Replied by Jennifer (Los Angeles, CA) on 02/26/2009
I have been in the field of sleep disorders for nearly 15 years. Narcolepsy is often times mis-diagnosed and or wrongly self diagnosed. Have you had a sleep study and a daytime naps study (called a MSLT)? Sleep apnea is pretty common, especially with menopause.Replied by Deb (Grand Rapids, MI) on 02/26/2009
Jennifer, thanks for the feed back. Yes. I have had 2 sleep studies done and I trust my sleep doc explicitly. I had an overnight study done and it was very conclusive as far as narcolepsy. I then later had an afternoon "nap" sleep study done where I was able to be up and walk around, watch TV, read etc. and then would be told "ok time to nap again" several times throughout the day. I would fall asleep (REM) almost immediately and often while I was reading my head would nod as well. I rarely snore, sleep heavily through the night and if I'm ill and don't take my meds, I could sleep 24 hrs. a day. I am also on a very light dose of Paxil for SAD. Don't need it in the sunny summer, but winters kill me.Replied by L.sinclair (Boulder, Colorado, Usa) on 11/18/2009
Narcolepsy is not quite as amusing as most like to think. Sure, it means that sleep comes easily - unlike with most - but it also means sleep comes overwhelmingly. I was diagnosed a year and half ago.
Just to clarify, I went to several doctors before I saw a sleep specialist. I had blood tests for everything, and I mean everything. My blood tests were perfect - no abnormalities. Btw, I was 18 at the time so the doctors kept asking if I was depressed. I wasn't. A psychologist needed to vouch that I was not depressed. Finally, I saw a sleep specialist, and went to sleep studies - both the overnight and daytime studies. (Apparently, I average less than two minutes to fall asleep and about two minutes to hit my REM cycle during the nap test.)
So my sleep specialist suggested amphetamines, or Provigil, or later Nuvigil. Basically, we're talking prescribed speed - essentially. So many side effects, and all to stay awake. Granted they work...to a certain extent, but to what long term harm? Provigil and Nuvigil are barely 5-10 years old, Nugivil not even 1 year. The specialist will tell you, these "new" drugs are better, more concentrated in the brain to stimulate wakefullness. But truly, what is more concentrated, when your blood is still carrying this drug everywhere in your body?
So what do you do? There are no "quick" fix-its. Doctors, specialists, will admit that they truly don't understand it (therefore they can't cure it). Basically, the patient is told to suppress the symptoms of a thing without knowing the true reason for the thing.
I have not run across a single remedy that works as effectively as these drugs. However, I have run across other information on things that help to alleviate the fatigue, drowsiness, etc.
Vitamins that help:
B-Complex vitamin in the morning
Liquid B-Complex (kept in your purse for intermittent use)
-helps with sudden onset, like while driving,etc.
Things that can help in emergencies:
Ginseng
Caffeine
Nicotine
Cane Sugar
(Basically any stimulant...the effects vary, depending on severity of sleepiness. But it can help for short periods of time, 15-30minutes. Of course, be aware of the possible 'crash and burn'.)
Of course, these are not cures, but they help. Counter measures include diet changes and regular sleep patterns. Diet changes meaning unprocessed foods, avoiding unnecessary dairy, no genetically modified fruits or veggies, regular protein intake, and especially no bleached sugar or high fructose corn syrup. I also use a juicer, which truly helps with making sure I get usable vitamins and enzymes in the morning. And filtered water.
On a side-note, a homeopath friend of mine mentioned that narcolepsy can sometimes be induced by great emotional traumas. He said that this kind of narcolepsy is not true narcolepsy, that it is an emotional imbalance that the body is trying to make-up for. He said, "There is a mind-heart disconnect. The heart feels pain, while the mind refuses to acknowledge this pain. The mind knows sleep does not make this pain go away, that when the mind wakes up the problems will still be there. But the heart hurts and when the heart sleeps it feels better. It is an escape for the heart. So the heart tells the body that sleep is what it needs, despite the mind's desire to stay awake. You must reconnect the mind and heart." This is not unbelievable, in that often times the body manifests suppressed emotions visibly. However, I am still unclear as to how this connection between the heart/mind can be done. If it involves herbs, or remedies from homeopathy - he did not expand at the time.
Hope it helps, sorry for the lengthy dissertation.Replied by Justine (Boston, Massachusetts) on 10/07/2010
Hello,
I happened upon this page while doing a general search about B-vitamins. I thought it would be worth mentioning that, in addition to the other medications I take to control my Narcolepsy, my neurologist instructed me to take Riboflavin (Vitamin B-2) twice daily along with a magnesium supplement. I see that the article indeed suggests taking a B-Complex. I had been taking a B-Complex prior to my diagnosis, and my neurologist said that unless I were to take B-2 on its own, it would not be nearly enough to have any kind of effect. I was also urged to take a Vitamin D supplement. Additionally, he stressed the importance of both a fixed schedule. I should wake/sleep at the same time everyday, as well as eat at the same times. One should also avoid large meals, and instead eat five smaller ones throughout the day as to avoid any unnecessary highs and lows with blood sugar. None of these are really 'remedies', and I can tell you that in my own experience, nothing but prescription drugs has helped. I take Nuvigil and Adderall IR, and though I'm not a fan of Western Medicine, I can admit that I would not be able to function without these medications. I also noticed that L. Sinclair advised taking other stimulants... I'll admit I myself drink coffee everyday, however Narcoleptics in general should AVOID CNS stimulants. If you're really that sleepy they're probably not going to do much for you anyway, except maybe increase your heart rate.... Which wouldn't be a good thing if you're taking other stimulant medications!Replied by Johnny (Rotterdam, The Netherlands) on 12/22/2011
I am a 37 years old male and am also narcoleptic.
