Do you know all the potential side effects of each of your medications? Maybe something you had been blaming on multiple sclerosis is really a side effect. The good news is that a simple change in how you take your medicine or which medication that you are taking could lessen some of your MS symptoms.
You should discuss any suspected side effects with your doctor, but it helps to give him or her as much information as possible. I have adapted this information on how to keep a side effects log from my book, The Multiple Sclerosis Manifesto: Actions to Take, Principles to Live By in order to help you better understand what might be happening with your meds.
How To Create a Side Effects Log
It is extremely important for us to monitor the effects of the medications that we take for our MS symptoms or our disease-modifying therapies in order to make sure that we are getting the most out of them and that they are the right meds for us. Remember, unlike other disorders, very few problems associated with multiple sclerosis can be measured by quantitative tests that the doctors can run (such as hormone or thyroid levels). Even regular MRIs do not tell the doctor much about the amount of disability we have or symptom-related discomfort that we are experiencing, as these things do not necessarily correlate to the pictures of what is happening in our brains. In the case of most MS symptoms, the doctors rely on our reports to decide if or how to continue treatment with these drugs, so it is crucial that we be accurate and provide our doctor with good-quality information.
In addition, side effects of medications can often be lessened by changing simple things, such as the time of day the drugs are taken or splitting doses. It is also possible that what you think might be new MS symptoms are side effects of medication, and vice versa. Logging can help prevent unnecessary suffering.
Using a simple form that you make, you will periodically record when you take your medications, your symptom intensity and duration, as well as note any other factors that may be impacting your symptoms.
Make a list. Write the date at the top of the paper, you’ll use at least one sheet per day. Next, draw six columns on the paper—the first four columns should be narrow and the last column wider. The columns should be labeled “Time,” “Medication,” “Effect,” “Symptom,” “Severity,” and “Other Factors.” In the “Time” column, fill in the hours that you are awake, one hour per line (7:00 a.m., 8:00 a.m., and so on). In the “Medication” column, you will write down the medication you take next to the corresponding time. In the “Effect” column, write down anything that you notice that seems related to the medication next to the corresponding time or noting the time. In the “Symptom” column, note the symptoms that you are experiencing. In the “Severity” column, you’ll write how severe the symptom is on a scale of 1 to 10 (10 being the worst you could imagine). In the “Other Factors” column, you’ll note food you have eaten, activities or exercise that you have engaged in, your stress level, or anything else that might influence the symptom. (i.e., “Time: 8:00 a.m.; Medication: Baclofen 20 mg; Effect: 8:25 a.m., slight dizziness and tired feeling; Symptom: spasm in right leg; Severity: 8.5; Other Factors: forgot to eat breakfast before taking meds)
Keep it with you. If you have your Side Effects Log with you, it will be much easier to make entries. Don’t rely on your memory at the end of the day. Jot notes on an index card during the day and enter them on the form each evening if it is easier.
Make entries. Stop at least four times during the day to check in and make entries. The more often you stop and enter observations, the more accurate your Side Effects Log will be. This is especially important if you are trying to figure out what triggers or helps specific things or side effects. Set a timer or alarm to remind yourself to check in with your symptoms, stress, or energy levels. Try to be as detailed and specific as possible. It will make it easier to see patterns later.
List other factors. Whereas the main columns on your Side Effects Log are self-explanatory, the “Other Factors” column could be the most important. Here is where you will try to capture and note other things that may influence how you feel. Besides just the medication that you are taking, social situations, food, your mood, and the temperature outside may all impact how you experience a symptom. Be sure to note these things.
Analyze. Analyze your data every couple of days. This will help you to see patterns in the items you are tracking, as well as improve your data input. Look for patterns in the time of day, the duration and severity of symptoms, as well as any potential side effect (or positive effects) from the medications. Take a good look at the other factors and see if you can identify things that make symptoms worse, as well as things that may help.
Make some changes (after discussing with your doctor). While still keeping your Side Effects Log, make some changes. If you notice that you feel nauseated when you take your medication on an empty stomach, try taking it with food, unless otherwise indicated. If you notice that you lose your appetite after taking the medication, eat your meals before you take it. All these things, however, must be mentioned to your doctor or checked with the nurse to ensure that: (1) the effects that you are noticing are not an indication of a serious adverse reaction, and (2) that it is okay to take the meds with or without food, etc. If the medication makes you dizzy for an hour, make sure that you strategically time your morning showers, driving a car, or anything else that could put you (or others) in danger.
I really recommend that you do this, even if it is just for a little while. You will probably discover something that will give you
To go more in-depth with your Side Effects Log, try logging everything for a week. In addition to any symptoms you might have, log moods, sleep, energy level, stress level and productivity. By logging everything you can really start to see connections between your behaviors and how you feel. This could give you new ideas about how to improve your health.