Maybe It Is Morning (Life After My Major Stroke)

MAYBE IT IS MORNING (Life After My Major Stroke)



It is light when I wake up. Maybe it is morning. It was dark when I went to sleep, it is light now so it must be morning...maybe. How to dress now? I go outside and look around the front yard. There's no snow, so it isn't winter. The trees have no leaves so it isn't summer either. It feels kind of cold. I'll wear a coat and some gloves. But if I dress for winter and it's spring, people will stare and think me weird. If it is winter and I dress for spring, I'll also look strange.

Since the sun is shining it is a good day to take a walk. I wear jeans, my flannel shirt and...just in case, pack a winter hat, scarf, and gloves in my shoulder bag. About a mile from home is my favorite bookstore and tobacco shop. Perched on a corner across from the campus, it is on the main drag through town. Two doors down is a cafe where I like to go and have my morning coffee while reading a book or newspaper.

Dressed for all possible seasons, I leave the house and start walking. At the foot of the driveway I turn left, walk two blocks, turn left again and walk about five blocks. The air is cool and crisp. Maybe it is autumn. I reach the corner and am shocked to find there is no bookstore. There is no campus, no main street lined with shops and small cafes. My heart begins to race and I am sweating. There is no Charlottesville.

I'm standing at the intersection of a busy highway. How did this happen? I don't know where I am or how I got to be here. I cannot remember how I got to this corner, I was home and now am on the corner of a strange highway.

Where is it? Where am I? I can't remember! I just don't know! It dawns on me I must have had one of those "spells" and gotten lost. My eyes won't focus and the street sign is blurred to my vision. Drawing close, I can read it with my left eye. It says "Colorado Boulevard".

Impossible. There's no Colorado Boulevard in Charlottesville, Virginia. By now, I know I've had a spell and don't know what to do. The fear is making me nauseated and I don't know where I am or what to do now. Just start walking. Walking and walking, I'm trying to get over the fear, it only makes the confusion worse. Walking, breathing deep and slow to quiet my racing heart, I am afraid to walk far from the street sign. It is a marker to give me some sense of where I am in relation to home. Where home is, where I came from, or why I am on this highway, I just don't know.

Keeping the sign in sight, I walk until I come to a newspaper machine. I'll get a newspaper. It always has the name of the city and the date on it. Reaching for some coins I discover my left arm is paralyzed. I must have forgotten when I had the spell. With my right hand I manage to get some change out of my pocket. I'm so scared now it isn't possible to figure out what kind of coins they are. I start putting them in the red machine until I succeed in getting a newspaper.

I want to scream, cry, but something is wrong and all I can do is tremble and try to keep from falling down. I remember I cannot ask anyone for help because my speech is so slurred they will think I am drunk or crazy. I practice some deep breathing and pray my memory will come back and end this terror. After calming myself a bit it is possible to recall the brain surgery that leaves me so horribly confused at times. I tap my head. I am wearing the helmet protecting me if I have a seizure and fall--at least I remembered that. Maybe I had a seizure and that's why nothing looks familiar.

When I feel steady enough I risk a look at the paper. It is The Denver Post and is published in Denver, Colorado in 1983. Once more a wave of nausea and shock comes over me. 1983? Colorado? But it is 1970 and I'm in Charlottesville, Virginia. Or, I woke up in Charlottesville this morning.

How can I be in Charlottesville, Virginia in 1970 and be looking at a newspaper from Denver, Colorado in 1983? I try to remember if I'd taken any LSD. No, haven't used drugs for years. What years, how many years? I can't remember. This confusion has happened before. If I just move around and stay calm my memory will come back. For some time I walk along the highway going about one block from the sign and back again. I know it is a landmark, pointing to where I came from this morning.

After pacing for some time, how long will never be known, my memory slowly returns. I'm in Denver and I live at Joe's house. I think we're married. Nothing looks familiar to me, but Colorado Boulevard may be near his house.

I'm sure I was too scared to cross the highway earlier and begin walking down the long street I think I'd been on when I got so confused. Nothing is familiar. This is not Virginia. After a while I go down another street and finally come across Steele Street. In my wallet I find something with my name and address on it. The house number matches. Must be where I live. I swear I've never seen this house before. Maybe it is where I live. I ring the doorbell but no one is at home. The keys in my pocket fit the door so it must be where I live.

