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Archive for 'idiopathic hypersomna'

A Soothing Balm: Healing a Painful Experience

I want to add a postscript to my Personal Journey story that appeared in the July 2017 edition of the HF’s SomnusNooze. Karen BergerIt relates to the traumatic experiences I had due to my idiopathic hypersomnia and being hospitalized. Because of the letter I wrote and sent to the hospital where I had surgery, a care process is being developed for people who are hospitalized with hypersomnia. Amazing! I still get tears of joy when I think of it.

I feel compelled to share with the hypersomnia community the follow-up letter that I sent to the administrative staff at the hospital. I especially want others diagnosed with hypersomnia to know that speaking up and sharing our stories can have a very powerful, positive impact. Our stories serve to help others understand our challenges living with the symptoms of hypersomnia.

Dear XXXXXX,

I want to share how grateful and thankful I am for your response to my letter about my hospital stay at XXXX last November. Receiving the phone call from you and the subsequent letter from XXXX has felt like a soothing balm has been poured over a very painful area of my life; this experience has been incredibly healing. I have shed many tears of joy recently.

Moving from being very confused about the trauma I felt, to finally understanding it, was very difficult work, especially because I was dealing with so many other medical issues as well my idiopathic hypersomnia. Sending the letter to the hospital was difficult as I felt extremely vulnerable; I had no idea of how the hospital would react. Therefore, having the additional closure of knowing the hospital understands what I experienced is absolutely amazing. I do not have adequate words to describe how this feels. Knowing that XXXX Hospital is actually formulating some sort of care plan for when people with hypersomnia arrive at the hospital is exactly what I hoped would happen; I am so thrilled that this is actually happening.

The hospital’s response is even more precious to me because I recognize that that hospital staff conducted a serious, in-depth examination of the issues involved. This response was not a knee-jerk reaction to my letter. I suspect that someone probably examined my hospital records to see if there was evidence noted about the issues I talked about. I know that you talked to all my doctors; I was able to talk to Dr. XXXX briefly about the situation, and she assured me that a care plan was going to be worked on.

I shared my story with the Hypersomnia Foundation (HF) as well. In doing so, I realized that I described an issue that is much larger and more important than my individual experience at XXXX Hospital. Many in the hypersomnia community have not thought about issues relating to hospitalization and IH. As a result of my story being shared in the HF’s SomnusNooze, I have been told that there are many doctors and sleep researchers who now have a higher level of awareness of this issue. I now very seriously doubt that ANY hospital, ever, has identified a care process for people with hypersomnia. I have, however, through social media, connected with people with hypersomnia who have their own stories to tell about hospital visits. Here is the link to my story as presented there. Please note there are 2 articles:

http://www.hypersomniafoundation.org/share-your-journey-hospital-surgery-and-hypersomnia/

http://www.hypersomniafoundation.org/a-letter-to-my-health-care-system-about-hypersomnia/

I believe that your hospital, by choosing to address issues faced by those diagnosed with hypersomnia who are hospitalized, has now become a national leader among hospitals in dealing with patients who have this diagnosis. And for that, again, I am very grateful.

I want you to know that I am very willing to be involved and helpful in whatever way I can in the future.

Thank you,
Karen Berger

Posted in: Awareness, BeyondSleepy, Hypersomnia, idiopathic hypersomna, Share the Journey Stories, SomnusNooze

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Idiopathic Hypersomnia Standard Characteristics

It’s often a struggle to describe to others – sometimes to doctors – the essence of idiopathic hypersomnia.

Now, the Hypersomnia Foundation presents Idiopathic Hypersomnia Standard Characteristics. This one-page document, reviewed and approved by our Medical Advisory Board, summarizes the common characteristics of IH. We hope it will be helpful to the IH community – to read and to share with friends, families, physicians, and others.

