November is National Epilepsy Awareness Month!
This blog was shared with eJourney at the Epilepsy Foundation to continue my advocacy in helping others.
This truly has change the way I live my life. I was challenged with getting a diagnosis, pushback and finally help.
At 19, never had a symptom was working at WTC. January 20, 2000, I was working, and I had a seizure in the stock room. It was told to me that I had a mini stroke, it was not until I was 22 that I realized I was having ongoing seizures. It was not until I was 35 that I was finally diagnosed. It was not until I visited a doctor in LI, NY that I found out I had Catamenial epilepsy (CE). I still do not take medicine for this condition and I have learned to live with this issue but still seeking help.
The Epilepsy foundation states that “Catamenial epilepsy is a gender-specific type of epilepsy in which seizure frequency intensifies during certain phases of the menstrual cycle. An increase in seizures in parallel with the menstrual cycle in some women with epilepsy has been noticed since ancient times.” (Iyenga, 2016)
The Epilepsy Foundations stated that “Studies show that changes in seizures are most often in the middle of the cycle around ovulation and about a week before menstrual bleeding” (Steven C. Schachter, 2013) At the time when I had my first seizure it was during middle of my cycle. Also, when I started tracking my seizures, I was finally able to see the pattern fifteen years later. I would have different types of seizures and I couldn’t explain it, I have learned that “Many people with epilepsy have more than one type of seizure and may have other symptoms of neurological problems as well.” (MD & Patty Obsorne Shafer RN, 2014)
Plan of Action (POA)
Plan of Action (POA) is necessary. I always say, you need create a plan so you can be provided help I suggest the following:
- Tell a trusted three at work, your manager, a solid co-worker and your HRB and set up an action plan at work;
- This will provide HIPPA protected knowledge of your situation,
- How to handle it,
- Who to contact (spouse, ambulance, no one, etc.)
- How to help you (first aide),
- What you may need in your own words for Resuscitation (the process of correcting physiological disorders in an acutely ill patient. It is an important part of intensive care medicine, trauma surgery and emergency medicine.)
- You need to let your neighbor know to set up an action plan at home outside your immediate family when you are alone;
- This will protect you when no one is there with you.
- You can create a text word like very simply “HELP” and they will no to come over and what steps they need to take. Because when warning signals are trigger we can lose capacity and wont be able to communicate after those signals pass.
- Let your children’s school nurse know just in case something occurs and they will be able to follow on any plans you have in place;
- Maybe you dont pick up your child, they can contact 911 to do a wellness visit on your behalf, or
- An emergency contact like spouse to let them no that you didn’t show up or there was an incident at the school, and,
- Next steps for them to do in your own words because it is your plan.
- Where and ID bracelet of who to call; and,
- Finally be vigilant and advocate for others; in return you are advocating for yourself.
First – Aide
The Epilepsy Foundation developed a first aid for seizures that I thought was great and can help so many, I have some examples listed below.
- Stay – with the person until they are awake and alert after the seizure; (Epilepsy Foundation, n.d.)
- Safe – Keep the person safe; (Epilepsy Foundation, n.d.)
- Side – Turn the person onto their side if they are not awake and aware; (Epilepsy Foundation, n.d.); and,
- Call 911 – if.
- The seizure is longer than 5 minutes,
- Person does not return to their usual state,
- Person is injured, pregnant, or sick,
- Repeated seizures,
- First time Seizure,
- Difficulty breathing,
- Seizure occurs in water.
- Do Not – do the following:
- Put any objects in their mouth.
Would also add if they have a Plan of Action (POA) follow-it 😊
For those who help me know to lay me on my left side, for breathing, support my head if necessary, don’t put anything in my mouth, and I always ask to call my husband in lieu of ambulance as this is not something that ER can “fix” having an action plan will be more helpful. Although, if and something happened that requires an ambulance contact your 911 and follow up with your doctor.
I found so much love and help at Epilepsy Foundation, there mission is simple The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.
I also suggest, having someone in your office/job who is certified if you have staff that do suffer from seizures. We usually have the fire marshal, or first aide person adding this will provide a protection to your key people who you work with and show them appreciation. You can register for classes on the Epilepsy Foundation page, “You can now be certified in Seizure First Aid!” here you can find your local office who can guide you on the next steps, of becoming certified.
U.S. Toll-Free Helpline: 1-800-332-1000
en Español 1-866-748-8008
You can also ask a question online for the Epilepsy Foundation here.
Sometimes I am told I cannot do something because I have seizures BUT I have never let anything stop me in my life. I constantly speak, work, and try to help others who are also suffering with conditions like mine. Still looking to finalize my diagnose and get treatment. This is ongoing! Also, I finally got my driver’s license at 37 and I am living my best Fannytasticlife!
Epilepsy Foundation. (n.d.). Fist Aide. Retrieved from Epilepsy Foundation: https://www.epilepsy.com/sites/core/files/atoms/files/SFA%20Flier_HQ_8.5x11_PDF.pdf
Iyengar, S. (2016, October 11). Basics about Catamenial Epilepsy. Retrieved from Epilepsy.com
MD, J. I., & Patty Obsorne Shafer RN, M. (2014, January 21). What is Epilepsy? Retrieved from Epilepsy Foundation: https://www.epilepsy.com/learn/about-epilepsy-basics/what-epilepsy
Steven C. Schachter, M. (2013, 10). Menstruation. Retrieved from Epilepsy Foundation: Menstruation