Let me start with an apology to those who listened to last week’s Open Blog Friday on Gone to Texas on Blog Talk Radio. The audio was garbled in some places, and hard to understand in other places. The nice folks at Blog Talk Radio didn’t know what happened.
Our engineering staff here at the ranch came up with some possibilities: solar flares, earthquakes, and epilepsy seizures combining for that much-overused phrase, a perfect storm of electromagnetic disturbances that interfered with the phone system we use for the show.
OK, so what do you do if you have epilepsy, particularly temporal lobe epilepsy, and your medication goes bad on you? In other words, what happens when you become drug-resistant? That’s one of the areas we’ll examine today on the big blogcast.
We originally scheduled Sharon to be our guest, as she was with programs 1 and 2, but last night was a bad night. She had three seizures just after midnight, which is unusual. But that’s all right, because we will still look at some of the issues, and I have some excerpts from her book in search of an agent or publisher: Surviving Wonderland, my life with temporal lobe epilepsy.
Here’s a programming note, but not about this show. I’ll be one of the guests this afternoon, on Together Again Radio with relationship coaches Marsha Dean Walker and Jim Eastwood. We’ll discuss discrimination faced by the older, long-term unemployed jobseekers. (http://www.blogtalkradio.com/lwl-radio/2011/03/14/together-again-with-coach-marsha-and-coach-jim)
This is a 90-minute live call-in show that deals with various aspects of relationships – health, emotional wellness, intimacy and finances. This week kicks off a three-part series on gender, age, and weight discrimination.
Also on the program will be psychologist and author Dr. Nancy Irwin, an agent of change who will offer some insight about the learned behavior of bias.
Now, then, let me share with you some recent epilepsy news related to our topic today.
This first comes from Triple Helix Online (http://triplehelixblog.com/2011/01/nervous-system-mysteries-the-social-stigma-surrounding-epilepsy). The name of the article is Nervous System Mysteries: the Social Stigma Surrounding Epilepsy by Paulomi Bhattacharya.
He points out, as we mentioned last week, that doctors diagnose about 200,000 new cases of epilepsy a year, that’s around a little more than 500 a day. Even so, epilepsy remains largely overlooked and underfunded. That underfunding, according to this author, is at about $35 per patient compared to multiple sclerosis that comes in at $280 per patient, which is eight times greater.
Bhattacharya continues by pointing out victims of this ailment remain as ostracized from society as they did ten, twenty, even thirty years ago.
Commonly referred to as a “storm in the brain,” epilepsy is so frightening because of its unpredictable nature and the patient’s complete loss of self-control. The repeated seizures that burden the lives of epileptic patients are episodes of abnormal neuronal activity, caused primarily by excessive electrochemical signals in the brain.
When these unprovoked electrical impulses take place, patients lose complete control of their mental and physical functions. This sudden response can be characterized by a wide range of symptoms, from blank stares and small jerking movements to uncontrollable convulsions and loss of consciousness.
Epilepsy presents its patients with psychological and social challenges, and the stigma that is automatically attributed to them because of this disorder is in no way easy to deal with.
Bhattacharya says that because the brain is such a vital part of the human body, one major challenge for epileptic patients is definitely coming to terms with the fact that their brains work differently. Patients have a deeply altered perception of themselves and struggle with accepting their condition, especially in relation to everyone else around them. As Michael D. Hills from the Department of Psychology at the University of Waikato puts it, epileptic individuals face a sort of identity crisis — the traumatic question of “Who am I?”
In addition, epilepsy is often known as an “invisible” disease, because the seizures are so sudden and have no apparent cause. As a result, a fear of the unknown develops in the epileptic individual, as they never know when a seizure will strike. Apprehension, anxiety, and constant depression are unavoidable as they struggle with the sudden nature of the disease and consequently often deny that they have such an illness. Hills states that this denial leads to “concealment” and patients’ refusal for both treatment and support.
Ultimately, epileptic patients feel that they are already so alienated from others because their brains function differently, and the sudden nature of this disease only leads them to isolate themselves even more. Victims plunge themselves into a world of loneliness as they struggle to come to terms with a disease that attacks without warning and accept themselves as different.
Self-alienation and social discrimination often combine to keep people with epilepsy, or those who believe they may have it, from taking the time to sit with their family doctors, neurologists, or other healthcare providers to provide an honest assessment of their condition and what happens to them on a daily, sometimes hourly basis.
Indeed, some people with epilepsy may not remember some of things that happen to them or with them.
On the Web site Mediplacements (http://www.mediplacements.com/article-800452634-epilepsy_patients_more.html) is this article from March 9: Epilepsy patients more worried about memory loss than doctors.
