A few years ago, while I was at a family celebration, several people mentioned memory concerns to me.
Some were older adults concerned about the memory of their spouses. Some were adult children concerned about the memory of their parents. And a few were older adults who have noticed some slowing down of their own memory.
“But you know, nothing much that can be done at my age,” remarked one man in his eighties.
Wrong. In fact, there is a lot that can and should be done, if you notice memory or thinking changes in yourself or in another older adult. And you should do it because it ends up making a difference for brain health and quality of life.
First among them: identify medications that make brain function worse.
This is not just my personal opinion. Identifying and reducing such medications is a mainstay of geriatrics practice. Among other reasons, we do find that in some people, certain medications are causing memory loss symptoms — or other cognitive symptoms — to be worse.
And the expert authors of the National Academy of Medicine report on Cognitive Aging agree: in their Action Guide for Individuals and Families, they list “Manage your medications” among their “Top 3 actions you can take to help protect your cognitive health as you age.”
Unfortunately, many older adults are unaware of this recommendation. And I can’t tell you how often I find that seniors are taking over-the-counter or prescription medications that dampen their brain function. Sometimes it’s truly necessary but often it’s not.
What especially troubles me is that most of these older adults — and their families — have no idea that many have been linked to developing dementia, or to worsening of dementia symptoms. So it’s worth spotting them whether you are concerned about mild cognitive impairment or caring for someone with full-blown Alzheimers.
Every older adult and family should know how to optimize brain function. Avoiding problem medications — or at least using them judiciously and in the lowest doses necessary — is key to this.
And don’t give anyone a pass when they say “Oh, I’ve always taken this drug.” Younger and healthier brains experience less dysfunction from these drugs. That’s because a younger brain has more processing power and is more resilient. So drugs that aren’t such problems earlier in life often have more impact later in life. Just because you took a drug in your youth or middle years doesn’t mean it’s harmless to continue once you are older.
You should also know that most of these drugs affect balance, and may increase fall risk. So there’s a double benefit in identifying them, and minimizing them.
Below, I share the most commonly used drugs that you should look out for if you are worried about memory problems.
The Four Most Commonly Used Types of Medications That Dampen Brain Function
You can also watch a subtitled video version of this information below.
1. Benzodiazepines. This class of medication is often prescribed to help people sleep, or to help with anxiety. They do work well for this purpose, but they are habit-forming and have been associated with developing dementia.
- Commonly prescribed benzodiazepines include lorazepam, diazepam, temazepam, alprazolam (brand names Ativan, Valium, Restoril, and Xanax, respectively)
- For more on the risks of benzodiazepines, plus a handout clinically proven to help older adults reduce their use of these drugs, see “How You Can Help Someone Stop Ativan.”
- Note that it can be dangerous to stop benzodiazepines suddenly. These drugs should always be tapered, under medical supervision.
- Alternatives to consider:
- For insomnia, there is no easy and fast alternative. Just about all sedatives — many are listed in this post — dampen brain function. Many people can learn to sleep without drugs, but it usually takes a comprehensive effort over weeks or even months. This may involve cognitive-behavioral therapy, as well as increased exercise and other lifestyle changes. You can learn more about comprehensive insomnia treatment by getting the Insomnia Workbook (often available at the library!) or something similar.
- For anxiety, there is also no easy replacement. However, there are some drug options that affect brain function less, such as SSRIs (e.g. sertraline and citalopram, brand names Zoloft and Celexa). Cognitive behavioral therapy and mindfulness therapy also helps, if sustained.
- Even if it’s not possible to entirely stop a benzodiazepine, tapering to a lower dose will likely help brain function in the short-term.
- Other risks in aging adults:
- Benzodiazepines increase fall risk.
- These drugs sometimes are abused, especially in people with a history of substance abuse.
- Other things to keep in mind:
- If a person does develop dementia, it becomes much harder to stop these drugs. That’s because everyone has to endure some increased anxiety, agitation, and/or insomnia while the senior adjusts to tapering these drugs, and the more cognitively impaired the senior is, the harder it is on everyone. So it’s much better to find non-benzo ways to deal with anxiety and insomnia sooner, rather than later. (Don’t kick that can down the road!)
2. Non-benzodiazepine prescription sedatives. By far the most commonly used are the “z-drugs” which include zolpidem, zaleplon, and eszopiclone (brand names Ambien, Sonata, and Lunesta, respectively). These have been shown in clinical studies to impair thinking — and balance! — in the short-term.
- Some studies have linked these drugs to dementia. However we also know that developing dementia is associated with sleep problems, so the cause-effect relationship remains a little murky.
- For alternatives, see the section about insomnia above.
- Occasionally, geriatricians will try trazodone (25-50mg) as a sleep aid. It is thought to be less risky than the z-drugs or benzodiazepines. Of course, it seems to have less of a strong effect on insomnia as well.
- Other risks in aging adults:
- These drugs worsen balance and increase fall risk.
3. Anticholinergics. This group covers most over-the-counter sleeping aids, antihistamines such as Benadryl, as well as a variety of other prescription drugs. These medications have the chemical property of blocking the neurotransmitter acetylcholine. This means they have the opposite effect of an Alzheimer’s drug like donepezil (brand name Aricept), which is a cholinesterase inhibitor, meaning it inhibits the enzyme that breaks down acetylcholine.
