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I Have the Sleep Disorder Hypersomnia

sleep disorder hypersomnia

Update: I have recently been diagnosed with narcolepsy instead of hypersomnia because I have cataplexy.  The treatment remains the same for both, it’s just a different diagnosis.  This diagnosis came when I switched doctors from a family care doctor to a neurologist.  Thankfully the neurologist suggested I try Ritalin because it has helped me tremendously.  I have less “fog” to sort through in my head and I’m more alert than before.  I wouldn’t say that I’m near normal but this is a great and new normal for me. 🙂  I’ve loved receiving emails and comments from those who have written me.  Even though this is an old post feel free to reach out if you have something to say.  I don’t know anyone locally who relates to the struggles have having a sleep disorder so it’s nice to occasionally chat with those who do!

Revealing myself through blogging is not something that comes easy for me.  Just take a look at my “about me” page, it barely says anything about me!  Sharing my experiences and ideas on this blog can be tricky.  There is a persistent voice in my head that warns me not to reveal too much about my personal life but do allow my readers to see the real me; the real Ashley, through my writing.  Did you catch that?  My name is Ashley…I bet not too many of you even knew that!  This is difficult but in the long run I know it will be worth it so I blog on.

Yesterday, I posted about a coupon for a free trial of the prescription drug Nuvigil.  I want to tell you how the drug Provigil changed my life {Nuvigil is the new name but same active ingredient and made by the same company}.

Like most high school students, I often fell asleep during class and had trouble concentrating on school work.  During my last two years of high school I fell asleep more often and I couldn’t control it.  My dad worked a night shift and drank more coffee than any person I’ve ever met so I tried to follow in his footsteps and up my coffee intake.  I would fall asleep within an hour of drinking a pot of coffee.  Energy drinks, soda, tea, nothing helped.

Okay, I know this will sound freaky but please don’t judge and just bare with me.  I began hallucinating.  I later learned that this happened as my brain started to enter dream sleep but my body was awake. I had awful, horrid hallucinations.  They seemed ridiculously real!  I don’t have the words to describe how miserable and hopeless I felt.  Have you ever seen the movie The Sixth Sense?  That was an every day occurrence for me.  Without going into too much detail I’ll tell you that in my hallucinations I saw dead people, people murdered, and the like.  After months of suffering I told my Mom about it and she would pray with me and for me.  It was nice to have someone to talk to but she didn’t know how to help.  I thought these people in my hallucinations were demons and I was petrified.  I wanted to talk to my pastor but I was too afraid of what he would think of me.  I guess I’ve always struggled with being honest about who I am.  Years later my husband found out that hallucinations were side effects from my sleeping disorder and  only appear when the disorder was developing.

College was difficult but thankfully by that time the hallucinations had stopped.  I tried drinking caffeinated beverages through the day but nothing kept the sleepiness and the lethargy at bay. I would have overslept my alarm if it weren’t for my roommates.

In class I would struggle to stay awake. My dreams would overlap my consciousness and my hand would keep taking notes that later made no sense at all.  I tried vitamins and herbal supplements to no avail.  I would often go back to my dorm and nap for hours, hoping to shake off the feeling of sleepiness. When my schedule allowed I would sleep through my afternoon nap right to the next morning. On my worst day, I slept for 20 hours.

Miraculously, I somehow managed to graduate without fully staying awake through one class lecture!  After college I thought the sleepiness would wear out.  After two weeks of sleeping fourteen hours each night my dad convinced me to go to a sleep specialist.  He had recently gone to the hospital for a sleep study when he was diagnosed with sleep apnea.  After a two-day sleep study the doctors determined that I have idiopathic hypersomnia. I finally had an answer to why I couldn’t stay awake and why I felt as though my brain was running in slow motion. It was a relief to have a name to a problem that had plagued me for so long. Looking back now, I realize I had those symptoms most of my life, but they began to get noticeably worse around the time I turned 15.

In the handful of years since my diagnosis, I’ve learned to live life on medication.  I’m being treated with Provigil and it has been relatively successfully, but there are times when it doesn’t work.  It’s hard to explain to employers, family or friends what to expect on those days, but it is nothing like what you may have seen on TV.

