The best suggestion I can give you while you wait is to keep a very detailed journal. Even when it's hard to write or color (I'll show the coloring part in a minute), it's going to be extremely beneficial for you and your epileptologist. Trust me, I've done a body chart coloring that looked like a two year old did it since it was during one of my 'shocking' episodes. I re-did it the next day for clarity, but kept both copies.

(Copied from my old post)

Tips For People With Epilepsy & Seizure Disorders

• Keep a Journal
• Print out blank anatomy charts (several copies) and buy a nice set of highlighters/Markers
• Write down each color for each sensation. Example: Red:Sharp Pain - Orange:Tingling - Yellow:Numbness - etc..
• Keep several folders. One for yourself, one for your Neurologist/Epileptologist, one for any ER doctors you may have to visit, etc.
• Make SURE you have a MedAlert Bracelet/Necklace or an Emergency Card!
• Update your Journal daily, at the end of each week - in a new notebook, recap each new concern you may have. This will assist you in communicating with your doctor(s)

What is the purpose of this?

Your journal will be in the format of a seizure log. You can create your own, I have made my own and would be willing to share if you'd like to use the format. Otherwise, you can find many online.

My format has blank spots for the following things:

• Date: (This is to list the date of the seizure, aura, or any strange/new sensations)
• Time (This is to write down the time of my seizure, aura, or any strange/new sensations)
• Duration (This is to mark how long the episode(s) listed above may have lasted)
• Symptoms (This is to explain in detail about the symptoms)
• Activities During Episode (This is to list what I was doing at the time or prior to the episode)

What in the world are the anatomy charts and markers for?

Sometimes, as with many people who have Neurological complications - our short term (and sometimes long term) memory isn't a great friend of ours. We may forget important details our doctors need to know. Keeping these charts and 'coloring' the affected areas will allow them to see -visually- what exact areas you were attacked in. Having a journal log attached with this will give them the best idea possible, allowing them to properly diagnose you (if that applies).

As shown in the examples below (You can save these images via -> Right click, save as) - You can have one with a date, or if you'd like to explain via color - just color in each box and add whatever sensation to it's matching color (You should use the blank one, and a similar format but using your own sensations).

[In the image below, you'd color in grey boxes]

[In the image below, this is an example of what a finished chart would look like]



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Get some paper clips, so that way if you have to use your body charts, you can attach them to the journal you have. I keep copies of my journal - one for my neurologist, one for myself.

I also keep copies of all tests I have had done, and make more copies for each new doctor I see. This saves time and money on medical record requests.
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Hopefully, this information will help any people who needed a better way to organize their hectic seizure-life!

(Keep in mind on the images, I had to edit them really fast. I keep copies on my desk and color on them as needed, my computer copies aren't as fancy if no time was invested!)