• over 1 year ago

    Narcolepsy? Hypersomnia? I need help...

    As a teenager, I slept a lot. My family assumed it was normal. However, looking back, I would sleep 12-14 hours at times, never feeling rested.

    In my Early 20's.... I spent a lot of late nights partying and often didn't sleep but a few hours. For years, I equated my exhaustion with my life style.

    Now that I am in my 30's, I've become quite tame. I hardly drink alcohol and I entertain myself with house work. I have a great job and a wonderful wife. No kids and 3 cats.

    My exhaustion has never left. Several years ago - my "Sleep attacks" started. Typically it was after a heavy meal - especially a big bowl of pasta! soon afterwards, I visited a Gastro Doctor and found out that I had a Gluten intolerance. Removing the Gluten from my diet defiantly helped with my stomach issues but the Sleep attacks persisted and gradually got worse.

    For the last few years I started having trouble driving andfalling asleep. I would wake up and instantly feel the need to lay on the floor (in the shower) and take a nap. The morning lethargy was the worst for sure although it would sometimes effect me in the afternoon and more than not around 8 or 9 O'clock at night.

    After a 2 week run of falling asleep at the wheel daily, I went to a neurologist who diagnosed me with sleep apnea. I was given a APAP and Nuvigil for Daytime sleepiness. 6 months of APAP Theropy had shown significant progress in my sleep,although I still suffered from Lethargy and daytime exhaustion. There were a few days I forgot To take my Nuvigil in the morning and experienced terrifying Sleep attacks. One of the more recent was an episode of 5 different attacks with in a two hour span on my way to work. The others have included sleep attacks, a single Vivid hallucination and vision issues.

    As for hallucinations - I do not typically have vivid visual hallucinations - I typically see movement out of the corner of my eye. More than not my Hallucinations are auditory. I will hear my name called or a single word or music while I am falling asleep or having a sleep attack! This auditory hallucination will often cause me alarm and I will jump at the sound but my alertness quickly changes back to lethargy in seconds.

    When I do have visual hallucinations - they are Typically while falling asleep or awaking from a dream. Again this is rare and I have only recently experienced these visual hallucinations during daytime sleep attacks. Specifically the vivid one - where I saw a man crossing the road with a blue plaid shirt, holding a 2x6 under his arm going to check the mail... While I looked for him as not to hit him (I was driving), I believe what I saw was the side of a house. I realize this seems crazy and I really can't explain it.

    My Neurologist has asked me several times about Cataplexy and I don't believe I have experienced this. Then again, I am not one to be easily excited by laughter or anger. I have always been very even keel and laid back. However, I never mentioned this to my doctor but when I am dealing with a sleep attack, I feel like i could fall over. My head will nod and have a need to sit or lay down. I would compare the feeling to being up for days and finally standing in front of your bed. Is that lose of muscle control? I also notice that when I am in the midst of a sleep attack and trying to fight it, I feel a sudden jolt sensation - like a mild warm electrical current run through my arms, my hands and my upper torso. I just assumed that it was my body trying to keep me awake.

    In the evenings, I typically become so tired that it I lack the energy to even sit up. Sometimes, I slump over and often struggle to keep awake. I have noticed that in this state, I have trouble comprehending what someone is saying to me. I also have trouble stringing words together to answer or express myself to the person I am talking to. I often express this state of being as feeling drugged or drunk. My eyes cross and when I speak my words tend to be slightly slurred or not crisply pronounced. I often will replace words with other words that aren't even in the context of what I am talking about (i.e. while talking recently about a cabinet - I referred to the hinge as a "faucet") or I will tell my wife I am going to bed because I am "Sleep".

    I am scared to miss a dose of my medication. I typically take my medication in the morning and sit for a little while and wait for it to kick in before I leave for work. With my Medication (250 Mg Nuvigil) - Its not like being on a medication like Adderall or Concerta where I feel awake and energized. I still feel tired at times during the day but the sleep attacks (if any) are very mild and I don't ever need to worry about falling asleep behind the wheel.

