Discussions By Condition: I cannot get a diagnosis.

sleep 18 hours per day, feel weak, 1 year now!

Posted In: I cannot get a diagnosis. 20 Replies
  • Posted By: janetk
  • April 9, 2007
  • 04:12 PM

My 18 year old son had a stomach virus (the GI doc) called it gasrtrparesis. The stomach problem went away but he now sleeps 18 hours per day (would sleep more if he could) but I insist he get up to pick up his brother from school. He is very weak and drained and looks very pale and fragile. He is 6'4 and lost 20 lbs and now is 225. This has happened for 1 year now and he is very frustrated and at wits end. He went to a shrink (the GI doc suggested) and he takes Lamictal and cymbalta (high doses) to try and break this depressiveness that he has plummetted to. He has high cholesterol (takes no meds for tho.. per card doc. He had an upper GI and has chronic Gerd- takes prevacid. He was tested for Epstein Barr = negative and mono = negative and had 2 stool checks= negative. He is a senior and WANTS to be better and stronger and more vibrant and actually have a life, but just cant get out of bed to live life... He did go to the beach for 3 days and walked and swam a bit but went right back to bed and was completely exhausted. I thought it would bring him around, but no.... He has no energy. He does take hi doses of vitamins and goes to the chiropractor once weekly and also started the acupuncture twice weekly. Very little progress has been made. What would anyone suggest. Lyme dx doesnt match the symptoms, but CFS does. HELP US PLEASE.. I am a frustrated mom.:mad:

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  • Sorry to hear about the situation. I am no medic, but I would insist that he has comprehensive blood tests and possibly hormonal ones too (eg.to check the adrenal glands) - even if you have to pay for these yourself privately. Has vitamin B12 deficiency been checked out ? Make this a priority. It is well worth checking (a friend friend of mine waited 1 year before this was diagnosed) and is often overlooked. Have all other digestive disorders been ruled out ? Does he have an allergy to something he eats? There are many tests and you should try to find out if he can have these. Also, don't discount chinese doctors..they know an awful lot and it would be good to at least see one for an opinion..they can tell from the skin and tongue etc what the cause is of many problems. Pick a recommended one though. There is nothng to lose. I myself often felt very tired until I used a chinese tonic called Rehmannia Six...its used by millions to gain energy. Also taking licorice with siberian ginseng works wonders. If you get hold of the powder forms of the herbs (sometimes in capsules), just empty into a cup of boiled water, stir, wait for 5 mins and drink as a tea...but 20 minutes after a main meal-never on an empty stomach. If this tastes too bad, just take capsules after meals. Don't bother with cooking raw herbs...its not necessary..just get powder form of herbs. Be careful never to exceed stated dosages and measure blood pressure constantly as herbs can affect it. I found accupuncture a waste of time. Lastly, don't just rely on the family doctor....you may need to invest money by seeing private practitioners.:)
    kentishman 19 Replies Flag this Response
  • Kentishman, thanks for the advice :) I appreciate you taking time out of your schedule to send some much appreciated words of encouragement and treatment options. I will definately try what you said about the tests and vitamins etc. I thought I was covering all bases but that is what is so special with this website that I found yesterday... I am open to new options as nothing so far has really helped as of yet. :o I would appreciate more words of help and advice from more generous souls... I see my sons case is quite specific and unique... ;) I am not very religious, but if anyone can send healing prayers to him I/he would be greatly touched in our hearts. Life is so precious and the love from some people can really make a difference and move mountains. thanks again, and God Bless! Janet
    janetk 3 Replies Flag this Response
  • Hm...I usually sleep about 12...yesterday 13. But 18 is a bit crazy even for me :confused:
    Temperate 35 Replies Flag this Response
  • I have the same problem, I can't get out of bed, barely have a life. I can't see friends because I know I won't be able to get up to see them. I fall asleep during class if it gets too warm and I have to drink water to stay awake, for some reason that helps a little. I completely understand, it is very frustrating for both your son and yourself, my mother gets very angry and upset about it. It could be viewed as just laziness apart from the fact that I WANT to get up and do things but I just can't.Have you had your son tested for anemia or thyroid problems? All thats needed is a blood test by your doctor. Also I know that his depression appears to be a symptom rather than the cause of his sleeping too much but bear in mind that people with depression do have sleeping problems, either sleeping too much or too little, so that won't be helping any. My antidepressants havent actually helped with my sleeping problems. He might also be feeling very weak BECAUSE he's been sleeping so much, I know I have no energy whatsoever after sleeping so many hours at a time.Does he ever fall asleep when he's doing something like sitting in class or on the bus after he's had enough sleep to not be tired? You could be looking at mild narcolepsy, this is something I am considering looking into.All I can suggest in the meantime is that you do try to encourage him to spend time in the fresh air and get a little exercise each day. Energy breeds energy. I do generally feel better when i'm up and about, its just getting out of bed and staying out of bed/off sofas/chairs thats the trick.I'm sorry if this isn't particularly helpful, just know your son isnt alone in his problem, there are others.
