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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 Sandra,In that case, I

Submitted by Patriotrehab on Tue, 2020-04-14 - 22:05
Hi Sandra,In that case, I would advise you of a couple of things to help you in working with your son’s epilepsy specialist. They are very busy and many times they don’t always get the messages from their nurses or medical assistants because their staff has a triage process that they go through and what the doctor thinks is important to hear about is not always the same as what a nurse or medical assistant thinks. Usually the doctor wants to hear about it, but some patients do not have good boundaries and that’s why the staff members think they need to serve as gatekeepers at times. The doctor may not be willing to schedule an extended video EEG monitoring right now because of COVID-19, but I would recommend that you ask for at least a 7 day period to include taking him off of his medication and sleep deprivation as well as other methods to try to induce seizures. You mentioned that missing medication can be a trigger, but it sounds like poor quality of sleep may be one too, so the sleep deprivation technique that they can try two or three times in a seven day period may give them lots of information and help them determine better treatment options. They did that with me last year and I finally feel like we are closer to the right medication options because they compared it to my first extended video EEG and they got different results, which verified what I had been reporting to them for 19 years. It’s great that your son sent a message and I hope that his doctor will be willing to do the study when they feel it’s safe with all the coronavirus restrictions lifted. 

Hi szerry and son,epilepsy is

Submitted by irangel on Tue, 2020-04-14 - 23:22
Hi szerry and son,epilepsy is idiopathic and, unfortunately, the neurologists are overwhelmed with the many young, middle age and senior citizen patients that the doctor's only solution is to prescribe one drug after another just to counter their patient's idiopathic symptom.  With your son's case, it maybe an over reaction to a very common chemical compound found in items that he encounters, every so often, in his daily life.   Please take a look at  https://atkinsforseizures.com/dietary-chemical-seizure-triggers/ .........or it can be something else that dietary change/daily avoidance will never heal.If your son's seizures are triggered from dietary-chemical triggers, your son will only be able to pinpoint that 'invisible trigger' by following epilepsy.com's recommendation to diligently(!) keep a 'My Seizure Diary'.  Excuse me if need be, do so.....religiously.Irma

Thank you Gianna. My son has

Submitted by szerry on Wed, 2020-04-15 - 20:06
Thank you Gianna. My son has an appointment with his neurologist  in a few weeks and I will definitely discuss this with him. Thank you again for all the great information. 

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