@Sushi, I obviously have to defer to your experience (and that of the other people you mention). I was going by the prescribing information, which paints a rather different picture. Its most serious warning is of "marked elevation of supine arterial blood pressure", and notes that the worst cases of this "were most likely to be observed in patients with relatively elevated pre-treatment systolic blood pressures (mean 170 mmHg)". Later, it says:
The term "life-threatening" is used once in the PI, but it's in the section on overdosage:
This seems to strongly imply that the makers of the drug had never seen life-threatening reactions, especially at recommended dosage levels. However, I've read the prescribing information for enough drugs to know that side effects are often underestimated (or simply not listed) in the PI, so I would certainly rely on your experience over the description in the PI. I would never have called this drug "rather benign" if I knew that it could cause life-threatening reactions at normal dosages.
This brings up an important point that I didn't cover in my last post, namely that the prescribing information may on occasion be incomplete. There's no single, definitive source for finding side effects that are not listed in the prescribing information, although Googling for "<drug name> side effects" will turn up a lot of hits. The accuracy of that information varies, though. I have found that the best additional information is often found at reputable user sites, such as PR.
@Sushi, I would like to understand this drug better, especially since the prescribing information appears to be incomplete, and I'm sure that such information would be appreciated by others as well. Could you please describe the symptoms that you and others found life-threatening? Do you know of anyone who died from taking this medication, or who would have died without medical intervention?
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In my last post, I promised to describe some treatments that are effective at relieving dyspnea (shortness of breath). None of them are curative of course, but many times they can temporarily relieve the symptoms completely. The second and third treatments have the advantage that they are both rather long lasting.
The first treatment is simple and very well known; it's simply water plus electrolytes. Variations on this treatment are described in the thread Curing Chronic fatigue - the role of water and salt..? None of these variations are a cure, but they can be very helpful. What I have found works best is the combined advice from a few CFS specialists. As I think everyone knows, water by itself is insufficient; it must be accompanied at least by salt. @xchocoholic said, "Any salt works for me." As long as you're talking about table salt vs. iodized salt vs. sea salt, etc., that's true. But it must be sodium chloride, as it's the sodium that's required to maintain blood volume and blood pressure. Other salts, such as potassium chloride, will not work here.
A full electrolyte supplement is even better. Some people drink Gatorade, but it has the major drawback that it contains sugar, and you don't want to be pouring lots of sugar into your body all day long. The best electrolyte supplement I have found is Saltstick. It contains a mixture of sodium, potassium, calcium, and magnesium. I take one of these capsules a day, plus an extra one for every quart (liter) of water that I drink.
As to how much water you should drink, there's no set amount. Some of the best advice I've seen is that if your mouth and lips are dry, you should drink some water. (This assumes that you aren't taking any medication that dries out your mouth.) Other useful advice I follow is that early in the day, you should "load up" with water; basically drink as much as you feel comfortable drinking (at least a couple of glasses), along with some salt or electrolytes. Combining all of this works very well for me. If I notice I'm feeling unusually weak, then my mouth is usually dry, although I don't notice that first. Drinking one or more glasses of water usually makes a big difference.
The second treatment is D-ribose, or just ribose for short. Those people who have read the various ribose threads on PR undoubtedly have noticed that there are many people who benefit from ribose, some who experience no effect at all, and some who have a negative reaction to it. I am one of those who had a positive reaction to it, and as the positive reaction can be very significant, as it has been with me, I think it's worth a try. I found that a starting dose of 10 gm per day, moving up to 15 gm per day (5 gm at each meal) after about a week seems to work well for most people who tolerate ribose. I have also noticed that if my energy is particularly low, at which point I may get some dyspnea symptoms, taking about half a gram of ribose, which I generally just take straight, will boost my energy rather quickly and get rid of any dyspnea.
The third treatment is either Provigil or Nuvigil, depending on your body and your insurance company. As with ribose, there are many people who benefit from Provigil or Nuvigil, some who experience no effect at all, and some who have a negative reaction to these drugs. The negative reactions are not serious. The two drugs are basically mirror images of each other chemically, but they have slightly different properties. Both drugs increase alertness, cognition, and energy. One of the ways they help in energy creation is by aiding in the creation of ATP in the mitochondria. Dr. Goldstein has called Provigil "neuroprotective"; Nuvigil had not been released when his book was written, but as the drugs work by essentially identical mechanisms, this is most likely true of Nuvigil as well. Both drugs require a prescription from your doctor.
The main difference between the two drugs is that Nuvigil lasts longer than Provigil. However, I took Provigil for over eight years and found it lasted all day for me. (I don't know if I'm typical of PWME here or not.) Many people have found that a morning dose of Provigil wears off in the middle of the day, and they need to take a second dose; for these people, Nuvigil may be a better choice. Although Provigil does not have many negative side effects, Nuvigil has somewhat fewer side effects than Provigil, and therefore may be tolerated by some people who can't tolerate Provigil. Specifically, Nuvigil lacks the side effects of back pain, nervousness, stuffy nose, diarrhea, anxiety, and upset stomach that Provigil sometimes has. Of those side effects, I experienced only nervousness and anxiety, and those I experienced only when I took too much of the drug. Otherwise, when Provigil was working, it made me feel much closer to normal. I could actually take enough to feel completely normal for a day, but then I'd have insomnia, and have to cut back. However, this can be very useful if you have to travel long distances or otherwise do a lot in one day. Since Provigil and Nuvigil boost the mitochondrial ATP, doing proportionately more while taking them (based on your energy level) does not cause PEM. You can still overdo it, of course.
Insurance varies widely for these two drugs. Most insurance companies will now cover Provigil only if your doctor provides proof of narcolepsy. There is now a slightly cheaper, generic form of Provigil available; the insurance conditions for it, as well as for Nuvigil, vary. Most drugs (including the generic form of Provigil (modafinil)) tend to be way too expensive for most people without insurance. The price of generic modafinil will definitely be dropping over time, however.
@Gingergrrl, although I have written about these treatments in a rather general manner, the reason I am posting them here is that I know your dyspnea and related weakness are the most disabling part of your ME/CFS. These three treatments have been extremely beneficial to me and many others specifically for these symptoms, and I am fairly sure that you will find at least one of these treatments beneficial to you.
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