Idiopathic Hypersomnia, Sleepless Overseas

An interview with UK-based writer Anne Wollenberg, who lives with Idiopathic Hypersomnia.

Idiopathic hypersomnia is a rare sleep disorder that causes extreme daytime sleepiness. This extreme tiredness remains even after a night time sleep of over ten hours. People with idiopathic hypersomnia have trouble waking up even after sleeping 12-14 hours, and naps do little to relieve their symptoms. Upon awakening from a nap or a full night's sleep, the hypersomniac may appear dazed and confused, a condition called "sleep drunkenness." This disabling disorder usually occurs in people over the age of thirty and may worsen with age. (http://www.sleepeducation.com/Disorder.aspx?id=48)

Q: You were tired all the time? You sought medical care and received tests. What conditions do you not have?

Pretty much any medical complaint that could be detected from a blood test, such as diabetes or thyroid problems.


Q: Are you currently in a relationship and if so, when did you first discuss this with your SO?

I'm not in a relationship right now - and when I do meet people it's hard to know when to bring this up. Recently I went on a date with someone new and tried to explain I had a sleep disorder (though I hadn't been formally diagnosed yet). His response was "Oh yeah, I fall asleep in front of the TV sometimes too." I instantly went off him!

Q: Does having a name for the tiredness make you feel better in any way?

It's not so much about having a name for it, as having doctors acknowledge that, yes, I really do have a genuine problem. Having evidence of that problem makes me feel much better, as it took so many years to find someone who would believe me and investigate.


Q: What did you study in college?

I have a BA in English and Sociology, and an MA in English with a creative writing specialism.

Q: Have you tried natural remedies, vitamins, mushrooms someone mentioned in response to the article?

I have tried vitamins, which didn't make much difference, but wouldn't try anything too outlandish. To be honest this is something where traditional medicine was needed in the first instance, but I'll be looking into complementary therapies too.


Q: Would you try acupuncture?
Definitely. It's something I'm going to look into.

Q: Are you tired right now?
I'm almost always tired, and I'm tired right now - but the difference is I'm awake and alert instead of being sleepy.

Read more from Anne Here

Starving for Perfection

An interview with Gila Gohen, Director Bergen Center for Eating Disorders:


What did you have for breakfast this morning?
Cup of coffee with a bowl of special k cereal with milk



What might an anorexic adult eat for breakfast, or lunch, or any meal for that matter?

Imagine not eating breakfast; imagine not eating dinner last night either. You try to make your body forget what hunger feels like. Instead, you are always faint, weak and tired. Perhaps yesterday you went the entire day eating only an apple and a light yogurt. At dinner, you played with and picked at your grilled chicken Caesar salad, the dressing on the side left untouched because of course that would be too many calories. Today, you will spend the day obsessively thinking about how you could eat a little less and ways you could burn a few more calories. Perhaps you will eat only half the apple. Your desire to be thin supersedes your desire to eat.

We know anorexia and other eating disorders are illnesses. Aside from the inability to see themselves as they are … what else goes on in the mind of someone with an eating disorder (fixated at being thin)

The anorexic’s biggest fear is that of gaining weight. They often have ritual obsessions and compulsive behaviors in regards to eating and food. They strive for perfection and the perfect person would be one who does not need to eat. Most of their day is consumed by their bodies, wanting food but trying to figure out how to deny themselves food. I often find that a severe anorexic has a blank like stare. I feel like I am sitting with someone who is as detached and empty as their stomachs. On further exploration I usually find they are suffering from depression and anxiety, among other things.


What role do you think media/tv/celebrities play in the increase of eating disorders in this country?

We live in a society where it is almost bourgeois to suffer from anorexia. At times it is even glorified. But it is not just about being too thin; it is about inner torment and hidden pain.

The media puts so much emphasis on being thin and as a result so much of our resources go into dieting programs. We as a society praise people for loosing weight. In order for them to continue to receive that praise, they need to keep dieting. Often anorexia starts out as a diet which then gets out of control. Perhaps one way to prevent eating disorders would be to stop commenting on weight loss or gain. There is more to us then our weight.

What can parents do to prevent eating disorders in their children?