No two sleep disorder experience symptoms exactly the same, but for me two symptoms follow me during the day. The first is a feeling of general fatigue. If you have ever had mono or pulled an all-nighter, then you have an idea of what this feels like.  It never leaves, ever.  It is like seeing everything through a fog.  Usually by the time I have figured out what someone said and processed my response, the conversation has moved on. It’s as if my body, and particularly my mind, is running in slow motion while the rest of the world is running at normal speed. The second symptom, and the part that most people are more familiar with is the sleeping spells. Unlike what you’ve seen on TV or in movies, I haven’t fallen asleep in the middle of a conversation or while walking, but I have fallen asleep in meetings and while standing.

I begin hallucinating as my brain starts to enter dream sleep, but my body remains awake.  I see things that aren’t happening and my thoughts become a tangled mess.  Though I’ve fallen over a few times generally my body stays put.  I get this irresistible urge to sleep!  I can remember driving down the road and wishing I would quit fighting sleep, lose control, and crash into the guard rail all so I could finally shut my eyes and sleep.

While taking medication, my days without the spontaneous sleeping spells outnumber my days with them.  Without medication it is unsafe to drive and I am largely unable to function normally.  I couldn’t do what I do without my prescription Progivil and I am very thankful for it!

I’m telling everyone about my story in case there is someone out there struggling with daytime sleepiness on a regular basis.  There is hope out there.  Medicine won’t cure a neurological sleeping disorder but it will vastly improve your quality of life.  If you’re suffering to stay awake every day, make an appointment and talk to your doctor.  You’ll be glad you did!

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About Ashley

Ashley is very happily married and the mother to a beautiful little girl, and she is the main voice behind Embracing Beauty.

Comments

  1. Abby Winstead says:

    Thank you so much for sharing this! I was diagnosed with idiopathic hypersomnia almost three years ago, during my senior year in college. It was great to finally have a name for the fatigue I’d been experiencing for more than seven years, but it was also frustrating to be given a diagnosis that didn’t come with more clear annswers. I, too, was prescribed Nuvigil, but because I’ve spent the last two years either pregnant or nursing (I’m currently pregnant), I’ve been unable to see if it will help me. I’m looking forward to the day when I can take Nuvigil on a regular basis.

    • Congratulations on being pregnant!!! I am Not telling you to take the medication while pregnant but I’ll tell you that I did. I spoke with 4 doctors about it and had lengthy conversations with Cephalon (Nuvigil and Provigil’s parent company) and they all agreed that it was in my and my baby’s best interest to take it. However, breast feeding was out of the question. My doctor said it was okay but upon studying the type of medicine and how it flows quickly into the bloodstream, etc. etc. a high dose of it would be delivered to my baby and I couldn’t do that. Again, I’m not telling you to take it but in case the sleepiness gets unbearable, it’s worth talking to your doctor about.

      It’s so nice to know that others have experienced/are experiencing what I am. I really appreciate you sharing!

  2. Rachel Runyan says:

    Thank you for sharing your story. I also have hypersomnia and Sleep Apnea, among many, many other conditions. I love Nuvigil! My only problem is that I also have gastroparesis and it causes the medicine to start breaking down later/slower than expected. They other day I had a 4 hour delay from when I took the medicine and started to feel relief. Do you also go through periods of nighttime insomnia? My Adrenal Glands are not working and that is why my body doesn’t seem to know when it is time to sleep and when I should be awake. Best of Luck to You!

    • Wow, 4 hours is a long time for it to kick in! I’ve read that nighttime insomnia is a symptom of hypersomnia but thankfully, I’ve only experienced it a handful of times.

