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Need help with brain fog
Fri, 10/18/2019 - 13:55Topic: Share Your Story
I was diagnosed with epilepsy since the age of 8. I use to get petti mal which is a starring spell and grand mal which is like holding a live electric wire. Before that, I get auras since the age of 5. No matter what combination of meds my doctor tried, I still keep having seizures. At the age of 24, he then recommended to be tested if I am a fit for a brain surgery. The left frontal lobe of my brain was removed which was 95 percent successful . Meaning I am 95 percent seizure free but since I still have 5 percent chance of getting my seizure back , I was told to be on my meds for life. His explanations was that, my brain was used to getting seizures now that the damaged part of my brain was removed, it created a mirror image of the problem to the other side of my brain and if I get my seizures back the surgery will not be in any option. I’m now 45 and still no seizures. I still get auras once in a while mostly when I feel cold but no serious seizures. Although I have been seizure-free the med causes a lot of brain fog. What options are there to improve this problem?
Comments
Hi Mrkulit149, Thank you for
Submitted by Anonymous on Fri, 2019-10-18 - 16:41
Hi Mrkulit149, Thank you for posting, it sounds like you've been through a lot. Recovering from epilepsy surgery is a journey. Learn more about the recovery process and common themes for people living with epilepsy & family members during their journey through epilepsy surgery, here: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgery/recovery-and-life-after-surgery Treatment varies for each individual, so it’s important that you're following- up with your doctor to determine what individual treatment plan is best for you and if you experience changes in seizure types, frequency, behaviors, side effects and symptoms. 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 As Gianna mentioned in her comment, it may be helpful to keep a journal or diary. My seizure diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary may be used to identify & track seizures, other symptoms, managing medication & other therapies, setting reminders, recognizing triggers and health events that may affect seizures and wellness, which you can share with your providers. Additionally, you may always contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000 contactus@efa.org, where a trained information specialist can connect you to resources, provide referrals and additional support. epilepsy.com/helpline Or contact your local Epilepsy Foundation at: https://www.epilepsy.com/affiliates to find support groups, events, and programs in your community
Some AEDs don’t cause “brain
Submitted by Patriotrehab on Fri, 2019-10-18 - 15:18
Some AEDs don’t cause “brain fog” while others do, but you could also be experiencing this symptom as a consequence of the brain surgery or even what you call auras which are actually focal onset awareness seizures formally called simple partial seizures or “auras”. It can be hard to sort this out without discussing it with your doctor and even talking about trying an alternate medication for seizure control. For example, I take Topamax which many people complain about problems with “brain fog” or similar symptoms, but I don’t experience that from it even though I have a cognitive impairment which comes from my original injury and possibly epilepsy related complications. Sometimes neuropsychological testing can help identify what your specific limitations are and make recommendations if after talking with your doctor and trying a different medication doesn’t work. But, many times...cognitive issues are things that we have to learn how to cope with day to day if it’s not something that can be remedied with a medication adjustment. Learning strategies like keeping a calendar, journal, setting reminders, etc are just some of the ways that many people use to help them stay on track. But, until formal neuropsychological testing is done (especially post-surgery) and after it was ruled out that the specific medication that you are on is causing this symptom...it would be hard to know for sure what tools could help you.