Category: Uncategorized

Had to reset my password again

Q: Are E people sexual beings?

A: Very much so, just because their brains operate a little differently than everyone else doesn’t mean they don’t have sexual wants and desires.

Q: There were never places like leper colonies for E people.

A: Unfortunately, there were epilepsy colonies that followed the old maxim out of sight, out of mind. People, give us a break, we don’t have epileprosy.

Q: Will smoking marijuana control my seizures?

A: In the words of the world-renowned Patricia E. Penovich, MD, “Smoking it won’t do it, so don’t start. If it did I’d have 5 seizure free patients. It only works in 1 out of 10 (10%) using the cannabis oil and mostly in children.”

Q: Are epilepsy people less intelligent than others?

Here I will tell you of a discussion I had with a woman from Social Services, who I will call, Mary S. The factory I worked at was, in majority, composed of mentally challenged (or the unpopular term, retarded) individuals, and there were also autistic workers there. The director, James Weiss, decided that all the disabled workers needed to have a Social Worker, myself included. The conversation follows:
“You went to Special Ed, had not you?” said Mary S.
“No, I was mainstream educated, I have a high school degree, and not a GED either. I also have a one-year-Associate degree.”
“No you don’t, you’re making things up. You went to Special Ed,” she was so darn sure of herself, it had become extremely irritating.
“You had not been able to have because people who have Epilepsy are stupider than “normal” people,” said Mary S.
My thought was that “normal” people could and were more stupid than people with Epilepsy. There was a saying “ignorance is bliss.” This does not apply to people who are blatantly ignorant like Mary S. Was it so, I’ve met many happy people on my 40-year journey on Epilepsy’s Electric Highway.
I kept my cool, and had not beat the stuffing out of her there and then, much as I’d have liked to. She had not realize it but she’d stepped on a live wire, me. I had write a very detailed letter to her supervisor at Social Services detailing the discrepancies (and there was more) telling them to stay the heck out of my life (although my language was a bit more colorful), and never, ever, to contact me again, or I would contact my lawyer. Government agency interference avoidance is the way I’ve maintained my independence for the past 16 years, the number I’ve lived alone in my own apartment.

Q: Epilepsy should be removed from the Americans with Disabilities Act shouldn’t it?

A: Epilepsy is a disability that effects people the same as being blind or paralyzed and deserves to be listed with the other disabilities in the ADA.

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Credibility…

was co-leader of an offline epilepsy support group for 8 years, was co-educator of in services for 3rd and 4th grade classes so we’d educate about E before stigmatized misperceptions occurred, was contact person for the Western Wisconsin Epilepsy Center for 2 years, founded and managed an online epilepsy support group of 75 people for four years, wrote and self-published Detour: A 40-year epilepsy memoir. To add authenticity I had three E-ladies: Sue, Penny, and Lizzie as beta or first readers. I’ve written realistic epilepsy fiction in two novels, have been through numerous hellish diagnostic tests, been on over 20 anti-epilepsy-drugs during my life, have never had a driver’s license, have come up with an easy way of educating about epilepsy. In 2014 I gave 3 interviews as an epilepsy expert, 8 minutes with Bob Gourley of Issues Today Radio, 16 minutes with Michael Dresser of the Michael Dresser Show, and 3 10 minutes interviews with  Neal Howard of Health Professionals Radio. I had a service dog, a purebred yellow Labrador retriever for 10 years and 10 months. In 2016 I published multiple versions of my epilepsy memoir and Kindle sales brought Epilepsy: The Lightning Storm Within the Brain, my personal reflections in time’s rear-view mirror from 2 million in the sales ranking to #173 in the self-help category. So, Epilepsy: The Lightning Storm Within is a member of the 200 best-sellers club.

