Be sure to check out Ralph Zimmerman's new Book, just completed this December 2011, after 4 1/2 years -
"I'm Okay Now - is A Voice From Heaven"
It's all about Denver Mendenhall's Life of Courage and Love
Denver M.
The past 4 to 5 years Denver's complex partial seizures which always result in loss of consciousness and the need to sleep it off, have been on a general increase in frequency and intensity, but on his current meds, his recovery is somewhat quicker and his seizures do not cluster so much as they used to. He used to get clusters of 4 to 5 seizures over a period of 2 days and then he'd be OK for a week to 10 days and you knew you could try to enjoy those days. Now, however, his seizures can come at any time usually just one and there is no pattern, could be two in one day. You never know. It's made life extremely difficult. His neurologist says that 4% of patients die from seizures which means 1 seizure in 2500 is lethal. He's way beyond 3000 in his lifetime so anytime could be the last one. He is pretty much scared to death all the time and the years of meds and seizure have taken their toll on his ability to do much of anything except the labor of his love and obsession, his Black Light Amusement Park. Some people say the seizures are no big deal but consider the fact this his seizures ruin every day that they happen. That means fully 1/4 to 1/3 of his days are spent in limbo of being here but not not here as he recovers from or or is suffering from the onset of another. Sometimes I can predict when and I'm right more than half the time. Consider that when he was able to drive he wrecked three cars, no one hurt, before he realized he had to stop driving. Consider that the last job he worked at or tried to work at, he lost 22 days of work work from seizures. Consider the shame of letting your coworkers down so often and having to rely on them to pick him up and take up the slack, so may times. 22 Days missed in 1 year is nearly 1 day a week. Consider that he's been badly burned while working twice due to his seizures, one time requiring him to be off work for 6 months. Consider that through all this he has only an 8th grade education, and has never been able to take care of himself totally. Consider that for 20+ years he's had to burden his only friend for nearly his very existence. It's not easy. But he's never given up trying to the best of his ability. He's the kindest, most biggest hearted person , loyal and honest and he does not deserve his lot in life. You'd like Denver if you knew him. He just wants to live and wants someone to recognize what he considers to be a truly wonderful accomplishment.
On Denver's behalf by his best friend, Ralph
August 23, 1994 – Update at the end bring it current to April 2005
With the help of my roommate, I’ve constructed this brief history of my seizures and medications that I have taken for them.
Seizure and Medication History
My seizures started when I was 14 (I am currently 31) and for awhile I took Dilantin but my parents could not afford my medication. My seizures through my teenage years (the early 80~s) without medication were fairly far apart (several months) and mainly occurred at night and were accompanied many times by loss of bladder control. My seizures at these times left me forgetting a couple of days before the seizure and took me several days to recover and many were severe. I went as long as 7 months without a seizure that I was aware of during this time and with no medication.
In May of 1985 I had a seizure in public while I was by myself and was taken by ambulance to Denver General Hospital. I was attended to at the time by a neurologist named Dr. James Kelly. Dr. Kelly did a complete set of tests and started me again on Dilantin. Although the tests were consistent with my seizure disorder they failed to pinpoint any source or reason. He stressed at the time that he preferred Tegretol but only the brand name and not generic but was afraid that I might not take it 3 times a day as was needed and so Dilantin was the prescribed choice.
From May of 1985 to Sept. of 1990 my seizures continued while on Dilantin.. My seizures no longer were accompanied by loss of bladder control and for the most part were several months a part and did not interfere with my work.
In Sept. of 1990 I took a camping trip high in the Colorado Mountains. During that camping trip I started to get goose bumps that ran down the left side of my body. A feeling would start with a chill in the top of my head and run down the left side of my body producing goose bumps predominately on my left arm. This would happen sometimes a few times an hour or only a few times a day and continued for about 10 days. When I couldn’t stand it any longer, I called Dr. Kelly who had been transferred to University Hospital in Denver and he started me on Tegretol and weaned me off the Dilantin. As soon as I started taking the Tegretol the goose bumps stopped as well as the chills. I continued taking the Tegretol. During this period of time (Sept.1990 - May 1992) my seizures continued but were very mild - occurring about 10 times a month usually in groups of3 or 4 during a day and spaced 10 days to 2 weeks apart. My seizures during that period of time rarely interfered with my ability to work and if I had a seizure I was usually able to finish out my days work after resting for 15 minutes to a half-hour.