You may have heard that “Benadryl has long-term side effects on the brain.” That’s because diphenhydramine (brand name Benadryl) is strongly anticholinergic.
A 2015 study found that greater use of anticholinergic drugs was linked to a higher chance of developing Alzheimer’s, and a 2021 Cochrane review found that these drugs may increase the risk of cognitive decline or dementia.
Drugs vary in how strong their anticholinergic activity is. Focus your energies on spotting the ones that have “high” anticholinergic activity. For a good list that classifies drugs as high or low anticholinergic activity, see here. Or, you can look up any of your medications using this handy “anticholinergic burden scale” calculator.
I reviewed the most commonly used of these drugs in this video:
I also cover them in an article here: “7 Common Brain-Slowing Anticholinergic Drugs Older Adults Should Use With Caution.” Briefly, drugs of this type to look out for include:
- Sedating antihistamines, such as diphenhydramine (brand name Benadryl).
- The “PM” versions of over-the-counter analgesics (e.g. Nyquil, Tylenol PM); the “PM” ingredient is usually a sedating antihistamine.
- Medications for overactive bladder, such as the bladder relaxants oxybutynin and tolterodine (brand names Ditropan and Detrol, respectively).
- Note that medications that relax the urethra, such as tamsulosin or terazosin (Flomax and Hytrin, respectively) are NOT anticholinergic. So they’re not risky in the same way, although they can cause orthostatic hypotension and other problems in older adults. Medications that shrink the prostate, such as finasteride (Proscar) aren’t anticholinergic either.
- Medications for vertigo, motion sickness, or nausea, such as meclizine, scopolamine, or promethazine (brand names Antivert, Scopace, and Phenergan).
- Medications for itching, such as hydroxyzine and diphenhydramine (brand names Vistaril and Benadryl).
- Muscle relaxants, such as cyclobenzaprine (brand name Flexeril).
- “Tricyclic” antidepressants, which are an older type of antidepressant which is now mainly prescribed for nerve pain, and includes amitryptiline and nortriptyline (brand names Elavil and Pamelor).
There is also one of the popular SSRI-type antidepressants that is known to be quite anticholinergic: paroxetine (brand name Paxil). For this reason, geriatricians almost never prescribe this particular anti-depressant.
For help spotting other anticholinergics, ask a pharmacist or the doctor, or check your medications with this handy “anticholinergic burden scale” calculator.
Alternatives to these drugs really depend on what they are being prescribed for. Often non-drug alternatives are available, but they may not be offered unless you ask. For example, an oral medication for itching can be replaced by a topical cream. Or the right kind of stretching can help with tight muscles.
Aside from affecting thinking, these drugs can potentially worsen balance. They also are known to cause dry mouth, dry eyes, and can worsen constipation. (Acetylcholine helps the gut keep things moving.)
4. Antipsychotics and mood-stabilizers. In older adults, these are usually prescribed to manage difficult behaviors related to Alzheimer’s and other dementias. (In a minority of aging adults, they are prescribed for serious mental illness such as schizophrenia. Mood-stabilizing drugs are also used to treat seizures.) For dementia behaviors, these drugs are often inappropriately prescribed. All antipsychotics and mood-stabilizers are sedating and dampen brain function. In older people with dementia, they’ve also been linked to a higher chance of dying.
- Commonly prescribed antipsychotics are mainly “second-generation” and include risperidone, quetiapine, olanzapine, and aripiprazole (Risperdal, Seroquel, Zyprexa, and Abilify, respectively).
- The first-generation antipsychotic haloperidol (Haldol) is still sometimes used.
- Valproate (brand name Depakote) is a commonly used mood-stabilizer.
- Alternatives to consider:
- Alternatives to these drugs should always be explored. Generally, you need to start by properly assessing what’s causing the agitation, and trying to manage that. A number of behavioral approaches can also help with difficult behaviors. For more, see this nice NPR story from March 2015. I also have an article describing behavioral approaches here: 7 Steps to Managing Difficult Dementia Behaviors (Safely & Without Medications).
- For medication alternatives, there is some scientific evidence suggesting that the SSRI citalopram may help, that cholinesterase inhibitors such as donepezil may help, and that the dementia drug memantine may help. These are usually well-tolerated so it’s often reasonable to give them a try.
- If an antipsychotics or mood-stabilizer is used, it should be as a last resort and at the lowest effective dose. This means starting with a teeny dose. However, many non-geriatrician clinicians start at much higher doses than I would.
- Other risks in older adults:
- Antipsychotics have been associated with falls. There is also an increased risk of death, as above.
- Caveat regarding discontinuing antipsychotics in people with dementia: Research has found that there is a fair risk of “relapse” (meaning agitation or psychotic symptoms getting worse) after antipsychotics are discontinued. A 2015 study of nursing home residents with dementia concluded that antipsychotic discontinuation is most likely to succeed if it’s combined with adding more social interventions and also exercise.
