Over the last several years I've been dealing with various stages of disability thanks to ALS. My goal is to share solutions and review various products/tools/devices that I have found particularly helpful.

Thursday, 30 May 2013

Dealing With Sleepiness & Fatigue

One of the unfortunate symptoms that ALS often provides is fatigue and sleepiness. For me this can often be extremely annoying as it usually starts by a round of pretty intensive yawning, which tends to cause for me some rather painful and unpleasant cramps in my neck and jaw. When these happen, there's nothing I can do about it other than wait for them to go away… At which point I usually yawn a second time which perpetuates more cramping…

It is not always the type of fatigue that makes me feel like I need to take a nap, just drowsy and lower energy for an hour or so. But if those cramps I really want to avoid.

So one option is to take a stimulant to help plow through the fatigue. I've tried a couple different types, and here's what I find works for me:

Coffee has been a long-standing source of enjoyment for me, as evidenced in one of my first posts on this blog. There's just something about a good strong cup of coffee. I don't know if it's because I spent a number of years working at a volunteer fire station, where hanging around you'd have a cup of coffee and chat with the boys between calls… Or if it's more of a Pavlovian reflex to my very first serious girlfriend who worked at Starbucks (use your imagination).

Obviously, the active ingredient to help get through the fatigue is caffeine. It does give a relatively immediate kick, but it can also leave you with a crash afterwards. Also, you probably don't want to drink too much of it as it is acidic and other some circles of thought, having an acidic pH in your body can contribute to chronic illness.

If nothing else, too much coffee can make your stomach feel acidic and too much coffee as a diuretic which can cause dehydration and possibly leave you with caffeine headaches. So I usually limit my coffee intake to just a couple cups a day of espresso. Usually in the morning.

A couple coffee made his home is relatively inexpensive. However due to my dexterity limitations, I'm using an nespresso machine which puts the cost per espresso at about $.63 Canadian.

Dealing with this illness review with very few options as there are no treatments. So I like most people in my situation taking huge collection of vitamins trying to slow the progress down anyway I can. One of these that recently added is Pamax ginseng.

Ginseng is another form of stimulants, but it also has antioxidant properties which is supposed to be good for your general health. One of the theories that exists under a more holistic schools thinking is that ALS causes its damage through oxidation and free radicals. Ingesting antioxidants such as ginseng are supposed to help prevent this type of damage.

At the moment I'm taking one tablet with my vitamins and morning, and on occasion to more in the afternoon when I'm having one of my bouts of fatigue. So far I've not found the ginseng terribly effective with the fatigue. Perhaps I'm not taking enough. Also I do find that it is much slower to have an effect than caffeine alternatives. Not to mention that taking ginseng in pill form provides no actual comfort or enjoyment. It's completely tasteless. For some of you dealing with ALS, swallowing can no doubt be a problem. That said these capsules are easy to pop in and add to whatever liquid you are able to consume.

Individually each pill is not very expensive, and prices for ginseng range quite widely. That said, so does the potency. Be sure to check the label.

There is the huge world of energy drinks out there and there's no way I can, or intended to try all of them. But I have on occasion tried a red bull. It's essentially a form of soda, with a sweet and bitter taste. It tastes okay, not great my opinion but okay. The nice thing about over coffee, this is something that you drink cold making it much more appropriate on hot days.

Red bull does have some interesting ingredients, and you can read about them in more detail here. Here are a few points of interest:

Caffeine: Again would give you the kick and has a pretty immediate effect.

B vitamins: this is something that's supposed to be good and nourishing for your nervous system. It also gives a little more staying power to the levels of energy. As a matter of fact my doctor has even prescribed to me vitamin B supplements.

Inositol: A carbohydrate found in animal muscle reportedly can significantly reduces depression and panic attacks among others. However the dosage is apparently insufficient.

Personally, I don't drink much in the way of soda these days. So I tend not to drink red bull often. The times I have had it, I have noticed it to be pretty quickly effective, lasts for a reasonable period of time and did not give me the crash afterwards.

Cost about $2 Canadian per can.

I originally started taking the occasional five hour energy after reading about it from another patient with ALS in the patient's like me forms. For the moment I find this is the most effective form. However I will say it energy doesn't seem to last quite five hours. Nonetheless it is plenty sufficient to get me through the around the fatigue.

There's a number of flavors, but here in Montréal I've only found two. Orange and Berry. For the orange, I don't particularly like the taste. But then again that's not why I'm drinking it. It will deliver pinch. I find the orange tastes excessively artificial for my liking. However, the Berry blend I find is actually quite good.

It's has some ingredients in common with red bull such as caffeine and vitamin B blend. It does however have a much higher concentration vitamin B. You can read more about the ingredients here. Again, here is some of the ingredients of note.

Vitamin B concentration: These levels are quite high and can result in the niacin flush. This is also what gives father energy some of its staying power. As part of this is the folic acid, which is another supplement my doctor has also prescribed. Folic acid, or folate, helps produce and maintain new cells in our bodies.

Caffeine: again, what gives it its immediate kick

Glucuronolactone: It has been shown to reduce sleepiness(see the footnote, not evaluated statement by FDA).

Phenylalanine:  sold as a dietary supplement to combat pain and depression. It actually works inside the body with tyrosine to produce dopamine, adrenaline, and build skin pigmentation.

When I'm really having a bout of fatigue, and absolutely need to stop yawning I find five hour energy is the most immediately effective. The nice thing is it's a very small container, making it very easily portable. So I'm out with the wife and kid, we can usually keep one with us. Now that being said, the way it's packaged is impossible for me to open on my own. It is covered in a vacuum sealed plastic buckle up and over the lid. This is impossible for me to remove on my own.

Each small bottle costs between $2 and $2.50 Canadian.

Now, before running out and buying a bunch of energy drinks to solve all your ALS related energy problems. Keep in mind that they do come with a health warning and can have some unpleasant/undesired side effects. Please read this link for more information.

In my case, I have found that excessive energy drinks such as these can sometimes promote the feeling of anxiety and from physical standpoint aggravate my fasiculations. Making me twitch a whole lot more. Which intern makes me anxious.

So please keep this in mind, and consume these types of drinks sparingly. Not to mention, to consider the time of day before taking any it is. Having a five hour energy at 10 o'clock at night might not be in your best interest ;-)

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