      I’m not sure if you’ll be able to use the coupon since it won’t be a new prescription for you but when you sign up to get the coupon you’ll also receive a Prescription Co-pay Card that can help you have a co-pay as low as $5 on future prescriptions of Nuvigil. I don’t know what your insurance is but I know this medicine can be very expensive. Here’s the info on getting the coupon and co-pay card http://embracingbeauty.com/2012/02/09/try-nuvigil-for-free-value-up-to-50/

      Best of luck to you too! 🙂

      • Rachel Runyan says:

        Thank you! I understand the hallucinating thing. I don’t really have hallucinations, but I have conversations in between dreaming and awake. My husband says I can say the craziest things. I know how weird it is to try and figure out what is dream and what is truth. I hate that feeling.

  3. CouponCornerCori says:

    WOW! Your story sounds similar to mine only I was recently diagnosed with sleep apnea. I know what you mean about feeling exhausted ALL THE TIME. I get my CPAP machine tomorrow so I am hoping to have my first good night sleep in YEARS. But I will be looking into the medicine, too, if I am still tired so thank you for sharing your struggles.

    • I hope your CPAP helps and you don’t need the medication but it’s a good option if it doesn’t completely cure the sleepiness. Thank you for sharing!

  4. Jennifer Clay says:

    Thanks for sharing your story.

  5. DeadbutAlive says:

    Thank you for sharing. I TOTALLY relate. I am glad Nuvigil works for you. I tried Provigil more than once and it makes me feel like a zombie-going through the motions of life without any feelings.I’ve been on Adderal which has been a lifesaver for about 10 years. However in the last 2 years it doesn’t work as well. It has changed my personality. I never used to have anger issues but now I do – to the point of a crazy rage sometimes. That is not me. I must find something else. Ritalin makes me jittery. I supplement with Pregnenelone which works in the same part of the brain controlling sleep and it helps some. I take sublingual B-12 30,000 mg a day too. Anyone know of anything else? Thanks

    • I actually haven’t tried Nuvigil yet but only Provigil. Progivil’s time is up and generics can now be created so I was assuming that’s why Nuvigil was introduced this year…to keep up costs. I assumed they were very similar but it might not hurt to print the coupon and talk to your doctor about trying Nuvigil. Here’s a link to the coupon – http://embracingbeauty.com/2012/02/09/try-nuvigil-for-free-value-up-to-50/

      As I said above I’ve tried a variety of supplements but nothing helped me but hopefully another reader will have an idea that could help you. Thank you for sharing, it is so comforting to know that other people can relate! Best of luck to you!

  6. thanks for sharing. I have idiopathic hypersomnia. everyones is a little different. i feel a dark presence in the room but i am unable to move or open my eyes or breathe. this happens sometimes 20 times a night or 1 time a week. i have to really keep calm so i can try and breathe if i get too scared i cant. i never told anyone for fear of people thinking i was crazy. i found a sleep doc that did a sleep study on me and i went into sleep paralysis twice out of the 5 sessions so he was able to catch it. he gave me adderol and nuvigil to help with being tired and zoloft for the sleep paralysis. good luck to you i know its scary even though i have never seen anything i still feel it and that is scary enough for me.

    • AshleyWalkup says:

      Oh, sleep paralysis does seem scary to me too! I’m glad you found some medicine that is working well for you!

  7. Vcampfield says:

    thank you for sharing. I was diagnosed last year with narcolepsy, but after nuvigil isnt working and Im still tired, my dr is thinking its hypersomnia instead. I completely understand the hallucinations!!! ive gone to the extent of (when I was about 12) standing up talking to the person telling them to leave and even now (im 25) ive seen THINGS by my bed and jumped over my fiance’ to the other side of the room to get away from whatever it was at that time. Now I face the challenge of being pregnant and not being able to be on medications…. any tips?

    • AshleyWalkup says:

      I’m pretty sure I emailed a reply to you a few years ago even though I didn’t leave a comment here. Since this post is pretty popular I wanted to answer you here in case others may have the same question.