- You can learn more about medications to treat dementia behaviors in this article: “5 Types of Medication Used to Treat Difficult Dementia Behaviors“
A Fifth Type of Medication That Affects Brain Function
Opioid pain medications. Unlike the other drugs mentioned above, opioids (other than tramadol and meperidine) are not on the Beer’s list of medications that older adults should avoid. That said, they do seem to dampen thinking abilities a bit, even in long-term users. (With time and regular use, people develop tolerance so they are less drowsy, but seems there can still be an effect on thinking.) As far as I know, opioids are not thought to accelerate long-term cognitive decline.
- Commonly prescribed opiates include hydrocodone, oxycodone, morphine, codeine, methadone, hydromorphone, and fentanyl. (Brand names depend on the formulation and on whether the drug is mixed with acetaminophen.)
- Tramadol (brand name Ultram) is a weaker opiate with weaker prescribing controls.
- Many geriatricians consider it more problematic than the classic Schedule II opiates listed above, as it interacts with a lot of medications and still affects brain function. It’s a “dirty drug,” as one of my friends likes to say.
- Alternatives depend on what type of pain is present. Generally, if people are taking opiates then they have pain that needs to be treated. However, a thoughtful holistic approach to pain often enables a person to get by with less medication, which can improve thinking abilities.
- For people who have moderate or severe dementia, it’s important to know that untreated pain can worsen their thinking. So sometimes a low dose of opiate medication does end up improving their thinking.
- Other risks in older adults:
- There is some risk of developing a problematic addiction, especially if there’s a prior history of substance abuse. But in my experience, having someone else — usually younger — steal or use the drugs is a more likely problem.
Where to Learn About Other Drugs That Affect Brain Function
Many other drugs that affect brain function, but they are either not used as often as the ones above, or seem to affect a minority of older adults.
Notably, there has been a lot of concern in the media about statins; these are commonly used cholesterol-lowering medications, such as simvastatin and atorvastatin (brand names Zocor and Lipitor, respectively).
But this concern seems to be unfounded: a meta-analysis published in 2015 could not confirm an association between statin use and increased cognitive impairment. In fact, a 2016 study found that statin use was associated with a lower risk of developing Alzheimer’s disease.
This is not to say that statins aren’t overprescribed or riskier than we used to think. And it’s also quite possible that some people do have their thinking affected by statins. But if you are trying to eliminate medications that dampen brain function, I would recommend you focus on the ones I listed above first.
Personally, I do not worry about the cognitive effect of statins; I feel my patients are much more likely to be harmed by regularly using something like Benadryl, which is anticholinergic.
For a comprehensive list of medications identified as risky by the experts at the American Geriatrics Society, be sure to review the most recent Beers Criteria.
You can also learn more about medications that increase fall risk in this article: 10 Types of Medications to Review if You’re Concerned About Falling.
What to Do if You or Your Relative Is On These Medications
So what should you do if you discover that your older relative — or you yourself — are taking some of these medications?
If it’s an over-the-counter anticholinergic, you can just stop it. Allergies can be treated with non-sedating antihistamines like loratadine (brand name Claritin), or you can ask the doctor about a nasal steroid spray. “PM” painkillers can be replaced by the non-PM version, and remember that the safest OTC analgesic for older adults is acetaminophen (Tylenol).
If you are taking an over-the-counter sleep aid, it contains a sedating antihistamine and those are strongly anticholinergic. You can just stop an OTC sleep aid, but in the short term, insomnia often gets worse. So you’ll need to address the insomnia with non-drug techniques. (See here for more: 5 Top Causes of Sleep Problems in Aging, & Proven Ways to Treat Insomnia.)
You should also discuss any insomnia or sleep problems with your doctors — it’s important to rule out pain and serious medical problems as a cause of insomnia — but be careful: many of them will prescribe a sleeping pill, because they haven’t trained in geriatrics and they under-estimate the risks of these drugs.
If one or more of the medications above has been prescribed, don’t stop without first consulting with a health professional. You’ll want to make an appointment soon, to review the reasons that the medication was prescribed, alternative options for treating the problem, and then work out a plan to reduce or eliminate the drug.
I explain how to find a geriatric doctor near you here: How to find a geriatrician — or a medication review — near you.
To prepare for the appointment, try going through the five steps I describe in this article: “How to Review Medications for Safety & Appropriateness.”
I also recommend reviewing HealthinAging.org’s guide, “What to Ask Your Health Provider if a Medication You Take is Listed in the Beers Criteria.”
Remember, when it comes to maintaining independence and quality of life, nothing is more important than optimizing brain function.
We can’t turn back the clock and not all brain changes are reversible. But by spotting problem medications and reducing them whenever possible, we can help older adults think their best.
Now go check out those medication bottles, and let me know what you find!
We are at 200+ comments, so comments on this post have been closed. If you have a question about your medications, we recommend consulting with your usual health provider or discussing with a pharmacist.
Amy says
Dr. Kernisan,
Very interesting/scary article.
I am 52 years old and have taken Doxepin, 25 mg. for 22 years. Initially it was the only medication that somewhat relieved chest and throat constriction after being poisoned by inhalation of wood stain. It helped me sleep so well, I became a bit addicted, to be quite truthful, though I would take “vacations” from it for a week or 2. I have now stopped for good.
I am terrified that I have done irreparable damage and am doomed to this frightening disease. I have spoken to my PCP about this, but his contention is that this is quite a low dose, but even so, the years of cumulative use still scares me. What is your opinion?
