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Advice? Still having seizures and MRI is normal.
Epilepsy & Seizures | Last Active: Mar 24 3:55pm | Replies (42)Comment receiving replies
@santosha I have TLE also since I was a teenager. I started having seizures after I was 15 after a golf club to the head but never told my parents. It wasn't until my early 20's that I told my mother and was brought to a Dr. When I was first diagnosed the MRI's showed abnormalities in the left temporal lobe. MRI's since have not changed even though new seizure activity occurred. I have had numerous EEG's 24 hr and in hospital. Most of the time there was little to no activity but at one in hospital EEG I was having a day where myoclonic jerks were numerous that showed seizure activity. Recently I started having small, short seizures where I just feel out of it for a few seconds. We are now tweaking medications again. I hate this part of it. So many side effect until you find something that works.
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@ldlauwers Hi!
Thank you for sharing more of your epilepsy journey!
I'm so sorry to hear about the accident at the golf club that led to your epilepsy. I've met others who also developed temporal lobe epilepsy after accidents—some from bike falls, for example. My temporal lobe epilepsy started after an accident when I was 5 years old (1975).
Like you, my MRI hasn't changed since my diagnosis in 2019, but my seizures have evolved. I've learned that seizures can change over time even when MRIs show no structural changes, because they're driven by complex electrical and chemical activity that isn't always visible on brain imaging.
Several things can contribute to changing seizure patterns, such as:
- Medication factors: The body can develop tolerance to anti-seizure medications over time, or seizures may increase during the transition period when switching medications.
- Hormonal fluctuations: Especially in women, hormone levels can significantly impact seizure frequency and severity.
- Triggers: Stress, poor sleep, illness, or nutritional changes can accumulate and alter seizure patterns without causing structural brain changes.
- Ongoing seizure activity: My current doctor explained that when the brain experiences frequent seizures, it can adapt to them, which may affect how seizures manifest over time.
Since you've recently changed AED medications, that could definitely explain the shift in your seizure patterns. Have you noticed any changes in those other areas—sleep, stress, hormones, etc.?
I know well the challenges of changing medications. I tried many over the years until one was prescribed that helped me with my seizures with tolerable side-effects. Please persist!
I'd encourage you to discuss this with your doctor as well. He or she might have additional insights specific to your situation.
Sending strength your way and keep me posted on how things evolve!
Chris
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