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New and Confused

Mon, 04/13/2020 - 18:28
My son had his first seizure a year and a half ago, at age 19, while away at college. He started out with a severe headache that then progressed to chills and a general feeling of being very ill. This lasted several hours, until he had a tonic-clonic seizure. All tests came back negative, and he was not put on any meds. Three months later he had the same symptoms leading up to another seizure. At that time they put him on Keppra. He came home at the end of the school year, and had his 3rd episode while I was present, about 4 months after the second one. It turned out he had missed several doses of his meds. He did not have any of the previous symptoms he displayed the first two times such as the severe headache and chills. I am assuming that was because he was taking Keppra and even though he had missed doses it still had some effect. For ten months we were fine, then last month he has a seizure in the shower, again while I was home. This was particularly scary as he hit the bathtub hard and we had to take him to the ER to make sure he had no other injuries. It turns out that he missed several doses of meds over the last month. It’s not like he purposely forgets, but his schedule is erratic and he just misses doses accidently. Nevertheless we put some things in place to reduce this – a med reminder app, we call/text him and remind him, we check his remaining meds regularly to be sure he’s taking them. So a few days ago, one month after the shower incident, he had another seizure. This time he has been taking all his meds, not missed anything in the last 30 days, yet he still had a seizure out of the blue. Both these last two seizures were not like the first two, before he started meds. They were much less severe but still tonic – clonic seizures. He has never had seizures so close together. We thought he was doing fine on Keppra and it was doing the trick, so why did he have this seizure now? His neurologist added another med – Zonegran, which he just started. But I am a nervous wreck because I am worried he will have another seizure any minute. I have no confidence that his meds are working because we thought the Keppra was working before, and that the only issue was skipped doses. He had done great for 10 months – he was driving, we didn’t worry about leaving him alone, we felt it was under control. Now I am scared to death to leave him alone. Luckily I am currently working from home 100% due to COVID 19 but eventually I will have to go back into the office. With every seizure he vomits afterwards. Because he is disoriented it is really hard for us to get him to stay on his side, which makes me more frightened of what could happen if he were alone. This last time he also had several bouts of chills after the seizure – but not until about 8 hours later. I can’t seem to relax and I am anxious all the time, constantly checking on him in the middle of the night and multiple times during the day. Has anyone had similar issues? Is the headaches and severe illness before his first two seizures normal and does it make sense that the meds would alleviate some symptoms? Does the fact that he missed some doses of Keppra make it less effective later, even when he doesn’t miss doses? What about the vomiting? I would appreciate if anyone has had a similar experience they could share or if anyone can provide some information that may help calm me down. I just feel anxious and worried constantly. Thank you very much.

Comments

Hi. I’m a licensed clinical

Submitted by Patriotrehab on Mon, 2020-04-13 - 21:33
Hi. I’m a licensed clinical social worker and certified rehabilitation counselor as well as a person with epilepsy. It sounds like you and your son have been through a lot. My epilepsy started when I was 19 too and it’s been almost twenty years ago now. As one of my epilepsy specialists explained to me, missing even one dose of medication can take up to five days to get the levels back into your blood that you need for seizure control, so missing several doses can be catastrophic for a person. As to why he may have had a seizure more closely together even when there wasn’t a missed dose in a month’s time, there could be a possible trigger such as sleep deprivation or stress or there could be no trigger, which is the case for most seizures. Most seizures are random and that’s the basis for the definition for epilepsy. If his seizures do not become controlled after two medications or a year of treatment, you may want to seek more specialized care through an epilepsy center where they have neurologists that are also known as epilepsy specialists or epileptologists who have access to other testing like high resolution MRI, extended video EEG monitoring, and neuropsychological testing as well as different medication and other treatment options. Someone from the Epilepsy Foundation may be responding to you over the next couple of days with some links to get you information on that. Some medications work better for some people than they do for others and epilepsy can change over time for some people too. The important thing is not to give up hope. My epilepsy is different than his, but that is typical. I’ve never met another person who experiences seizures exactly the same as me, but there are people who experience similar things because their seizures start in the same part of the brain. Your son’s seizures sound like they are generalized seizures, meaning that they affect the whole brain rather than being focal in nature. But, the feeling “sick” beforehand may be focal seizures that haven’t been identified yet and should be discussed with the doctor. Many times the only way to know for sure is to have an extended video EEG monitoring where they can capture a typical event for the doctor to see. 

Hi,Thank you for sharing your

Submitted by Anonymous on Tue, 2020-04-14 - 08:55
Hi,Thank you for sharing your story and we understand your concerns. Treatment and how the body may react to certain medications varies for each individual. The goal of treatment with medicines should be –No Seizures and No Side Effects. However, we know that some individuals may experience too many side effects, that are very bothersome or cause other health problems. To learn more about the medications your son is taking and things to look for, visit: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effects . It’s important that you’re continuing to express your concerns regarding his change seizure frequency with her healthcare team or if you notice any changes in moods, behaviors, symptoms or side effects, to help determine what individual treatment plan may be best for him.  Many clinics and offices are now offering telemedicine options for non-emergencies, or routine check-in appointments. Ask his doctor’s if you can schedule a time to talk via phone/ other telemedicine resources you can utilize, or if they can make any additional recommendations for him. As Gianna mentioned in her comment, you all may want to consider seeing an epileptologist (epilepsy specialist), to receive more specialized care for his epilepsy at a comprehensive epilepsy center, for further evaluation. https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist/find-epilepsy-center . We understand this may feel overwhelming. However, there are many things you can do to help your son manage his epilepsy and reduce these feelings. We are glad to hear that your son has found a system that works well for him, so he remembers to take his medications as prescribed by his doctor. He may also want to keep a journal or a diary to track his seizures. My Seizure Diary can be used to organize health issues, manage medications, record side effects, develop seizure response plans, and more, which can be share with his healthcare team: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary . Review our seizure alert device factsheet with your his doctor to see if a seizure alert device is an option him: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf  . To learn more about how to identify potential risks, safety tips and seizure first aid, visit: https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe/safety-home.  It’s important to remember that you are not alone, and that you’retaking care of yourself and making your health and overall well-being a priority. It can be helpful to connect with other parents who may have similar experiences, to ask questions, find & give support to each other, by visiting:  https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/parents-helping-parents  Contact your local Epilepsy Foundation: https://www.epilepsy.com/affiliates or 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

Thank you Gianna.  I really

Submitted by szerry on Tue, 2020-04-14 - 20:11
Thank you Gianna.  I really appreciate your feedback and your encouragement.  We are lucky to live near a large Medical Facility that includes a level 4 Epilepsy center. He had the basic EEG, MRI and the EEG where they tried to induce a seizure.  His neurologist is an epilepsy specialist,but I just feel like there are so many unanswered questions.Plus his neurologist does not get back to us without us having to call or reach out many times.  One thing that came to me suddenly last night was the realization that his last three seizures (since he started his meds) occurred in the morning, about 1-2 hours after waking up.  I don't know if this means anything or not, but he did send a message to his provider who will hopefully respond soon.  I am not sure what the extended video EEG monitoring is, so I will look into that. Thank you again for all this information.

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