Epilepsy Foundation


Support for CPs

For all people who have CPs (complex-partiials)

Members: 72
Latest Activity: Apr 5

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


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


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


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 5, 2016 at 3:13pm

Sales in 2015 were pretty pathetic online, less than $10 on the p-book and only $17.60 on the e-book. By myself I cleared less than $200 with Kindle sales included. Hopefully, adding the A-book will boost my income higher than they were in 2014. Detour is available on Amazon, e-book: Amazon; B & N; Sony; Kobo; iBooks. Members: Penny Niebauer, Lizzie Markel, and former member: Sue Sullivan were beta-readers for the epilepsy memoir when it was called: The Lightning Storm Within: Reflections in the Rear-View Mirror, many thanks to you E-ladies for sparing some of your precious time.

Comment by Don Miller on April 5, 2016 at 3:00pm

Doc P is talking about the RNS again and I'm on the list for it. I'm having Detour: A 40-Year Epilepsy Memoir turned into an audio-book by ACX. Joined MyEpilepsyTeam (dot) com to get the word out, the following was my first post

I had my neurologist appointment yesterday, I weighed 228#, down 10 from when I was weighed 12/17/15 (238). That's a 10 # drop in 3 months, so, yes, today is a good day; I'm on the list for a Neuropace RNS (responsive neural stimulator), Doc Penovich is researching my case file (that has to be 4 feet thick after 42 years, with reports up the wazoo) and will speak to the surgical team. Doc Penovich is part of MEG (Minnesota Epilepsy Group), a Category 4 Neurology Specialty Center. MEG has been around since 1990 and I've been a patient of Doc Penovich's since 1992: 24 years. She's seen me through breaks and bruises, life threatening conditions, and emotional duress. I've had epilepsy since August of 1974. I wrote an epilepsy memoir: Detour: A 40-Year Epilepsy Memoir and self-published it on Amazon in 2014. This is not meant to be an ad for that book. Currently ACX (Audiobook Creation Exchange) is producing it into an audio-book to be available on Amazon; Audible; and iTunes. I did not write the book to make money, what I wrote it for was to get the word out about epilepsy, to advocate, and educate. I ran the audio-book venture by Doc P and she said, that's something we need on our website, pretty flipping cool. MEG sees about 85,000 patients each year, that's not to say that everyone has a computer, but you can also listen to Audible on cell phones and those tablets. I'm a professional writer since 2002 and have lived independently since 1998 (18 years) as I hope you do, or are allowed to do. Post any questions, as a former physical support group leader, and current high tech online support group leader I don't think any question about E is dumb and I can answer most in a way a child could understand.

Comment by Don Miller on November 30, 2015 at 7:37pm

Recounted and it is 20 mg of Fycompa each day

Comment by Don Miller on November 28, 2015 at 11:23pm

Doc P was talking RNS for me but I think the electrical activity was widespread, not a generalized seizure, but 2 places is the limit for that device. The reason I want to know is that I'm at work--after I get Volume 2 in the Series published and it nearly is and one other--The Brotherhood: A Secret Small Town Society, been working on covers for it, but need more book completed called The Zen of Epilepsy Living. One chapter is The Zen of Mental Health & Hugging, more on that later

Comment by Don Miller on November 28, 2015 at 11:16pm

Been getting banged around in my seizures. Fycompa in conjunction with the others is working pretty well, not seizure controlled then again I've never been. I don't think there is a thing as seizure free, though some that are part of this group are. Anybody out there got an RNS (Responsive Neural Stimulator), quite the gadget? I'd be curious from a patient's point of view just how they work. Get back to me with a personal message. I try to return as soon as possible. Take care all

Comment by Don Miller on November 28, 2015 at 11:10pm

Banzel 4000 mg/day

Lamictal 600 mg/day

Fycompa 18 mg/day

Risperdal 1 mg/day

doxy 50 mg/day

Comment by Don Miller on September 7, 2015 at 3:04pm

am down to 1000 mg of Keppra/day

up to 3600 mg of Banzel/day

up to 600 mg of Lamictal/day

up to 16 mg of Fycompa at bedtime

1 mg of Risperdal, a psychiatric med

50 mg of doxycycline, an antibiotic

1 multivitamin

1 baby aspirin

talking to Social Security about my SSI on Wednesday, just a financial review. I sold $714 worth of books last year; I had estimated $900 so I'll be getting some money back next month. $186.00 The latest revision of DINTE will be live on Amazon next week.