Just had to reset my password

for the second time

I’m at work on another version of the epilepsy memoir that is no more like a bio than a horse is to   a cat, plan on the book, the podcast, and the speech to have the same title

Epilepsy, Sex, lives and lovers are 4-letter words:

The Art of Epilepsy Car Zen

I plan on turning this blog into a website URL by the  same name and will try to  post every day and in exchange for your name and email address I’ll have to slap together Buddy Miller, the WVMA Superhero seizure service dog. At the same time you can subscribe to my The Art of Epilepsy Car Zen newsletter

I was getting some hellish double-vision

and balance difficulties so Doc P put me on a titration–taper–schedule to get off of Banzel, that I’d been on since June of 2013 after getting off of Dilantin that I’d been on for 39 years. Hope you’re taking mental Post-its, some drugs will work very well for me, for a period of time that is, then I become more or less immune to them, this is known as drug-resistant, they have to increase the dosage to the point that side effects become intolerable. Doc P was tapering me off of Banzel. Last appointment I had to fill out the psych sheet and the physical sheet. One of the questions on the psych sheet is on a scale of 1 to 5, 1 being none, and 5 meaning pleasure all the time would you rate your pleasure. Sounds like a masturbation query to me. I always rate my pleasure as a 5 because I usually feel fantastic, some days a six, some a ten, some days I’ve got mental retro-rockets on and I’ve shot over 100. If you rate yourself lower than a 5 or god help you if you rate your pleasure scale as a 1 they are going to think you’re really having psych side effect problems and want you to see a shrink or a therapist (didn’t mean a sex therapist either). There are other questions on the psych sheet because anti-epilepsy drugs are processed through the brain that is home to the psyche, listed on the side effect sheets for anti-epilepsy drugs is potential for a rare 1 in 500 (0.2%) suicidal thoughts or actions, some strange ones like compulsive actions (wonder if that includes chronic masturbation), mania, depression, mood swings, and many other things. On the physical side, side effects of Dilantin are lowered free testosterone and with that presumably ED (erectile dysfunction). I’ve never had any problems getting erect and staying erect. Maybe that pleasure scale rating thing is are you having sexual problems, not getting up, not having orgasms, diminished sensitivity in penis head or clitoris, and do you need to talk sexual stuff with your doctor, or of course a shrink or a therapist. I’ve lived on my own, alone for 19 years now and have no problems getting an erection. My last girlfriend was back in 1992, so, it’s been 25 years of sexual solitude. I’ll do the math for you, 1 girl meets 1 boy, they fall in love or infatuation 1 + 1 = 2, the relationship became rocky and they split apart and that 2 is back to 1, the girl goes her own way, the boy goes his own way, maybe she finds another relationship, maybe she doesn’t and he or me doesn’t find another relationship. That girl and I had our problems as any man woman relationship will from time to time, I think I loved her, hell, still do love her but maybe she likes 25 years of sexual solitude. Don Miller, you’ll forget to put any clothing on someday and walk outside naked, she put me on Briviact new AED because on the physical sheet under goals for this appointment I put get rid of double vision and new drug ? Double vision was really knocking me on my ass. Doc P said the latest drug to come out is Briviact (brivaracetam) that is a relative of Keppra (levatiracetam) (levitaracetam) and plans were made, yet another titration schedule to get me off of Banzel entirely and on Briviact. End of story, I now am off of Banzel and on Briviact, the story doesn’t end there as I was sleeping 4 hours during daytime hours and hardly getting any writing done at all, and that does not aid in your productivity in trying to make a living as a professional writer.  Another drug I’m on called Lamictal (lamotrigine) was lowered 100 mg on the breakfast dose so hopefully that will help. Of course I probably wouldn’t be so damn tired if I didn’t stay up until 1 am on Facebook writing post after post. Tomorrow I’ll have another credit for an Audible book, maybe something by Stephen King or his son Joe Hillstrom King whose pen name is Joe Hill.