I let myself in and sit down in the living room. This place is filthy. I'd never live like this. It smells like cat shit. This is not my apartment in Charlottesville. The newspaper reminds me I'm in 1983, in Denver, but place and year have no meaning. I walk around the house and find some things that seem to be mine. There's a book, "The Mind of a Mnemonist," by Luria. I'm reading that book, but where? And when, and why? The address matches, the keys match, and this is my book, so it must also be where I live. If this is Joe's house, he is a filthy pig. Those spells get me so confused. Maybe if I rest my memory will unscramble itself. I lay down in one of the two bedrooms and feel a little bit like Goldilocks. I wonder what will happen if the three bears come back while I'm resting. After napping I am a bit more oriented. This is Joe's house in Denver and it must be 1983 if that's what's on the newspaper.

It is 1981. I live in Denver and write for a small newspaper. Joe's sister and I work together as waitresses in a restaurant on Colfax Avenue. I move to California.

It is 1982. I am living with friends in Eureka and writing a book. I have a stroke and brain surgery. I go into surgery on October 27th. When I wake up it is November 3rd. They tell me I was in a coma and my left side is paralyzed. I cannot remember most of my life from age 18 to 30. My roommates and family abandon me at the hospital. I am placed in a nursing home and forced to take drugs that make me more confused. I run away to Ed's in Palo Alto. That afternoon I collapse and he rushes me to Standford University Hospital. Spinal Meningitis. I nearly die a second time.

Joe sends me some money and says I can stay at his house in Denver. As soon as I am strong enough I go Joe's. We have dated a few times but he is not my type, too passive. I haven't been there very long when he begins to tell me how expensive it is to feed me, that he might have to put me in another state home. He is having trouble making his house payment. If he marries I become his legal dependent and he will get a few hundred dollars a month increase in his Air Force wages for having a dependent.

Besides, he argues, he really hates sleeping alone, and being the only single guy at the officers' parties. If I will just keep quiet, he will get more money for his house payment, he won't have to sleep alone, and he won't be "forced" to call some authorities and have me taken to a state home like the one in California.

I hate his guts. I had been raped and strangled when I was seventeen, but it is not as sustained and brutal a violence as this. My speech is very slurred, and even if I could talk clearly there is no place to go for help, no one to call. So I marry him under threat of being sent to another nursing home and being force fed drugs that leave me more confused and disoriented.


It is 1983. I am living in Joe's house. We are married and what happens at night can only be called rape. And I have to pretend I enjoy this, if I don't, he is holding this threat over my head. I must keep up the game until I have the strength to get away from him.

Still, when I wake up it is morning. A morning like many others. But those other mornings are in 1970, in another state, another time. Somehow I've gotten from 1970 to 1983 and I can't remember how. I do remember I had brain surgery and was in a coma. I do remember my left side is paralyzed and it is hard for me to talk or think clearly. It is light when I wake up. Maybe it is morning.
--------------------------------------------------------------------------------

@1996,2012 by Zoë L. Langley

Links to my Suite 101 Articles

Mom Becomes Activist for Son and Others With Epilepsy

"Ben was doing well in school," says Sallieann Gould. "He was expelled for...'unprovoked medical behavior,' in other words, too many seizures."
Epilepsy: Overview of Lennox–Gastaut Syndrome


Lennox-Gastaut syndrome, a rare and difficult to treat form of childhood epilepsy, affects 1-5% of children who develop seizures.

Epilepsy Journal as an Aid for Seizure Control


The most effective way to stop seizures is by learning to prevent them. Journal writing is a valuable technique for learning ways to improve seizure control.

Epilepsy-Misdiagnosis is Common


The diagnosis of epilepsy is often wrong. Several studies indicate that, worldwide, as many as 50% of those diagnosed with epilepsy have seizures due to other causes.

Gluten Sensitivity and Drug Resistant Seizures


Sensitivity to gluten can be a hidden cause of seizures, one that is treated with a gluten free diet

Neurofeedback for Epilepsy and Other Conditions


Playing video games while hooked up to an EEG brain wave monitor is not tuning out. Neurofeedback uses video games to help brains tune in, tune up, and work better.

Neurofeedback for Epilepsy


Robin Neudorfer's daughter, Rebecca, turned to neurofeedback when epilepsy drugs failed to help her seizures. She's made steady improvement with a year of training.



Epilepsy - Stopping Anti-Seizure Medication


People who become seizure free while using antiepileptic drugs may no longer need anticonvulsants and most doctors will agree to discontinue the medication.

Epilepsy - Modified Atkins Diet Reduces Seizures


While part of a research study on the Modified Atkins Diet for epilepsy, Brooklyn Koski's seizure frequency dropped from 100 to only five to ten per day.