      What to do when you’re pregnant and falling asleep all the time? *Please note that I’m not a doctor and I’m not recommending this but I’m just sharing what I did. Please talk with your doctor and make your own decision.* I, along with my family doctor and obgyn, decided that it was best for me to continue taking Provigil than to stop. I realize it’s a Class C drug which carries a risk to the developing baby. Personally, without medicine I’m at risk for falling asleep while walking down steps, while cooking, etc. Not to mention I wouldn’t be able to drive for 9 months and would have the strong desire to sleep 24/7…which probably wouldn’t be good for me or the baby either. I took the risk and prayed a lot for a healthy baby! I avoided all caffeine, lunch meat, etc. even though you’re allowed so much caffeine a day and lunch meat once it reaches a certain temperature. I cut out every tiny risk I could since I was taking such a big one with this medicine.

      I’m beyond happy to say that both of my babies are healthy! As much as I would have loved to have breastfed (and my pediatrician even said it was okay to do so…because she didn’t know the medicine) I did my research and decided not to. I didn’t see a reason to give my baby a more concentrated dose of the medicine after birth when there was a suitable alternative.

      Oh, also, I got in contact with the makers of Provigil and allowed them access to my doctor’s records. They can’t do a clinical study on pregnant ladies, as there are obvious moral issues with that, but I wanted to make my information available in case others went to them looking for past experiences…as I did.

      If you have any other questions feel free to email me! I’d also love to hear how your pregnancy went and how your little one is doing. 🙂

      • Hi, I was diagnosed with idiopathic hypersomnia several years ago and with medication and established routines I’m able to stay awake throughout the day, driving, etc.. It’s the mornings that still remain a struggle at times. I’ve slept through alarms my entire life, and have always had to rely on others to wake me in the mornings, which can be a lengthy and daunting process for my husband on the bad days where pulling me out of sleep is a huge challenge. I noticed you said you have children, and at 31, I’m desperately ready to become a mother, but my husbands biggest fear is that I’ll fall asleep and not wake up when the baby is crying. Were you able to wake when your babies cried during the night?

        • That’s a great question!! The first week or two I woke up every time. I think my adrenaline must have still been going strong. 🙂 After that, as my husband will attest, I didn’t/don’t wake up when the kid’s do. My husband was great about taking turns and honestly doing a lot of the night time feedings because he knew I needed to get all the rest I could to be functional through the day with the kids. If he wanted to keep sleeping he would have to wake me up first and then go back to sleep or else I wouldn’t hear them.

          Can I give advice that’s slightly off subject? I know parenting advice is never wanted but I was glad someone passed along this nugget of advice to me as a pregnant mom. The book BabyWise, although controversial, was a God-send to us. With it my babies slept through the night at 8 weeks (6 weeks with my daughter)! When sleep is a priority, I think it’s a good book to have!

        • Tiffany Tilley says:

          Hi Lauren. I know this was posted a few years ago but i stumbled across your comment and wanted to ask you some questions. I was diagnosed with idiopathic hypersomnia 2 years ago and my main fear is that one day when i have children that i wont be able to hear them cry. Have you had children? And if so, how are you with waking up? Thanks.

  8. thank you for this post.. ive been googling on how christians deal with this kind of sleep disorder.. besides telling people it is a sleep demon. i have a combo diagnosis of narcolepsy with cataplexy and idiotpathic hypersomnia.. a diagnosis that typically does not go hand in hand, but narcolepsy sufferers do not tend to have the sleep tendency of sleepy up to 22 hours a day.. my neuros are baffled.

    as for me, i am on provigil that i take at night at bedtime, so that by time it is time for me to get up, the meds will have kicked in and i am able to get up.. sleep paralysis, drunkenness and severe dizzy spells upon waking have subsided some.. i then take amphentamines in the morning to jump start myself..

    well meaning christian ministers have told me not to claim this thing.. that my faith isn’t strong if i claim my healing then not get healed.. so i am encouraged to see another christian blogger speaking on this thing.. any advice or biblical scripture you can give me.. would be greatly appreciated…

    • AshleyWalkup says:

      Thank you, Lisa, for commenting! I believe with all my heart that “claiming” or “not claiming” something will absolutely, 100%, every time, do nothing. Wishing and hoping doesn’t change things…as much as we might want it to sometimes. Talking with the One who can change things is much more effective than trying to do it ourselves “through” Him. If you’d like to discuss this further feel free to email me at MrsAshleyWalkup @gmail.com

      The first Bible passage that comes to mind is when the apostle Paul had a thorn in his side but God chose to leave it there and said, “My grace is sufficient for thee: for My strength is made perfect in weakness.” {2Co 12:1-21} God is all-powerful and could have easily removed it and Paul was probably the greatest missionary this world has ever seen. If all that kept him from being healed was his faith I believe he would have been healed of his infirmity. Paul said in verse 9, “Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.” If he had enough faith to trust God enough to glory in his thorn in the flesh then I believe he would have had enough faith to be healed…but that’s not always God’s plan.