Excessive masturbation does not cause epilepsy: The NASCAR-Zen of Epilepsy Life’s Strange Detour

That’s the title of the latest epilepsy memoir I’m currently working on and plan on having out on the Big A by July 4, this one really hangs my dirty laundry: physical and psychiatric out for public view. There are events, some complimentary and some very not complimentary in Zen Buddhist Koan lists and a separate Koan for each event. Masturbation is mentioned quite extensively as follows

In Victorian times it was thought that excessive masturbation caused epilepsy, this by some uptight religious with strait-laced mores and enlightened sensibilities. No shit, that is what they thought, and a bizarre thought it is, excessive masturbation  causing epilepsy. I have a question for those ignorant learned ones, just how much is excessive and how did you decide that an E-person got epilepsy from excessive masturbation. My epilepsy has a medically documented physical cause, I did not get it by masturbating to excess.

I really have to decide if certain activities should be mentioned or not. There is a term full disclosure but there is also such a thing as revealing too much. I suppose if I am in a way baring my soul and practicing honesty I shall include them.

A koan: is a story, dialogue, question, or statement, which is used in Zen practice to provoke the “great doubt” and test a student’s progress in Zen practice.

Neurologist appointment with Doc P tomorrow…

that is 1-31-17 at MEG (Minnesota Epilepsy Group) at 1 pm. Been getting bounced around in seizures pretty bad, mystery bruise back of right calf muscle, left elbow bitch pain. Almost the end of the month, not living hand to mouth and still have enough left over to save for a new HP all-in-one PC, damn near 1 grand but this one I’m only going on the Internet for my writing, no http://www.youtube.com, no exercise videos, biceps curls, forearms exercises, solely for writing research, if I want a Sherlock Holmes video w/ Basil Rathbone and Nigel Bruce or X-factor video I can do it on my work-horse PC (mini-tower for business HP DC7900). Also, book cover creation and book formatting. Sales of my novels in 2016 were exemplary and topped 2015 by far. My writing seems to be a real draw and in the double header Kindle giveaway 11-30 through 12-04 I sold 27 books.

Am going to only salads and veggies (quite the trick for a lifelong carnivore) well, turkey and ham lunch meat is okay to put in salads. No more trips down to the Country Cafe, local restaurant, except maybe once a month for a salad. I still have some TV dinners I have to dispose of in me. I weight maybe 240, but on 10-12-17 I will weigh 197.25 # I’m visualizing my future.

WARNING:

Do not install and uninstall a program called Wipe or maybe it’s Wiper…I had it on my computer and sure, it was getting rid of a lot of stuff, but when I uninstalled it it wiped out my settings, passwords. Thanks a fricking lot, I’ll tell you that, I was able to reset most but GMAIL: the usually most friendly free email I have I clicked on the link to reset and never got the response email with the temporary password and we are talking weeks, maybe even months.

If you are in the Grantsburg, WI area on 2-25-17, stop by the public library (east side of town, across the road from the Riverside Cemetery) because I am having an author signing for my second novel: Psychic Gift with a Price: Power of the Icy Flames, Vol. 2 in the Unholy Resurrections series by Don S. Miller. First book was Death is not the End and it says by Don Miller Miller through a major typo by me. If you want to check out my books, and I say books because I have 6 versions of the epilepsy memoir, slightly different content, different title and all my books are available in Kindle; Large-print; and regular-print. The first version of the memoir I did was Detour: A 40-year Epilepsy Memoir and that is also available as an epub ebook on Sony; Kobo; Barnes & Noble; Apple; and others.

