Seizure Support Tools

Hi @dannoyes
Seizure must be a little difference for all of us causing ways… I’m sorry your use of “brain-use” problems… and for me, I had/has a bicycle accident when I feel down on the top of my head that made me a TBI Member. 80% of my brain-use is/was gone.

Now for seizure, I took a great - over time - meds help me for the last 4 years, but I take these meds are 3 times a day, but sometimes it’s. A weird felling - sometimes.’

Thx,
Greg D. @greg1956

@dannoyes,
Hi Dan,
I'm so sorry to hear about your nightmare. It reminds me of the terrible nightmares I experienced in 2019/2020 when I was taking Alprazolam (commonly known as Xanax) for insomnia. While the medication helped me fall asleep, it caused vivid and disturbing nightmares. I definitely wouldn't recommend it.
Have you been experiencing these nightmares frequently? Are you currently taking any sleep medication?
Chris

@dannoyes
Hi Dan!
I understand how much insecurity epilepsy can bring into our lives, especially when seizures aren't fully controlled. But as you mentioned, tools and strategies can help reduce that insecurity, not letting epilepsy take full command of our lives and imprison us.
Like you, I make use of several precautions that help me manage this insecurity:
- Medical ID bracelet: I wear one with information about my epilepsy, current medications, and contact details for my doctor and husband. During my seizures (mostly complex partial seizures), I have difficulty speaking, but I can still extend my arm to show my bracelet.
- Sharing information about my epilepsy proactively: I've informed places I visit regularly—like my yoga studio, tennis club, and Pilates studio—about my epilepsy and provided my husband's contact information. This way, if I have a seizure, they know how to respond and can reach my husband quickly.
- Staying connected: I always tell my husband when I'm leaving home and where I'm going, and I keep my phone with me so he can track my location.
- Recognizing warning signs: I don't leave home alone if I've experienced some warning sign that a seizure may be approaching—something I learned to identify through the Andrews-Reiter trigger management approach.
One thing that really helps me is making these precautions automatic habits rather than constant reminders of my condition. It's like wearing a seatbelt—just part of my routine!
Chris

@santosha I love your approach and appreciate your insights. I realize that when I've gotten into trouble was I didn't listen to the warning signs or tried to "power through" hoping if I just worked harder things would improve. Obviously, that never worked. ;o)

@santosha I had a very hard time falling asleep so I took melatonin. I knew the potential risks with my meds, but I was so exhausted. I took your advice and stopped taking melatonin, and the nightmares stopped. Thanks, as always, for your valuable insights.

One interesting thing I heard today from my neurologist was that your seizures can flare from a wide variety of normal events, but they can boost your meds temporarily just until things stablize again. In other words, a temporary adjustment. Previously, my neurologists would look at any flare as being long-term and would increase my dosages or add a new med. So a short-term flare suddenly had a long-term response.

@dannoyes
My pleasure Dan!
Learning to recognize my warning signs was one thing—learning to respect them was another battle entirely. My first instinct was to push harder, as I'd always done, but that only made things worse. Respecting my warning signs meant accepting my epilepsy and all the life changes it brought, which proved to be the hardest part. My neuropsychologist was invaluable in helping me through this acceptance.
Even now, when everything feels stable and well, I sometimes forget to honor these boundaries. I usually pay the price for that oversight.
But there's been an unexpected gift in all of this: epilepsy has taught me to be kinder to myself and to set healthier limits across many areas of my life.
Do you see it this way too?
Chris

@dannoyes
I'm so happy to hear that your nightmares have stopped! 🙏
Sleeping well is a gift I only fully appreciated once I lost it.
One practice that helped me compensate for sleepless nights earlier in my epilepsy treatment was yoga nidra. Often called "yogic sleep," it's a guided meditation that induces deep relaxation while you remain conscious—a state of profound rest without actually sleeping.
How it works: You lie down in a comfortable position (usually on your back) and follow verbal instructions from a teacher or recording. A 30-minute yoga nidra session can feel as restorative as up to three hours of deep sleep.
Thankfully, I no longer suffer from insomnia, but my sleep isn't always restorative—and I know poor sleep is one of my major seizure triggers. So I practice yoga nidra daily after lunch, which helps me recharge and stay grounded for the rest of the day while also protecting me from seizures.
If you're interested, I'd be happy to share more information and some recordings to get you started.
Last but not least. Thank you for sharing this interesting insight from your neurologist. If I understood correctly, seizure activity can increase temporarily, requiring an extra dosage of medication for a while. Once the situation stabilizes again, the patient can return to their previous dosage. Did I capture your message correctly?
Chris