Advice? Still having seizures and MRI is normal.

One other thing about a TIA, it may not show up on an MRI because it doesn't cause permanent damage according to my neurologist. He does tele-visits if that helps @ 727-528-2272

@santohsa
Transient Ischemic Attack.
Some people who have TIAs suffer strokes at a later time.
I sometimes wonder if a stroke caused my epilepsy. Some doctors believe the dark spot on my brain is evidence of a stroke when I was young.
One more curiosity that I’ll never know the answer to.
Hope all's well with you,
Jake

Good Morning Jake @jakedduck1
Good Morning @tonyde

Thank you so much for your explanations.
Wishing you all a nice day!

Chris (Santosha)

Hi Jake @jakedduck1
I am not a doctor, but I do believe that strokes can lead to epilepsy. I have recently met online a person whose epilepsy got much worse through cardiac arrest. Here is her story:
https://laurencanaday.substack.com/account
I am OK thank you. Hope you too,
Take care!
Chris

@maureendigi, just wondering how your brother is doing lately?

@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.

@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

@santosha Its not the medication change - we added the medications because I was experiencing the small seizures. Stress & poor sleep are kind of my life so no changes but are definitely there. As far as hormones that might be something to look at. I am well past menopause but am still experiencing hot flashes so maybe I should talk to my PCP about that.
I am optimistic about the Zonisamide - I started it a couple of days ago and no side effects so far but its only 50mg right now. I go up to 100mg Sunday. From what I have heard on this group its one that seems to work for a lot of people. I'm sure we'll find the right one it just always sucks finding it! Thank you 🙂

@ldlauwers my pleasure 😊!
From what I've learned, hormonal changes can definitely impact seizures even post-menopause. It's worth exploring with both your PCP and your neurologist.
I find stress and sleep are the most challenging triggers to manage. Traditional yoga and practicing sports (I love playing tennis) have helped me manage these triggers. Since my sleep isn't as good as it once was, I practice Yoga Nidra daily after lunch and feel so energized afterward. It's said that 30 minutes of Yoga Nidra can represent up to 3 hours of deep sleep! I also see a neuropsychologist regularly, which helps me deal with my stress more effectively.
And you, what have you been trying to manage these triggers?
I'm crossing my fingers that the new dosage of Zonisamide stops your seizures and that your body adapts well to it. 🤞
Chris

Hi @maureendigi - wondering how things are going with your brother?