Find it here: Idiopathic Hypersomnia Standard Characteristics

Posted in: Awareness, Hypersomnia, idiopathic hypersomna, SomnusNooze

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A LETTER TO MY HEALTH CARE SYSTEM ABOUT HYPERSOMNIA

BY: Karen Berger – MN-USA

I have had idiopathic hypersomnia (IH) since I was 15 and was finally diagnosed 11 years ago.  Since then I have been doing well on medication, although I still have ups and downs. But I can function. Last fall, I experienced severe abdominal pain and spent 12 days in the hospital, diagnosed with diverticulitis, sepsis, and pneumonia. I was very sick.  I had to have emergency surgery and during my stay in the hospital I was not medicated for my sleep disorder.

It has taken me months to unravel and process what happened during my hospital stay in November, 2016. I was inspired to write a letter to the patient advocate of the health system, and the doctors who treated me, describing my hospital experience. 

One problem with the first hospital visit was that there was no one to speak up for me when I could not.  But even if I had told them, the second problem was that I did not know how IH would express itself during my hospital stay, nor did I know about the problems with drug interactions. This is why I think hospitals need to have a way of flagging patients who appear with a hypersomnia diagnosis.

The following letter is a sample of one written to the hospital patient advocate, sleep doctors, primary doctor, general surgeon and hospitalists who treated me in the hospital because I felt it is very important for them to know what happened to me after surgery while in the hospital and during my post-op recovery.

 

Dear XXXXXXXXXXXXXXXXX,

I was hospitalized at XXXXXXXX Hospital from XXXXXXXX to XXXXXXXX, 2016.    I had wonderful care while at XXXXXXX.  Dr. XXXXXX is my hero for moving away from what I felt to be an unsafe situation, as well as doing an excellent job of saving my life.  The nurses cared for me really well, and I will always remember the soothing voice of the nurse when I woke up from surgery.  

However, while having major surgery would not be a pleasant experience for anyone, my experience at XXXXXX became emotionally traumatic.  I have idiopathic hypersomnia (IH), a sleep disorder that causes “sleep drunkenness,” excessive sleepiness, and varied levels of alertness, as well as anxiety, if not treated.   Of course, all these symptoms were present in full force while I was at XXXXXXX, as I was not taking my IH medication.  As I reflect upon my experience in the hospital, it was the additional interaction of the hypersomnia with everything else that was going on that turned my experience at XXXXXXX from a very unpleasant one to into a traumatic one.

I had never considered how a sleep disorder would affect a hospital stay.  While I was in XXXXXX, I was unable to process how it was affecting me.  It took me a while after I got home before I understood what had happened.  I am pretty sure everyone thought I was just really sick from the sepsis, which I was.  I recognize that there was no way for anyone to recognize the presence of the sleep disorder as a separate factor from the infection.  But I know how I feel when I am not on my medication, and thus, I was able to recognize the effects of the sleep disorder while in the hospital.  

While at XXXXXXX, there were several times that I felt trapped in my body, and totally unable to communicate.  I would go for hours in a state of barely being awake, and barely able to think.  I was having difficulty processing information; my friends noticed that I was really anxious because I working so hard trying to understand the surgery and other things that were going on.  I was reacting in panic to things that were happening elsewhere because I was not in control, and I was sobbing in my bed because I could not get help or figure out how things worked.   I was very agitated because I could not process things well, and I had several tearful conversations with the nurses.   I was being given instructions from the nurses, for example, to blow into the incentive spirometer, and I didn’t do it because I could not remember.   

Then there were the side effects to the medications I was being given.  The first one (to help with hot flashes) caused ocular migraines and insomnia, and then I was given a sleep drug to help me sleep.  I could not wake up the next day.  Thank goodness that I was able to get off the narcotic medication 2 days after surgery because my sleep doctor later told me that patients with idiopathic hypersomnia should not take a sleeping medication with a narcotic.  I was unable to communicate most of this to anybody while I was in the hospital.

I would like to propose a solution to prevent what happened to me from happening to others.  Obviously the primary consideration of the hospitalists and surgeons was to save my life, not to worry about my sleep disorder.  However, they need to be aware of the presence of this additional disorder when a patient presents themselves for care.  