To start with parents need to have a healthy relationship with their bodies and with food. Children will often learn by observing their parents. In addition parents need to teach their daughters that who they are on the inside is more important than what they look like. If daughters feel confident and good about themselves, who they are, and what they can become, then hopefully they will respect their bodies and treat it well.


We have long heard that this is a problem with teens. Tell us about what you are seeing among older women – in their 30s and older. Why is this different and why is this happening?

Sometimes women have been suffering for years with a mild form of an eating disorder, which triggered by something like stress can then become exacerbated; the disorder becomes more apparent at this time. Sometimes they want children so they eat enough to menstruate, hiding the disorder. After giving birth to their children they revolt against the changes to their bodies and their disorder escalates.
Other times I have seen that an eating disorder develops in women at a later age. They need to feel separate and in control, often in response to an unhealthy relationship, such as a possessive or controlling husband.

If you could tell women with an obsession with being thin… just one thing… what would it be?

No one goes around and says I wish I could be overweight just for a day. All of us in American society desire to be thin. I would want to help women shift their obsession to a more constructive way of living. I would let them know that they can move past these obsessive, all consuming thoughts about food, diet and weight and live a life that is less tormented.


When people call you for help, what are the first words they usually use?

“I don’t want to gain weight but I think I need help.” I reassure them that psychotherapy is not about weight gain but about feeling and responding to your body more positively. Often, that includes weight gain, and if needed, I work with nutritionists and medical providers to supervise weight gain and provide medical stability.

What are the risks of eating very little? We hear lately that starvation even has health benefits. If someone eats very little and has enough energy for life, what is the problem? Most of America is too fat anyway right?

To be slightly under ideal weight is healthy as there are a lot of risk factors that are associated with obesity. As I said earlier, anorexia often starts off as a diet which later gets out of control. Many anorexics were once overweight. An obese person suffers from a different kind of eating disorder and professionals need to be on the lookout to make sure the pendulum does not shift in the other direction.
Unfortunately it is when you cross the line to being too thin that problems arise. Anorexia has the highest mortality rate of any mental illness. 10% of Anorexics die from this disease or complications related to it. The medical risks of being anorexic are many. The two primary risks are: loss of bone mass which leads to premature osteoporosis and the most dangerous risk is that the heart rate slows, which can lead to death.

Eating disorders are not just about weight, and being underweight may be fine for your body. Eating disorders are psychological problems. What is most important is your feelings about your body and your sense of self. Seeking professional help may be indicated when you are not sure if you are simply too thin or suffering from an eating disorder.

What can husbands do if they are worried their wives obsess about food and fear it?

First, speak to their wives and openly communicate concerns. Second, concerned husbands should educate themselves about eating disorders and if necessary encourage their wives to seek professional help. Offering to make the initial call, and going with their spouse for the consult may be a way to show support and concern. These gestures may help their wives take the first steps towards recovery. Lastly, husbands will need to learn not to comment on weight and food


Do you have an example of a case where an eating disorder proved dangerous for the patient?

The most dangerous type of eating disordered patients are those that purge. I had a patient who spent the entire day eating nothing and then at night after she is truly starving, she consumes a lot of calories quickly and then purges. Her body does not have the resources to purge those calories and she has the potential to go into cardiac arrest. It is with patients like these where higher levels of care, including inpatient programs may be necessary.

Do you see men with eating disorders?

I rarely see men with eating disorders.I have done a few consults but they do not stay in treatment. My hunch is that they prefer to be treated by males. The males that I have seen are usually anorexic athletes. Anorexic light weight wrestlers are common. They need to be below a certain weight in order to stay in the light weight catagory, this encourages starvation. Sometimes the psychological profile of a male with an eating disorder is different than females. Unfortunately there are not many programs available that address men with eating disorders and there is much more shame with males seeking treatment. Often they seek treatment for other presenting problemssuch as depression or anxiety.



Should friends and family approach someone with an eating disorder with questions?

Some people with eating disorders like to talk about it and are comfortable doing so. Others will avoid the topic completely and are very ashamed. As with any issue, it is always okay to ask and then take their lead in respecting if they want to further discuss their eating disorder. I have found that those who have been in recovery and are doing well are more willing to talk about their experience with friends and relatives.




Has it been tough to maintain a normal relationship with food given your client base and professional expertise?