In May of 1993 I was recommended to participate in a drug study under the direction of Dr. Ronald Kramer at the Colorado Neurological Institute at Swedish Hospital in Denver. As part of the drug study I was also given an MRI which was negative. Dr. Kramer got me involved in a research program involving the study drug "Topirimate". During this clinical study I went for a period of 2 months (the longest in years) without any seizures. This occurred while I was taking both the Topirimate and the Tegretol at the same time. After weaning me completely off the Tegretol and onto the Topirimate totally, I had a very bad experience and had 10 seizures in 1 day which scared me a lot. I choose at that time, because I was scared, not to continue in the study program. The one day of 10 seizures made me forget the two months that I was seizure free.
In July of 1992 I want back on the Tegretol and my seizures continued at the rate of about 10 a month in groups of 3 or 4 at a time spaced several days apart. Sometimes I would only have just one very minor seizure in a period of two weeks and sometimes I would have the 3 or 4 in a day. Other times I would have 5 or 6 over a two day period and then none for 2 to 3 weeks. There was always a pattern that continues to this day.
In Sept. of 1993 the neurologists at Denver General Hospital who had been treating me both before the study drug experience and after, decided to start me on Depakote. I was weaned off the Tegretol and took the Depakote until Dec.1994. The Depakote was a bad drug for me. The side affects were loss of hair on the top of my head and shakiness that I found to be very irritating as well as a general uneasiness about me. During the time I was taking Depakote my seizures continued and were a times severe like they were back in the early 80’s. One led to the loss of bladder control and I started losing work because of my seizures. When I had them, the recovery was slower than it ever was before and the seizures would send me down and out for a half an hour or more.
In Dec.1994 I switched back to the Dilantin and generally feel better then when I was on the Depakote. My seizures continue at about 10 a month although there are less severe and seem to be at a pattern of every 10 days to 2 weeks even though I am currently taking 4OOmg a day. I get occasional goose bumps now.
MARCH 1996 UPDATE
In April of 1994 I had moved to Las Vegas, NV and came under the care of Dr. Tawney at the Outpatient Clinic, University Medical Center, 1800 E. Charleston, Las Vegas NV _I was also seen in the clinic by Dr. Simon Farrow, a neurologist. During the 1St week of February, 1995 which working at Pizza Hut, I had a seizure while I was pulling a pizza out of a 525 degree oven and put my left hand into the pizza causing severe 2nd degree bums. I was taken to the bum unit at University Medical Center where I had a seizure the first night there. Dr. Farrow was advised and came to see me. At that time he started me on 2400 mg daily of a new drug Neurontin, to be taken 3 times daily (2 - 4OOmg capsules 3 times daily) in addition to the Dilanatin. For a time it seemed to help but further episodes of seizures over the next few months led Dr. Farrow to add Phenobarbital to my growing lists of medications. Since about May of 1995 until now I’ve been on Dilantiin, 400 to 600 mg daily, Neurontin, 2400mg daily and Phenobarbital, 9Omg daily. My seizures during this time have been greatly reduced and now number only 2 to 3 a month, where I had been at 10 a month for years. My seizures now generally come just one at a time and my recovery is quick although I usually need a nap immediately following the seizure
Description Of My Seizures
Sometimes I get a warning but most of the time not, and even when I do I can not react in time to do anything about it. My seizures can vary from just a few seconds and disorganization to lasting several minutes where I will become very restless. If I am in my swivel rocker I will keep turning by using my feet to push me around My right hand will lock up and I will try to look back over my left side as though I was looking for someone who might be after me and I will try to go away from that direction or sometimes I will find something to focus on and look at it. My left hand many times will try to pick up something like a coaster or a whatever is closest and I will be busy with that hand in trying to straighten or position this item in a circular pattern. Obviously I am not aware of any of this and the description of my seizures was furnished by my friend.