What I would like to propose is this:

  1. When a patient comes in and has a diagnosis of some kind of hypersomnia an alert warning is activated. 
  2. Everyone treating a patient with hypersomnia would be informed that until the patient can be back on their medication(s) the symptoms associated with hypersomnia will be fully active.                   
  3. Even though the patient presents with another condition(s), special care must be taken with a patient having hypersomnia knowing that the patient cannot be assumed to be awake, competent, or remember anything until they are back on their medication(s).  
  4. An alert warning that medications may affect someone with a sleep disorder differently than expected with a list of known medications available.  
  5. The patient needs to be assured that the hospital is aware of their hypersomnia diagnosis and they are committed to take care and use precaution until the patient with IH can be back on their medication(s).  (I think had I been told that the nurses and doctors recognized that I had a sleep disorder, and that they understood the symptoms, it would have made all the difference in the world).  

I know that other patients with hypersomnia will be very grateful if, in the future, their unique needs are recognized as a part of their care while in the hospital.  I hope this will be informative and helpful so that a process can be developed for people with hypersomnia while in hospital.

 

Thank you,

Karen Berger

 

Posted in: Hypersomnia, idiopathic hypersomna, Share the Journey Stories, SomnusNooze

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SHARE YOUR JOURNEY

Your Story Matters

Everyone has a story to tell that will resonate, educate or motivate.

Coming to terms with having a rare, chronic condition can feel like a long and sometimes lonely process. Knowing others have walked a similar road as you, however, can help lessen the burden. Understanding another’s’ experiences, coping strategies, and challenges or successes can help people who are currently struggling.

A feature of the Hypersomnia Foundation’s SomnusNooze is the “Share Your Journey” segment—told from the perspective of a person with hypersomnia, a supporter, or healthcare professional. Will you share your struggles, triumphs, diagnostic journey, or coping strategies?

Sharing your journey is like extending a hand of support.

Did you find the words that made a doctor finally listen? Have you developed specific coping techniques that help at work, school or for social events? Do you recall how you felt when you realized that you are not alone in your struggles with the symptoms of hypersomnia; as a patient, supporter or healthcare professional? Possibly you identified a new career or hobby that maximize your potential.

footsteps 
Sharing a specific story or personal experience about living with hypersomnia can be extremely powerful and healing, not only for the storyteller but also for readers. Your journey may be the key to someone dealing with hypersomnia, or a family member or friend, to say, “That could be me!” “I’m not just lazy!” “He’s/She’s telling my story!” “He/She gets exactly what I’m feeling!” or “I finally understand what my child is going through.”

Please share your journey by submitting approximately 500 words, or a series of stories/experiences, and if you are inclined, a picture (not necessary but it does tell 1,000 words) through: 

http://www.hypersomniafoundation.org/understanding-hypersomnia/share-your-journey/

 

If you would like to submit a video to tell your story/experience please contact us at:

 info@hypersomniafoundation.org

 

Posted in: Hypersomnia, idiopathic hypersomna, Journey, Share the Journey Stories, SomnusNooze

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Arise Clinical Trial

CLINICAL TRIAL ENROLLING PATIENTS WITH IDIOPATHIC HYPERSOMNIA AND NARCOLEPSY TYPE 2

Arise Clinical StudyBalance Therapeutics is evaluating an investigational new drug BTD-001, to treat excessive daytime sleepiness in individuals diagnosed with Idiopathic Hypersomnia (IH) or Narcolepsy Type 2 (Na-2).  A Phase 2 clinical trial is currently enrolling Na-2 subjects at 26 investigational centers in the United States.  Individuals currently diagnosed as “IH” who may have previously been diagnosed as narcolepsy may also qualify.  For more information regarding the study and participating site locations, and if you are interested in participating in this trial, please visit the website: www.arisestudies.com

Background:

Recent research published by a research team from Emory University in Atlanta, Georgia has demonstrated that the excessive daytime sleepiness in many individuals diagnosed with Idiopathic Hypersomnia (IH) and Narcolepsy Type 2 (narcolepsy without cataplexy; Na-2) is driven by accumulation of a naturally occurring substance, yet to be identified, that increases the function of the sleep promoting neurotransmitter γ (gamma)-amino-butyric acid (i.e., GABA) in the brain. 

