Discovering That I Had the Non-24 Sleeping Disorder

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Empish at exhibit

The Beginning of Severe Sleeping Problems

In 2006 I began to have severe sleeping problems. For years I had always been a good sleeper. Going to bed at the same time each night and rising around the same time in the morning. Even taking a long nap during the day did not negatively impact my ability to get a good night sleep. But something shifted and I began a long and stressful battle with sleeping. At first I thought it was just stress from normal life challenges. My schedule at work had changed. I was doing sub contract writing work on the side. My roommate had just moved out. A romantic relationship had just ended. So I naturally thought that just the everyday things of life were causing me to not sleep well. But my lack of sleep persisted to the point I was not sleeping at all. Many nights I had difficulty falling asleep and would just lay in the bed for a very long time wide awake and feeling stressed. Other nights I would fall asleep with no problem but could not stay a sleep. I would wake up from the slightest noise or to go to the bathroom and then I could never get back to sleep. And lastly, other nights I just couldn't sleep at all and would literally stay up for 24 hours.

Diagnosed with Sleep Apnea

Empish sitting up on couch yawning

At first I tried over-the-counter sleep aids. I tried nature relaxation CDs. I tried drinking warm teas and taking warm baths. But none of these remedies worked. I realized that something was majorly wrong with me and that I needed to seek medical attention. I first went to see my primary care physician and he immediately thought I had sleep apnea. He gave me a referral to a sleep doctor for follow up. When I saw the sleep doctor she agreed with my PCP and scheduled me for a sleep test. This meant that I had to spend the night in a lab while they monitored my sleeping. I had to come to the lab in the late evening, change into my pajamas and wear monitoring devices all over my body. They not only monitored my sleeping, but my breathing, heart rate, any body movements and probably other things I can’t remember! When the results came back it showed that I had Sleep Apnea. I had episodes where I had woken up several times from lack of breathing.

CPAP Machine Not Working

My sleep doctor gave me a prescription for a CPAP machine where I had to strap this nozzle device under my nose where air would enter into my nasal passage from the machine. But this never worked and something in the back of my mind told me that this was not the cause of my severe sleeping problem. I shared this concerned with my sleep doctor but since the lab results showed Sleep Apnea there was not much she could say. I began to share my worries with friends, family and co-workers; expressing that the CPAP machine was not helping me. Some nights I felt worse after using the machine than before.

Discovering Sleeping Disorders and Blindness

At one point I came across some information on sleeping disorders and people with disabilities. I had never taken my blindness into consideration with my sleeping problems. A friend told me that since people who are totally blind can’t see sunlight, their bodies could not tell it was time for sleep. A local vision rehab center was doing a workshop for people with total blindness who were experiencing sleeping problems. I went and learned that my poor sleeping might be due to the fact I was totally blind and not to Sleep Apnea as originally thought. I began to do more research and Talk more with people about this. I even went back to my sleep doctor to discuss the possibility. She said that was something new that she was not aware of and would look into it. But in the meantime I continued unsuccessfully to use the CPAP machine.

Participating in a Clinical Trial

After multiple fits and starts, I gave up on the CPAP machine and just tried to do the best I could. I had become a bit depressed but also resolved that this just might be my life and to get over it. But a friend told me about a governmental clinical trial. They were looking for people who were totally blind, had no light perception and were having problems with sleeping. I said, “Well that sounds like me!” I contacted the researcher and signed up. For two years I provided saliva samples about once a month to the Oregon State University Sleep Lab. They analyzed my samples and discovered that my circadian sleep rhythm was all over the medical chart. I would be stable for a time and then I would move over to the left. Then I would be stable again for a time and then move all the way over to the right. Basically I was zigging and zagging all over the place. They found this interesting and asked me to sample more often and stay with the study a little longer. I agreed. At this point in my life I was feeling tired, depressed and desperate for a clear diagnosis of what was wrong with me. So I was willing to persevere to get to a solution. I also wore a sleep watch and provided any changes in my health, eating or exercise routines. I told my PCP about the clinical trial and that I had stopped using the CPAP machine. He ordered another sleep test and it was discovered that I really did not have Sleep Apnea after all. The lab results showed that I did not have enough breathing episodes to warrant the condition.