Tegretol Vs Dilantin
My frequency of seizures seems to be about the same with both drugs. When I take Tegretol my seizures seem slightly less severe although the drug makes me feel more tired than the Dilantin.
Other Considerations
The fact that I have seizures for no apparent reason and that so far they seem to uncontrolled by any type of medication, plus the fact that they seem to be getting worse and slightly more often as I get older has an enormous impact on me. I do not feel comfortable alone, my thought processes sometimes are not as clear as I think they should be. I tend to shy away from learning new things, I am easily contused when under pressure at work and I am not able to converse easily with others making it difficult to have a lot of friends. I feel that my seizure disorder has made me dependent upon other people since I can no longer drive and since I do not feel comfortable alone. I am also in constant fear of losing my position at work or being discriminated against because of how my seizures affect me and my ability to work on those days that aren’t good for me. None of this does much good for my general well being and state of mind for it is constant worry.
JULY 1996 Update
Dr. Farrow had once told me that I might be one of those people who are very sensitive to Dilantin and occasionally at my current level of 600 mg a day, I feel dizzy and have trouble keeping my balance. Usually, skipping a dose or a pill will take care of these situations. As the years go by, I feel less and less sharp in my mental ability to grasp and understand new situations. 10 years ago I was able to find my way driving through a new city with a little help from a road map and today I can’t even find my way on a bus without considerable help from others. I get confused easily. When I get confused, I get very nervous and shaky and this sometimes leads to seizures.
I have lost my seizure diary that I kept for the past 4 years. During the three months that I was in Lincoln, NE I initially had several seizures a week and that tapered off over a month or so to 1 to 2 seizures every two weeks. I experienced a lot of emotional stress while I was in Lincoln and realized that I am not capeable of living on my own and should not be by myself Since arriving in Orlando on July 3rd, I’ve experience only 1 seizure for sure and perhaps another’ during the night that I’m only guessing about since I lost control of my bladder during the night and think I may have had a seizure.
September 1999 Update
For the past 3 ½ years I have been treated at the Epilepsy Association of Central Florida by Dr. Elizabeth Camm. Initially, the treatment consisted on continuation of the same medication that I had been on for awhile, that being 450mg of Dilantin, 2400mg of Neurontin and increased the Phenobarbital to 120mg per day. I am not sure when the increase of Phenobarbital happened. After a consultation with Dr. Goodman, my dosage of Neurontin was increased to 4500mg per day. At one point it was increased to 4800mg per day and I experienced major problems after about 1 week on that dose so I backed off to 4800mg per day. It seems to have helped some but then not.
November 2001 Update
My treatment continued with Dr. Camm and about 1 ½ years ago she started a plan to wean me off of the Phenobarbital and reduced my dose by 15 mg a day but never followed up. In looking at my seizure history over the past 4 years, my seizures have increased steadily year by year.
April 2005 Update
Since moving to Colorado, I’ve been seen by a neurologist, who has tried different medicines, all to no avail. He did finish weaning me off the Phenobarbital and currently has me on Dilantin and Kappa but the seizures continue.
LIST OF DOCTORS WHO HAVE TREATED ME FOR EPILEPSY
Dr. Laurence Adams Nov 2001 to present
Dr. Elizabeth Camm – Epilepsy Association of Central Florida 1996-2000
Dr. Ira Goodman - consultation
Dr. Krause Hartman - Crisis Center - Lincoln General Hospital - Lincoln, NE 6/96
Dr. Stacy Goodrich - Bryan Memorial Hospital - Lincoln, NE 4/96 - 7/96
Dr. S. Tawney - Outpatient Clinic University Medical Center Las Vegas, NV 4/94 - 4/96
Dr. Simon Farrow - Neurology Clinic University Medical Center Las Vegas, NV 9/94 - 4/96
Dr. Hughes - Neurology Clinic - Denver General Hospital Denver, CO 9/86 - 4/94
Dr. Ronald Kramer Colorado Neurological Institute at Swedish Hospital, Englewood, CO 1/93 to July of 93
Dr. Jim Kelly – Denver General Hospital 1985