The piece says researchers at The Ohio State University found that people with epilepsy ranked memory loss as their second most important concern on a list of 20 potential anxieties, while physicians placed the potential memory loss of those with epilepsy at number 12 the on the list.
Both patients and physicians agreed that experiencing an unexpected seizure, the legal right or ability to drive, and seizures not under control are in the top five worries for those with epilepsy.
The spokesperson for the university described the study as a “wake up call” to those working with individuals with epilepsy. “Indirectly, we address memory concerns in the clinic by addressing seizures. But we don’t typically sit down with a patient and say ‘tell me about your memory’”, he said.
Back on Jan. 11, Epilepsy.com (http://www.epilepsy.com/epilepsy/newsletter/jan11_onmymind) ran an article on the side effects of anti-seizure medication, also known as anti-epileptic medications, or AEDs.
These medications are arbitrarily divided into two groups; first (AEDs approved prior to 1993) and second generation AEDs (those drugs approved 1993 and later).
First generation AEDs include agents phenobarbital, phenytoin, ethosuximide, carbamazepine, valproic acid, primidone and the benzodiazepines—lorazepam, diazepam and clonazepam.
Second generation AEDs are felbamate, gabapentin, lamotrigine, tiagabine, topiramate, levetiracetam, zonisamide, oxcarbazepine, vigabatrin, rufinamide, lacosamide, and pregabalin.
The question most often asked of the author by his patients and other physicians is which medication he prefers to prescribe? The question is deceptively simple, he says, because the answer is based on a number of factors that include matching the right drug to seizure type, the drug’s mechanism of action, its interactions with other medications and most importantly, the expected side effects.
Side-effects often determine whether a drug treatment will be successful or whether it will fail from the start, he says. A given response to an AED can be unique as the individual taking the drug.
It is important to remember one basic fact, all drugs have side effects. All one has to do is spend some time on the FDA website to realize the number of potential side-effects that can occur with the use of any AED. So how does one choose between these adverse effects? Oftentimes, it is trying to predict which side-effect is potentially tolerable to an individual versus those which are not.
There are many adverse effects commonly noted with first generation AEDs. Double vision, is often seen with carbamazepine and phenytoin use. Weight gain is associated with valproic acid. Conversely, weight loss is seen with ethosuximide. Reversible tremor to the degree that it can mimic Parkinson’s disease and hair loss can often be noted with the use of valproic acid. Rash occurs with carbamazepine and phenytoin use. Gum enlargement, otherwise known as gingival hyperplasia is a common effect of long term phenytoin exposure. Low sodium levels, otherwise known as hyponatremia is seen with carbamazepine. Blood changes, such as diminished white cell counts can be seen with carbamazepine and phenytoin which could reduce one’s ability to fight infection. A decrease in platelets (important for blood clotting) is a concern with valproic acid. Osteoporosis has been reported to occur with long-term use of carbamazepine, phenobarbital, phenytoin and primidone. Tiredness or sleepiness is commonly noted with phenobarbital and the benzodiazepines. These effects must be taken into account when making a decision as to which drug to use.
Second generation AEDs are not immune to adverse effects. For instance, weight gain is associated with the use of gabapentin. Behavioral changes such as moodiness or irritability is commonly seen with the use of levetiracetam. Low sodium is seen with oxcarbazepine. If an individual has a first-degree relative, i.e., sibling or parent with a history of renal stones, topiramate and zonisamide can potentially cause renal stones in the individual as well. Rash has been reported to occur with lamotrigine, particularly if the dose is increased quickly. There can be EKG changes that occur with the use of lacosamide or rufinamide. Peripheral visual field loss is a serious manifestation of vigabatrin use and topiramate should not be used in persons with glaucoma. Meaningful decreases in white and red blood cell counts have been noted with felbamate exposure.
The author concludes by pointing out that a lot of different adverse effects can be associated with the use of various AEDs. That is why patients and their doctors must be constantly aware of the common adverse effects that occur in patients so that one can ask their physician for another option that does not cause that particular side-effect. It is only by an open and honest dialogue between a healthcare professional and an individual with epilepsy that good solutions can come about and positive change can occur to ensure good quality of life.
As I noted earlier, Sharon was scheduled to continue her discussion of her temporal lobe epilepsy that we started last week, but she got hit with three seizures very early this morning. She planned to talk about her inability to take AEDs, and to share with us a chapter from her unpublished book about her life with temporal lobe epilepsy. Here it is:
Getting off the meds, my year in Hell
By the start of 2009, I realized the medication prescribed to control my temporal lobe epilepsy and the pain that went along with it had taken control of my life. I had become zombie-like and thought about death every day. And, if living the life of the undead while constantly thinking about dying weren’t enough, my electrical pain had increased to the point that I couldn’t sleep through the night.
