Just because a drug does not require a prescription does not make it safe for someone with LBD. While it is true that they are usually milder than prescription drugs, they can still cause problems. Many OTC cold and allergy drugs have benzodiazepines in their active ingredients. Less often, they have other seditives or anticholinergics. (See the July 17th blog for more about these dangerous drug classes.) Any of these drugs may trigger intense reactions, such as active dreams, hallucinations, delusions or general confusion. A person's first exposure to drug sensitivity may be with one of these OTC drugs.
I was diagnosed with RBD (Active Dreams) last fall. Sometimes I’d wake Jack but the dreams were mild. For years, I’ve used a mild antihistamine for spring allergies with good results. When they showed up last spring, I took my usual OTC allergy pill and went to bed. I had really scary dreams all night long and was so active that Jack escaped to the sofa. I didn’t take any more of that drug and the dreams reverted to their former benign state. –Shannon
As was the case for Shannon, reactions to these milder medications are seldom permanent. However, they can serve as a warning. People seldom know that they are sensitive to a drug until they take it and have a reaction--and then the damage may be done. Shannon and Jack have been forewarned. They can assume that she is also sensitive to other, more dangerous drugs and stay away from them, thus avoiding the problems they can cause.
With these drugs, the buyer takes on more responsibility. You don’t have a doctor telling you what to buy. You choose from a shelf filled with similar drugs and hope it is the best one for the problem. Add Lewy’s sensitivity issues, and your job gets even harder.
Reading labels is a must. Avoid any drugs with active ingredients on the benzodiazepine or anticholinergic lists. (Mostly these drugs will be benzodiazepines.)
An easy way to identify unsafe drugs: If you recognize an unsafe drug on the shelf, compare its active ingredients to those of other drugs. If the new drug has some of the same ingredients, it is likely unsafe too.
Check it out. Once you’ve chosen a drug, take it to the pharmacist and ask if it is compatible with Lewy body dementia. If the drug is for someone who only at risk for LBD, there may already be a Lewy-based sensitivity. It’s a good idea to check with the doctor as well to make sure that this drug is not only safe with Lewy but also with any other drugs the Lewy partner is taking.
Start with a smaller than normal dose. Very likely that will do the job and it is less apt to cause problems.
Stop the drug immediately if you see unwanted symptoms.
Keep lists of unsafe drugs handy. The list on LBDtools includes links to all the other sites. Keep the LBDA wallet card handy for your own reference as well as for doctors and nurses:
The authors of this blog are not physicians. They are caregivers and report what they and other caregivers have learned by experience, from physicians and from the literature. You should always talk with a physician about individual issues.