Finally Diagnosed with Non-24

Empish sleeping on a couch

At the end of the sampling, the researchers told me I had the non-24 hour sleep wake disorder. Non-24 is a serious, chronic circadian rhythm disorder that affects a large majority of people who are totally blind. They had discovered that my internal body clock had gotten off track and felt that it was due to the fact I was totally blind. At some point in those first years of poor sleeping, I must have lost all light perception which would explain why for years I had good quality sleep and then in 2006 things changed. They told me there was no cure but I could take very small amounts of melatonin an hour or two before going to bed. The important thing was to stay on a good sleep routine. I was saddened by the fact there was no cure but relieved that I had a diagnosis and some medication I could take to help me. I decided to make peace with my situation and just continue to do the best I could. I decided to not get stressed about it anymore. To not be depressed about it anymore. To sleep to the best of my ability.

Vanda Pharmaceuticals Develops Medication for Non-24

Then in 2010, I heard about the research that Vanda Pharmaceuticals was doing. They had contacted my employer, the Center for the Visually Impaired, looking for totally blind people that had problems sleeping. Sounds like me again! A co-worker and I had a meeting with a marketing representative and I shared my personal story. He was very familiar with the Oregon State University Sleep Lab. He said they were working on developing a medication that would help remedy this problem. Well, they did just that. This past January, Vanda Pharmaceuticals was given FDA approval for the drug call Hetlioz. I attended their presentation this past February at the AFB Leadership Conference where they talked about the medication and the efforts they are making to market the drug. I am excited about this new development and will be talking to my PCP soon about getting a prescription for it. It will be on the market this coming spring.

Let’s talk about It

Are you having problems with sleeping? Are you totally blind with no light perception? Have you heard about the non-24 sleep wake disorder? Have you heard about the new medication from Vanda Pharmaceuticals? Join the conversation and let’s chat about sleeping disorders and blindness.


Topics:
Personal Reflections
Medical Updates
There are currently 9 comments

Re: Discovering That I Had the Non-24 Sleeping Disorder



Thank you for this article. I lost my vision in 200 and I still have light perception. For the next two years or so I slept OK. I started to have a problems around 2002 and until now I can not sleep well. If I am getting 3 hours total of sleep- its great. I am tired and frustrated all the time. I tried everything what is on the market including herbs, music, relaxation technics and medications. Nothing works. I am looking forward into trying this new medication for non 24 hour disorder. Maybe this is going to be my salvation. There are days when I think that I can not carry on like this without sleep. I am really hopefull now.


Re: Discovering That I Had the Non-24 Sleeping Disorder



Hi Iplonka,
Thanks for posting your comment. It is good to know that you are not alone and that there are others, like myself, having a similar experience. I am also hopeful about the medication. I have already called the education help line for Vanda to get registered so that my doctor can be contacted. I have an appointment soon and will be having a follow up discussion with him about it.

I think the biggest thing was relief when I discovered that I had non-24. That I was not just going through a hard time but that there was a medical reason for my poor sleeping. People don’t always understand why you can’t just go to sleep. And sometimes you can’t understand it yourself. It seems like such a simple thing. Sometimes it is hard to explain. But with the new information that is coming out more people are being educated and will now get the help they need. Including the both of us! Smile.



Re: Discovering That I Had the Non-24 Sleeping Disorder



fish


Re: Discovering That I Had the Non-24 Sleeping Disorder



Thank you for this post.

I have non-24 sleeping disorder too. I have had it since I lost all vision 30 years ago. Before that I had very good sleeping habits too. I am sort of lucky because I generally can sleep about 7 hours in a 24 hour period, but I can't always get it all at the same time. The medication could be very good. I do have two concerns. 1. How much will it cost? and 2. Does it have side effects? And if so, what are they?

Sylvie Kashdan


Re: Discovering That I Had the Non-24 Sleeping Disorder



Hi Empish, I was tested during the drug trials but not picked since they were focused on people who had trouble falling asleep. I wake up fifteen minutes earlier each day. Eventually, I am totally out of sync with my time zone! I haven't signed up for the medication but have gotten the materials for my doctor to review. There is apparently a program to cut the cost if you qualify for the subsidy. Since my type of non24 hour pattern isn't that severe, I am able to control it with the usual things like showering just before bed, a warm drink and putting my audio books on a fifteen minute sleep cycle to turnoff. Then I use relaxation techniques. At 65, I am more likely to experience some of the side effects of the drug. For now, I will hold off use unless it becomes more severe. Silvy, go to the website: http.www.hetlioz.com for more info. or call the company at 855-258-6289. For now, it isn't available at drugstores but will be available by mail if your doctor prescribes it. Regards, DeA