    Anonymous 42789 Replies
    • November 7, 2007
    • 09:57 PM
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  • Fatigue is a very general symptom and is seen in multiple diseases. In order to help you I would need to know a few things. Does he have any kind of bowel changes? (color, pain, diarreah and so on)Does he have any sores in his mouth?Do his eyes ever get real red and irritated?Does he have any kind of muscle or joint pain?If so is the pain in more then 4 joints/muscles?Does he have any kind of rash?Does he retain water? I don't know if he has had a colonscopy, but you did mention that he had a feCal test. A feCal test of his bowels might or might not show inflammation or other problems. He would need a colonscopy to rule out any kind of colitis or other problems with his large intestine. You should aslo ask that he be tested for celiac disease (gluten allergy) and you should also have his thyroid tested. Be aware that he might have a thyroid problem even tho the doctor says his tests are normal. If you can you should ask for the results and post them here or on another forum for thyroid disease. Hope this helps! Kiera
    Anonymous 42789 Replies
    • November 8, 2007
    • 06:12 AM
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  • I too am very tired. It started seven years ago and I get no help at all from doctors, since the only time I can visit a doctor is when I have have a better period. During my worst periods 2002 and 2003 I too slept for about 18 hours a day. The most likely illness that fits these symptoms is Chronic Fatigue Syndrome, and there is to my knowledge no cure yet. I would have a lot of interesting things to do, and I want to do them too but I just can't because of my tiredness. Occasionally I'm even too tired to turn of my wakeup alarm even though it is only half a meter from my bed, so I end up listening to it for one minute every ten minutes for one hour. Now this CAN'T be lazyness, even a lazy person would turn it off. The reason I landed here today is that I'm having a bad spell again with up to 18 hours of "sleep". It's not continuous sleep, but a sort of dozing with a few hours of sleep at a time. Trying to stay up for more than 4-5 hours only makes it worse, but sleeping doesn't help either. Vitamins don't seem to help. Luckily my family understands my problem and they don't apply any pressure on me anymore. I used to be a real busybody, doing a lot of stuff both for my self and others. Since the onset in the year 2000 my friends have gradually given up on me, and I can understand them perfectly. I too suffer from depression because I can't do what I want to. At the moment I am unemployed and the unemployment office keeps harrassing me constantly. They can't believe that anyone can sleep for 18 hours. I have had a few short jobs recently, but have had to leave occasionally to go home to sleep, and return later to finish my tasks. My employers have been very understanding maybe because I have told them about my problems beforehand. I hope Your son gets better, but if he is like me I doubt it. CFS is a very difficult illness to accept, specially since there will be occasional good days or even weeks which raises one's hopes. The only thing I can say is: You're not alone. The best thing to do is to try to accept that You can't=don't have to, do as much as before. Forcing Yourself only makes it worse. My goal at the moment is to do ONE thing every day so that I can say "Yesterday I did.....". Sorry about this negative response but I am also feeling depressed at the moment. I will try to get back here another day when I feel better and try to write someting more positive if I can. And if I find a cure or anything that will help I will let You know immediately. One thing that I do: I listen to a lot of audiobooks while dozing, since even reading is too much of a strain. That way the time I lay in bed is not a complete waste of time. I have learned quite a lot this way. I can recommend "The brief history of nearly everything" by Bill Bryson, for a really good doze of interesting knowledge. I have listened to it maybe 9 or 10 times and I still find it interesting.