The investigational drug BTD-001 is known to suppress GABA activity.  BTD-001 is therefore targeted more directly at emerging mechanisms thought to cause the excessive sleepiness of many patients diagnosed with IH and Na-2.  It is also unique from current FDA approved therapeutic approaches for alleviating the excessive daytime sleepiness in   individuals diagnosed with IH and Na-2.

To learn more information about the clinical trial and see if you might qualify, please visit the website: arisestudies.com

 

arise

 

Posted in: Action, Hypersomnia, idiopathic hypersomna, narcolepsy, Research, SomnusNooze

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Share Your Journey | Hospital, Surgery, and Hypersomnia

MY PERSONAL JOURNEY: Hospital, Surgery, and Hypersomnia

I want to shHospital and IH Journeyare my story because a recent experience has had a profound impact on me.  I am still processing it, and I think it is something anyone with hypersomnia needs to think about.  I never had.  I have had idiopathic hypersomnia (IH) since I was 15 and was finally diagnosed 11 years ago.  Since then I have been doing well on medication, although I still have ups and downs. But I can function. Last fall, I experienced severe abdominal pain, and spent 12 days in the hospital, diagnosed with diverticulitis, sepsis, and pneumonia. I was very sick.  I had emergency surgery and needed a colostomy.  

During my stay in the hospital I was not medicated for the sleep disorder, nor was I given other usual medications.  Imagine the impact of being very sick plus having sleep drunkenness, and being in and out of various states of awareness. The hospital stay became a traumatic event for me.  There were times I felt trapped inside my body, unable to communicate.  I felt terror and fear because I felt very unsafe.  I experienced severe anxiety because I was trying so hard to follow instructions, and understand what was going on.  Nurses were giving me instructions that I was unable to follow.  My friends were concerned because they did not think I understood the instructions for going home.  I was overwhelmed learning to care for the colostomy.  I was given new medications, which caused insomnia and scrambled my body’s circadian rhythm.  Then to help me sleep, they gave me Ambien, which left me unable to wake up for an entire day.  When I came home, I had severe insomnia for months, and my sleep/wake cycle was severely disturbed.  I was terrified of having the takedown operation.  It took me months to process what had happened.  

By the time I saw the colon surgeon for the takedown procedure, I had figured out what had happened.  I was able to inform her very clearly of my diagnosis of idiopathic hypersomnia, and how I function when I am not medicated.  I told all my friends about my sleep disorder.  Things went much better for the second surgery.  I was back on my medication the day after surgery.  The problem I am having this time is that I have realized that I am hypersensitive to opioid painkillers. One side effect is insomnia, so I am struggling to get back on an even keel.  But overall the experience was much better.

Doctors in the hospital do not understand hypersomnia, nor do they understand the impact of the treatments they are providing on a person with hypersomnia.  And who plans to spend 12 days in the hospital for an emergency visit that is out of their control?  

I have no idea of where to go with this, but sharing my story with other people who understand hypersomnia seems like a good place to start.  

Karen B – MN, USA

Posted in: Hypersomnia, idiopathic hypersomna, Journey, Share the Journey Stories, SomnusNooze

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Wing Chun and Hypersomnia

Earlier this year, I experienced a minor miracle. After a full day of traveling and running errands, I was completely drained. The next day was a big event, and anxiety was eating at me. Would I wake up in time, would I have enough energy to be sociable, or would sleep take the reins yet again? I was faced with the option to go to sleep right then and wake up even earlier than I had planned or to get some stuff out of the way before sleep and get up as late as possible for the full day ahead. I knew that in a couple of moments my body would take any choice out of the equation, but I was still sitting upright out of sheer stubbornness and determination.

I did not have the energy to do much more than stand at that moment, but I had so much to do before I could let myself succumb to sleep. Taking another step seemed out of the question, but I could move my arms, so I started an exercise that had become a part of my daily routine. My hands followed a series of movements that comprise the beginning stages of learning Wing Chun Kung Fu, affectionately called the form, and it was not draining me like every other movement seemed to do, so I kept going.