I know I can’t erase the past, but do you know if there are current studies being conducted to determine the reversability or other possibilities to negate the effects?
I work in healthcare and have direct experience working with people suffering with dementia, and I do hope to avoid this fate.
Many thanks,
Amy
Leslie Kernisan, MD MPH says
Sorry to hear that you are so worried about this.
The past is past. What is most important is that you have stopped taking this medication now. For the future, what’s important is that you do what you can to optimize your brain health, including avoiding/minimizing anticholinergics. I have a list of recommendations here: How to Promote Brain Health.
I don’t think anyone has studied how to reverse or negate anticholinergics, so you should focus on proven ways to reduce the risk of dementia, and I describe them in the brain health article. Do try to not stress or worry too much about dementia in the future…that is unlikely to improve your brain health and might possibly worsen it. Do what you can and then accept that the future is unknown and difficult diseases — such as dementia — may or may not happen. Good luck!
Any says
I am just seeing your response, and wanted to thank you for taking time out of your busy schedule to address my concerns.
Thank you once again!
Amy says
A follow up question if I might…The study that I am familiar with linking Doxepin and dementia states the cohort studied were all over age 65. Do you know if these folks had been taking these drugs earlier in their life as well as post age 65? I know they had a look back period of 10 years prior (age 55), but didn’t know if they had been using the offending drugs prior to age 55.
Thanks again!
Leslie Kernisan, MD MPH says
As far as I know, most research on anticholinergics and cognitive impairment has been done in older adults, and I’m not aware of research done on people younger than 55.
If you were regularly taking anticholinergics for a while, then you may have slightly increased your risk of dementia. But since dementia is pretty common in people who live to a ripe old age, most people have a fair risk of developing it whether or not they took anticholinergics.
So really…we should all be somewhat concerned that we might get dementia, and we should all find ways to make peace with this possibility (preferably while planning ahead for the possibility, as that could really help us and our families should we develop dementia. Otherwise, we should all do what we can to optimize and maintain our brain health. Good luck!
Cathy says
My elderly father (92), was tragically awarded guardianship over my elderly Mom (90). My Mom has had short term memory issues for some time and yes, she took Xanax because it is very difficult living with my Dad. Right before my Dad got guardianship, he committed my Mom to a Memory Care facility for elderly persons with advanced dementia. My Mom DOES NOT HAVE ADVANCED DEMENTIA!! She always responds to memory training, which my Dad never provided for her but which she got every time she broke a hip (she’s broken both!). Now she’s a prisoner on a second floor of this (for her) horrible place and paces all night trying to get out. Her doctor is still giving her XANAX!!! I, the daughter, have no rights in this situation, but this is abuse! How can I make it clear – to whom? a judge? how? – that XANAX is destroying her brain and having her take it is abuse.
I have communicated to the guardian ad litem that Xanax causes memory loss and that I suspected that my Mom does not have dementia (because she is capable of forming new synapses) but the GAL ignored my statements.
What can I do? Does my Mom have the right not to be treated with a brain-damaging drug? Does she have any rights in this situation? Do I?
Thanks….
Leslie Kernisan, MD MPH says
This sounds like a difficult situation. I think you will need to consult an elderlaw attorney in the state where your mother is located. Before you do this, you can also try to contact your local Area Agency on Aging; they may be able to point you towards less expensive local resources available to assist with your concerns. However, I believe that if a guardian has been appointed by the court system, then you will probably need to work through whichever system your state has for holding guardians accountable for health decisions.
In terms of your mother receiving Xanax, it’s hard to say whether this is grossly inappropriate medical care or not. Benzodiazepines such as Xanax do increase the risk of falls and confusion. However, in individual cases, the risks always have to be balanced against likely benefits. For instance, some people really do have debilitating anxiety or agitation when they don’t take this type of medication. Your mother’s providers also have to consider the risks and challenges of stopping her Xanax; this can be a tricky process in someone who has been taking Xanax for a while.
In short, if you are concerned about your mother’s health care and you are not her guardian or durable power of attorney, you will need to consult with an elder law attorney. An attorney familiar with elderlaw in your mother’s state will be able to advise you as to your options. Good luck!
Lisa says
Today for the first time I heard that Dyphenhedramine is linked to a large (I read 54% on another website) increase in dementia.
Not only do I have a strong family history of dementia (my maternal grandmother, maternal aunt, and now, it appears, my mom), but of course I’ve also been taking OTC Dyphenhedramine as a sleep aid for years now (at least 8 or 9 I think.) And yes, I know they are only supposed to be for short term use, but perhaps the 27 years of smoking shows that I’m not always the first person to heed such warnings.
So…I literally just stopped taking it tonight. I also quit smoking 9 years ago (though still use the nicotine replacement gum), exercise regularly, eat really well, and now, when work drives me crazy, I try to remember that they also link complex task engagement to some brain protection (though this link does not in any way appear to be as clear as the use of Dyphenhedramine, a “class 3” anticholinergic, to increased risk of developing dementia.)
Besides the above, is there any (proven) way I might encourage acetylcholine activity in my brain? I am in my mid-50’s, pretty active, low BMI.
thanks. I’m trying not to freak out too much, but 54%….is a big number.
