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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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Dr. Trotti Answers Questions on Diagnostics Relating to Hypersomnia

Dr. Lynn Marie Trotti answers questions about diagnostics relating to hypersomnia and concludes…

Q – What is the “gold-standard” for diagnosis of narcolepsy?  What about IH?

A – For narcolepsy type 1 (or narcolepsy with cataplexy), measurement of hypocretin levels in cerebrospinal fluid is the most specific, most definitive diagnostic test available.  It is a true “gold-standard” in that it measures the problem that is causing the symptoms (that is, patients with narcolepsy type 1 have symptoms because their brain can no longer produce hypocretin).  However, this requires a lumbar puncture, and not all sleep physicians perform this procedure.  Furthermore, clinical testing of hypocretin levels is not commercially available.  In contrast, the multiple sleep latency test (MSLT) is a widely available test.  Over time, MSLT diagnostic cut-offs have been changed to improve the ability of the MSLT to correctly diagnose cases of narcolepsy with cataplexy, and so this is the most widely used test for narcolepsy.  

Although diagnostic criteria for narcolepsy without cataplexy require a multiple sleep latency test and diagnostic criteria for IH can include results from a multiple sleep latency test, research suggests that the MSLT may not be ideal for diagnosing these conditions.  However, an optimal diagnostic test to replace the MSLT has not yet been developed and validated.

Q – Why is an 8-minute cut-off of mean sleep latency used for diagnosing Idiopathic Hypersomnia on the MSLT?

A – The use of an 8-minute sleep latency was an consensus decision made by the authors of the American Academy of Sleep Medicine’s International Classification of Sleep Disorders (ICSD).  In the 2001 revision to the original ICSD, a mean sleep latency less than 10 minutes was reported as typically present in patients with IH but was not a mandatory part of the diagnosis.  

However, by the time of the 2005 publication of the second edition (ICSD-2), this had been shortened to 8 minutes (and the 8 minute cut-off remains as one potential diagnostic criteria for IH in the current ICSD-3).  The authors of the ICSD-2 decided to use an 8 minute cutoff “to define sleepiness for diagnostic purposes” based on the fact that this cutoff appeared to be the best cutoff for diagnosing narcolepsy.  The underlying assumption they made was that an 8 minute cutoff should work well for IH diagnosis if it worked well for narcolepsy diagnosis.  

At the same time, however, they cited data that the average mean sleep latency in IH patients was 6.2 minutes, with a standard deviation of 3.0 minutes.  This implies that NOT all patients with IH have a mean sleep latency less than 8 minutes.  The apparent discrepancy between these two ideas was not explicitly addressed in the ICSD-2, although the authors did state in the text accompanying the diagnostic criteria that the mean sleep latency is “usually” less than 8 minutes in IH, and that sometimes additional diagnostic testing would be needed.  

This became more explicit in the ICSD-3, which now allows documentation of long sleep times to establish a diagnosis of IH in patients with a mean sleep latency > 8 minutes.  Whether the revised criteria are fully optimized for the diagnosis of IH remains to be determined.

Posted in: Hypersomnia, SomnusNooze

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Research is Critical and Ongoing

YOU COUNT!

Time to update CoRDS information!

Please make time to log into the CoRDS online portal and keep all of your information up to date. Not only is it important to keep your information up to date in case researchers would like CoRDS to contact you, but it also helps potential researchers monitor the progression of rare diseases and rare disorders.

Every bit of information you can share, and keep updated, helps the rare community move one step toward solving the puzzle both now and in the future.

Visit http://www.sanfordresearch.org/cords/ and click “Update Your Registry” on the left side of the page.

Read the full annual update reminder here: CoRDS Annual Update Reminder

Posted in: CoRDS Registry, Research, SomnusNooze

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BeyondSleepy in Boston 2017 a Success!

Saturday’s social gatherings kicked off with the Old Town Trolley Ride and ended the day with a casual Meet and Greet.  “This is the first time in my life I have ever met anyone else with hypersomnia let alone be able to sit and talk to them and share stories.  This has truly been life changing for me,” said one attendee.

 

Sunday’s HF Conference (#HFconf) welcomed all attendees and livestream viewers, both national and international.  The “Advocacy and Empowerment” theme presented through each speaker, addressed the various challenges for people with hypersomnia. One comment post-conference comment, “Thank you for your hard work.  I spent (many years) hiding my condition from the world and friends.  It was so difficult pretending.  Now I don’t have to.”

Our June 4th “Advocacy and Empowerment” conference video (unedited) is now available for a limited time on our YouTube channel, in 2 parts. #beyondsleepy #HFconf

https://m.youtube.com/channel/UCQyK93W4lilnzyVKeadzoug

 

We are sincerely grateful to our 2017 Boston conference sponsors.  Thanks to their support we were able, once again, to livestream as well as professionally record audio/video of this conference.  On behalf of the entire hypersomnia community we wish to thank Balance Therapeutics, Pavilion Compounding Pharmacy, Village Pharmacy of Lynnfield, and E. Matthew Steinberg, AIF – Oppenheimer.  

Posted in: Conference, Hypersomnia, SomnusNooze

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Dr. Lynn Marie Trotti Presents at AAN Annual Meeting

AAN is the American Academy of Neurology and the meeting was held in Boston, MA, April 22-28, 2017. The AAN Annual Meeting is the world’s largest gathering of neurologists, bringing together more than 10,000 neurology professionals across the globe, to network, discuss cutting-edge research, and take part in top-rated education programming across a wide variety of topics.

 

Dr. Lynn Marie Trotti gave two talks related to hypersomnia at the AAN meeting:

Narcolepsy and Hypersomnia Cases for the General Neurologist”, in a session called “Approaching the Management of Common Sleep Disorders: Case-based Review for the Non-sleep Specialist”

“Stuck in the MSLT: Challenges in Diagnosing and Treating the Other Central Disorders of Hypersomnolence”, “Sleep for the Practicing Neurologist I: Is it Narcolepsy or Something Else? Diagnostic and Management Challenges in the Central Disorders of Hypersomnolence”

 

Both are designed for neurologists who are not sleep specialists but who may encounter patients with hypersomnia.

Posted in: Conference, News, Press Coverage, Research, SomnusNooze

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