Halfway through, my eyes opened in shock. It felt like I was waking up—not some metaphor or random realization—but actually waking up. By the time I finished, I wing_chun_single_chi_gerkwas in shock because I found that I had energy that was so distant just five minutes earlier. And for the next hour, I was able to do everything I had to in preparation for the next day. When I was done, I, not my body, was the one to make the decision to go to sleep.

The implications of what I had just experienced had my mind racing. As long as I had enough energy to stand up and start the form, I could build the energy to do more. There are still times when standing is a big ask, but I was never able to wake myself up before.

In the past, whenever my doctors would suggest exercise to help combat my tiredness, I would be so puzzled. How could I possibly think of doing anything high energy when I barely have enough energy to walk down the steps to feed myself, when I have to budget every movement in order to get anything done. The mere idea of exercise just seemed like a waste of the little precious energy that I had. But at the same time, I missed the feeling of being active like I had been in the years before hypersomnia hit me.

This past February, I reached a point where I got fed up with not feeling in control of my body. Sleep has taken so many hours from my life, and I never got a say in the matter. More than that, it didn’t let me make the most of the short time that I was awake because it was always there to pull me back under if I didn’t fight. I yearned for something, anything, to make me feel like I was in control again. I had no clue what to try—anything with cardio was out of the question.

Then I found the perfect fit by accident, or fate if you believe in that kind of thing. The movie Ip Man popped up on my “watch it again” list on Netflix, and I had just enough energy to watch a movie with subtitles. With all that had been going through my head recently, I watched this martial arts flick in a whole new light. Where before I saw a great movie with amazing action scenes, I now looked more closely at the man who was being portrayed at the center of it all. Throughout the movie, Ip Man was very tranquil and thoughtful, even in the midst of the fighting scenes, which ran counter to my interpretation of martial arts. A thought crept into my head: if he can do this while he is calm, maybe I can learn it while I am tired.

The end credits rolled, and I wrote down the style of martial arts that Ip Man practiced and taught. Wing Chun. There had to be something about the style that fostered such a temperament, one that so matched mine (albeit out of necessity at times). I immediately began to look for places in my area that taught Wing Chun… after I watched more Ip Man movies. When I visited the Wing Chun school, my suspicions were confirmed. It is a discipline that in its nature could make me feel more in control of my body, and I would be able to learn and practice it with as much or as little intensity as my energy level permitted.

When I started, I had no idea that it would translate to fueling me with energy so directly and so powerfully. My experience just two months in is a testament to how much Wing Chun is going to affect my life. As long as I have the energy to stand up and start the form, I will have the energy to do what I need to do and what I want to do. It is as if I have been walking through life thirsty in my own personal drought, rationing my energy because I had so precious little, and suddenly I have found the tools to tap into a rich well I didn’t know was beneath my feet. All because of Wing Chun!

It is my selfish hope that reading this will help you find the tools to tap into the same well of energy that I have. But no matter what, I wish you wakefulness.

Olivia Robbins, Maplewood, New Jersey

Posted in: idiopathic hypersomna, Journey

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Flumazenil for the Treatment of Refractory Hypersomnolence

Background

In 2012, researchers from Emory University published a paper on their finding of a substance that increases the effectiveness of GABA in people with central disorders of hypersomnolence, particularly idiopathic hypersomnia. In that paper, they discussed their findings in seven patients who were treated with flumazenil. In 2014, Kelty et al published a case report on the use of flumazenil given intravenously to a single patient for 96 hours and then implanted under the skin. The current paper from the group of Emory researchers includes information from additional patients who were treated with a compounded version of flumazenil.

What kind of a study was this?

This was a retrospective study, meaning that the researchers did not set out ahead of time to perform a research study with predetermined goals and questions. Instead, two neurologists prescribed the medication, flumazenil, as part of their routine practice to all appropriate patients who came to their clinic. Then, at a later date, they formulated their questions.

Who were the patients and what did they do?