Re: Discovering That I Had the Non-24 Sleeping Disorder



I had never heard of this disorder, however, not too long after I became totally blind, I knew something was wrong with my sleeping patterns. I understand about depression and how it can make you want to feel like sleeping way too much, but this was different. About a year or so ago, I began to hear radio commercials about Non-24. Quite frankly, I thought the commercials sounded pathetic and you could hardly understand what the person was saying. I even heard some of the local talk radio personalities make fun of the commercials because they couldn't understand what the personwas saying. Anyway, after a while, the commercials got better and they began to use different people who spoke more clearly. I checked out the website that was mentioned in the commercials and found it to be just a site where you could make donations for the cause of researching Non-24. More Recently, I have heard the commercials begin to include a medication that would help Non-24 and even more recently, I do not hear the commercials at all.
Although I have never been officially diagnosed with Non-24, I am pretty sure that I have it. I take a melatonan every evening and that helps most of the time. I am pretty concerned with the side-effects that are mentioned on the advertisements for the new drug hetloiz - they sound pretty scary to me.
I am currently trying to re-enter the workforce, so I am concerned with how this issue will affect any work I will be doing. On sleepless days, I do not function very well at all.
I really appreciate this article. It speaks of the Non-24 issue in very plain, practicle, and even personal terms and that makes it understandable from both a practicle and medical perspective without be ing out of balance one way or the other.
Thanks for sharing this article and your personal experience with us.
"Al from So-Cal"


Re: Discovering That I Had the Non-24 Sleeping Disorder



Sylvie--to answer your question, here is some information from the Vanda website that may help you. I encourage you to call them and ask all of your questions including cost:
For more information about HETLIOZ™ call 1-844-HETLIOZ (1-844-438-5469).
Indication and Important Safety Information About HETLIOZ™
Indication
HETLIOZ™ is indicated for the treatment of Non-24-Hour Sleep-Wake Disorder (Non-24).
Important Safety Information
HETLIOZ™ may cause somnolence: After taking HETLIOZ™, patients should limit their activity to preparing for going to bed, because HETLIOZ™ can impair the performance of activities requiring complete mental alertness.
The most common adverse reactions (incidence >5% and at least twice as high on HETLIOZ™ than on placebo) were headache, increased alanine aminotransferase, nightmares or unusual dreams, upper respiratory or urinary tract infection. The risk of adverse reactions may be greater in elderly (>65 years) patients than younger patients because exposure to HETLIOZ™ is increased by approximately 2-fold compared with younger patients.
Use of HETLIOZ™ should be avoided in combination with fluvoxamine or other strong CYP1A2 inhibitors, because of a potentially large increase in exposure of HETLIOZ™, and a greater risk of adverse reactions. HETLIOZ™ should be avoided in combination with rifampin or other CYP3A4 inducers, because of a potentially large decrease in exposure of HETLIOZ™, with reduced efficacy.
There are no adequate and well-controlled studies of HETLIOZ™ in pregnant women. Based on animal data, HETLIOZ™ may cause fetal harm. HETLIOZ™ should be used during pregnancy only if the potential benefit justifies the potential risks. Caution should be exercised when HETLIOZ™ is administered to a nursing woman.
HETLIOZ™ has not been studied in patients with severe hepatic impairment and is not recommended in these patients.
Safety and effectiveness of HETLIOZ™ in pediatric patients have not been established.
Full HETLIOZ™ Prescribing Information can be found at: www.hetlioz.com


Re: Discovering That I Had the Non-24 Sleeping Disorder



Hi everyone,

Thanks for commenting on my post. Let me give you an update since writing this. I saw my sleep doctor about two weeks ago and he was very familiar with Non-24. He felt I was an excellent candidate for the medication and we completed the paperwork for the prescription. You have to get the medicine through a prescription portal and it is mailed to your home. My current insurance does not have prescription drug coverage but there are services available to help with the cost. I have already received a phone call verifying my insurance and they are working on a cost effective way for me to have the medicine.

Once I get the medication, my doctor and I have agreed to give it a try for three months. If I see no major improvement I will go back to my melatonin . So stay tuned. I am also subscribed to e-mail updates from the Non-24 website. You can learn more about it at www.non-24.com.


Re: Discovering That I Had the Non-24 Sleeping Disorder



Hi jrath1
I have been on Helleus since last summer and I have my good and bad days on it. It has not been a perfect situation for me either but for the most part it is still working well. I know that being consistent is the key; taking it at the same time each night and going to bed on time. I was also told that it can take from 3-6 months to fully work in your system. WhenI first started I had problems; but after a couple of months I started to feell much better.

I am not sure if any of the others who have commented prior are on the medication but you can go over to the Non-24 website. I use to be on the e-mail list and they would give testimonials. I know they offered to connect me to others who were on the medication for encouragement and support. Perhaps that might be a way to get some help for you as well?

Here is the website for non-24:
http://www.non-24.com/


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