http://www.amazon.com/author/millerdon

24 Years & going strong

That’s a little joke. Dr. Patricia E Penovich, MD has been my neurologist for 24 years now, she’s a compassionate doctor who really gives a damn about her patients. She’s a member of the staff of MEG, Minnesota Epilepsy Group, who started working there, Big John Gates (unfortunately he’s dead now, died of brain-stem cancer) introduced me to her in 1992 and I was part of a drug study she was heading up and I believe it was topiramate, now marketed under the name Topamax (known among the E people–epilepsy people–as Dope-a-max for its ability to give you a case of the drug stupids), I unfortunately was allergic to it, I lost 25 pounds in 2 months, not a good drug for me. As an addition, Topamax, is now being used for weight loss purposes, everything lost its taste to me, a pizza–and I really love pizza–tasted like a cardboard disc, covered with sawdust catsup, and grated plastic for the mozzarella cheese, plastic poker chips as pepperoni. Nothing tasted good to me. Now, I could probably use that 25 pound loss. It works for some people, so no rocking the boat degreelessdrdon Miller. I’d just like to explain the name I created for myself, I have no medical degree, nor will I impart medical or psychiatric advice and will not be held legally liable for any of my statements, no medical degree, no college degree because I dropped out after 1 year, 1 year of too much boozing and partying. This was the early 80s and not the 60s love generation with free sexuality.

Canine Seizure Control (final)

End of the Leash

It 2012, Lori Peper-Rucks suggested that being that Buddy was such a good and faithful service dog for 9 years that I retire him. That is that he’d still live with me but would no longer be required to do the service dog duties.

Buddy Miller 01-01-2000 to 01-27-2014 was put to sleep today (01-27-2014), his kidneys had shut down, white count was high, wasn’t producing red blood cells, and the Vet said everything was backing up inside. He was 14 years—98 dog years young and ready to go.

Buddy also had an occasional “grand mal” seizure and had his own prescription for phenobarbital, but I hated to use it on him. His body would experience a minor shudder. I don’t know if it was a sympathetic seizure but he was awful protective of me.

Thinking about it uric acid (from urine) causes gout that includes pain in the joints; when his urine backed up in him I’m almost positive he was in pain as he had minor arthritis, it’s no wonder, the old-timer was 14-years-old.

The Owner’s Manual

MILEPOST 11—THE OWNER’S MANUAL

Here are some epilepsy statistics straight out of the E people’s toolbox, the Epilepsy Foundation site that currently is Epilepsy.com,

http://epilepsy.com

EPILEPSY STATISTICS:

  • Anyone at any age can have a seizure if the brain is sufficiently stressed by injury or disease.
  • World Population—approximately 7.2 billion, USA Population—320 million (as of 11-09-2014)
  • E people are between 1% and 3% of the World population.
  • Males are twice as likely to develop Epilepsy, thus the figure—(Figures are approximated to nearest 100 thousand) For the 1% rate—In the world—total E people—72 million, that comes out to 48 million males, 24 million females. In the United States—2.1 million males, 1.1 million females. For the 2% rate—In the World—total E people—144 million, 96 million males as opposed to 48 million females, in the USA approximately—4.5 million males and 2.1 million females. For the 3% rate—In the World—total E people—216 million, 144 million males and 72 million women. In the USA—6.4 million males and approximately 3.2 million females.
  • The Epilepsy Foundation puts the number of new cases at 200,000 every year
  • 10% of the American population will have a seizure in their lifetime, this is not considered Epilepsy, if it recurs, then the person is diagnosed with Epilepsy
  • 3% will develop Epilepsy by age 75
  • Just to give you some idea of how off base some people can be about E, in this case someone religious; two or three years ago a young woman posted on the Epilepsy Foundation site (check—About the Author at the back of the book for my page’s URL, and if you have E or are a caregiver join us, it is like Face-Book for people with Epilepsy). “I could not believe my ears and what happened, about two weeks ago I was attending a tent revival meeting; it was incredibly hot, so much so we were getting ready to leave and head for a movie theater to enjoy the AC there. I had a grand mal/GTC seizure in front of everybody, I think we’ve all been there at one time or another. I soiled my white dress, major league embarrassment, but what really got to me was when I came out of it, the learned preacher said I had a lunatic demon loose inside and that I must fast and pray to heal me of the “demonic affliction.” If you ask me, the preacher was the lunatic and E is nothing to be embarrassed about.” I’m holding back this person’s name because she was really hurt by the misunderstanding that happened.
  • 300,000 people have a first convulsion each year
  • 120,000 of them are under the age of 18
  • Between 75,000 and 100,000 of them are under the age of 5
  • 350,000 African-Americans have Epilepsy, and nearly 24,000 new cases are diagnosed each year—Incidence is greater in African-American and socially disadvantaged populations.
  • I’m going to include seniors as a socially disadvantaged group, 300,000 American Senior Citizens have been diagnosed with Epilepsy, the most rapidly growing population group with Epilepsy.

