So Lexi’s having a seizure, now what?

Because of the frequency and unexpectedness of my seizures, I wanted to share a protocol with you all in the event I might need help one day.


#1. Stay calm, I know that it can be very frightening but it WILL end and I WILL be okay.


What you need:

  1.  Warm/hot water
  2.  My container or packet of medication called Di Long. (If not on me, in my purse, see below)
  3.  Straw

Take 1-1.5 scoops or one package of the powder and stir into hot water. (You may need to cool off the water with cold water so I can drink it.)  Once it is mixed, stick the straw in my mouth if it is safe to do so. If I am fully seized, you will have to wait until I settle enough to safely drink it. 


Di Long (both in the packet and the blue lid container) is what helps my seizures the most. In my Tylenol bottle I also carry extra anti-seizure/nerve medication I’m on which may be needed later but not necessary at the time of the event (see below).



What to do next:

  1. If I have taken my drink, take a deep breath, it will only get better from here.
  2. If I haven’t taken my drink, please do not breathe until accomplished…. jk but in all seriousness  please make this a top priority.
  3. Ensure that I am laying down somewhere that it is less likely for me to hurt myself and protect my my head. (Moving me too much can make things worse, but I trust in you to do what you have to do to keep me safe.)
  4. Remember that it could get violent, but know if you have done 1,2,3 you are doing all that you can.
  5. It will likely alternate from worse to better several times before ending, but it will end I promise. Usually between 15-45min.  ***If after 1hr it hasn’t settled and I’m silent with shakes, I likely need a second dose of my powder medication (Di Long).  If it is pain related (I will tell you or you will know from my cries) at this time you can also open the blue container and give me one yellow (Gabapentin) and one white  (Tylenol) and wait another 30 minutes before deciding if I need to go to the hospital for pain management.  (Drug allergies: Codeine)

Gabapentin is an anti-seizure medication and can be given with or without Tylenol or a second dose of Di Long if the tremor hasn’t subsided after 1hr.


What happens post seizure:

  1. When it’s over, I will likely be very confused, tired and in pain. Be patient with me as a relearn how to focus my eyes and use my words.
  2. I may ask for gravol or Tylenol, they will both be with the original medicine bag you gave me if you haven’t already discovered them from above.
  3. I will likely tell you I’m sorry, and you will likely tell me I shouldn’t be, but please know that I am, because as much as I wish I didn’t have to go through this I wish you didn’t have to either.
  4. If I can’t talk much or pain is inhibiting my words, please know I am more grateful than you will ever know to have you by my side.
  5. Once I get moving, I will likely be slow and my balance and coordination will be that of a heavily intoxicated individual.
  6. I will tell you I am fine,  but I am likely not. Please stay near until I can recite the alphabet backwards can get where I need to be.  Although I am stubborn I might not make it there without your help, or at least until I “sober up” a bit and start making more sense.

Thank you for taking the time to read this and potentially helping me in the future. I know that is is a lot to take in and I hope we never have to encounter this together, but if we do at least we will be half ass ready for it together.



P.S . If you are planning to visit me or think you might encounter me in public somewhere, additional contact numbers available on request.