Discussions By Condition: Rare Disases

Sleeping too much drastically affecting life

Posted In: Rare Disases 11 Replies
  • Posted By: Anonymous
  • June 12, 2007
  • 01:00 PM

I am a 17 year old homeschooled(I had to get in to homeschool cuz of health problems)(fell asleep in every class)
My sleep cycle is extreamly irregular. For example: I'll sleep for a few days straight then go a day and night with no sleep then next week . I'm always tired but sometimes I just can't sleep. I sleep a whole lot but its very irregular no pattern whatsoever (I know I had a sleep log). I have clinical depression and anxiety problems, it took awhile to find a drug that workedI'm now on (Zoloft). I can now stand to live at least, and I'm not so anxious like I used to be, they thought that would fix the sleeping, but it didn't. I feel better but I'm still sleeping like crazy. When I do sleep its practically uncontrolable. I get terrible headaches that won't go away till I sleep. I feel very confused all the time and I am slow to remember things, I didnt used to be like this, but this has been getting worse over the course of two years or three years; different problems will just pop up. I had many blood tests, I've had an endoscopy, barium swallow, EKG, . heres the list of my problems in order of how badly they affect my life:

*sleeping too much and irregularly
* I had to quit the Track team (I loved Track)due to weight loss which was caused by excessive vomiting when I run (I used to be an awesome runner this vomiting while running started happening in 10th grade and I was in PERFECT SHAPE when this problem popped up(I had been running for years w/out this problem)) so the outta shape reason didnt fit.
*confusion and memory problems
*bad headaches
*still have some problems with depression but much better
* random joint pain(like knee and hip and fingers)
* I feel like I'm going insane
* horrible chest pain (acid reflux I think)
*inablilty to concentrate

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11 Replies:

  • Hi, please get an EEG done asap to see if you are having seizures, an MRI of your brain and bloodwork to check for rare diseases. See a good Neurologist that works with rare disorders and will listen to you. NEVER give up!!! - I have been fighting this for 20 years and finally have found a neuro doc that did these tests and within 3 days I found out I am having seizures (headaches, sleeping all the time, insomnia at others, body pain, chest pain, nausea) along with Myasthenia Gravis, heart disease, heart arrythmia, and gene mutation causing blood clotting problems. Keep going until you get the answers you deserve!! Good luck.
    Anonymous 42789 Replies Flag this Response
  • Have you had a sleep study done? It sounds like, with your symptoms, that you have some type of sleep apnea.There are sleep clinics in most major cities. I recommend finding one which has a sleep study which is done overnight in their facility as opposed to one which you take home.
    Anonymous 42789 Replies Flag this Response
  • Hi. I found your posting very interesting. After having the same symptons for many years (as long as 15 yrs) that I can remember.(memory problems). My dr. finally set me up with a sleep study. I have sleep apnea and sleep with a CPAP machine at night. It takes a little getting used to it. Then my sleep dr did another test (because I would fall a sleep for most of the day) for narcolepsy. I have narcolepsy on top of the apnea. I was sleeping for most of 24 hrs. I am not kidding. So we set up a sleep schedule where I have to get up at 9am, go back to bed til 10am, try to stay awake til 6pm (8hrs) and then sleep from 6pm-9pm. I can take power naps during the 8 hrs.if I absolutely have to. Then I can stay up til 1am-2am. I do take meds between the 9am-10am. That's why I have to get up at 9am. I am on Provigil 600 mg and adderall XR 90mg. They say most people don't need nearly as much. But a lower dose does not meet my needs. So I would certainly look into a sleep study and I know I had to be referred by another dr. Good Luck-----I hope you find out soon, it is so frustrating.--------klschuphttp://smileys.smileycentral.com/cat/36/36_1_46.gifhttp://smileys.smileycentral.com/cat/36/36_1_46.gif
    klschup 42 Replies
    • January 27, 2008
    • 10:30 PM
    • 0
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  • hii would get checked for q-fever as i have the same problems after contracting it 3 years agoit can last for 20 years i am told with no known curemost cases come from a farming background as the disease is an airbourne virus from the urine of animals or during the calving of animalsjulian
    julian42 3 Replies
    • February 18, 2008
    • 08:45 AM
    • 0
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  • My best guess is that your running career might have you chronically dehydrated which has exacerbated one of its symptoms: fatigue. Sufferers of chronic fatigue can have irregular sleep patterns and increased depression like yours. The onset of your headaches, vomiting during running and lack of mental function (memory, depression) were more likely caused by chronic dehydration. I had the impression that your depression was present before your noticeable downfall; again, the dehydration could have exacerbated this condition. Even oversleeping alone could not have done all the same things. Dewey mentioned that seizures could be a possibility and I agree. It would explain the excessive vomiting during running. However, runners might vomit due to physical exertion – hence to constant episodes of dehydration making a way for the seizures each running exercise or meet.The truth is there are a zillion possibilities for what you are going through and treating the problem you had first or the most severe problems might provide you with some relief. A doctor might help but, I know the reason a lot of us are here is because of the opposite.How is your blood pressure? Are you exercising, at least moderately? How is your diet?
    Undeleted1 28 Replies
    • February 18, 2008
    • 01:35 PM
    • 0
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  • There are gains for all our losses. There are balms for all our pain: But when youth, the dream, departs It takes something from our hearts, And it never comes again. We are stronger, and are better, Under manhood's sterner reign: Still we feel that something sweet Followed youth, with flying feet, And will never come again. Something beautiful is vanished, And we sigh for it in vain; We behold it everywhere, On the earth, and in the air, But it never comes again!
    lozygo 5 Replies Flag this Response
  • This is weird. I was surfing around medical websites while researching a project for school and happened to read your post. I decided to pack it in for the evening and and sat down to watch the discovery health channel. Wouldn't you know the subject of the episode sounded very much like what you describe.Klein Levin Syndrome is a rare condition with symptoms similar to those you describe. Onset occurs in boys and girls around puberty. Uncontrollable prolonged sleep with confusion and feeling "out of it", alternating sleep episodes with periods of normalcy, and sometimes misdiagnosed as depression. There is no cure, but medication can help reduce the sleep tendencies and symptoms subside in over 90% of people in 5 to 10 years.Like I said, it's rare, but it is a legitimate condition that most physicians are not looking for.Maybe you can find a transcript of the Discovery Health episode I watched. Also , the doctor on this episode was a Dr. Devinsky at NYU. There are probably some published papers you can research or maybe contact NYU if your research lead you in that direction.Good Luck to You.
    Anonymous 42789 Replies Flag this Response
  • kiddo you sound just like I did at your age....first here's a link to thet Q-Fever, nasty bug that: http://www.cdc.gov/ncidod/dvrd/qfever/index.htmI went through high school feeling like something the cat dragged in: I slept a LOT, ran the gamut from Clinical Psychosis to ADD to Bi-Polar..if it's in the DSM I prolly carried it as a dignosis at one time or another ALL OF THEM WRONG as it turns out. I also had some rather nasty stamina issues that affected my Team Soccer and my Horse Shows. I was homeschooled for health the first half of sophmore year and missed so much time over the next 2 that I almost didn't graduate (attendance requirements). Add in the migraines that started almost at birth and we could be twins ;). It took another 10 years to figure out what I really had...Long Q-T Syndrome (LQTS, www.sads.org) is a nasty little heart condition: EKG and Cardiac Stress test to find it. Turns out I have a functional murmer tooJuvenile Absence Seizures (www.efa.org) knocked ADD out of the running; diagnosed after I turned up with Reflex Seizures in my 20'sNot 1, but THREE anemias: MTHFR genetic defect makes me low on Foic Acid (Folate) wich is linked to migraines and depression. Almost half the population of the planet has some form of this. I started taking 4mg (400mcg) of Folate each day and now I have more energy and barely get headaches (which I hardly notice anyway after all those years in dark rooms ;) ) #2 is classic Iron Anemia, and #3 is Transient Potassium Anemia as part of Andersen-Tawil Syndrome. ATS is a combo of LQTS and Periodic Paralysis and like everything else above is not something thats tested for unless there's a reason to test for it. And actually ATS is not a definitive diagnosis, it can only be considered after confirming LQTS and HKPP and ruling out other similar conditions. Info on HKPP can be found through MDA at http://www.mda.org/disease/PP.html . I also have Factor V Leiden (FVL/F5L) but they don't usually test for that unless you've had a history of miscarriages. It's a blood clotting disorder.2 heart conditions, 3 kinds of anemias, and a blood clotting disorder....talk about tired O_O I got on Potassium, Iron, Folate, and a pre-natal multi and within 6 weeks was off of depression meds and feeling like a new person.Now I really did have anxiety issues, actually I have PTSD. I always knew that what was wrong with me wasn't what others claimed was wrong, but waiting almost 15 years for a proper diagnosis took it's toll. Panic Attacks can have all kinds of physical symptoms including cheast pain that can mimic a heart attack. My folate helps keep me on an even keel so that plus counseling and I'm not any prescriptions other than allergy meds -- yeah allergies can make you sick and tired and sap your wind, too.Now your vomiting is not a good thing...there may be connection with the "heartburn" symptoms...it may even be GERD (yeah I have that too), but the only way to confirm that is not a fun one.Hope this helps!! Good Luck!!
    Anonymous 42789 Replies
    • January 6, 2009
    • 05:15 PM
    • 0
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  • Hyperparathyroidism {& multiple endocrine neoplasia,} look up this condition and see if the symptoms fit. Tests needed to be checked 3-4 times over a 4-5 week period to see if you have low or high Numbers. Calcium, parathyriod hormone, vitamin D, phosphorus. Vitamin Defiency can cause so much trouble. My problems started before I was 15 and ran track. Fatigue, headaches, sleep problems, bone pain. I am now 43 still having so many problems and now I have been told my {52} {normal 10-65} parathyroid hormone level is within normal limits {1st thing in the morning and it rises during the day.} my calcium is within normal limits { have not been told what it is } I have had spinal surgery after an accident- but was told on one of them that most people do ok without surgery but with excercise. I still had the surgery. Bone pain, I have a lot of health issues. My 22 year old son is diabetic and some of the symptoms fit him as well. Even the thyroid looking like swiss cheese. I wish you well.
    Anonymous 42789 Replies Flag this Response
  • Go to Primary and have him do a breath test (androgen, i think) to check for an infection in your small intestine....look it up as SIBO....small intestinal bacterial overgrowth....just got diagnosed been at least 20 yrs and 12 VERY sick and dying the last 1 1/2 years...can't eat anymore.....leaving for Mayo Tuesday...Good luck...something that is easy to check and one of the last that they check for.
    Anonymous 42789 Replies Flag this Response
  • The abnormal sleep patterns, confusion and headaches till you sleep sound very much like narcolepsy. I realize people think of narcolepsy as just sleeping too much but the truth is almost all narcoleptics have insomnia. Narcolepsy is actually a complete inability to regulate sleep patterns. So it leaves them very tired. The only thing that doesn't seem to match is the throwing up. However narcolepsy is an autoimmune disorder and where there is one, there may be more.
    Malome 2 Replies Flag this Response
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