    Anonymous 42789 Replies
    • November 8, 2007
    • 06:42 PM
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  • Doctors very often send patients to the shrink when they have no idea what the problems are caused by, but don't want to admit it. You'd be wise to get someone proficient at researching on the net (with full knowledge of what your son is experiencing). Do check the thyroids, hormones, B& & B12 as has already been suggested, but also iron and other minerals.Does he have problems with his digestion in any way? Constipation? You should in that case (and maybe anyway) get him checked for parasites (by specialists, not a GP!). Parasites can lead to deficiencies of minerals and amino acids.Is there a possibility that your son has been exposed to heavy metals? Poisoning can cause what you describe. The mercury in teeth fillings can also cause such problems if the person is allergic to it, though only rarely as dramatic as in this case.Good luck!
    GeoffBaker 18 Replies
    • November 8, 2007
    • 08:19 PM
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  • To sleepy not dopey: I love Bill Bryson also. I especially loved the one about walking the appalachian trail and the one about Australia. He is so sarcastic, but funny...poking fun at everything and mostly himself.
    rad-skw 1605 Replies
    • November 9, 2007
    • 00:01 PM
    • 0
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  • It might be worth asking to have his thyroid antibodies checked to see if he has an autoimmune thyroiditis, which can be complicated by an encephalopathy which causes sleepiness and fatigue. Doctors do not typically check thryoid antibodies unless the thyroid hormones come back abnormal, so you have to ask for them specifically. This condition is called hashimoto's encephalopathy and is quite treatable with steroids so is worth looking into if no other answers are coming upgood luck
    Anonymous 42789 Replies
    • November 9, 2007
    • 10:02 PM
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  • I too sleep 18+ hours a day. When I do get up and try to do something I find myself dozing when I try to drive or sit. I yawn constantly when I am awake. I find myself paralyzed sometimes where I can hear things around me but unable to respond. I feel crazy. My kids have had to learn to deal with a mom who is always in bed. I feel so guilty but cant change it. tried vitamins, fish oil, anti depressents , bi polar meds etc. etc. NOTHING HELPS. I do have good days once in awhile maybe every 3 months. then I hit a manic high and cant sleep for about 2 days then fall right back into sleeping all the time. I have lost so many relationships/friendships because when I am having a "bad time", I cant return phone calls, leave the house, keep dr appts etc. Not even go to the grocery store. I have a husband who understands and is extremely patient and helpful. I feel so useless. I am sorry that someone else has this problem. trust me this is not laziness. If it was we would at least do the things we enjoy.. I feel like I sleep life away and have missed out on so much. I simply cannot help it. If anyone knows what this condition might be PLEASE offer some advice. ( i have also had my thyroid checked it is in the normal range.)
    Anonymous 42789 Replies
    • November 16, 2007
    • 11:46 PM
    • 0
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  • Hey...about a month ago I was diagnosed with subclinical hypothyroidism. My T3 and T4 levels were normal but TSH was twice the normal (10.5) so i was not put on meds. These days i am sleeping a lot...sometimes 18 hours a day and while im sleeping I dream a lot, plus i tend to remember all my dreams....I have to go to the doc this month...is the Tsh will still be high , he will put me on meds !
