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Things To Consider

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I was thinking about this the other night. I tend to be very ... inquisitive, I guess, about the medications I'm taking. I'm sure most of us are, because there are so many different combinations that might or might not work for each of us. But, there are some things that I pay very close attention to that I've learned most people don't--at least, people in general. For PWN, it may well be otherwise. I haven't been here for long enough, really, to find out. But, I thought I'd share a few thoughts.


Are you lactose intolerant? Does your medication give you gastrointestinal problems, like bloating, gas, or diarrhea? Check the INACTIVE ingredients on all of your medications! I am extremely lactose intolerant--a Hershey's kiss is about all the dairy I can manage without taking a lactase enzyme supplement, and that's only if I have NO OTHER DAIRY for the entire day. Because of that, I've learned to check my medications carefully. Seems like 99% of pills are manufactured using lactose monohydrate as a base--even allergy medicines use it! Capsules and liquids don't seem to have this problem.

Nuvigil DOES use lactose monohydrate as a base, and I have to take a lactose enzyme supplement (Lact-aid or equivalent) every time I take my Nuvigil if I don't want to end up sick.


Have allergies? Ever take a "night-time" pain reliever (Tylenol PM, Advil PM, etc.)? Diphenydramine is the active ingredient in Benadryl, and one of the active ingredients in other OTC allergy medications. It's also the "sleep aid" added to those night time pain relievers. I've been told it's a very bad idea for anyone with a sleep disorder to take it. I'll grant you, this was many years ago, long before my Narcolepsy diagnosis, but I'd gone to see a sleep specialist because I couldn't sleep. I've always been an insomniac--4 hours of sleep for me was a good night--but at this particular time, I hadn't gotten more than 20 minutes of sleep in a single night for a couple of weeks and, yes, I was starting to hallucinate. My insurance, at the time, wouldn't cover a sleep study, but through discussion of my symptoms, the sleep specialist diagnosed me with primary insomnia and RBD. One of the things he mentioned at the time was that I shouldn't take diphenhydramine, except in emergencies. In his words, "Your brain chemsitry is already screwed up. Diphenhydramine will just screw it up more!" Whether this holds true for narcolepsy or not, I don't know. I know it's true for me.

From personal experience, there are times when I'm forced to take diphenydramine. I'm allergic to bee and wasp stings, and when I get stung, I need the antihistamine to reduce and control the swelling. The last time I was stung, it was on my thumb. By the time I walked to the bathroom (it wasn't a large house) and took out a Benadryl, my entire hand had swollen to near-immobility. Since I've never gone into anaphylactic shock, I don't qualify for an epi-pen. When I do take diphenhydramine, it does two things. First, it will put me to sleep for a time (1/2 the recommended dose, about 2 hours; full recommended dose, about 4 hours). Second, when I wake up from that entirely unrefreshing sleep, I WILL NOT SLEEP again for anywhere from 1-3 days, then will crash for, usually, 12 hours or so.

Benadryl cream, used on insect bites and the like, does not have that effect.


Most prescriptions come with drug information, but it's relatively limited. Sample packs, or medications that are prepackaged rather than packaged at the pharmacy, will often have a big insert, folded up about 600 times to make it fit in the package (yes, that is probably an exaggeration) and printed on very, very thin paper. The print is also practically microscopic. However, if you can read it, it doesn't hurt to do so! Yes, a lot of the information it contains is very specialized and hard to understand--but that's what the questions are for, yes? If something catches your eye, and you don't quite understand it, look it up on the internet or ask your doctor about it. You can find a lot more information in those inserts than on the drug information sheets the pharmacy prints out. And if you can't read the insert because of the size of the print, you can usually find a copy of it online. I especially like to read the information the drug inserts contain about possible side effects. They will often include probabilities of certain side effects, based on what they found in various clinical trials, as well as having more information than what the pharmacy prints out. They also generally contain information about whether or not studies have been done related to their effects on pregnancy and breastfeeding, how long the drugs stay in your system, whether they work best taken alone or with food, and whether any particular foods or drinks can affect the way they work (Did you know that taking your allergy medicine with orange juice might negate the effects of the medication?).


I've known so many people in my life who just ... do what the doctor says. Take whatever drugs the doctor gives them. Never question the doctor.

Doctors are people, too. Yes, some of them develop a god complex and hate to be questioned. Those are not the good ones. Your doctors should always be willing to answer whatever questions you have to your satisfaction, not theirs! When I have to switch doctors, I treat my first visit like an interview. I give every doctor the same warning: "When I come in, I will have questions. I will have researched my symptoms, narrowed down possibilities to what I think are most likely, and then researched the various tests and treatments. I will probably have printouts, and will definitely have notes about what questions I intend to ask. I will not accept your diagnosis or treatment until I am satisfied about the reasons behind it. If you don't want to have to deal with that, please tell me now so that neither of us wastes our time." I've never actually had any of them tell me they couldn't deal with it, but I watch them closely when I'm telling them, and my decision of whether or not to continue seeing that doctor is based largely on their reaction. For instance, my current PCP, when told that, smiled, nodded, sighed and said, "You have no idea what a relief it is to hear that." Other doctors, in the past, have rolled their eyes, smirked, or made other expressions (probably without realizing it--or realizing that I saw it) that made me decide they weren't for me.

That's all I can think of for now, and I realize most of you probably already know these things, but with everything we deal with, sometimes things slip through the cracks and we might not think about them. I thought it might help to share. Anyone else have anything they want to add to the list?

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