Comment by Brian Cassady on August 8, 2015 at 8:38pm

My name is Brian and I'm 23 years old,  I have complex partial epilepsy.  I would like to talk to people around my age who have epilepsy

Comment by Don Miller on June 23, 2015 at 10:55pm


by Don S Miller

Accolades only so far from a woman who says it is a definite page-turner and compelling read. 'I'm digesting it in bite-sized chunks so I don't miss anything, the multiple plot lines were confusing at first but it definitely keeps you interested.' M.L.J.

Lucas Jordan was your atypical, average, 18-year-old virgin, and was one of the straight members of the Gay Straight Alliance at Atherton-Edgerton-Combined-High-School, and unwilling President of the group.

In the Hiram Hickerson Hillside Cemetery in which two columns of natural electric flame originating in the Aurora Borealis struck his upraised clenched fists; his body tumbled ass over eyeballs and slammed into the frozen earth over Hiram Hickerson's grave; he convulsed for hours, a life threatening condition known as status epilepticus. During the millisecond-long lightning strike Lucas suffered brain damage and acquired epilepsy.

He pulled himself up using the Hiram Hickerson family monument to aid his balance, staggered forward toward the Jordan Family Crypt, dropped to one knee and thought that a cemetery is a good place to die; his heart stopped, he died, and his body began falling forward.

Black vapors had pooled at the base of the crypt, then a black woman shape had formed - antimatter woman; she slammed into Lucas three inches below his belly button in the tanzen - doorway to the hara - repository for chi, warehouse for man's ka or soul.

His eyelids snapped open, his light topaz eyes had changed to dark green, dark as the Atlantic Ocean before it plummets to crushing depths and inky blackness no light could penetrate. He'd died that night and resurrected, but death never had much hold over him and never lasted long after he experienced an unholy physical resurrection many times but there was payment to be made each time, not 30 pieces of silver that led to another resurrection, but he paid with the corruption of his flesh—micro-cellular mutation, cancer. Lucas Jordan, was cursed with sixth sensory abilities beyond the spectrum of the five accepted senses.

The symbolic representation of chi or liquid energy is the yin-yang, composed of two antagonistic elements: yin-negative-feminine-cold is antimatter; yang-positive-masculine-hot is matter. Chi's elements: yin and yang live in harmonious accord with each other, they were antagonistic but could not exist without each other. Antimatter produces high energy Gamma radiation; radiation causes cancer. Antimatter destroys or kills matter, what would happen if antimatter had come in contact with a dead body? Curious? Read Death is Not the End.

Comment by Don Miller on June 2, 2015 at 5:36pm

I finished my novel and uploaded it third week in May. I also uploaded a revised memoir, both in large-print, regular print, and Kindle format, on Amazon, I hope I'm excused an ad for the novel


Want a compelling page-turner, a book you won't want to put down. In the style reminiscent of a young Stephen E. King, Don Miller concocts a modern day Doctor Jekyll and Mister Hyde, psychic saga, encompassing two generations from 1960 to 2029 that keeps giving entertainment value. Robert Louis Stevenson's notorious masterwork best describes the peculiar relationship between Lucas Jordan, who becomes author Lucas Chandler and the malevolent entity of his dead Uncle Lucas Chandler-Jordan, born a bastard inbred child of a Gypsy Princess: Marie Starr and her twin brother, Gypsy Prince: Orlando Starr, damned by his Grandfather, Ernesto Starr, Gypsy King, with psychic power. Over time his negative overtakes his positive karma and he becomes a mutant monster composed of antimatter and resident within Lucas Jordan's hara or psychic battery. There is an 80% survival rate from lightning strike, Lucas is struck by lightning originating in the Aurora Borealis and is one of the 20% that die, after contact with his antimatter Uncle he experiences hellish resurrection.

From that night on Death never had much hold on him, he acquired psychic power at the cost of hellish pain. Each time he pas the price,, not 30 shekels of silver that led to a holy resurrection but hellish pain, lifelong epilepsy, and micro-cellular mutation--cancer. Death is Not the End is tightly written with interwoven multiple plot-lines with a bittersweet ending that makes you want to cheer and cry.


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