Leslie Kernisan, MD MPH says
First and foremost, congratulations on quitting smoking nine years ago and on now taking action to identify and reduce medications that might be affecting your brain. Both are good steps to take, to protect your brain health.
The 54% statistic probably comes from this article: Cumulative Use of Strong Anticholinergic Medications and Incident Dementia. The Harvard Health blog has a good article summarizing this research here: Common anticholinergic drugs like Benadryl linked to increased dementia risk.
Research does suggest that chronic use of anticholinergic drugs increases dementia risk, but I would encourage you to not think too much about that 54% statistic. What’s done is done, now what is most important is taking care of your brain the best you can from now on.
I don’t know that there’s any way to encourage acetylcholine activity in the brain. Medications like donepezil (brand name Aricept) are prescribed to people with Alzheimer’s for this purpose, but they have not shown to help in mild cognitive impairment and so I would not recommend that someone in your situation consider such a medication.
Instead, I would encourage you to consider a more comprehensive approach to maintaining brain health. I list several ways to do this here: How to Promote Brain Health.
For you in particular, you might start by working on your sleep and your stress. Some approaches, such as cognitive behavioral therapy and meditation, can help with both.
I also think this report from the National Academies of Medicine is an excellent resource: Cognitive Aging: Progress in Understanding and Opportunities for Action. Be sure to take a look at their action guide for individuals and families; it’s short and filled with good practical advice.
Good luck!
Lisa says
Thank you! I will check the article out. And so far (2 nights) I’ve not actually had that much trouble sleeping. Can’t decide if that’s good or bad, bc it’s possible I took that silly medication for years needlessly…
However, about 2 months I discovered blue-light blocking glasses (9$ on Amazon!) I spend lots of time on the computer to wind down when I get home, and these glasses seem to really help with the sleep issue. So, possibly no need for other interventions.
Leslie Kernisan, MD MPH says
That’s great that so far you aren’t having trouble sleeping!
Yes, there is research suggesting that exposure to computers and smartphone screens and tablets can interfere with sleep. I personally have installed a red-filter program on all my devices. I use F.lux on my computer and Twilight on my phone and tablet. But the glasses can be a good solution too.
Chris Rieser says
Is topical Benadryl safe to use? My thought is that is localized and doesn’t get to the brain but am I wrong? Hydrocortisone doesn’t seem to work as well for me when I have insect bites or a rash.
Leslie Kernisan, MD MPH says
Yes, a topical preparation of Benadryl is much better when it comes to brain health. It is indeed localized.
Liz says
I am 64 years old. I took ditropan for a number of years until I switched to mybetriq about 5 years ago. Would there be last effects of the ditto pan on my brain?
Leslie Kernisan, MD MPH says
Ditropan (oxybutynin) is a medication for overactive bladder which is has strong anticholinergic activity. Once you stop the medication and it has cleared out of the body, it will no longer be directly affecting the brain.
However, research suggests that past use of anticholinergic drugs does increase the risk of developing dementia. This seems to be related to the cumulative amount of anticholinergic drugs a person has taken:
Cumulative Use of Strong Anticholinergic Medications and Incident Dementia
Generally, if people are worried about their brain health or brain function, I recommend that they not worry too much about past medications, and instead focus on making sure that they are NOW doing everything possible to optimize their brain health. This includes:
– making sure they check their current medications, and minimize anticholinergics and others known to be risky for brain health
– avoid vitamin B12 deficiency
– manage and minimize sleep deprivation, chronic stress, depression, and anxiety, using non-drug methods as much as possible
I provide a longer list of recommendations for optimizing brain health here: How to Promote Brain Health: The Healthy Aging Checklist Part 1
Michele Olson says
I am 60 and have been taking oxtbutynin for 3 years and have a mci diagnosis. Are there any medications for overactive bladder that are not anticholineric ?
Leslie Kernisan, MD MPH says
Mirabegron (brand name Myrbetriq?) is a drug approved in 2012 which is not anticholinergic. I don’t have much personal experience with it, as it is new.
All the other drugs are anticholinergic. Oxybutynin is one of the older ones; darifenacin and trospium are newer ones that supposedly don’t cross the blood-brain barrier as much, so it’s been hypothesized that they might be less risky. Oxybutynin also seems to cause fewer anticholinergic side-effects when it’s used as a patch or gel.
If you have overactive bladder, it might be a good idea to discuss non-drug treatments and make sure you have given them a good try. They include addressing any medical conditions (or medications) that can aggravate urge incontinence, pelvic floor exercises, bladder training, and treating vaginal atrophy (if you have any) with estrogen. You can learn more about these approaches here:
Practical aspects of lifestyle modifications and behavioural interventions in the treatment of overactive bladder and urgency urinary incontinence
Good luck!
