Epilepsy Foundation

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Support for CPs

For all people who have CPs (complex-partiials)

Members: 72
Latest Activity: Apr 20

Discussion Forum

Multiple Types of Seizures

Started by FFT. Last reply by Don Miller Sep 18, 2013. 6 Replies

I haven't been on lately, and this may have already been addressed, and if so I apologize. It's been confirmed with five EEG's I have petit mal, simple partial, complex partial, photosensitive, and…Continue

WHAT ARE YOUR TRIGGERS?

Started by Cassidy Waggoner. Last reply by Jessica Robinson Jul 9, 2013. 7 Replies

Do you know? Aside from lack of sleep, stress or illness. Im not photosensitive but do get thrown into a seizure while watching T.V. Mostly the fake smiles and faces that bad actors have lol. So i…Continue

EMU

Started by Nancy Young. Last reply by Don Miller May 26, 2013. 1 Reply

HI all,Back in 04 I was put in an EMU for the first time in my life.  I was scared half to death.They did not treat me very well.  I had 2  szs in there that they wrote down as questiaonable. One of…Continue

IF YOU HAD EVERYTHING CONTROLLED, WHERE WOULD YOU LIVE?

Started by Don Miller. Last reply by Nancy Young Apr 8, 2013. 24 Replies

I'm drawn to the beauty and raw savagery of Lake Superior and want to live on it's shoreline. Colder, yes, roads down for weeks at a time, yes, but once you've kayaked on the surface of the Icy Lady…Continue

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Comment by Don Miller on April 7, 2015 at 9:50pm

Novel will be available in regular and large print in May. Memoir: Detour: A 40-Year Epilepsy Memoir will be available in large and regular print in May. Novel title is Death is Not the End. Forgot to say she's tapering me off of Keppra

Comment by Don Miller on April 7, 2015 at 9:45pm

Hey there everyone, neuro appointment was today, Doc P was not happy with the number of seizures I'd recorded and the fact that I went to the ER beginning of Feb. She's putting me on a fairly new one called Fycompa and put me on a list for an RNS. She wants my seizures under control. It's cool the way an RNS works but I can't explain it here. www.neuropace.com Told her of my weight loss plans and she said okay, so I guess I'm on for losing it. Weighed 238 # so it will be a 58 # loss to be 180 # in October or November. Next neurologist appointment will be July 28, being that I am going on a new med

Comment by Don Miller on March 29, 2015 at 11:12am

neurologist appointment in October or November, 2015, and you can hold me to it

Comment by Don Miller on March 29, 2015 at 11:11am

Epilepsy is a 4-Letter Word will also be the title of my talks to groups about E, audio Course (collection of podasts about, it will be a lot of education about E and will require multiple CDs), there is my YT channel, written course, I plan on being down to 180 # by my neurologist appointment: so I can do a fitness course for people 50 and above and those below 50 (video, audio, physical)

Comment by Don Miller on March 29, 2015 at 11:04am

I plan on trying for an agent and big publisher with my next epilepsy book, titled (working) Epilepsy is a 4-Letter Word, big publishers want you to have a platform, a large following, so Don thought how can I do that, on my family and friends FB page I have 100 friends, they can spread the word, that's a start; on my FB author page I have over 80 author friends, authors like networking so there is an opportunity for a lot of followers there (advertising it), another good start; I have 1100 Twitter followers, another good start; I was thinking, what else could Don do? I'm going to start doing a podcast titled: Epilepsy is a 4-Letter Word, interviews with epilepsy professionals: neurologists, epileptologists, neurosurgeons, neuro-psychiatrists, nurses; law enforcement, EMTs, pharmacists about side effects and medicinal marijuana (already set that one up), survivors of neurosurgery, VNS people (I'm one of them), observations on living with E for 40, Neal Howard of Health Professional Radio. One neurologist I had was Ilo Leppik, MD, former and possibly current president of the Epilepsy Federation of Minnesota, lawyers from the EF about disability based job harassment, every chapter in my memoir (currently I'm doing a revision of it) can be a separate podcast, that way I can advertise the memoir without blatantly mentioning its name, "Oh, by the way that information and more can be found in Detour: A 40-Year Epilepsy Memoir. There is a potential for a lot of followers or subscribers that way. It would be cool to say I have 57,000 followers of my podcast, same title as the book to the agent. It is a collection of true epilepsy tales and poetry by an E-person, or E-people if I can get people on this site to sign a release form and donate 1 poem. And I know the odds of landing an agent and major publishing house are astronomically against it but I'm going to try anyway, any of you write poetry you might like donating with no monetary reward for you. Virtual book tours, I am setting up an author website on Apr. 1 in the morning, going to check into how much it costs to buy a FB ad. I'm sure I'll be able to advertise at the library, BP station, grocery store, church, bank, will see how much an ad in the Burnett County Sentinel and Tri-County Leader, interviews on local radio shows, Internet Radio Shows, have book in the EF bookstore, Epilepsy Foundation has changed its website to: new epilepsy foundation site

Comment by Don Miller on March 29, 2015 at 10:30am

I see we lost a couple members; my novel will be complete today, then do a cover on Photoshop, release on Amazon 4-05-15 (Easter), title is Death is Not the End: Unholy Resurrections 1, I'm doing the final read through and correction now, cover will be posted here when I've completed it

Comment by Don Miller on December 16, 2014 at 7:10pm

Banzel: 3200 mg. / day

Lamictal: 500 mg. / day

Keppra: 3000 mg. / day

The last two are generic and according to the numbers game, Banzel will go generic (yay) in 2015. Still on a whopping dose of meds but seizures are still uncontrolled. Anybody out there listen to the Dresser interview? Here's the link again: http://michaeldressershow.com/wp-content/uploads/2014/12/Don-Miller...

Comment by Don Miller on December 16, 2014 at 7:01pm
Comment by Don Miller on December 16, 2014 at 7:00pm

Epilepsy Memoir: My 40-Year Detour FB page

www.facebook.com/epilepsymemoir

Comment by Don Miller on December 4, 2014 at 11:12am

I will also be doing an E interview on Health Professionals Radio sometime soon, will be putting together a video for the Michael Dresser interview (16:39 minutes) and putting it on my Youtube channel, that will be three free interviews I've gotten off an ad in the RTIR (Radio Television Interview Report) by Bradley Communications, Corporation, hopefully there will be more yet, everyone have a Merry holiday season, shower, shave next

 

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