Car driving seems to trigger it, often on free day I let my wife drive and after a few blocks I already fall asleep, Energy drinks or Coffee really do not help in my case. Few months ago I fell asleep while driving on the highway, the bang against the side rail woke me up, my car had just little damage and no other people were involved luckily. After this I stop the car even on the emergency lane when I feel the tiredness "coming", before I always tried to make it to the next exit for a quick nap but this can be dangerous as you read here above.
Vitamin B is new to me, I will try that. Doctor gave me Ritalin a few years ago, this seems to help in many cases but not in all unfortunately.
This January I will make again a visit to the hospital to check on the cataplexy. I did not visit a hospital for years, I am just trying to cope with it but this is not always easy. The cataplexy is getting really annoying, I cannot make a joke without feeling dizzy or paralysed.
I am lucky that I am self employed and have a very good and understanding business partner and staff, I just take a nap whenever I feel like it. I could never work for an employer anymore I guess, who would hire me?!?!?
Replied by Faith (Forest Park, Ohio) on 12/27/2011
MOLD TEST your car.... Pick up the test at a Lowe's or store like that... I'm SURE that is what it is... My sister suffered from narcolepsy, and it was a MOLD ALLERGY that I finally informed her she had...Replied by Christy (Spartanburg, South Carolina) on 01/27/2012
I have had narcolepsy since I was born. I have had both the day and night sleep studies and fall into the REM sleep within the first few min of sleep. I have good communication with my neurologist and see him regularly. I have noticed that the older I get, the harder it seems to keep it under any type of control. To make things more complicated I also have fibromyalgia in addition to many other auto immune disorders.
People with narcolepsy are often very misunderstood and thought to be lazy. This is just not true. I personally am an A type personality, and very motivated. There are so many things I would love to do, but when it comes down to it, I simply cannot because of the disorder. This can cause a whole other slew of emotional and relational problems.
Narcolepsy is a very hard disorder to explain and the Sleep specialists readily admit that they do not even understand it. I personally experience all the symptoms for narcolepsy including sleep paralysis, hallucinations, and severe cataplexy. I have tried all the well known prescriptions and the ones that are not well known.
I am currently on one called Zyrem which is controversial according to everything I have read online. It's always fun trying to explain it to a new doctor or pharmacist. Regardless, it has been the only prescription that has ever been effective.
I also take Nuvigil to help keep me awake during the day. These are definitely not cures but they may be medications you would like to talk to your doctor about. I must warn you that they come with their list of side effects like any other medication, and I still experience severe exhaustion.
I don't know if anyone with narcolepsy is ever able to live a normal life. However, I do know it is easier to deal with once those around you learn more about it. Having the support and understanding of friends and families is so important. I wish there was both more awareness and help out there for people with this condition. It truly is a disability and should be recognized as that.
Replied by Louwrence (Rustenburg, North West South Africa) on 01/28/2012
Hi Christy, I also used to fall asleep especially when I sat down for a while & it stopped when I cut out all carbs, sugars & junk food. Why don't you try it?Replied by Christy (Spartanburg, South Carolina) on 01/28/2012
Hey Louwrence, thanks for the recommendation. Unfortunately, I have tried that without success. I do a strict organic diet and am very careful about what I eat. With narcolepsy, your body simply does not create certain essential hormones it has to have in order for the "turn on" and "turn off" switch to work properly. The "awake" and "sleep" switch so to speak just does not exist. My neurologist explained it to me by comparing it to a diabetic. Don't misunderstand me, narcolepsy is not diabetes and the symptoms are nothing alike. He was simply saying that just like a diabetic does not create insulin, a narcoleptic does not create the hormones necessary to control sleep and wakefulness. I was born with this condition, so sugar and caffeine really is not the cause, although it can aggravate it.
You are so right though in that carbs, sugar and junk food are not good for you and can cause you to feel sluggish and sleepy. I agree with you, and also would recommend for people to cut these types of food out as much as possible.
Replied by Debbie (Melbourne, Australia) on 01/28/2012
Christy, if the problem lies with hormones.. Do you take iodine because that regulates hormones in the body?Replied by Christy (Spartanburg, South Carolina) on 02/05/2012
Debbie, I have taken iodine in the past but that may be worth looking into again. Thanks for the suggestion!