Greg says
Very interesting article. Unfortunately in the case of my mom who is getting up there in years, she has a rare disease that has required a mixture of drugs to help her with a great amount of foot pain, and other side effects, to avoid pain, bring her into more medications. She and I both know that this affects her cognitive ability and she has built up these medications and the need for them for her rare – burning foot syndrome disease. Check out the list of medications she has to take, and notice almost all of them are on the list as being a risk and problem for Alzheimer’s or dementia. She takes Fentynl pain patches, Norco, Oxybutinin (to reduce the need to urinate, as more bathroom trips cause more pain), Ativan – to calm down the nerves in her feet, and classic users of Ativan use it for mental conditions, but it’s usually limited to a months dose, and Cymbalta. The Opiods are required to keep her pain down to an average level of 7 instead of 10 flares. She still gets ten flares, swelling of the feet and bleeding from almost any moderate use. She also occassionally takes pills like an antihistimine at night Benadryl, which is bad of course and another risk. And takes blood pressure medication, perhaps the only pill not on the list. And takes Flexerol sometimes which is also on the list. She has also taken other pills very short term. With her condition, I’m under the impression her nerves were damaged. We know it was caused by symptoms related to nerve medication. Xanax caused her condition to flare in the 90’s but it didnt’ cause pain, just heat and some swelling. Risperdol caused permanent flares and damage which has happened since 2002. It totally took her out of any chance of a normal type of life. What is interesting is that she worked through many medications to get to this point with this mixture to be a baseline that helps her, but the side effects of course can be difficult. It’s actually amazing, probably due to pain and opiod tolerance how much she can take, but she is down from higher doses. As a senior she takes half doses, which makes the doses hit her system with less impact and makes her feel that she isn’t as loopy. Also some unconventional things we have tried showed some promise in masking her rare burning feet symptoms. What is really interesting but not totally confirmed and somewhat questioned by doctors is that some people, and this may be rare and extremely limited to a few people, but some people seem to have a rare case of “burning foot syndrome happen”, when they take pills directed toward the brain and Seretonin antagonists. Risperdol is an antagonist to many of the Seretonin 5ht receptors and blocks action from these, calming down or inhibiting those nerves. It’s an irreversible Antagonist for 5HT-7 (Serotonin) receptor which can control blood flow and temperature or thermal regulation. Ironically some rare and seldom tried medications like 0.5% Ketamine/1%amitriptyline compounded creams which are mixed at low doses and might help some have potentially dangerous components as well. If mySeretonin theory is really correct for these rare cases. Some reported the “mixture” of cream which helped treat some burning foot patients caused a heating up for five or ten minutes of the feet when the cream was first applied before the numbness or “high” from the ketamine affected the feet and relieved pain. Mom had reactions which matched the reactions of some side effects of amitriptyline in the cream. When we had a cream prescribed without the amitriptylin, those side effects went away. The ketamine cream caused other “weakness” but reduced her opiod dependence and caused a kind of reset making the opoid drugs more effective for up to three months after a 5 day or week trial of the cream. A very small percentage of people have reported amitriptyline as causing mild or more moderate burning foot syndrome to occur in their feet. I found on Wikepedia that amitriptyline is a antagonist for almost all the same nerve locations on the 5HT (Serotonin) sites that Risperdol affects. Except Risperdol is a irreversable antagonist to 5HT7 which amitriptyline may not be. Recently on a “burning foot” patient board (on ben’s Friends) one new person to the board reported problems related to a TriCyclic Antidepressent as well. We know from our experience which is rather unique and rare that Risperdal caused or “triggered” her permanent disability. What is strange of course when I mention the 5HT antagnist issues to one of our doctors is he said, well maybe it caused it, but it didn’t cause it to happen all over her body, mostly affecting her feet. (although she has flares and heat in other parts of her body without pain.) So he wondered why it didn’t affect her entire body and said, “maybe it affected her by triggering a disease she was prone to have.” In effect saying it affected her, but wasn’t a cause as much as a trigger for something she was genetically predisposed to, at least that’s the way I took it.
In any event a lot of these pills have rare side effects and they will be listed in the fine print. My thoughts, but this is from an extremely rare or seemingly rare condition, is if you have burning feet sensation, even mild from tricyclic antidepresents, by all means work on staying away from them and avoid Risperdone, because it may be much worse.
This of course is a really bad and rare situation, where we have an old lady isolated by extreme pain, and limited in her physical movement. The pills a very strong and rare mixture, are required to keep the pain to a kind of low level torture, but flares will still happen. And unfortunately there has been little in the way of an alternative. We have tried some odd things, like Ketamine cream and even temporary nerve blocks of the tibial nerve using an injection to numb the site as if surgery was going to happen. That to test to see if a more permanent nerve block could work, and this rare and for this rare condition. Both Ketamine and the nerve block worked. The nerve blocks were temporary. The ketamine had other side effects. The only other thing for use is possibly something like oral lidocaine mexiletine, which helps some with the “genetic” version of the disease. However that is a heart risk so we haven’t tried it, as we can’t get her off the other drugs long enough to do that risky test.
