Jeavons Syndrome & Altered Mental Status Help

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hey there. So I was diagnosed with epilepsy when I was 15 after having 3 seizures that put me in the hospital my whole life. I have been doing the whole eye flutter thing since I was 3 years old but they never knew what it was. I am now 25 years old and have been trying all sorts of things to stop from the eye flutters. I am in grad school, work, really active, internships etc....somedays it leads to about 15-17 hour days. I know sleep is a part of it. Recently I was hospitalized for altered mental status (AMS), overexhaustion, and dehydration. They never did and EEG so they could never classify it as a seizure although I experienced all the post issues where my memory was struggling and hand was numb/couldn't write for a couple days. I had been taking CBD and likely overdid that leading up to this episode. The CBD has helped me in the past to stop the eye flutter and I'm wondering if that is what actually had stopped my from going into a full blown seizure this time, so I have mixed feelings about it. Now (a few weeks later) I have gotten more sleep and fixed my schedule more. I am however having issues sleeping and jumping awake, I get nervous if I need to wake up early for internships or classes, and I still stumble on spelling or writing sometimes. I know part of it is just mental but wondering if anyone else has had this issue after they have episodes? I know Jeavons is pretty rare but may happen for just epilepsy in general? ANY thoughts on Jeavons or meds or CBD or tricks for sleeping/anxiety will help. Thank you!!

Comments

eyelid myoclonia is also

Submitted by just_joe on Thu, 2017-09-28 - 17:19

eyelid myoclonia is also Jeavons syndrome. Fluttering eyelids. After you were diagnosed did they prescribe a medication? If they did when was the last time the dosage was changed? Seizures are caused by an electrical impulse hitting wrong in your brain. The seizure is the chain reaction caused by that wrong hit. medications are created to keep those electrical impulses from hitting wrong. They tend to slow the discharges some and yes CBD can do the same thing. MJ can do the same thing because it calms the central nervous system down. If you haven't had an EEG recently then do get referred to a neurologist that specializes in epilepsy and discuss these things with them

My son has hundreds of

Submitted by hopeful2_5a2fdce735363 on Tue, 2017-12-12 - 12:31

My son has hundreds of absence seizures a day. He had AMS in the mornings and eyelid flutters in bed while still trying to wake (the dreaded transition time between sleep and awake). The effect of undetected seizures and sporadic abnormal brain wave activity caused anxiety that he cannot get rid of. If he has clusters of nonconvulsive seizures, it takes him 2 weeks to 2 months to suddenly "click on" again and think quicker and clearly and be alert and act himself again, like he is waking up from a long brain fog. The last actual rare tonic clonic (from an adverse reaction to a med) took him 2 years to fully recover from: memory loss and relearning everything, hypersomnia all the time with all associated symptoms, just kinda physically existing but not really there mentally like usual, lots of hypervagal responses with orthostatic issues, dizziness, erratic HR episodes, episodes of hand tremors while trying to eat breakfast, not well regulated temperature and cold extremities (had to constantly put heated and weighted hot pads on him to get his temperature up), etc. After total crisis and critical care from a new medication, we had to fly him up to his specialists in another state, and they finally found a med that he could tolerate without emergency care, Onfi. He has an encephalopathy and newly diagnosed genetic condition, but only takes one med, he can barely tolerate the side effects from that, but he has to be medicated now so he doesn't go into status, progress to a tonic clonic, or stay in the AMS indefinitely. The onfi does not stop all his morning absences, but it does prevent the progression of anything worse and is more tolerated than anything he has ever taken with all failed trials of anything else and even other benzo's. He no longer has insomnia bouts, but still has chronic hypersomnia and can never wake normally before 10 am. He has to take his morning onfi dose 45 minutes before rising so he can wake normally. He must watch his brady and keep fluids up, especially gatorade if he is doing sports or sick, to keep the salt levels up. He takes melatonin with magnesium, made by NOW, every single night or wakes with twitchiness of the facial area. He must have 10-11 hours sleep and schedule to be in bed by that time and he MUST avoid computer electronics at least an hour before sleep or the excess activity will affect his sleep and worsen morning wake issues. When he is more stressed, his nerves are more on edge, he is irritable upon waking, more jumpy, overwhelmed feeling right from the getgo. Again, onfi has calmed all this too but spins him the other way, where he is calmer but lacks motivation or care. Possibly more accommodations could alleviate the test anxiety that has developed to an extreme over years of trying to take tests when you can't access memory, aren't aware there is even one assigned when you arrive to class, and deal with brain fog and the pressure is high. It is a tough area we are still working on and no teacher or school treatment is the same. He has a special therapist that deals specifically with medical issues as all mental health related issues stem from the medical and medication, so they must be addressed specifically in that context, according to his physicians. Only holistic physicians, biochemical pharmacists, and therapists trained in medical cases can assist with whether symptoms are from medications or the medical situation itself. You have to monitor yourself and keep documental journals to help you sort it all out with the right professionals. Trust yourself and get the right medical professionals to really listen so you get individualized and proper care for you as an individual.