Each morning began with me reaching for my pain meds and anti-epilepsy drugs before I even got a cup of coffee or thought about the day ahead. By that time, each day was melding into the next as I sat in my chair and stared at the walls. I frequently thought about death while many times feeling overwhelmed by hopelessness. I attributed these feelings to the chemical cocktail.
One morning, my husband called me into the bedroom to watch a news story about Davocet, one of my prescribed painkillers. The Food and Drug Administration was considering taking it off of the market because its ability to kill pain was low, but the risk of accidental death from taking it was quite high. And I was taking the maximum dose.
I started taking Darvocet in 2001 when my family physician prescribed it for intractable migraines. She assured me it was safe and even told me I could take up to six tabs a day. I didn’t use it on a daily basis until the headaches got out of control, which was about the same time I started having an increase in multi-sensory hallucinations and other issues associated with temporal lobe epilepsy.
When I saw the psychiatrist who diagnosed my TLE, I wanted him to stop the intense pain that made me want to hurt myself, to stop the fear from seeing horrible and hellish scenes every day in my bedroom, and to fix whatever was wrong with me. He prescribed four Darvocet spaced during the day to deaden the pain and Xanax to help me sleep through the nightly terrors and the worst of the seizures. He also prescribed Neurontin and Clonazepam as additional anti-epilepsy drugs, which my Utah neurologist continued to prescribe.
I did as I was told, just as I always do, which resulted in hooking me on the Darvocet.
Even though at least three doctors had assured me Darvocet was a safe drug, I figured I’d better do my own research after I saw the story. The Web is a wonderful tool, and my degree in health information has helped me use the Web to find information about my condition and medication that my healthcare providers either didn’t know about or didn’t tell me. The public information I found about Darvocet made me question why I was still on the drug, especially when it wasn’t stopping the pain and was endangering my health and my life.
I was taking it six times a day, so I figured I could get completely off within a six-week period by substituting acetaminophen, which dulled the pain somewhat. I was not prepared for the strength of my functional addiction.
Getting off the Darvocet was painful and scary. I felt sick, really sick, for a long time. But that was only the beginning, because the Darvocet covered up problems with my other medication, especially the pain-related issues. As a result, I ended up withdrawing from six drugs before the year was out.
Neurontin followed the Darvocet, but I decided to withdraw gradually just in case the withdrawal added to my pain, which always increases seizure activity, which always increases pain. Even though I gradually reduced my daily dosage of Neurontin, the full-body pain intensified until it was all day, every day. I expected to feel rough physically for the first three months off of Darvocet and Neurontin, but I didn’t anticipate the level of pain, which was never below a 2 on a 1-10 scale, sometimes spiking to an 8 or a 9 at night. The gradual reduction of Neurontin, though, gave me back my short-term memory. I felt less depressed, less frozen, less hopeless, and less inclined to tears. I also got back some of my creativity.
Xanax was the next to go. My husband, however, insisted that this time I get a schedule from my primary-care physician instead of doing it on my own. Six weeks later, I was off the Xanax. During that time, I called the doctor twice wanting to throw the entire bottle away, because the pain I felt frightened me. He made me stick to the schedule out of concern that sudden withdrawal would throw me into more seizures.
After the Xanax, I got off Clonazepam, an anticonvulsant I took for Post Traumatic Stress Disorder. It affected me the same as Xanax, electrical pain on ingesting it.
By mid-summer, I looked like hell and felt worse. All I could think about was getting through the next minute, the next hour, the next day. My husband was a runner in high school and college. He always says that he pushed through the pain by telling himself the agony only lasted for a few minutes, but a victory lasted forever. I just kept telling myself that it would soon be over.
My seizures increased and my doctor was genuinely afraid for my safety. He insisted I find a local neurologist instead of dealing with the one in Utah. I had another AED I wanted to stop taking, but he refused to be responsible.
In the meantime, I got off Minocycline on my own. My dermatologist prescribed it because seizures made my face break out. She did not monitor it, though. I started to get dark marks on my face that looked like irregular bruises. They came from an iron build up in my system caused by the drug. Minocycline may have been the best drug for acne, but in combination with one of the AEDs, it was destroying my skin. So, I decided it was going in the trash, as well. My bruises gradually cleared up when I stopped the Minocycline.