Believe it or not environmental chilling is the only thing that helps the pain, although the drugs can help. The situation for this rare condition (doctors often go their entire practice without seeing one case) is one of heavy duty drugs. Some people who have these kinds of “burning foot” problems, have it due to other rare diseases and may find relief when the rare disease is fixed. But others have it and have little or no releif. When some pills are used in a mixture, for example the muscle relaxer Flexerol was mentioned and she has taken that for another injury, those mixed with other drugs, Cymbalta, and DMX cough syrip (Tussin DM) can cause Serotonin syndrome, which is a symptom that can be difficult to tell apart from other Neuropathy (nerve damage). In the case of my mom at times the mixture of a muscle relaxant in the mix (to treat a different injury), caused some temporary cold and numbing symptoms to briefly appear in the feet, which made them cold and appear more like Raynauds syndrome, which can have numbness and cold white blanched skin patches, so some can have hot and cold symptoms. But with the rare burning foot syndrome, one will often just have hot or any activity trigger a flare, in the worse cases they are completely painful, about the equivalent to the worse pain you could get in any one location. And those with the worse case versions have really almost no mobility at all. And they just have an unending flow of drugs, to try to cope with the pain. Although they are stuck with the drugs, the cognitive and all other side effects can come into play and be a risk.
Sorry if I ended up talking so much about my mom’s condition. It’s rare and requires a lot of drugs and she ends up losing a lot of sleep which causes sleep deprivation as well. She also takes blood pressure medication. And when in a hospital visit she lost so much sleep she had very bad symptoms, also being off some of the medication (Ativan withdrawal) and this gave her delirium. One of the problems with seniors with this many problems and taking this much medication, is delerium, cognative issues from side effects and sleep deprivation can be “so much like dementia” it can be ruled as that as a kind of “catch all”. It may be a kind of subtle difference in diagnosis, but the effects can often practically be the same. My mom can slip into a delerium like state, for example lose a lot of sleep and then almost fall into narcoleptic like sudden sleep states into REM sleep. This probably from lack of sleep and drug side effects. Regardless of the diagnosis and the subtleties it can often be “if it looks like a duck, it’s a duck” mentality in the quick diagnostics that are done.
It’s really hard to be dealing and living with a couple of parents with advanced age and health problems. It’s hard to explain the general decline that people have, which may make them more messy just due to health problems of age. My dad in his early 90’s started to lose a lot of capability and aged from a person who acted like he was in his 70’s to someone in his 90’s almost overnight. He has some of the signs of cognitive and memory decline especially. So he’s showing that he can be slipping down that slope. But we are also heavily involved with trying to help my mother who is younger and an old guy in his 90’s and a son can’t barely keep up with her demands. (When you have no schedule due to pain, strange environmental demands to chill the feet, lack of movement, isolation, and people who just don’t understand how hard aging can be, it can be a lonely and difficult life.)
It’s a challenge to balance their autonomy with trying to take over and do more things. How much do you let the aging parent age and decline, because they have some of that right and want to be independent, and when do you step in as a child and try to take over more. With very long illnesses like mom’s the needs she presents are just unsustainable financially as well. You can’t hire aids and nursing homes can deal with the strange demands of a very strange and rare disease. So for some of us, the road is very long indeed. (Sorry to type such a long and rather depressing report.)
Leslie Kernisan, MD MPH says
Wow, that is a quite a situation your mother is in. As you point out, her foot pain is unusual.
But the other issues you describe, including the strain of helping older parents and the catch-22s re medications and their side-effects…those are unfortunately quite common.
Sounds like you are on the right track, in that you have been researching your mom’s condition and following things very closely. Your parents are lucky to have your help.
Re taking care of yourself, managing the autonomy-vs-helping dilemmas, and the financial challenges: I would encourage you to regularly connect with other family caregivers. Don’t let yourself get too isolated or ground down.
Gerald Tanton says
The foot pain is probably erythromelalgia. I have it and treat it with cymbalta. It helps doesn’t fix.
Leslie Kernisan, MD MPH says
Rare conditions are tricky. There is more on erythromelalgia here: Incidence of erythromelalgia: a population-based study in Olmsted County, Minnesota
Pats says
Would acupuncture help a condition such as this?
Leslie Kernisan, MD MPH says
This would be a question to ask of a specialist in this condition.
Moe says
Dr. Kernisan,
I’m 88 male and have stage IV carcinoma that is being treated with immunotherapy . I was also recently (12 months ago) diagnosed to be having Parkinson’s and have been placed on sinemet 4 tabs every 4 hours during day and nothing at night. I also take 1 cap Tamsolusin at night for prostate. I have lately begun experiencing problems relating to short memory losses that I never had before. Which of my mess do you suppose could be causing my memory loss problem. I know and understand that age is akways a factor but I had been fairly healthy before being diagnosed with a kidney related uritheleal carcinoma almost a year ago that metastasized after removal of affected kidney.
Thanks and most respectfully,
~M
Leslie Kernisan, MD MPH says
Sorry to hear of your health difficulties.
Medications are a common cause or contributor to memory difficulties, but there are also many other potential causes, especially given your age and current health problems. So if you are concerned, I would recommend that you bring it up with your doctor. Your neurologist for Parkinson’s might be a good place to start.