Causes (After effects of):

  • Stroke
  • Tumor
  • Or Cardio-vascular events

TREATMENT IS MORE DIFFICULT, PROBLEMS DUE TO:

  • Age related issues
  • Use of other medications
  • Increased risk of falls, broken bones
  • Loss of independence
  • Incidence is highest under the age of 2 and over 65
  • 45,000 children under the age of 15 develop Epilepsy each year. Mine started at age 11, not quite sure what that figure was in 1974
  • Trend shows decreased incidence in children; increased incidence in the elderly
  • In 70% of new cases, no cause is apparent
  • 50% of people with new cases of Epilepsy will have generalized onset seizures
  • Generalized seizures are more common in children under the age of 10; afterward, more than half of all new cases of Epilepsy will have partial seizures

PREVALENCE

  • Prevalence of active Epilepsy (history of the disorder plus a seizure or use of anti-epileptic medicine within the past 5 years) is estimated at almost 3,100,000 in the United States. Note discrepancy above
  • Prevalence tends to increase with age
  • 326,000 school children through age 15 have Epilepsy.
  • More than 300,000 persons over the age of 65 have Epilepsy.
  • Higher among racial minorities than among Caucasians.

CUMULATIVE INCIDENCE (RISK OF DEVELOPING EPILEPSY):

  • By 20 years of age, one percent of the population can be expected to have developed Epilepsy.
  • By 75 years of age, 3% of the population can be expected to have been diagnosed with Epilepsy, and 10% will have experienced some type of seizure (not necessarily considered Epilepsy)

EPILEPSY RISK IN SPECIAL RISK POPULATIONS:

(Here I have to state that Epilepsy is a physiological disease, not a psychological, or supernatural aberration (as many, after years of education to the contrary, still consider it).

  • 25.8% of children with mental retardation
  • 13% of children with cerebral palsy
  • 50% of children with both disabilities
  • 10% of Alzheimer patients
  • 22% of stroke patients
  • 8.7% of children of mothers with Epilepsy
  • 2.4% of children of fathers with Epilepsy
  • Men are twice as likely to have E than women, 2:1, but rounded out to the nearest half percentage, women are 3.5 times more likely to parent a child that has E. Pregnancy is something to seriously be considered what with potential birth defects that might be caused by AEDs. I have decided never to father a child, unless my brother gets married, the Miller name ends with me. Two weeks ago I told my parents of my decision; my father was supportive, my mother, a bit hesitant as I’m sure she wanted the Miller name to continue through me, and she wanted more grandchildren, at the age of 79.
  • 33% of people who have had a single, unprovoked seizure

REMISSION

  • 70% of people with Epilepsy can be expected to enter remission, defined as 5 or more years seizure free on medication. If that happened, it would really be a wild trip. I’d rev my engine and blow my horn if that ever happened.
  • 35% of people with mental retardation, cerebral palsy, or other neurological condition will enter remission.
  • 75% of people who are seizure free on medication for 2 to 5 years can be successfully withdrawn from medication (under a Doctor’s strict supervision).
  • 10% of new patients fail to gain control of seizures despite optimal medical management

I’m being honest here; my seizures are controlled to a certain extent, not seizure-free by any means. I spent an hour in an ER this week because my seizures were so uncontrolled. Banzel has been the cop that wrote the partial-control ticket to my seizing vehicle. People around me know I have Epilepsy because I’ve told them, I think honesty here with your friends is paramount. Tell them so they won’t think you’re weird, or high, mentally ill and acting out, though who would want to pretend they have seizures, is beyond my reasoning—and I have met a few in my life, and seeing the pills you ingest—one of those drug abusers you hear about, call the cops or psychiatric people. I’m sorry, but I have no respect for psych ward people, and I do apologize for that attitude. I also realize that they have a job to do and they do it to the best of their abilities. I spent five-days in a Psych Ward once and never plan on spending another second in one.