My relationship with food has improved over the course of specializing with this population. I am much more aware and connected to how I feel about food. I am constantly trying to help clients be attuned to their bodies; to pay attention to their hunger cues and to respond to their hunger and not deny it. I encourage clients to pay attention to when they are no longer hungry and not to keep eating until full. The process of all this instruction reinforces to me how I should feel about food.

Can of Worms for Breakfast Anyone?

When my brother was 6 he and two friends (Rusba and Nikoma?) started a worm club. It was very serious. They would not let anyone else join - the worms were too precious.

Turns out, they may have been on to something. Could worms be the answer to Crohn's Disease?

Why I Paid $80 to Chuck a Vaccine...

I caused quite a scene at my daughter's 1 year check up. They had drawn up the MMR before I had a chance to remind them that I am one of those "crazy people" who breaks up the shots... despite lack of evidence to support my actions.

I sent the peditricians office staff into a flurry until they saw I was 100% serious. I would prefer to pay out of pocket for the shot they had to throw away... than stick that needle in my daughter's leg.



Bottom line in my opinion? I have no clue if vaccines pose any threat. Most of what I have read indicates otherwise. But I am big believer in mother's intuition and know too many moms who point to the vaccines when they hug their children with autism.

I would not opt out of giving the vaccines, but see no good reason why I can not decide to spread them out. It causes minor inconvenience for the office but it certainly can not hurt to do it this way. It is my small compromise because I do not trust research that is so at odds with what normal human parents have seen in their homes. I chalk up my desire to "overcautious" "crazy" "paranoid"... until I start seeing articles like this. Maybe the docs shouldnt be so quick to dismiss the parents who wonder?


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Experts to discuss one puzzling autism case, as a second case has arisen
By GARDINER HARRIS
[The New York Times]
Federal health officials on Sunday will call together some of the world?s leading experts on an obscure disease to discuss the controversial case of a 9-year-old girl from Athens, Ga., who became autistic after receiving numerous vaccinations.

But the government has so far kept quiet a second case that some say is more disturbing and more relevant to the meeting.

On Jan. 11, a 6-year-old girl from Colorado received FluMist, a flu vaccine, and about a week later ?became weak with multiple episodes of falling to ground? and ?difficulty walking,? according to a case report filed with federal health officials and obtained by The New York Times.

The girl grew increasingly weak and feverish and ?became more limp, appears sleepy, acts as if drunk,? the report said. She was hospitalized and underwent surgery and was finally withdrawn from life support. She died on April 5, according to the report.

Both the 9- and 6-year-olds had mitochondrial disorders, a spectrum of genetic diseases that have received almost no attention from federal health officials. The 9-year-old, Hannah Poling, was 19 months old and developing normally in 2000 when she received five shots against nine infectious diseases. Two days later, she developed a fever, cried inconsolably and refused to walk. In the next seven months, she spiraled downward, and in 2001 doctors diagnosed autism.

No one knows whether vaccinations had anything to do with the girls? health problems, and the scientific significance of individual cases is always difficult to assess. But suggestions that mitochondrial disorders could be set off or worsened by vaccinations, and that the disorders might be linked to autism, prompted the meeting on Sunday and has brought the disorders sudden national attention.

Those scheduled to present at the meeting who were contacted by The Times said they knew nothing of the Colorado case.
?I haven?t heard about this case,? said Dr. Thomas R. Insel, director of the National Institute of Mental Health and the day?s first speaker.

Dr. John Iskander, acting director of the immunization safety office at the Centers for Disease Control and Prevention, said his group had studied the Colorado case closely but did not discuss it with those presenting at the meeting and had no plans to present the case to the conference, although he and members of his group will attend.

?Part of the consideration is, what was the best use of that time?? Dr. Iskander said in an interview. ?To a large extent, the judgment of the meeting organizers was to have the experts in these conditions ? which are not vaccine safety experts ? to have most of the agenda.?

Dr. Iskander said the Clinical Immunization Safety Assessment Network of the disease agency reviewed the medical records related to the Colorado and Georgia cases, searched for similar reports and asked vaccine manufacturers if they knew of similar cases. A spokeswoman for MedImmune, the maker of FluMist, declined to comment.