One hundred fifty-three patients (92 women) were prescribed flumazenil by the physicians at Emory.
sleepy
Their average age was 35.5 years. All of the patients completed the Epworth Sleepiness Scale (ESS) before starting treatment with flumazenil, and some patients completed a second ESS after starting treatments.

Who were the researchers and what did they do?

Dr. Trotti and her colleagues at Emory University reviewed the charts of their patients with hypersomnolence for whom they had prescribed flumazenil. They also reviewed the patients’ electronic correspondence and pharmacy records.

What were the results of the study?

Ninety-six of the 153 (63%) patients reported that they were less sleepy after taking flumazenil. On the other hand, 19 people reported that they were more sleepy after taking flumazenil. Among these 19 patients, nine continued taking flumazenil because the increased sleepiness was only temporarily worse right away after taking the medication or the sleepiness improved after the flumazenil dose was changed.

Before starting treatment, the average ESS score was 15.1, even among those who were taking wake-promoting agents. After starting treatment with flumazenil, the average ESS score dropped to 10.3 among the 40 people who reported improved sleepiness and who completed a second ESS.

awakeOf the 96 patients who reported that their sleepiness improved in response to treatment with flumazenil, 59 continued to take the drug long term (average, 7.8 months at follow-up). Interestingly, 72% of women reported a positive response to the drug, whereas only 48% of men had a positive response. Similarly, people who reported having sleep inertia (difficulty waking up, including grogginess or disorientation immediately upon awakening) were more likely to respond to flumazenil, as compared with those without sleep inertia (72% vs 42%).

Seventy-nine participants (52%) reported experiencing an adverse event (the most common being dizziness, anxiety, and headache), with 17 people stopping the medicine because of adverse events. Two patients had serious adverse events, and another had changes in liver function tests that resolved after stopping the drug.

What were the researchers’ conclusions?

According to the authors of this study, “In summary, our clinical experience in a large group of patients with treatment-refractory hypersomnolence demonstrates meaningful and sustained clinical response in a substantial fraction of patients. Important questions remain about optimal formulation, dosing, long-term safety, and effectiveness. Prospective, controlled studies, ideally with measurement of plasma or cerebrospinal fluid flumazenil levels, are clearly needed. However, our experience suggests the possibility of clinical use of flumazenil in carefully selected, severely affected patients lacking other treatment options.”

Trotti LM, Saini P, Koola C, LaBarbera V, Bliwise DL, Rye DB.  Flumazenil for the treatment of refractory hypersomnolence. J Clin Sleep Med 2016;ePub ahead of print.

Posted in: Flumazenil, Hypersomnia, idiopathic hypersomna, Research

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The Blight on My Daughter’s Life

I gave birth to my daughter at 7:28 pm after 33 hours of labor. I was worn out, so I relinquished my baby to the care of the nurses within a couple hours to get some sleep. I didn’t see Cait again till 6:00 am. And, for the first year and a half of her life, if I put her down at 7:00 pm I knew I wouldn’t hear from her again till 8:00 the next morning. In retrospect, I wonder if it was an omen of what was to come.

Cait settled into normal sleep-wake patterns as a toddler. Toward the end of grade school, though, I remember that, if I took us out to dinner, she would invariably complain of being tired. I kept having to tell her not to lay her head on the table in restaurants.HPIM0292.JPG

Through her adolescence, I learned the hard way that it was best not to say anything to her early in the morning. “Not a morning person” was the understatement of the decade.

Cait completed her first bachelor’s degree on schedule and stayed on to get another BA and earn a teacher’s certificate, having settled on a career path late. It was during that program that the wheels came off. She lost motivation. Her sunny disposition disappeared. She earned the BA but couldn’t complete the certificate. After about 5 months living with a friend and making no headway with a job hunt, she moved in with her step-dad and me.

She landed a job. I thought she’d gotten her feet under her. But then she just tanked—spent all her time in bed except for when she had to work. It looked like depression to me. She found a counselor. Eventually she agreed to take antidepressants. Her mood lifted, but the fatigue didn’t go away. Her doctor checked her B-12 and her thyroid and screened for Lyme disease. She was sent for a sleep study and diagnosed with mild sleep apnea. She invested in a CPAP machine and used it faithfully. It didn’t help. She kept going back to the sleep study site asking why, and they would ask, “Do you meditate? Do you exercise? How much protein are you eating?”