      Take heart, this struggle with sleepiness isn’t due to your lack of faith. God loves you and wants what’s best for you! You might not see it now but I bet when you get to the end of your life and look back you’ll see how His plan was at work all along.

  9. l-jyoung says:

    Ashley, I too have hypersomnia and recently have now been told I have gastroparesis also, I was wondering if you know how the two are related? I am confused as to if it could be a side effect of modafinil or if due to my metabolism slowing down to stop due to sleeping so much? I am interested to hear your experience as there is no other medication I can go onto available in the UK for hypersomnia, I need to find out if it’s a side effect or not? It also like yourself causes me worry that I may inadvertently over doze on my medication as I can go over a week without movement! It’s causing me no end of problems and makes things 100times harder to manage! Hope your well and if you want to contact of directly my email is l-jyoung@hotmail.co.uk. In fact if anyone who suffers the same wants to exchange stories, worries, experiences please do contact me as I have no support groups or don’t even know anyone like me with this condition. Sometimes I think I’m alone with this and just wish I had someone else who knew exactly what it feels like to live with such difficult restrictions.

    • AshleyWalkup says:

      Hi,

      I feel like I emailed you but I can’t quite remember so to be sure I’ll answer your question here. I don’t know if the two are related but I do know that I haven’t had that as a side effect. You could try Googling it or looking it up on WebMD.

      It’s been a while since you left this comment so how are you doing now? Have you found something that works well for you?

  10. Hi Ashley! My 9 year old daughter was diagnosed over the summer with idiopathic hypersomnia. We have definitely been on a challenging road! She has been through 4 sleep studies, and has seen so many doctors i lost count. She was initially diagnosed with sleep apnea at age 6 and placed on a cpap (with a pressure of 10 (yikes). I didn’t see any change in her daytime sleepiness with the cpap. My husband and I took her off the machine after about 6 months. We have since put her back on a cpap (since school started in Aug and with a pressure of 5), but have not seen any significant improvement. We have worked out with the school for her to take naps in the closet…hey whatever works! She misses anywhere from 3 to 7 hours a week b/c she naps. Her grades are reflecting!

    I have been approached by the principal to put her on the prescribed stimulant Adderall. I’m hesitate to do so but I’m so frustrated and baffled with her sleep pattern. She is just so tired WHEN she’s gotta sit still. I understand the schools views. They see what appears to be a “normal” child who can run, play, and even score a spot on the dance team. However, when she has to sit and pay attention, she goes to sleep.

    I know you went through the sleepy phase in high school, but did you have burst of energy? Our daughter seems so okay when she is playing but if she sits still she’s like a zombie. Homework is a nightmare daily. What should take 15-20 mins takes 1-2 hrs. Please let me know if you have/had sporadic bursts of energy!

    Thanks,
    Rose

    • AshleyWalkup says:

      I completely understand you hesitancy! It’s hard enough to make these medical decisions for myself, much less for someone else.

      I wouldn’t say that I get bursts of energy. Ever. But I do fall asleep less when I’m active. Sitting still is a sure fire way for me to go to sleep. I know that’s not encouraging but I hope it helps you know that your daughter isn’t alone.

      I hope whatever you’ve chosen is helping her. I’d love an update if you have time.