All the details given, unless otherwise noted came from the Epilepsy Foundation. Details regarding population, World and USA, came from the USA Census Bureau’s Population Clocks.

Stoplight at the end of the tunnel: goodbye Vimpat/hello Banzel

MILEPOST 10—THERE WAS A STOPLIGHT AT THE END OF THE TUNNEL

Goodbye, Vimpat, Hello Banzel

June 6, 2009, Vimpat (lacosamide) was released to the public. It is a complementary drug, to be used along with your other drugs. Before I was taking it, at a conservative estimate, I was having 2 to 4 seizures a week, according to my mother, Grace, 2 to 4 a day. That comes out to 8 to 16 a month or roughly 60 to 120 a month. From June 11, when I started taking it to mid August, I had 5 seizures. I judge that I’ve had a seizure by the bruising my body has taken on—back pain, if I’m limping and going by that, my body didn’t get beaten up too badly, I might have had dozens of seizures I didn’t record as I didn’t realize it.

Were I not to have taken it or been able to get it, it would have been 60 to 120 seizures per month as the prior count that had a variance from 8 to 120 per month was with medication, without Vimpat’s aid I might have died in status epilepticus. If you are on AEDs and are controlled, that doesn’t mean that your Epilepsy has dried up and blown away no matter what the official interpretation might be. Without AEDs, my life would be a car wreck

For a period of time anyway, my seizures were controlled, not seizure free but controlled. Personally, I don’t believe there is such a thing as seizure-free, possibly because I’ve only been so once in my life, while on the study drug—Sabril, and that condition did not last long.

Vimpat was not without its negatives. While I tapered onto it, I had severe balance difficulties. I crawled around on all fours; I crawled to kitchenette, bed, and bathroom. I called it Vimpat drunkenness or “riding the Vimpat tornado.” After I took my pills I laid in bed for a couple hours until the dizziness stopped—if you are trying to write a novel, that does not do wonders for your creative output. Finally, in 2013, I had enough of that and got off of Vimpat, September 15 was my last day.

Vimpat, as with other AEDs (Anti-Epilepsy-Drugs), acts upon the brain and in rare cases (1 in 500) there are problems with suicidal thoughts or actions, depression, or compulsive actions. This is true for most other AEDs. My thoughts haven’t been depressed or suicidal but at times my thinking has gotten decidedly weird, weirder than usual, anyway.

In 2013, I wasn’t being compliant with my meds. This was unintentional; I was having so many seizures I was really disoriented, or ‘out of it.’ On June 18, 2013 I entered United Hospital’s Unit 7900, the Intensive Monitoring Unit, to be taken off of Dilantin and be put on something else to replace it. So, from June 18 to June 29 I was tapered off of Dilantin and tapered onto Banzel (rufinamide). Banzel is great because there haven’t been any side effects.

I am currently on 4000 mg of Banzel each day—eight 400 mg tablets, 16 mg of Fycompa, and currently—600 mg of generic Lamictal. That is my dosages per day as of 11-15-2015. Banzel is a pricey drug but it in conjunction with the other two AEDs has controlled my seizures very well. It came out in 1998 and after 17 years a drug goes generic; so, in 2015 a generic version of Banzel (rufinamide) will be available; it no longer will be—$9.95 per one 400 mg tablet, yes, that’s right—nearly $10 for one pill, in my opinion that’s as obscene as some of these pornographic movies and literature they talk about. Even if the generic is half that price it will save my insurance company—Uncle Sam America a lot of money.
Unfortunately, the generic Banzel thing didn’t work out.