You may also find the following post helpful, as it explains how memory complaints should be evaluated: How to Diagnose & Treat Mild Cognitive Impairment
Jan says
I am 62 yrs old and take Gabepentin 900 mg per day and a low dose of Premarin. I was taking a generic form of Lipitor. Started having memory problems and dr pulled me off cholesterol meds for 6 months with instructions to walk. Can’t get motivated to walk and 6 months about up. Have to go back. Worried about having to go back in it. Does name brand Lipitor cause memory problems? Also have been worrying about everything and have gained a bunch of weight. Can’t get motivated to do much of anything. I’m driving my husband crazy. Your thoughts please
Leslie Kernisan, MD MPH says
If you’ve been concerned about memory problems, then I would recommend you talk to your doctor about getting a more in-depth evaluation to assess your thinking and also assess you for other problems that can cause the symptoms you describe. For instance, for the symptoms you describe could be caused by thyroid problems, other hormonal imbalances, depression, and many other conditions. I explain how we assess memory and thinking concerns in this article: What Can I Do to Treat Mild Cognitive Impairment?
Re your Lipitor, if you don’t feel comfortable going back on this medication, I recommend you discuss this with your doctor. Statins do reduce the risk of having cardiovascular events. But if you want to get your other symptoms sorted out first, you are probably not placing yourself at very high risk by taking another 6 months off the statin while you get the rest of your health concerns addressed.
You should also make sure you understand what is the likelihood that taking a statin will prevent a major cardiovascular event. (See this NYTimes article on the “number needed to treat” for more info.) For instance, in people who have already had a heart attack (which means they are at high risk), studies suggest that one person in 40 is helped by taking a statin for 5 years.
Good luck, I hope you start finding some answers soon.
kathrin Baldwin says
I take Namenda XR for dementia is this what I am to take 2 help with my memory
Leslie Kernisan, MD MPH says
Namenda is the brand name for memantine. This is a drug that is FDA-approved for the treatment of “moderate-to-severe” Alzheimer’s disease. It is often prescribed to people with earlier dementia or even mild cognitive impairment, but there’s really very little research evidence that it’s helpful in early stages. There has also been some researching suggesting it might help with vascular dementia, but again, the research is not very impressive.
I explain the drugs FDA-approved for the treatment of dementia here: 4 Medications to Treat Alzheimer’s & Other Dementias: How They Work & FAQs.
Honestly if you are looking to optimize your brain health and brain function, I think it’s more important to avoid certain types of medication and then to really focus on a healthy lifestyle and avoiding brain stressors such as anxiety, insomnia, and so forth. I explain these approaches here:
How to Promote Brain Health
How to Diagnose & Treat Mild Cognitive Impairment
Good luck!
Carol says
I’m trying to get off Temazepam 15mg prescribed for me by a sleep specialist for restless leg syndrome and periodic limb movements. I also had long term pain from sciatica and persistent insomnia for years. I’m now 73 and want to stay away from the benzodiazepines. Much of my difficulty is fear of not sleeping if I give up the Temazepam. CBT might help but where can I get help?
Leslie Kernisan, MD MPH says
CBT is now available online — for a fee — through two clinically proven programs that I know of: Sleepio and SHUTi. You can also ask your doctor for help finding an in-person therapist.
Regarding your sleep difficulties and restless leg syndrome (RLS): are you still seeing the sleep specialist regularly? If you haven’t done so recently, it might be worthwhile to review the state of this condition and your options for managing it. You’ll want to make sure the diagnosis is correct/still relevant, and discuss all available treatment options that might help. You may want to spend some time learning more about RLS beforehand; I don’t know much about it personally but you can learn a lot from reputable health information websites (generally run by academic medical centers or government agencies) or if you really want to dig in, you can purchase a one-week or one-month subscription to UptoDate.com, which is widely used by practicing doctors and summarizes the latest known information on how to treat most medical conditions (including RLS). Sometimes it’s also helpful to get a second opinion.
Regarding getting off temazepam, it’s certainly a worthy goal. Don’t try it on your own though; you’ll need to work with a medical professional to develop a suitable tapering plan. Good luck!
CB says
Hey doctor, really appreciate the great article and your responsiveness to comments!
My grandfather took mild doses of Ambien (~5mg) 2-3 times a week for about a year. About two months ago, he increased Ambien intake to slightly larger doses (5-7.5mg) and began to experience severe short-term memory loss issues.
We’re planning to take him off it asap and wanted advice on a couple of things –
(1) Is the memory loss reversible? What are the best remedies / treatments?
(2) What’s the quickest recommended way to take someone off the drug?
Leslie Kernisan, MD MPH says
If you are concerned about his memory, then reducing his Ambien is a good idea. Be sure to talk with his doctor to get medical advice tailored to him. Tapering a sedative should be done under medical supervision, and your grandfather’s doctor can help you work out a suitable schedule. Suddenly stopping Ambien often causes “rebound” insomnia. This is hard for people to cope with, and in older adults who are having memory problems, the worsened sleep-problems can make their thinking and memory even worse in the short-term.
You will also want to ask the doctor to help you assess for other problems that might be worsening his memory, because medication side-effects are only one of many things that can worsen memory. (For more on what the doctor should check for, see this article: How We Diagnose Dementia. It lists the most common non-dementia causes of worsening memory.)
In terms of whether the memory loss is reversible: that will depend on what is causing it. People often get better after they stop brain-dampening medications, but the memory problems don’t entirely reverse in everyone. Especially as people get older and older, they are more likely to be developing underlying brain changes that will cause memory problems even if they are on no medications and other otherwise optimize their brain health.
To help your grandfather optimize his brain health, I cover a number of proven approaches in this post: How to Promote Brain Health.
Good luck!