    • I am an Occupational Therapist. Can you ask your daughter’s school to provide occupational therapy for her? We can provide a ball for her to bounce on while sitting, numerous things to “fiddle” with to keep her awake while at the same time not being too disturbing to the rest of the class. I do not know if it will work all the time but any little bit…

  11. I have hypersomnia as well as adrenal fatigue and unbalanced neurotransmitters. I suggest some look into doing and adrenal test, sleep study, and neurotransmitter test. I have not tried nuvigil but have tried everything else and nothing has worked. I guess it’s time to take nuvigil. I’m 35 and have had this for as long as I can remember. Even wrote a song about it. http://youtu.be/gNqAJ3Vh9BE

    • AshleyWalkup says:

      How interesting! My husband is always writing songs so I’ll have to show this to him. I know he’ll appreciate it!

  12. I just started taking this today. I’m being tapered up to the full 150 mg dose for four days. Even though it’s the first day and at half a dose, I was surprised at how awake I felt during class (which is too early, 9 am, in the morning!). It kind of sucks that it took until graduate school (I’m 32 now) before I figured out I could get help with my sleepiness. I’m starting to feel really sleepy again, but for the times I wasn’t sleepy, I felt like I could focus and get a lot of work done. I’m going to be going in for a sleep study in a week so I should have more answers then. Anyways, thanks for posting your article. My doctor said that there’s no helping the fact that I need more sleep than others, and that I shouldn’t feel guilty. It’s nice to know that there are others out there who are dealing with hypersomnia successfully.

  13. This girl told my exact story except that I do fall asleep walking and talking sometimes… and provigil didn’t work for me.. I am so frustrated by this neurological disorder. I remember when I dropped out of high school,I fell asleep mid-sentence asking my teacher a question in front of the class. My teacher told me I needed to leave her class and go to the doctor because she thought I was narcoleptic. I ended up dropping out of school because I was living on my own at the time. Its been a struggle since I was really young. Now that I have insurance through my work I have had a bunch of tests done and I was diagnosed with Idiopathic Hypersomnia, and have been getting treated for it since. When I try a new medication my neurologist prescribes me, it works for maybe one day or at the most 2 weeks. Every time a medication stops working and I start falling asleep and have cognitive dysfunction again at work, I feel like giving up. It is something I wish I didn’t have and I wish there was more research and funding to help everyone who suffers from it. I recently even started falling asleep on the steps in the pool with my son. I am so sick of living with this. I am terrified of losing my wonderful job. When I feel like giving up I just have look at how far I have come in the last 8 months at my job(which is the longest I’ve ever held a job), and try to have enough strength and willingness to keep trying and moving forward with God and the doctors. I will have my first appointment with the Mayo Clinic Sleep Specialist on Monday, and I am praying that it well help put me on a better path with all of this. I figured I would share this because I am feeling really crappy today and struggling at work…

  14. Ashley,

    Thank you so much for posting this. I have suffered from this disorder for years. I am successful but it isn’t easy. I have been prescribed a stimulant and my body is finally adjusting and it is no longer working. I just moved to a new city for work and it has sent my body into shock and I can’t get back into the rhythm of things. I need to find a doctor but there is no one accepting new patients.

    It is just nice to know that I am not lazy, that this is real, and there are other people who are going through the same things and can understand what this can be like.

  15. lisa glass says:

    Living life in PJs
    Hello my sleepy friends. ill try to keep this short so everyone stays awake. I have NPH with aqueductal web
    and pigmentary glaucoma. i have recently been diagnosed with Hypersomnia. tried ritalin it worked for 3 days (less brain fog) and i was able to take my 6hr nap again. i can no longer take ritalin because it increases eye pressure which isn’t good for the glaucoma. Has anyone done things while their brain was asleep my son said i sat up and helped him with homework for 20 min then layed back down. also if i get woke up from that deep sleep it feels like my body is moving and awake but the brain is still half asleep.
    I have been like this for 7 years and just got diagnosed. i have found that physical activity keeps it at bay and for some reason yes walking aggravates it however riding a bike gives a burst of mental clarity and energy. I have learned to keep moving because if i sit still i will go to sleep.

  16. Thank you for your descriptions and your help. i have always een tires but recently began losing whole days to sleep. i kept thinking if I could just get enough sleep I would be OK. Now I know I need to see a doc.

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