    So here is my problem, I have no diagnosis. I was told that it could be Narcolepsy or Idiopathic Hypersomnia. Unfortunately, there is additional testing needed, Including a 2 day sleep study (or one night and one day). So at the moment, no one seems to know exactly why I experience what I do. I have read up on both and where I do see similarities in both - I don't feel that I am exactly 100% either.

    This is effecting my work and my home life. My wife has implied that I am lazy and all I need to do is get up and move around. My boss has seen some changes is the quality of work I put out. I love my wife more than anyone in the world and I have a great job. I have a good life and I am scared this issue I am dealing with could destroy it all.

    I NEED HELP! Is there anything I can do in the meantime that will help me feel more awake? The Nuvigil has been a god send - but in the morning I have to wait for it to kick in and in the evenings after work, I come home, do a few chores and then sit until I feel my condition start to take over - then I don't move from the couch.

    I currently don't exercise and haven't for about 3-4 years. I use to Workout religiously! People told me it would make me feel better. Except it never did... I always felt exhausted after working out at the gym. My wife tried waking me up in the morning and make me walk around the neighborhood but prior to my medication, it didn't help... I would still have sleep attacks while driving to work. I have a diet that primarily consists of Vegetables, the occasional chicken breast or fish, No gluten or processed foods, limited alcohol (and if I do have a drink it is some sort of vodka drink 1 or 2 oz) - very limited soda intake (1 can a month or less).

    I am 34 years old, Male and I weigh 172 lbs.

    Other Diagnosis that I have-

    Anxiety disorder (controlled with medication- although recently hasn't done a great job)
    Sleep apnea (controlled with APAP)
    Gluten Intolerance (controlled with diet)
    Pre-Hypertension (controlled with Diet - Typical blood pressure reading is 117-122 over 71-78)
    Trichotillomania and Dermatillomania (disorders probably related to my anxiety but have gotten worse over the past year)
    Attention Deficit Disorder (Not controlled since taking Nuvigil)

    Any insight or help on this issue would be great. I do have a sleep study coming up in January and I have been referred to John Hopkins Sleep Disorder Center but I am waiting to hear from my neurologist to see how to go about transitioning to another sleep center.

    I realize this all seems pretty bad (and it is) but I also feel that it is not as bad as it appears to be from this synopsis. These few paragraphs are so condensed and I have hit on the extremes of my condition. I Suffer every day but most are tolerable. I would even say hardly noticeable - It's the one day out of 10 or 20 that scares me half to death.

    Sorry to write a book but I feel the more information I can provide, the better advice I receive.

    Thanks to all who respond!


  • 8 days ago

    RE: Narcolepsy? Hypersomnia? I need help...

    I see that this post is over a year old... curious if there are any updates?

    I wish I had an answer... I'm in a similar boat. I went through the sleep studies and was devastated when they ruled out sleep apnea... at least that was something I could do something about! I've officially been diagnosed with idiopathic hypersomnia, which basically means no one knows why (and at this point the doctors are just "managing" it). I have a prescription for provigil, which helps me to stay awake (and is wonderful), but there's still that annoying brain fog that limits my ability to function, and if I don't sleep at least 9 hours a night, I get in trouble at work for not being able to keep up. My symptoms seem to be getting worse and worse over the years, so I'm doing some additional exploring on my own. I've tried cutting out certain foods, based on friends' suggestions, but nothing's helped. I try pushing myself, hoping to start building up some stamina, but I end up crashing.

    Just this weekend, I randomly stumbled across information about IBS that indicated that tiredness is a symptom, and that people with IBS sleep, on average, an hour more a night than people without. SO, I've been doing some research on "Low FODMAP Diet"... it's a longshot, but there may be something in a combination of foods that sucks the body's energy... I would really like to find a good dietition to talk to about this. I'm also looking at stress reduction/meditation. I'll let you know if I find anything... good luck.