Five months after I began my voluntary withdrawal, I made an appointment with a neurologist I thought was a major epilepsy specialist in Houston. I made my decision after looking at his Website, which listed and explained much of the medication I had taken. His personal information was “warm and fuzzy” and led me to believe he would be interested in helping me. My goal was to get off the Neurontin totally, but on a safe schedule, and to make sure Topamax was the right drug for me. I also wanted to understand my constant, unrelenting, and increasing pain.
By now my withdrawal count was four and it was August. I was sure the end was in sight. I typed up my information that described my seizures in detail, gave a good background history, and hoped he was the person for me. Five minutes into the visit, I knew I was wrong.
This doctor didn’t care where the epilepsy was “sitting” in my brain. To him, a seizure was a seizure. He was very disturbed that I heard voices. He told me up front that I was psychotic, because, in his opinion, voices did not accompany epilepsy. He then sent a recommendation to my general physician that I see a psychiatrist, totally ignoring the fact that I had been in therapy for the past six years. It was at that point I realized he didn’t really know what he was talking about.
And things got worse when he began to talk about surgery. I was determined, however, to get my money’s worth by playing along and getting a withdrawal schedule for the Neurontin. His answer was to stop cold turkey. He said Topamax was the drug for me and doubled my dosage. He then scheduled an MRI, which was a source of contention, because I wanted to do it near my house and not an hour’s drive to the other side of the city for his convenience. We finally settled on an imaging lab about ten minutes from the house. That was the last time I saw him. My reasoning was that I needed the MRI, but I had no plans of returning to him.
Thirty years ago, even twenty years ago, I would have been a “good girl” like another neurologist insisted I be, and blindly believed the doctor was acting in my best interest, simply because he was a specialist and board certified. I now know better. I know what my husband used to say when he was a working journalist: trust but verify. Patients have to be partners in their health care, and sometimes that means trusting in their instincts and on past experiences and learning as much about the medical condition as possible.
When I got home, I increased the Topamax, which worsened the pain and made breathing difficult. I went back to my low dosage. Going cold turkey on the Neurontin was painful, but I figured my body would adjust and the pain would go away. I was so wrong. The pain increased to a level that kept me from concentrating or interacting with others. It started around 9 o’clock each evening and intensified until about 6 o’clock the next morning. I slept very little and paced a great deal.
I started playing solitaire to try to deal with the pain. I found that moving my hands and keeping my mind occupied allowed me to carry on a conversation easier. It was my personal way of dealing with the chronic and seemingly unstoppable pain.
I tried several alternative forms of healthcare and healing as I went through my withdrawals, some of them worked and some failed with much distress to me. Acupuncture may have been the biggest disappointment. Our insurance does not cover acupuncture, but I know people who get pain relief from it. Our area of Houston does not have many acupuncturists and even fewer that seemed appealing. Regardless of what they say, acupuncture does not cure diseases, make the lame walk, or the blind see. After considerable research and unreturned phone calls, I found an acupuncturist within twenty minutes of our house.
My first visit was amazing. For the first time in several months, I had no pain. The fear, depression, and anxieties associated with chronic pain left. “Thank, God,” I exclaimed several times over the next few days. I felt relief and optimism.
Then came the second visit. At the first visit, I told the lady about my TLE and its effects. She seemed to understand what I wanted and what I needed. Something happened during the two weeks between visits, though. At the start of the second session, she talked about acupuncture as a cure for epilepsy. I told her again that I took medication to control the seizures, and that all I wanted was relief from the pain. She ignored me and proceeded to do something, I don’t know what, but it sent me right back into the pain cycle. I cannot express how angry I was. For the first time in months, I could manage my pain with aspirin, exercise, and massages. I slept through the night. I could interact with my family. I felt normal. Now, all of that was gone, needlessly, in my opinion.
I try to do some Pilates exercises every day, or at least several times a week. I know I have to stick with it, no matter how badly I feel, because I can see the gains from it. I would like to take outside lessons, but we can’t afford it, and I’m concerned about how I’d do in a group of women. I remember what happened during the meditation group in Salt Lake City.
Massages helped for a while, until the pain got so bad that I couldn’t stand to be touched. That was too bad, because my muscles knotted up against the pain, which caused more pain, which the massages alleviated somewhat for a few days.
Creative work sometimes took my mind off of the pain. I started making jewelry again, continued writing about my condition, and returned to sketching. Drawing took no mental exertion. I could do it while listening to book CDs or watching television. It helped with the frozen feeling I had experienced for so long. It also took my mind off of the anxieties over my battles with Social Security, which kept denying my disability appeals.
As the summer came to a close, my Utah neurologist said the drug withdrawals caused my pain and that my body would “reset” soon. Two months later, with no relief in sight, I went back to my general practitioner who honestly didn’t know what to do with me. We tried Tramadol to break the pain cycle, but I ended up in a cardiologist’s office a few days later after having what appeared to be a heart attack. It wasn’t; it was just a reaction to the Tramadol.
