Does Caffeine Worsen N Symptoms?
Posted 24 February 2011 - 11:27 PM
Just to clarify, I only drink coffee/tea in the morning, and no more than 2 cups/day. It never affected my sleep - I still slept around the same time each day. It's just I'd find myself even more sleepy and have a harder time getting up.
Posted 25 February 2011 - 11:48 PM
In short, a good number of people with narcolepsy drink coffee throughout the day ... one person claims to drink a gallon per day! I think there have been some studies on the effectiveness of caffeine on sleepiness, and that they showed their was a subjective improvement (i.e., people thought they were more awake) but not much of an objective improvement (i.e., not much improvement on tests that measure one's degree of sleepiness.) But don't quote me on this ...
The caffeine probably does help to some degree, if you can tolerate it. My stomach's tolerance of coffee has declined quite a bit over the past 20 years and I am now down to 2 very weak cups of 1/2-caffeine coffee in the morning. Honestly I don't think drinking coffee ever did much for my EDS. It was just something I was programmed to drink when I needed a physical boost. In my case, I'd bet the boost came more from the aroma and physical activity of fixing the coffee than actually drinking it.
I recently found out I have GERD- gastro-esophageal reflux disorder. Coffee is acidic and therefore aggravates this problem. This could be your situation, too. Signs include unpleasant side effects like nausea or heartburn,especially when you consuming acidic foods/drinks.
The Late Fall 2009 issue of The Network (NN's member-only newsletter) included an article in the section "Research Briefs" about a study in mice with narcolepsy. They tested the effectiveness of a chemical called paraxanthine - a metabolite of caffeine. From what I recall, paraxanthine is the actual wake-promoting substance, and can be tolerated in much higher doses than one could get from drinking coffee without the caffeine-type side effects such as jitters. It appears paraxanthine is not commercially available, yet anyway.
I've read up quite a lot on food allergies and sensitivities as a potential source of EDS. (With food allergies, the response is immeidate, such as hives or vomiting. With food allergies, it can take up to 72 hours for the effects to appear, so it's much harder to make the connection between the food or drink and the reaction.) A number of PWN (people with narcolepsy) have eliminated their N symptoms by identifying problem foods. For one, it was plants in the nightshade family*, but we are all different and the list of possibilities is endless. You may have been lucky to happen upon caffeine or some other substance in coffee and tea as a problem for you. It could even be what you put in the coffee (e.g., artificial sweetener). If you want to explore whether there are other foods or substances (could even be dyes or fillers in medication!) that are causing your EDS, the surest way is to go on a food elimination diet. You can find plenty of info on the Internet. You should do this under a physician's care, but don't be surprised if your GP thinks this is all hogwash. It's not easily diagnosed and there are no medications involved, so it's not high on most MD's radar. A nutritionist may be the way to go. If after several weeks on a very limited number of foods you find your symptoms have gone away, you then add back one food at a time. This way, if your symptoms return, you know what food is the culprit. OTOH, if you find your N symptoms have not changed after several weeks, you can rule out food sensitivities.
*See article “NetWORKING: Could brain allergies be causing your Narcolepsy symptoms?" (The Network, Spring 2005)
One last thought: we tend to attribute new health complaints to N when they may not be related at all. A good rule of thumb is to discuss any new health issue with your physician(s) so that they can properly consider and rule out or identify other possible causes.
Hope this info helps!
Posted 03 March 2011 - 02:10 AM
I did suspect that I may have some sort of food allergy, but I have not identified any specific food aside from bread and coffee. The fact that the effect from caffeine seemed cumulative rather than reactive supports the food allergy theory. However I do suffer from non-ulcer dyspepsia (GERD-like symptoms but without real damage to the esophageal tract) , so it could be that caffeine worsens my GERD symptom, which then disturbs my sleep at night.
However I do want to point out that even if I avoid caffeine/bread completely, there's still symptoms of EDS, though of less intensity. I'm able to function during the day without naps, but my brain/body still feels slow in comparison to how it used to be. My energy level is also generally low, which limits the amount of work I could do. Perhaps I do need to do a complete food-elimination test as you suggested.
Posted 04 March 2011 - 07:26 PM
Posted 13 April 2011 - 09:44 AM
Posted 24 July 2013 - 01:30 PM
I am a bit late with responding to this thread, but I am glad to find someone else for whom the cumulative effects of coffee increases EDS. I have found this to be the case for me as well. I'm currently drinking an herbal drink called "Teeccino" that you make in a coffeemaker but it is non-caffeinated. It is made out of herbs and nuts and dates and isn't half bad. You can find it at Whole Foods or health food stores. The website is www.teeccino.com.
Also, I found a journal article (I have free access but realize others may not):
that talk about how eating protein causes the release of orexin/hypocretin in the body which makes you more alert, whereas eating carbohydrates decreases the release of orexin/hypocretin which makes you sleepy. Narcolepsy, is, after all, the absence or low level of orexin/hypocretin. That's why bread and other carbs tend to make you more sleepy. I notice that when I eat eggs in the morning or other protein without bread, I feel alert. If I drink lots of water on top of that, I feel even more alert. Dehydration causes fatigue. Exercise, as difficult as it is for me to be self-disciplined about, also gives me energy. I could be dead tired and then force myself to exercise and afterwards i will have energy again.
I know all of this from experience, but still have great difficulty taking care of myself. Depression is what prevents me from being self-disciplined with what I eat, whether I exercise, or whether I drink enough water. I resist going on anti-depressants because they cause weight gain and I already have a very slow metabolism. Not only a slow metabolism, but i eat as a habit to help me stay awake. I wonder if other narcoleptics fall asleep when they eat. I never do. So what a perfect way to stay awake, at least for the moment, right? Too bad massive weight gain is the result.
Anyway, lately I've been wondering if I might have a food sensitivity causing my EDS (maybe gluten??), so I'm grateful for Sharon's post, but I just don't see how it's possible to identify the culprit if the effects don't occur for 72 hours. Also, varying degrees of EDS are difficult to measure. What should I record on paper? "Very, very sleepy today"? Or only "Very sleepy"? Or only "Slightly sleepy?" And how to remember from day to day what "Very, very" actually was?
I'm unsure if everyone was talking about a food sensitivity causing narcolepsy (when it's been proven to be a low level of orexin), or if everyone was talking about a food sensitivity causing EDS only. EDS is not the only symptom of narcolepsy, as you all know. For those who have cataplexy, I think the answer is clear that the cause of their EDS is narcolepsy (low level of orexin) and not a food sensitivity. Also, EDS means nothing unless there are at least 2 REM sleeps in the MSLT.
Not sure if I'm misunderstanding??
Posted 24 July 2013 - 02:16 PM
I know that caffeine can seem like a God send if I boycott it for a few weeks, then finally drink a soda or something. But usually, it just makes the fog and headaches worse. Doesn't really change my EDS either way.