Epilepsy - Modified Atkins Diet Research


Researchers at John Hopkins Hospital are recruiting adults and children with uncontrolled seizures for clinical trials investigating the Modified Atkins Diet as therapy.

Epilepsy - Atkins for Seizures Support Groups


Two web communities provide support for those using the modified Atkins diet for seizures and those wanting to learn more about this treatment option for epilepsy.

Review of Research on Epilepsy and Toxoplasmosis


The causes of most seizures are unknown. For some of these seizures, the parasitic infection toxoplasmosis may be a missing piece of the diagnostic puzzle.

Overview of Toxoplasmosis: Parasite Infection Carried by Millions


Toxoplasmosis is a parasite infection found worldwide. Causing no symptoms for most, it may be deadly for those with weak immune systems.

Learning, Behavior, and Memory Problems in Kids


Kids with learning and behavioral disorders often have poor working memory. A recent study takes an in-depth look at traits kids with poor working memory have in common.

ADHD and Dyslexia


Typical ADHD symptoms such as inattention and poor reading skills, may actually be signs of dyslexia, a widespread and very treatable learning disorder.

ADHD and Sleep Disorders


Sleep disorders are common, often unrecognized , and can trigger ADHD behaviors in children and adults.

Book Review - Victory over ADHD


This book is a guide to natural therapies and an intimate account of one family's successful journey to cure their sons' attention and other learning disorders.

ADHD Without Labels - Treating the Whole Child


Skip the labels, nurture the child. All children have gifts and strengths that can be used to help them manage or overcome their ADHD symptoms and thrive.

ADHD Drugs May Increase Kids' Risk of Dying


A new study links the use of Ritalin and other stimulant drugs to an increased risk of sudden death from cardiac problems in children.

Gluten Sensitivity and ADHD


Celiac disease may be the unknown cause of many ADHD behaviors and switching to a gluten free diet could improve or eliminate the symptoms.

Gluten Sensitivity and Mental Illness


Depressed? Anxious, having trouble concentrating, or with mood control? Before labeling these symptoms as psychiatric, consider testing for gluten sensitivity.

Legal Rights Victory for Mental Patients


Under a ruling issued by the Alaska Supreme Court on May 22, 2009 William Bigley, subject of the case, may now enjoy the same constitutional rights as other Americans

Migraines and Gluten Sensitivity


A gluten free diet could bring relief to a large number of the 30 million Americans who suffer from migraines. The diet is required for those who have celiac disease.


Diabetes and Gluten Sensitivity


Among adults with type 1 diabetes, celiac disease is found ten times more often than in the general population and is very common in children with type 1 diabetes.


Gluten Free Vegetarian Chili With Buckwheat


Chili made with buckwheat is another great choice for the gluten free diet. This chili is nutritious and goes well with wheat free bread or crackers.

How to Cook Buckwheat


Both roasted buckwheat (kasha) and raw hulled buckwheat (buckwheat groats) are easy to cook. For each cup of buckwheat or kasha, use two cups of water.

Gluten Free Buckwheat Raisin Cinnamon Pudding


Spiced with cinnamon and sometimes nutmeg or allspice, serve this pudding warm with a little milk. Buckwheat pudding is nutritious and fun to eat at any meal.

Buckwheat and Sorghum Flour Pancakes


Pancakes made with buckwheat and sorghum flours are every bit as tasty and filling as those made with wheat or other gluten flours. They are very nutritious too!

Scoliosis Basics


Scoliosis affects as many as six million people in the United States. Early diagnosis and treatment improve the odds of stopping this disorder from progressing.

ASAP -Resource For Two Rare Disorders


"I went to the ASAP website looking for a cure, but found a lot of people who were looking for the same thing I was - Hope." - Christine Webb, who has syringomyelia

Living With a Rare Spinal Cord Disorder


The pain was sharp, "I was driving home when I felt like someone stabbed me in the head. I pulled over and sat crying in my car, wondering what was happening."

Understanding Syringomyelia


Syringomyelia (sear-IN-go-my-EEL-ya), is a rare disorder in which a fluid filled cavity develops in the spinal
cord...


Kentuckians For Single Payer Healthcare


Physicians, healthcare workers, and individuals throughout Kentucky have joined forces to pass a law that would provide healthcare to everyone who needs it.

IMACK: Improved Medicare For All Central Kentucky


Thousands of working Kentuckians pay taxes to fund Medicare yet have no health insurance. A bill now in Congress would extend Medicare to all who need it.