After the Tramadol fiasco, I was left with Topamax as my only prescribed medication. But, my life was getting worse. The Topamax was causing new side effects that could have been the result in the change to the generic form of the AED. The patent expired, and our insurance covered only the generic version; otherwise, we’d have to shell out several hundred dollars a month for the original.
Generic drugs are cheaper, yes, but the dirty little secret pharmaceuticals don’t tell you is that generic drugs are not always the same as the name brands because of formula differences. Prof. Jacqueline French, M.D., a researcher at New York University Langone Medical Center, gave a clear explanation of generic drugs at a conference in October 2009. She said generic drugs must have between 80 percent and 125 percent of the name-brand formula with a 90-percent assurance. Different companies use different amounts. This means one batch of generic drug may contain only 80 percent of the active ingredient of the original, or maybe 25 percent more than the original, with either amount causing really bad drug reactions for people sensitive to their medications, like I am.
Another problem Dr. French pointed out was that each time a prescription is filled, it can be from a different company, which could be anywhere in the world, and could result in adverse side effects or seizure breakthroughs. In addition, generics can contain other substances not found in the original that may cause problems to some individuals. She went on to state that no one has studied this so there is a lot of uncertainty.
The worst issue is the cost. Continuing to use a name-brand drug after a generic is available can run in the thousands of dollars, as was the case for me with Topamax and its generic form. Insurance companies switch patients to generic brands if the doctor does not clearly specify not to substitute a generic. This practice by insurance companies forces most patients to choose between their pocketbooks and their health, and sometimes their health pays the price.
It is my belief that when I switched from Topamax to its generic form, I was inadvertently poisoning myself. My original side effects for the Topamax, which included heartburn, an upset stomach, and a bitter taste, came back and were accompanied by a new group of symptoms that included swollen arms and legs, skin rashes, skin sensitivity to the point I could no longer wear makeup, chest pain, electrical pain, and severe joint pain that hurt worse than when I broke my arm many years ago.
I was afraid to get off the Topamax because it had given me back my sanity, but it was obvious from my pain and other symptoms that it was slowly, but surely, killing me.
There was another possibility to my suffering, though: Lyme Disease. I was tested for it twice, with negative results, but tests for Lyme return a high percent of false negatives.
My general physician recommended a neurologist for me to see, not wanting to leave it up to chance this time around.
On my first visit, I was aware she was different from the rest, probably because she ordered around $7,500 in blood tests, 18 vials worth. She also ordered an EEG and an EMG, because she suspected from my muscle weakness that I might have Lupus or Amyotrophic Lateral Sclerosis, Lou Gehrig’s Disease.
She also wanted to switch me from Topamax to Keppra. I had researched Keppra prior to the visit and felt it was the only drug left in the group of AEDs that might be safe. I already suspected Topamax was contributing to my pain, so I agreed, because I needed to know the truth.
Withdrawal from the Topamax was extremely painful and took four weeks, but by the end of the time my strength was returning. My skin had cleared and the brown marks were disappearing from my face. The swelling in my arms and legs went away and I began to feel normal and clear.
I was still in pain to some extent, but clear. She increased my Keppra, but then all hell broke loose! I was so wound up that I wanted to hurt myself. Back in her office again for the test results, I found that I did not have a degenerative nerve disease, and she decreased my Keppra. She also prescribed a small dose of Valium to stop the muscle spasms and the pulling on my joints. I discovered a direct correlation between Valium and the reduction of my symptoms when I went in for my MRI on my back a couple of weeks earlier.
When I took the Valium, small dose though it was, I slept for the first time in months. The pain stopped. The relief was so intense that I was unable to express it to my family. I didn’t say much about what was happening, because I couldn’t describe it adequately. Chronic pain is not only hard to bear, but it also does ugly things to the person. It made me forget all about the outside world as I focused on survival. It is not an experience I wanted to continue, and the thought of dealing with it for years on end left me hopeless.
The absence of the pain was such a strong relief that I did not want to think about the possibility of its return if my new drug regimen failed. Nearly 40 percent of epilepsy patients are resistant to drugs, according to Dr. French.
The final test, this one to check for nerve damage in my legs, was on December 28, 2009. It had been almost a year since I decided to get off of my drugs. A year in Hell I did not want to repeat.
That passage is from Sharon’s unpublished book: Surviving Wonderland, my life with temporal lobe epilepsy. That’s also the name of her Web site (http://survivingwonderland.webplus.net) where you can follow her diary entries and learn more about the condition.