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Worse with Age
Thu, 12/19/2019 - 19:50Topic: Share Your Story
My husband was diagnosed with epilepsy when he was 6. He had very infrequent seizures (maybe 1-2 a year) medication controlled them completely and his doctors were confident he would put grow them. As a teenager he would often skip doses for months at a time with no issues. As an adult he would rarely miss any but within the last few years (he is 34) his seizures became more frequent. He was on depakote but had break through seizures - he was having at least one episode a month with each episode containing 2-3 seizures about 30-45 min apart. He has been switched to keppra which seems to work but if he misses even a single dose he is pretty much guaranteed to have a seizure.
No dr has been able to determine the trigger for his seizures, nor have they been able to pinpoint the area of the brain they occur in.
He has clonic-tonic seizures and enters a “spacing out phase” that lasts about 30 sec. before hand
Anyone have any luck diagnosis going previously indiagnosed cause like this, or have any idea why the drastic change in frequency?
Hi, Thank you for posting. We
Submitted by Anonymous on Mon, 2019-12-23 - 08:51
Hi, Thank you for posting. We cannot determine why your husband is experience more frequent seizures. It’s important that you all are continuing to follow-up with his healthcare team to explore this further and if he continues to experience any changes in seizure frequency, types moods,behaviors or symptoms. If you have not already, you may want to consider having your husband see an epileptologist (epilepsy specialist) or seeking a second opinion. For assistance finding a specialist near you, please visit: https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist or a second opinion: https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinionsIt may be helpful to keep a diary or a journal. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for not only tracking seizures, but recording his medical history, setting reminders, managing medications,side effects, behaviors, moods, symptoms and other health events that may affect wellness, which can be shared with his healthcare team.It is common for those who are in caregiver role to feel overwhelmed. It’s important to remember that you are not alone, and it is just-as important to make sure you’re taking care of yourself as well.https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdf It may be helpful to connect with other people who live with or care for those 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 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, or contactus@efa.org. epilepsy.com/helpline