The team noted that the Colorado child had not experienced any problems with her previous vaccinations and was relatively old at the time of her diagnosis. Dr. Iskander said the group had concluded ?that this is another case that points to the need of better data on the risks and benefits of vaccinations in children with these rare disorders.?

Study after study has failed to show any link between vaccines and autism, but many parents of autistic children are convinced that vaccines ? usually given around the time autism becomes apparent ? are to blame.

Parents and a small group of doctors have offered a variety of scientific explanations in recent years to try to explain why they think vaccines may cause or contribute to autism. Among the first was that the measles vaccine caused a low-level measles infection that affected children?s brains. The science underlying that theory has since been discredited.

The next theory was that a mercury-containing vaccine preservative, thimerosal, poisoned their brains, causing autism. Multiple studies have failed to find any relationship between thimerosal exposure and autism, and nearly seven years after the preservative was removed from childhood vaccines, autism rates seem unaffected.

The Poling case, however, offered advocates a new theory: that vaccines may cause or contribute to an underlying mitochondrial disorder, which in turn causes autism. Although autism is common among children with mitochondrial disorders, several experts in the disorders dismissed the notion that vaccines may cause the disease, which is widely understood to have a genetic origin.

?After caring for hundreds of children with mitochondrial disease, I can?t recall a single one that had a complication from vaccination,? said Dr. Darryl De Vivo, a professor of neurology and pediatrics at Columbia University who will present at the meeting on Sunday and is one of the premier experts in the field.

Mitochondria, which serve as the energy factories of cells, have their own genetic material that is passed directly from mother to child. Flaws in this material are relatively common. As those flaws multiply, they interfere with mitochondrial function.

Dr. De Vivo said as many as 700,000 people in the United States had flawed mitochondria, and in roughly 30,000 of them the genetic flaws were expansive enough to cause disease.

Diseased mitochondria may appear in some parts of the body but not others, making diagnosis difficult and predictions of symptoms impossible. Infants with the disease may suffer frequent seizures and delayed motor and mental development, be short in stature and have hearing and eye movement problems. But in most sufferers, symptoms do not become apparent for years and may first present as weak or stiff muscles, poor coordination or alterations of posture.

Many experts said infections could be so devastating to those with mitochondrial disorders that the risks associated with vaccines were far outweighed by the benefits. Still, none dismissed the notion that a vaccine could cause a decline in such children.

?Most of these kids get a common cold, and either during the cold or soon after, the parents notice a drastic deterioration,? said Dr. Bruce H. Cohen, a neurologist at the Cleveland Clinic.

Margaret Dunkle, a senior fellow at the Center for Health Services Research and Policy at George Washington University and great-aunt to Hannah Poling, said she hoped that the researchers on Sunday would agree on studies that would help ?to identify who those children are for whom vaccination might cause or worsen a mitochondrial dysfunction so that we can figure out a way to immunize those children safely.?

?What?s the schedule and number of vaccines?? Ms. Dunkle asked. ?What?s the content of those vaccines??
Dr. Cohen said answering such questions was all but impossible because of the difficulties associated with diagnosing mitochondrial disorders.

?There is no test available right now to screen for mitochondrial disorders that is anywhere near sensitive or specific,? Dr. Cohen said, ?so the whole concept of screening prior to vaccination is a fantasy.?

Still, a discussion about the possible links between mitochondrial disorders, autism and vaccination is needed, said Dr. Insel of the mental health institute.

?We?re talking about two things we don?t understand very well, mitochondrial disorder and autism, and putting them together,? Dr. Insel said. ?It?s like two drunks holding each other up.?

The meeting, in Indianapolis, is being sponsored by the mental health institute, the Food and Drug Administration, the C.D.C., the National Institutes of Health, the Department of Health and Human Services and the National Institute of Neurological Disorders and Stroke.

Whatever the result of the meeting, Charles A. Mohan Jr., executive director of the United Mitochondrial Disease Foundation, a nonprofit research and educational group, said he was delighted by the attention being brought to the disease. Mr. Mohan?s daughter died of the disease when she was 15 after years of worsening seizures.

?We?re hoping the result of this meeting is at least the realization that more money is needed for research to connect these dots,? Mr. Mohan said.