when help is needed. Additionally, you may want to consider keeping a journal or a diary. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for tracking seizures, setting reminders, recording your medical history, managing medication & other therapies, recognizing triggers, side effects, behaviors and other health events, which can be shared with yourhealthcare team. For additional information regarding seizure safety at night, please visit: https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe/safety-while-sleeping And review our seizure alert device factsheet with your doctor, to see if a seizure alert device is an option for you: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf Sometimes it's helpful to connect with other people who live with epilepsy, to ask questions, share experiences, find & give support to each other. Contact your local Epilepsy Foundation at: https://www.epilepsy.com/affiliates to find-support groups, events, and programs in your community. Or contact 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, andaccess to national and local resources. 1-800-332-1000, or contactus@efa.org. epilepsy.com/helpline