Ask questions and be an active part of your healthcare team!
In this country we practice what’s called “evidence-based” medicine, which means we use the best evidence available to make decisions about treating individual patients.
The most desirable evidence comes from large, randomized, controlled trials in which subjects are randomly assigned to receive either medication or placebo, and effects are compared between the two groups. When studies are properly conducted, any differences in outcome between the two groups at the end of the study can be attributed to the drug. This is the “gold standard” of evidence, and it is what the Food and Drug Administration (FDA) requires for a drug to be sold in this country.
Once a medication is approved for a condition, physicians can prescribe it for any problem—which is a common practice for spinal-cord injury (SCI), because it’s so hard to get a sufficient number of study subjects with SCI to participate in a large-scale clinical trial. In SCI, we have to rely more on smaller clinical trials, and even a method that’s less scientific—“expert opinion”— which refers to physicians’ experiences using a medication and seeing how it affects patients. That’s why it’s important for you to tell your physician about the experiences you’re having with a medication. It may be our main source of information about whether a drug is effective or useful in SCI patients.
A side effect is any unintended consequence, usually undesirable, of a medication or therapy. Medications aren’t as specific as we’d like them to be. They act all over the body. When you take morphine for pain, the processes that work to relieve the pain also make you sleepy and can cause constipation.
All medications have side effects. Everyone reacts to medications a little differently, and each person must decide if the benefits of any particular one outweigh the undesirable consequences. Tell your doctor if the side effects are intolerable. Often you can switch to a slightly different drug.
Dealing with Drowsiness
Many medications used by people with SCI cause drowsiness, including antidepressants (Zoloft, Prozac, etc.), antihistamines (Benadryl, etc.), anxiolytics (Valium, Xanax, etc.), pain medications (Vicodin, Morphine, etc.), and spasmolytics (baclofen, tizanidine, etc.). What can you do to manage it?
Take the medication in the evening, when drowsiness will be more beneficial and less noticeable.
Talk to your physician about decreasing the dose. Meds are not “one size fits all.” Taking a slightly lower dose may still give the benefit without the side effect.
Discuss trying a different medication. If Prozac makes you sleepy, Paxil, a similar medication, may not have that effect.
For those with frequent problems sleeping, a first step is to practice the basics of good sleep hygiene, which consists of the following:
– Use your bed only for sleeping and sex. Don’t eat, watch TV, or read. This helps you associate your bed with sleeping.
– Go to bed and wake up at the same time each day. This can be tough, but it’s important if you want to regulate your sleep.
– Avoid naps during the day, and you’re likely to get more restful sleep at night.
– Make sure your bedroom is dark, quiet, and not too hot or cold.
– Avoid exercise and alcohol in the evening. Exercise stimulates your body and mind; alcohol, which may help you fall asleep, disrupts the sleep cycle and lowers sleep quality.
– Limit caffeine intake. Caffeine is the world’s most popular drug. Know the caffeine content of foods (like coffee, tea, energy drinks, cola, and chocolate) so you can limit it. People who are very sensitive to caffeine may need to stop all caffeine use after noon to achieve restorative sleep. Remember that even decaf coffee contains some caffeine.
If sleep problems persist, over-the-counter medications may help, such as Tylenol PM, Excedrin PM, and Sominex. These usually contain an antihistamine, which can cause urinary retention and constipation, so it is best to use them only for short periods.
If you still have trouble sleeping, talk to a physician about what might be interfering with sleep and to get prescription sleep medications, if necessary. Many sleep medications differ primarily in the way they are released in the body. Ambien, Lunesta, and Rozerem are good if you have trouble falling and staying asleep, because they stay in your body a little longer. Sonata stays in the body only four hours, which makes it a good choice if your problem is limited to falling asleep or if other medications cause morning grogginess.
If you are waking up in the morning and don’t feel rested, and if your bed partner is complaining about your snoring, you may have sleep apnea. Sleep apnea is when the soft tissue of the throat collapses and closes during sleep, resulting in frequent, brief pauses in breathing that deprive your brain of oxygen. When the carbon dioxide gets to a certain level in the bloodstream, the sleeper jolts awake, gasping for air, although he or she may not remember or be aware of this.
Much more common in SCI than the general population, sleep apnea is a serious condition that needs to be diagnosed and treated because it leads not only to daytime sleepiness but also to depression and other health problems. It can be diagnosed with a sleep study and treated with a variety of continuous positive airway pressure (CPAP) devices, usually a mask worn over the mouth and nose at night that keeps the air moving continuously so the airway can’t collapse.
Many of the medications/substances taken by people with SCI may make sleep apnea worse, including alcohol. (For more information about sleep apnea and SCI, go to http://sci.washington.edu/info/new sletters/articles/01win_sleep_apnea.asp.)
