I find it extremely helpful to keep a seizure diary. Not only for my benefit but also for medical professionals. It shows them how frequent my seizures are and they can see if they notice any patterns in the frequency.
What’s in my diary
When I note down a seizure I also take note of what I was doing, how much sleep I had, when I last took my medication and if there was anything stressing me out. These are my main triggers. I find it relevant to include anything that may have contributed to bringing the seizure on.
What’s been learned
My seizure diary has proved very helpful towards finding a root cause for my seizures. Due to keeping note of the seizures between me and my epilepsy specialist noticed that my seizures occur during a specific time of the month, over a 1-2 week period. This has helped me to find solutions and manage them better.
What I use
My seizure diary helps me to keep track of my seizures, my memory isn’t all that great, so I forget dates and times very easily. Having the diary means that if someone asks me when my last seizure was, I just open up my phone notes app and its there. I use my phone because I always have it with me. It’s very practical but I also write it in a note book how frequent both tonic-clonic and absence seizures are happening. On the off chance my phone breaks or I lose it, I just think its practical to have a back-up.
How it’s helped
Overall, a seizure diary has helped me in lots of ways:
- Overcoming denial
- Finding a pattern that lead to looking for possible solutions
- Helping me to explain everything in as much detail as possible to my epilepsy nurse and neurologist
- My medication being changed, which has been really positive
- And my brother and I were put forward for genetic testing
It really is extremely helpful!
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