Epilepsy Community

Hello shell,

Fact: Over 65% of people with Epilepsy are diagnosed as 'Cause Unknown'.

What to Do? Learn Proper Seizure First Aid. If seizures only last 2-3 minutes the person will be OK & there is no need for EMT's. Unless they have injured themselves. Teach Others' who have Daily Contact! What to do & what to watch for! Next, Start a Daily Journal! ( Info as to what to include is posted in Tips on the rite of the screen) This can help figure out what Triggers the seizures. Triggers should/can be avoided.

Stay on the DR/med/treatment merrygoround until Something is Found to Control the Seizures. Meds are Not the only recourse. We Do have 'alternatives. Diets, neurofeedback, Chiropractic, etc. The list goes on.

Self-educate yourself &/or That Person! The more you know the better. Please use our Weblinks for Epilepsy under Popular Discussions & our Resources.

If you have More Questions/concerns, please, let me know. I'll be Listening. HUGS!

Love Candi November is Epilepsy Awareness Month. Show Your Support! Wear Purple &/or place a black lite in your window or on your Porch.

How can someone go about finding a neurologist that specializes in this kind of seizure disorder - cause unknown. The doctors we have had so far tend to not get back to us even when there's been a seizure. We need help and don't know where to turn.

mickie,

2 Sites have recommendations from other people with Epilepsy. epilepsy.com & epilepsytalk.com. Search for an Epileptologist near you. An Epi DR Specializes in Seizures. They do 2 Extra yrs of Schooling about Seizure related disorders. Nueros tend to specialize in several different areas. Epilepsy is not always the disorder they keep tabs or updated on.

Hope this helped. Love Candi

candi,

my neuro is a generalneuro and he has a sub specialty in epilepsy. He takes care of me. my meds, the VNS etc.

nancy

That is Good Nancy! I have had over 30 General Neuros. They All took care of me & helped me to Find a med to control my Seizures. Yet, None of them have assisted me in Learning More about My Epilepsy or the Cause of My Epilepsy. They did not even explain about other Types of Seizure Disorders &/or Treatments! I did my Own Homework after joining WebMD & I Put 2 3 together. PTSD & Head Trauma & Genetics combined are My Conclusion! I figured this out after learning about All Aspects of Epilepsy. Everything from Causes to the treatment (Meds) I was on & other treatments Available. My Last Neuro, who ran the 24 hr Portable EEG, did not even tell me that my Test determined I had Another Seizure Disorder. Thanks to Another Support Group, I Learned the Facts! You may have a Good Neuro who Explains it to you. But, he doesn't know or tell you All! No General Neuro DOES! Even EP Specialists are left 'Scratching their heads' Wondering: Why & What to say or do Next????

Think about this! Your seizures are Still Not Under Control! Your Neuro takes Care of You, but, has not, Yet, found Answers on what will Work to Stop All Seizure Activity for You! He can only keep trying. And he Has to stay on Top of Latest Treatments available in the Hopes he Can Find a Treatment that Will Help rid you of All Activity. There is No Cure, Yet! But, there is, Hopefully, Full Control for those (DRS, Researchers & You) who take/make Time to Educate themselves about the New & Old 'Possibilities' Available.

I'm Not putting your Neuro Down! I Understand/Know there Are Good Neuros Available. Seek & you will Find. For Some, like me, it is a Never-Ending Search! A Neuro who Takes care of Us & Seeks New Answers!

Love Candi