Coumadin (warfarin) is an anticoagulant medication frequently given to SCI and other immobilized patients in the hospital to treat deep-vein thrombosis, or a blood clot in the leg. Coumadin requires close monitoring by your physician or pharmacist because it has a narrow therapeutic range: too much or too little can cause serious, even life-threatening conditions.
Coumadin also interacts with vitamin K, so if you eat a lot of foods high in vitamin K—broccoli, green leafy vegetables, brussels sprouts—you may need higher doses of Coumadin. You don’t need to avoid these foods, but their consumption must stay at a consistent level while you take the drug.
Many people with SCI have pain that interferes with daily life. SCI pain tends to be complex and difficult to manage, and few effective treatments are available. People with SCI can have one or all of these types of pain:
Musculoskeletal pain comes from problems in the muscles, ligaments, and tendons, along with the bones. It often occurs in the neck, leg, or shoulder joint and is due to overuse (such as pushing a wheelchair) or an injury (e.g., a fall).
Visceral pain is located in the stomach and digestive areas and can be due to gastrointestinal problems that may require the attention of a physician.
Neuropathic is the most common type of pain in the SCI population and the hardest to treat. It is caused by abnormal signals from nerves that were damaged in the SCI. It is frequently described as burning, tingling, sharp, or shooting pain and is felt at or below the level of injury.
Because SCI pain often has multiple causes and influences, I recommend patients consider nonpharmacological treatments. You may need more than one thing to treat this kind of pain. In a 2004 study1 of nonpharmacological therapies for SCI pain—including acupuncture, distraction, deep breathing, hypnosis, massage, heat therapy, and exercise—subjects reported the greatest pain relief from heat therapy and massage.
Several types of medications are prescribed for neuropathic pain. Patients may need to try several before finding one that provides relief without causing too many side effects:
– Tricyclic antidepressants (such as amitriptyline and nortriptyline). These have been used the longest for neuropathic pain, and physicians usually try these first. Common side effects include dry mouth, constipation, and sedation (sleepiness).
– Pain medications (narcotics). Physicians often prescribe long-acting narcotics (such as MS Contin and Oxycontin) to keep a constant level of pain medication in your body, adding short-acting medication for breakthrough pain. Keep a record of the amount you’re using and share this with your doctor, who can evaluate whether you need a change.
– Anti-epileptic medications (such as gabapentin) are some of the more effective medications for neuropathic pain. A new medication in this class, Lyrica (pregabalin), has been helpful for neuropathic pain in diabetic patients but has not yet been studied extensively in people with SCI.
Most medications for neurogenic bladder are aimed at decreasing hyperactivity (spasticity) in the bladder. Common medications, and their side effects, are:
Alpha blockers, such as doxazosin and tamsulosin, can decrease blood pressure. If you are already taking blood-pressure medications, watch for dizziness, nausea, and sweating.
Anticholinergics, such as Ditropan (oxybutynin) and Detrol (tolterodine), tend to cause dry mouth. Detrol causes less dry mouth than Ditropan.
Many medications commonly used by people with SCI interact with the bowel program, causing constipation or diarrhea. Constipation may be caused or worsened by anticholinergics and narcotic pain medications, so it is important to use the lowest effective dose, to increase water and fiber intake, and to use a stool softener twice daily.
Diarrhea can occur when antibiotics have killed off all the “good bacteria” in the gut. Usually the diarrhea goes away after the antibiotic treatment ends, but it is important to be aware of a super infection called Clostridium difficile (C diff), in which the good bacteria is killed off but the bad bacteria increases aggressively. This super infection can develop at any time between first starting an antibiotic and two-to-six weeks after ending it.
So if you are having a lot of watery stools and really bad pain, you need to see a physician right away to get another antibiotic to clear it up. This diarrhea won’t go away on its own.
Antacids (Rolaids, Mylanta, Milk of Magnesia) may cause diarrhea because of the large quantities of magnesium they contain.
Complementary and Alternative Medicine (CAM)
When conventional medications don’t help with pain or other problems, some people turn to complementary or alternative treatments. Such treatments have not been thoroughly studied or FDA-approved, so safety and efficacy are questionable, and you are left alone to decide whether to use them.
Nonetheless, a large percentage of the American public use CAM therapies, so the National Institutes of Health (NIH) created the National Center for Complementary and Alternative Medicine (NCCAM) to provide information to consumers about different therapies, clinical trials, and important warnings (for example, kava, an herbal remedy used for sleep, has been associate with liver damage). (Contact NCCAM at http://nccam.nih.gov / 888-644-6226.)
Obtain objective information about the treatment. Talk to people who’ve recently tried it. Did they think it was worth it?
Find out about the practitioner’s training and certification.
Consider the costs—it may not be covered by insurance.