Five months later, she thought she might have had a mini seizure. She was referred to a neurologist who happened to be a sleep specialist. The pre-appointment questionnaire drilled down on questions about sleep, and Cait answered them fervently. On her first visit, this doctor quickly resolved the question she came with and then said, “But I think you have another problem and it isn’t sleep apnea.” It was another month before a sleep study with MSLT confirmed it, but, when we did the Internet search that night, we knew he was right. Idiopathic Hypersomnia.

I hate this blight on my daughter’s life. I’m her alarm clock. I pack her lunch daily and make sure she has a good dinner every night. She doesn’t have energy for anything except her job. What kind of life is this? She’s planning now to move back to Illinois where she has a cadre of friends and a beloved church community within a 15-minute drive radius. I want her to have a life of her own, but I wonder, “Can she pull this off? Will she have the support she needs?” How I hate this blight on my daughter’s life!!

Ellen Swinford

Germantown, MD

Posted in: Awareness, idiopathic hypersomna, Journey, Share the Journey Stories

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Idiopathic Hypersomnia – A Turtle Going Uphill Through Molasses in January

Share the Journey Stories

Words escape me. I am a reader, a writer, and a highly educated woman with multiple degrees. Eloquence is high on my list of valued traits. Communication is one of my strengths, and something I’ve always been commended for. And yet, words escape me. I stutter, I stumble, I am tongue-tied. It’s like trying to grab water in your fist.

That is part of what it feels like to have brain fog, a symptom of multiple chronic illnesses, including my idiopathic hypersomnia. You can’t find the words you are looking for, even everyday words. But I am not stupid. I do not have a low vocabulary. I have a Bachelor of Arts in English; communicating in a clear and concise manner was something I was trained to do. But words escape me. Not just once in a while. All the time.

Brain fog is just one aspect of IH. It isn’t even the biggest aspect, nor the most important. However, it matters because how can you convey what it is like to have constant all-consuming fatigue if words escape you?

I would say that my fatigue is a “maelstrom,” or a “torrent” within and surrounding me, but the connotations of such descriptions bring up thoughts of fast and wild disasters. Fatigue is much more subtle and slow. It is not the quick death of a bullet to the brain. Fatigue is more like walking through thick, high mud. Like swimming through honey. Like drowning in an ocean. Like being in a bog, surrounded by impenetrable fog. Like a turtle going uphill through molasses in January. It is all of these things simultaneously. It is wearing a lead straitjacket while trying to escape drying cement. It is slow, and it eats you alive from the inside. It is the thick, heavy, slow, drained, helpless, hopeless feeling.

Imagine dealing with all of that, day in and day out. Now experience all of that while trying to be a competent part of society. Subtract caffeine. Add heart palpitations and a minimum nightly requirement of eleven hours of sleep. The hardest part of your day is waking up. The second hardest is getting out of bed. The third is staying awake. An eternal struggle. Stay awake. Be productive. Accomplish your tasks.

Imagine doing all your normal tasks (and they have to be done well and in a timely manner) when you haven’t slept in three days. Now imagine doing that every day. Can you? I can. Because that is what I do every day, because idiopathic hypersomnia means that I need a minimum of eleven hours of sleep in order to feel like I haven’t slept in two or three days. I cannot remember what it is like to feel refreshed, rejuvenated, and awake. It’s been years. I would, without hesitation, amputate an arm or a leg if that was the cure. Think about that.

Take all of that and tell me that fatigue isn’t debilitating. I dare you.

But you know what? No matter how many people read this, there are still going to be those that think fatigue isn’t debilitating. But life keeps going. So, just like that turtle, I will keep going, even if it is always uphill through molasses in January.

Caitlin Swinford
Germantown, MD

Posted in: Awareness, BeyondSleepy, Hypersomnia, idiopathic hypersomna, Journey, Share the Journey Stories, Social Media, SomnusNooze

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