My son has hundreds of absence seizures a day. He had AMS in the mornings and eyelid flutters in bed while still trying to wake (the dreaded transition time between sleep and awake). The effect of undetected seizures and sporadic abnormal brain wave activity caused anxiety that he cannot get rid of. If he has clusters of nonconvulsive seizures, it takes him 2 weeks to 2 months to suddenly "click on" again and think quicker and clearly and be alert and act himself again, like he is waking up from a long brain fog.  The last actual rare tonic clonic (from an adverse reaction to a med) took him 2 years to fully recover from: memory loss and relearning everything, hypersomnia all the time with all associated symptoms, just kinda physically existing but not really there mentally like usual, lots of hypervagal responses with orthostatic issues, dizziness, erratic HR episodes, episodes of hand tremors while trying to eat breakfast, not well regulated temperature and cold extremities (had to constantly put heated and weighted hot pads on him to get his temperature up), etc. After total crisis and critical care from a new medication, we had to fly him up to his specialists in another state, and they finally found a med that he could tolerate without emergency care, Onfi. He has an encephalopathy and newly diagnosed genetic condition, but only takes one med, he can barely tolerate the side effects from that, but he has to be medicated now so he doesn't go into status, progress to a tonic clonic, or stay in the AMS indefinitely. The onfi does not stop all his morning absences, but it does prevent the progression of anything worse and is more tolerated than anything he has ever taken with all failed trials of anything else and even other benzo's. He no longer has insomnia bouts, but still has chronic hypersomnia and can never wake normally before 10 am. He has to take his morning onfi dose 45 minutes before rising so he can wake normally. He must watch his brady and keep fluids up, especially gatorade if he is doing sports or sick, to keep the salt levels up. He takes melatonin with magnesium, made by NOW, every single night or wakes with twitchiness of the facial area. He must have 10-11 hours sleep and schedule to be in bed by that time and he MUST avoid computer electronics at least an hour before sleep or the excess activity will affect his sleep and worsen morning wake issues. When he is more stressed, his nerves are more on edge, he is irritable upon waking, more jumpy, overwhelmed feeling right from the getgo. Again, onfi has calmed all this too but spins him the other way, where he is calmer but lacks motivation or care. Possibly more accommodations could alleviate the test anxiety that has developed to an extreme over years of trying to take tests when you can't access memory, aren't aware there is even one assigned when you arrive to class, and deal with brain fog and the pressure is high. It is a tough area we are still working on and no teacher or school treatment is the same. He has a special therapist that deals specifically with medical issues as all mental health related issues stem from the medical and medication, so they must be addressed specifically in that context, according to his physicians. Only holistic physicians, biochemical pharmacists, and therapists trained in medical cases can assist with whether symptoms are from medications or the medical situation itself. You have to monitor yourself and keep documental journals to help you sort it all out with the right professionals. Trust yourself and get the right medical professionals to really listen so you get individualized and proper care for you as an individual.

My son has hundreds of absence seizures a day. He had AMS in the mornings and eyelid flutters in bed while still trying to wake (the dreaded transition time between sleep and awake). The effect of undetected seizures and sporadic abnormal brain wave activity caused anxiety that he cannot get rid of. If he has clusters of nonconvulsive seizures, it takes him 2 weeks to 2 months to suddenly "click on" again and think quicker and clearly and be alert and act himself again, like he is waking up from a long brain fog. The last actual rare tonic clonic (from an adverse reaction to a med) took him 2 years to fully recover from: memory loss and relearning everything, hypersomnia all the time with all associated symptoms, just kinda physically existing but not really there mentally like usual, lots of hypervagal responses with orthostatic issues, dizziness, erratic HR episodes, episodes of hand tremors while trying to eat breakfast, not well regulated temperature and cold extremities (had to constantly put heated and weighted hot pads on him to get his temperature up), etc. After total crisis and critical care from a new medication, we had to fly him up to his specialists in another state, and they finally found a med that he could tolerate without emergency care, Onfi. He has an encephalopathy and newly diagnosed genetic condition, but only takes one med, he can barely tolerate the side effects from that, but he has to be medicated now so he doesn't go into status, progress to a tonic clonic, or stay in the AMS indefinitely. The onfi does not stop all his morning absences, but it does prevent the progression of anything worse and is more tolerated than anything he has ever taken with all failed trials of anything else and even other benzo's. He no longer has insomnia bouts, but still has chronic hypersomnia and can never wake normally before 10 am. He has to take his morning onfi dose 45 minutes before rising so he can wake normally. He must watch his brady and keep fluids up, especially gatorade if he is doing sports or sick, to keep the salt levels up. He takes melatonin with magnesium, made by NOW, every single night or wakes with twitchiness of the facial area. He must have 10-11 hours sleep and schedule to be in bed by that time and he MUST avoid computer electronics at least an hour before sleep or the excess activity will affect his sleep and worsen morning wake issues. When he is more stressed, his nerves are more on edge, he is irritable upon waking, more jumpy, overwhelmed feeling right from the getgo. Again, onfi has calmed all this too but spins him the other way, where he is calmer but lacks motivation or care. Possibly more accommodations could alleviate the test anxiety that has developed to an extreme over years of trying to take tests when you can't access memory, aren't aware there is even one assigned when you arrive to class, and deal with brain fog and the pressure is high. It is a tough area we are still working on and no teacher or school treatment is the same. He has a special therapist that deals specifically with medical issues as all mental health related issues stem from the medical and medication, so they must be addressed specifically in that context, according to his physicians. Only holistic physicians, biochemical pharmacists, and therapists trained in medical cases can assist with whether symptoms are from medications or the medical situation itself. You have to monitor yourself and keep documental journals to help you sort it all out with the right professionals. Trust yourself and get the right medical professionals to really listen so you get individualized and proper care for you as an individual.