    Anonymous 42789 Replies
    • December 19, 2008
    • 11:23 AM
    • 0
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  • for some reason, I just want to say a few thingsSleep apneateenagerendless cycleI'm not a doctor, but I know that if you start getting on a sleep cycle like that, it won't change and bad things can result. He's getting weak because his muscles are atrophying from their gross lack of use, and he always feels tired because he's getting poor sleep. Try this; wake him up, make him sweat and burn some calories, feed him a healthy meal, and do whatever it takes to only let him sleep between 7.5 and 9 hrs a day. Preferably right on the dot. Most intelligent creatures have set sleep phases. For humans this is about 1.5 hrs a cycle. This is why sometimes we can get only a few hours of sleep and feel better than getting woken up in the middle of a cycle (say 8 hrs in).If he has sleep apnea (troubled breathing while sleeping) this could also contribute to the tired feeling as he won't be able to get into full sleep cycles. This is usually associated with large people but can affect others as well.This entire problem may be exacerbated by a number of things. He is a teenager still and subject to shifting hormones. This may cause a form of depression which will make him feel like sleeping or being lazy. This can be cured with a good dose of purpose (sports, exercising, even video games can help here, i know for a fact :) )In short, MAKE him get up and exercise. Everything else is secondary. If it persists ... what cannot be cured must be endured.
    Anonymous 42789 Replies
    • January 7, 2010
    • 08:47 PM
    • 0
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  • I had this type of fatigue, I was diagnosed with Mediterranean Anemia, it came from my heritage of French Canadian, have your son tested for this as well as exposure to mercury, lead and definitely food allergies. Good Luck with this!! Chinese Medicine is awesome and it can heal as well.
    Anonymous 42789 Replies
    • January 10, 2010
    • 05:44 AM
    • 0
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  • I was diagnosed with Crohns Disease when I was 6 years old - this was 1989/1990, which makes me 26 now.By my teenage years, I had become severely depressed, having my career as a film actor stopped by my divorcing/arguing parents, entering high school after incredible amounts of teasing and unable to make friends anywhere I went. (I also came out around the same time). I found this forum after I searched for reference that could help bring to light one instance when I was 16 when I slept for 18 hours, until 6PM when I was called to dinner. Otherwise, I followed in the steps of my father who worked (and still does) from 4AM to noon then comes home to do paperwork and then nap. He also has a history of light forms of IBS, as does his family. Being like him, I slept every day after school, from 3 to roughly 7, sometimes 8. Then a full nights sleep (8 hours on top) for school.Winter of 2005, I had such a bad flareup I went in for a colonoscopy, where I had 7 biopsies done on my large intestine. After the procedure, I was suggested a regimen (a TEST regimen) of 6 pills 3 times a day. After years of this already, I said no.A friend introduced me to the organic market, but it wasn't this that ended up putting me back on track within a month. My friend also became just that - a good friend, and that was enough to get me to want to take care of myself again. Unfortunately, she has been gone for roughly 2 years, and I am starting to fall back.I hope my story has SOME reference to help your son - I would say, in a nutshell, reduce fat intake, as it can interfere with heart rate, especially working out. (I noticed how down I felt today, the same day I ordered a breve (half and half, as opposed to milk) latte for the first time in months). And simply find that ***t for life again... it helps.
    Anonymous 42789 Replies Flag this Response
  • Make sure you've had all of the general tests (eg. blood work, MRI). Sleep irregularities could also indicate problems with the brain sometimes, so maybe look into that. If its been going on for a year it's almost certainly not cancer, but there could be a benign tumor or something
    Anonymous 42789 Replies Flag this Response
  • I am currently sleeping the same amount of hours due to having glandular fever. it can stay in your system for over a year if you get a severe case of the fever. there is no medication for it and you do loose a lot of weight. i lost 2 stone in just over 2 weeks due to having it and ended up in hospital on iv fluids. it will get better though
    Anonymous 42789 Replies
    • October 8, 2010
    • 07:06 AM
    • 0
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  • I am a little delayed on this response, but I find this to be similar to me. I also take lamictal & cymbalta & nothing else. If I am not working I can sleep until something/someone wakes me up. Usually my cat wakes me up after about 18 hrs, but it makes me wonder if it has something to do with the med combination.