Rickets, Seizures, and Vitamin D

"Rickets on the Rise," "Elderly at Risk of Vitamin D Deficiency." These are just a few headlines making world news about vitamin D Deficiency. Research is now linking the development of many chronic diseases to low levels of vitamin D.

If you take anticonvulsants, this link is significant because anticonvulsants can rob the body of its supply of vitamin D. Low levels of vitamin D can set off psychological, neuromuscular, skeletal, and nervous system disorders. However, research indicates these symptoms may be preventable.





x-ray of a 2 year
old child with rickets



In its active form, vitamin D is calcitriol, a hormone, not a true vitamin. Sunlight reacts with oil in the skin to form vitamin D3. In the liver it is metabolized into calcidiol (25 hydroxy vitamin D) and stored in blood and fat. Throughout the body calcidiol is converted into calcitriol as it is needed. In the early eighteen hundreds, a Polish physician recognized a connection between lack of sunlight, our main source of vitamin D, and the development of rickets, the bone deforming disease of early childhood.
Vitamin D deficiency has been called the enduring epidemic. Widespread throughout the world today, vitamin D deficiency was pervasive a hundred years ago when rickets was endemic. About 80% of children in American cities had rickets in 1900. Some studies of this era in northeastern cities found the rate among Blacks and Italians, people originating from warmer climates, to be 100%.
At that time, it was difficult to find a child in London not suffering from what was called "The English Disease." Rickets was also common among children in Glasgow, Paris, and Berlin. The lifestyles of the world's most industrialized areas included too little sunlight to nurture life and prevent illness.
Smoke and pollution from factories, and too much time spent indoors, contributed to the problem. Rickets and osteomalacia (adult rickets) were common in all age groups, all social classes. Sometimes entire families were afflicted.
Along with bone deformities, other problems are linked to nutritional rickets. Sir William Gowers, a major figure in the history of neurology, saw a strong connection between rickets and the development of seizure disorders more than a century ago. Children suffering from rickets often developed seizure disorders when teething and he thought the two were related.
Everyone has a seizure threshold, a tolerance level for seizures. Anything that increases your risk of having a seizure, such as fevers in children, or metabolic distress lowers the seizure threshold. Whatever raises your seizure threshold reduces your chances of having a seizure. Vitamin D deficiency may trigger mineral and electrolyte imbalances that can lower the seizure threshold.
Gowers conducted a study of 180 young children with seizures in the 1880s. The seizures first occurred in 72 of the cases when the child was teething. Expressing the opinions of his time, Gowers wrote that nearly all cases of convulsions beginning during this period of childhood could be attributed to the "irritability of the nervous system" due to rickets. He made his observations forty years before vitamin D was identified and recognized as crucial to the development of healthy teeth and bones. Cod liver oil, one of the richest food sources of vitamin D, was a common prescription for rickets and seizures in the 1800s and well into the twentieth century.
Public Health and education campaigns beginning in the 1930's promoted food fortification and healthy sunbathing to prevent vitamin D deficiency and rickets. By the 1960s, it appeared rickets had been eradicated. However, neither rickets nor vitamin D deficiency were eliminated and deficiency continues to be widespread.
People who take anti-seizure medications face a greater risk of developing vitamin D deficiency than the rest of the population because these drugs can interfere with the body's metabolism of vitamin D leading to drug induced deficiency. Rickets, osteomalacia, osteopenia (thinning bones) and osteoporosis are the most noted vitamin D related side effects of anticonvulsants.
However, we are just as dependent on vitamin D for a healthy nervous system as for sturdy bones. Fat soluble vitamin D is needed to absorb and metabolize calcium and phosphorus, the two most abundant nutrients in our bodies. As minerals, calcium and phosphorus form hydroxyapatite, the hard crystals which make our bones solid and strong. As electrolytes calcium and phosphorus create nerve and muscle impulses.
If we develop vitamin D deficiency, calcium and phosphorous levels may also fall. Calcium deficiency (hypocalcemia) can cause many health problems. Symptoms may include tingling sensations, nervousness, cardiac arrythmia, muscle spasms and twitching. Neuropsychiatric symptoms include irritability, mental confusion, and behavioral changes.
While too little calcium is associated with bone loss, too little phosphorous (hypophosphatemia) causes soft, weak, and poorly formed bones as well as muscle weakness, confusion, heart problems, and difficulty with speech. Phosphorus is crucial for converting food to energy and needed by all cells in the body. Deficiencies of either calcium or phosphorus lower the seizure threshold.