Discuss all treatments with your healthcare provider. Many have open minds about CAM, so you don’t need to hide it from them. You just need to make sure there won’t be interactions with other drugs or with food.
Avoid scams and rip-offs. Watch out for commercials that advertise “amazing” or “breakthrough” products, that claim the product has a “secret formula,” or that feature testimonials from thin, attractive, extremely satisfied customers (who are in fact paid actors).
Common CAM Therapies for SCI
Cranberry extract is used to promote urinary health on the theory it decreases bacteria in the urinary tract. Research evidence is conflicting; although it looks promising in studies in the general public, it is unclear what form or dose is effective.2,3 Studies in SCI populations found no improvement with cranberry extract.4,5 It works for some but not others. I believe it’s a reasonable thing to try. It’s not harmful. Recommended amounts are one tablet of AZO Cranberry Supplements two or three times a day or one eight-ounce glass of 100% pure (no sugar added) cranberry juice per day.
St. John’s Wort is a popular herbal treatment for depression, anxiety, and sleep disorders in the general population. Like cranberry, clinical trial results are very conflicting. I wouldn’t recommend this unless you talk with your doctor and you agree together to try it. The recommended dose is 300 mg, three times a day. Side effects include increased sensitivity to sunlight (watch for sunburn), dry mouth, and dizziness. St. John’s Wort interferes with many drugs—like antidepressants, Coumadin, and oral contraceptives—so it’s important to check with a physician or pharmacist before taking it.
Probiotics are beneficial or “friendly” live microorganisms (usually bacteria), similar to those found in the human gut, and available in dietary supplements or foods. Probiotics can be used to decrease diarrhea and restore healthy bacteria in the gut after taking antibiotics. The key is to choose quality products such as Culterelle® and Florastor®. If you want to use yogurt to restore beneficial bacteria, make sure it carries the symbol “live and active cultures.” Do not take probiotics within two hours of taking antibiotics. Possible side effects include stomach upset and bloating.
Discontinuing Medications Safely
While patients can always decide for themselves whether to take or continue a drug, some medications should not be stopped abruptly. In particular, antidepressants, baclofen, and benzodiazepines (Valium, etc.) carry a small risk of seizures if discontinued too rapidly. If you want to stop a medication, discuss it with your doctor, who will set up a schedule for you to taper off the drug safely.
Flu and Colds
The CDC (Centers for Disease Control) includes people with SCI on its list of high-risk individuals who are eligible (and encouraged) to get the influenza vaccine early. As a further precaution, caregivers and family members should also get the vaccine. Use the injection form only; FluMist is a live vaccine and carries a small risk of actually causing the flu.
If you do get a cold or the flu, make sure you read the labels of over-the-counter cold medications before taking them. Some of these contain three and four products that could interact with other medications you are taking. It can be very confusing, and the best person to ask is your pharmacist. Before buying the same products you’ve always used for colds, ask the pharmacist about new ones that might have fewer side effects.
Remember, pharmacists are part of your healthcare team. They are highly trained healthcare professionals, with a code of ethics and legal responsibilities, who assist individuals in making the best use of medications. We recommend you:
– Carry a list of your medications.
– Know the names of all your medications.
– Bring this list to all your appointments.
– Update the list regularly.
– Include all allergies and intolerances.
– Use only one pharmacy. Computers in different pharmacies are not connected and won’t know about medications you received elsewhere.
Don’t be afraid to ask your physician about the name, purpose, and side effects of your medications, even if he or she seems busy. Ask questions and be an active part of your healthcare team in order to make your medications work for you.
This article is an updated version of an SCI Forum Report available on the Northwest Regional Spinal Cord Injury System Web site and is used by permission. Visit http://sci.washington.edu.
(1) Norrbrink BC et al. “Non-pharmacological pain-relieving therapies in individuals with spinal cord injury: a patient perspective.” Complement Ther Med 2004;(4):189-97.
(2) Papas PN, Brusch CA,
Ceresia GC. “Cranberry
juice in the treatment of urinary tract infections.” Southwest Med. 1966 Jan;47(1):17-20.
(3) Avorn J, Monane M, Gurwitz JH, et al. “Reduction of bacturia and pyuria after ingestion of cranberry juice.” JAMA. 1994 Mar 9;271(10):751-4.
(4) Linsenmeyer TA, et al. “Evaluation of cranberry supplement for reduction of urinary tract infections in individuals with neurogenic bladders secondary to spinal cord injury. A prospective, double-blinded, placebo-controlled, crossover study.” J Spinal Cord Med 2004;(1):29-34.
(5) Waites KB, Canupp KC, Roper JF, et al. “Evaluation of 3 methods of bladder irrigation to treat bacturia in persons with neurogenic bladder.”
J Spinal Cord Med. 2006;29(3):217-26.