Epilepsy Community

Hello,

Welcome to my home, Epland. Thank You for sharing your experience with your niece. It is always Hard to watch a person have a seizure. But, with time you get used to it as you know what to expect. You did Good. You Were there for her & Supported her when she needed you Most. So, my question is: Do you know Proper Seizure First Aid? Our Epilepsy Health Center can give you more Info.

A Warm water/salt mix will take care of her tongue. Did she say How Long she has been on her meds? It usually takes 4-6 weeks for our systems to adapt to the med & build up enough in our systems to control seizures. I belong to several Groups on FB & I was told Riley was a Very Good Hospital for Epilepsy Treatment.

B4 addressing your question, I have several comments you need to hear. Everything you mentioned is a Myth that we with Epilepsy are Trying so Hard to Educate the Public about. Unable to attend school: That is Hogwash & Discriminatory! Lots of kids go to school Daily with Seizure Disorders! They Graduate & go on to College or Careers! ( I have a link posted in Resources that would be useful to her & her parents: Teachers Epilepsy Fact sheet) Unable to Drive: Once seizures are under control for an allotted period of time (determined by your State DMV) we Can Drive! ADA Laws say We Can Work! As long as we are not in a position that can/will cause harm to us or others'. No Kids??? Another Myth! I conceived my child the same yr I found a med to control my seizures. I was seizure free B4 he was Born. Ok, I'm off my Soapbox for now.

Your Question: Yes, there are 'alternatives' that can be used to control Seizures. But, like meds: What works for one, may not work for another! And finding DRS who will agree to use 'alternatives' is a Long Journey, also. So what alternatives do we have? Diet is # 1& is Finally being recognized by Some Drs as a Solution. There are several diets she can try. Are you willing to learn more? Visit epilepsytalk.com (no need to join t read articles) Use the Search Tool: Diets. Others have tried Surgery (since she was in Rileys under observation her DR should already Know if this is an alternative), Chiropractic Specialists, Neurofeedback, Music, Yoga, meditation & the list goes On. If you wish to Learn More about these: coping-with-epilepsy site posted in Resources has the Best Info.

Exhaustion/Sleeping for long periods of time after a seizure is Normal. Did she discuss what she knows about her situation w/ you? Are you aware that Hormones (Catamenial Seizures posted in Resources) or food allergies can Trigger seizures? How about Photosensitivity? You said she was on a Bus & in a car when her episodes occurred. Possible flickering of sunshine thru windows could trigger seizures. These are all Possible Causes of Epilepsy &/or could be possible Triggers (not the same as Cause)

For your Nieces sake, I do Hope you will continue to Educate Yourself & others' about Epilepsy. Encourage her to do the same. She is Still a Very Normal person & should be treated as such.

If she hasn't started a Daily Journal, please read info under tips & Inform her & her parents about this Useful Tool for her & her DRS! If you have More questions or concerns, please let me know. HUGS!

Love Candi

Love Candi

I just had a T/C at 4 am HI time. It lasted about 4 minutes.

In 05 I had won 2 tickets to go and see Toby Keith in concert, live.

Bad things occured. I had 6 szs abd the medics had to be called that were on sight and they hauled me to the hospital and stopped or at least tried to stop the szs with IV Ativan.

I had 2 at the concert 2 in the rig, and 2 more in the hospital.

The stupidest thing they did (the idiots) thta ran the park put signs up on the INSIDE rather than the outside about having epilepsy or have had in the past had a sz and a bunch more stuff. Made my livid .

If we had known that on the out side we would have given teh tickets to somone else and left .

I have a VNS and that helps control the szs.. However It is implanted under the skin in your upper left chest where a pacemaker wold go. More on that later of you can e mail me at apache_spirit11@hotmail.com

I would love to tlka to you aoubt it.

THere are ways to help control them.


Candi is right aoubt the journaling. I have had to do it for 6.5 years for the neuro I have now. I have had to have 2 EEGs 2 months ago and they both came out clean. I have had to have ALOT of EEGs most of every kind and all came back abnormal. I have had 2 ambulatory EEGs where you take it home on you so they can see what goes on in detail, the office one that you have in teh office and in the EMU or Epilepsy Monitoring Unit. BEen there 2 times. The first visit to the EMU was a complete disaster. They said the 2 szs that i had in therewere inconclusive. Made this neuro mad so he r an his own EMU.

Got an eye full too. 2 staring szs, and 3 MAJOR Complex Partial szs that all were stopped with IV Ativan.

He put me on 600 mgs of Vimpat, 600 mgs of Lamictal and 3 mgs of Klonopin. THe 2 higher ones the adult dosage is 400 mgs in one day, and he upped to 600 mgs along wtih the ther one. seems to work for me.

best of luck to boh of you.

hula_dancer