    Anonymous 42789 Replies
    • November 19, 2010
    • 07:47 PM
    • 0
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  • I too sleep 18+ hours a day. When I do get up and try to do something I find myself dozing when I try to drive or sit. I yawn constantly when I am awake. I find myself paralyzed sometimes where I can hear things around me but unable to respond. I feel crazy. My kids have had to learn to deal with a mom who is always in bed. I feel so guilty but cant change it. tried vitamins, fish oil, anti depressents , bi polar meds etc. etc. NOTHING HELPS. I do have good days once in awhile maybe every 3 months. then I hit a manic high and cant sleep for about 2 days then fall right back into sleeping all the time. I have lost so many relationships/friendships because when I am having a "bad time", I cant return phone calls, leave the house, keep dr appts etc. Not even go to the grocery store. I have a husband who understands and is extremely patient and helpful. I feel so useless. I am sorry that someone else has this problem. trust me this is not laziness. If it was we would at least do the things we enjoy.. I feel like I sleep life away and have missed out on so much. I simply cannot help it. If anyone knows what this condition might be PLEASE offer some advice. ( i have also had my thyroid checked it is in the normal range.)NARCOLEPSY!!! Go to the doc request to have a sleep study...I guarantee this is what you have. This is the only sleeping disorder that causes people to become paralyzed briefly, also known as cataplexy, and to hear voices or hallucinations. Google it..you'll see. Unfortunately there is no known cure but there are medications that can be prescribed to help symptoms. I myself have been diagnosed with this disorder..it sucks..but your not crazy!! No need for bi-polar meds....you have been misdiagnosed.
    Anonymous 42789 Replies
    • November 21, 2010
    • 08:06 AM
    • 0
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  • NARCOLEPSY!!! Go to the doc request to have a sleep study...I guarantee this is what you have. This is the only sleeping disorder that causes people to become paralyzed briefly, also known as cataplexy, and to hear voices or hallucinations. Google it..you'll see. Unfortunately there is no known cure but there are medications that can be prescribed to help symptoms. I myself have been diagnosed with this disorder..it sucks..but your not crazy!! No need for bi-polar meds....you have been misdiagnosed.I'm surprised nobody has mentioned Kleine-Levin Syndrome yet.
    Anonymous 42789 Replies Flag this Response
  • I am very interested in what happened with the original poster. Mam if you are still receiving responses to this thread via your email. Will you please let us know how your son is? It's been 4 years, so I would hope something had been resolved during that time. Can't help it but now I'm worrying about him lolI must say I was very disappointed by the physician immediately giving him bi-polar medication if the main symptom was chronic fatigue and sleepiness. I would imagine that he may very well have been depressed due to not being able to get up and do things, but it certainly doesn't mean the depression came first. Also nothing you mentioned sounded like bi-polar to me. I also fear that taking too many meds like this will cause more problems than it helps, because that happened to me. My husband once suffered fatigue like this after cancer treatments, and it turned out his pituitary gland was not functioning properly. It was not releasing enough cortisol or testosterone. Both are required for guys to ''have energy'' - I mean he could take a shower, walk to the car and then have to go back to bed. That is all he could do. He is now completely back to normal. Cortisol is what regulates blood pressure and energy levels in all people. Without any we would die, without enough we're exhausted. Surely, as many people mentioned, the doctor checked his thyroid, right? They always check only what is common, not uncommon. I would suggest going to an endocrinologist to check all the hormonal balances, and they will check the cortisol etc when you mention chronic fatigue.Also people who suffer from Chronic Fatigue Syndrome do NOT always have Epstein Barr, so that should not have been ruled out.Anemia - all types - I have iron deficiency anemia and sometimes I sleep 18 hours a day.But for god's sake if the medicine lamictal & cymbalta is not helping, get him off of it. After my son passed away I suffered from depression so severe I thought I would die. My doctor kept putting me on more and higher doses, added lamictal and & something else as well. Finally I couldn't even get out of bed. My house turned into crazy lady stacked newspaper maze house. Finally, I weaned myself off all of it, except a medium dose anti-depressant, and now I am living pretty well and generally happy. House clean, grocery shop, cooking, etc. NORMAL... haha -- But being on the high doses of stuff he had me on made my symptoms mimic bi-polar, (something people don't just 'get' at age 44 suddenly.) So he started giving me that all that medicine I didn't need. God bless you, I hope your son is all right.
    BunnyOlesen 2 Replies
    • September 29, 2011
    • 07:53 AM
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