Sometimes, after years of being seizure free on anticonvulsants, the seizures return. The problem may be the medication. A recent medical report from Kuwait describes how hypocalcemia, a side effect of anti-seizure medication, led to a patient's loss of seizure control after five years of successful drug therapy. His seizures stopped and he regained control following treatment with vitamin D and calcium. The authors concluded loss of seizure control while taking anti-seizure medication is a warning sign to check calcium levels.
By triggering deficiencies of calcium or phosphorus, low levels of vitamin D can be a factor in the development of seizures. But what about preventing seizures? Vitamin D may have a role here as well. A 1984 research study found the seizure threshold of laboratory rats increased when vitamin D3 was injected into their hippocampi, an area of the brain that is very susceptible to seizures.
An exploration of sunlight as vitamin D therapy for seizure patients showed promising results. During the 1982 study, 450 institutionalized patients taking anticonvulsants received sunlight exposure in addition to their medications. The results indicated sunlight therapy may be the reason most of those patients did not develop osteomalacia or rickets from using anticonvulsants.
These and other studies suggest that osteoporosis, mental confusion, and other side effects of anticonvulsants may not be inevitable. The key is maintaining adequate levels of vitamin D, calcium, and other nutrients.
Seizures may be the first noticeable symptom of vitamin D deficiency. Over the last decade physicians from coast to coast have expressed surprise and alarm at discovering children whose seizures are due to vitamin D deficiency rickets. Not all the children appeared to be malnourished, yet they were not receiving enough vitamin D from diet and sunlight to prevent the development of rickets and seizures. Breast fed infants may not receive enough vitamin D from breast milk alone to meet their needs. They must also get vitamin D from sunlight, diet or supplements.
Gowers suspected a nutritional factor at work when children developed seizures while teething. That factor was vitamin D. Today this link may be overlooked in the mistaken belief that vitamin D deficiency is rare. Some of the world's most eminent vitamin D researchers believe up to half the population has below optimum levels of vitamin D. Vitamin D deficiency is common among all age groups in North America.
Vitamin D deficiency is a problem we can fix. The American Academy of Pediatrics revised its recommendations for Vitamin D in 2003. The Academy now recommends 200 IU of vitamin D for children who are not getting adequate vitamin D in their diets or from sunlight.
Speaking out on these concerns is Dr. John Cannell, Executive Director of the Vitamin D Council, whose mission is to raise awareness about vitamin D deficiency. According to Cannell, " A lot of people just won't go into the sun. They just won't; their doctors have told them not to. The Federal Government tells them it causes cancer, which it does. It also prevents cancer. Very little time in the sun is needed for the body to make its own stores of vitamin D."
A quick and easy solution to vitamin D deficiency may be a walk on the sunny side of the street. Writing in "The UV Advantage," Dr. Michael Holick says that just a little sunlight is quite enough to meet our needs. For light skinned people living in the United States, Holick writes, 15-20 minutes skin exposure to sunlight several days a week can produce the as much vitamin D as the body needs from March through October. People with dark pigment will need much longer exposure, up to an hour or more.
Supplements may be the safest means for people who take anticonvulsants to get adequate amounts of vitamin D. Many anti-seizure drugs also cause increased sensitivity to sunlight. If you take anticonvulsants you can check with your pharmacist to see if your medication puts you at risk of becoming sensitive to ultra violet rays from the sun or tanning lights.
Despite decades of reports indicating bone disease is a side effect of using anticonvulsants, most physicians are unaware of the risks or preventive effect of maintaining adequate levels of vitamin D and calcium. A study reported in 2001 found only 7% of adults' neurologists, and 9% of children's' neurologists prescribe calcium and vitamin D to their patients who have seizure disorders. The study concluded more awareness of the problem could improve the bone health of many patients with seizure disorders.
Vitamin D deficiency, and the problems deficiency can initiate, may not be an unavoidable side effect of anticonvulsants. By screening for deficiency and being sure you maintain normal levels of vitamin D and calcium, some of the dreaded side effects of anticonvulsants may never develop. With careful attention to nutrition, some cases of seizures, as Gowers suspected, may indeed be preventable.

Links
• All About Vitamin D
• About vitamin D deficiency• Vitamin D testing• Vitamin D Supplements
• Vitamin D Requirements






Picture: http://en.wikipedia.org/wiki/File:XrayRicketsLegssmall.jpg

Valproate, the Urea Cycle, and Hyperammonemia

This is a technical and "must read" article about how valproate may interfere with the urea cycle and lead to hyperammonemia. If the risk here is recognized, it may be possible to use vitamin supplements along with the medication to avoid the danger and enable the drug to work effectively.
Seizures are one of the symptoms of hyperammonemia.
Link to Article: