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 Benadryl (diphenhydramine) for insomnia? 
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Joined: Thu Apr 21, 2011 9:07 pm
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Post Benadryl (diphenhydramine) for insomnia?
My mother (94, very early DLB with no PD symptoms) has had insomnia, up 4+ times at night, and then sleepy during day (sound familiar?). This is probably the most distressing symptom now, because of its impact on my 95-year-old father. He is a very light sleeper and would hear her no matter where he was in their 2-bedroom apartment. She's been on aricept (5 mg) for 2 months. Cognition seems stable (memory relatively preserved, executive function poor.) Delusions were infrequent before but troubling (someone kidnapped, building on fire, saw workmen falling off the roof) but none for a few weeks, fingers crossed on that one. We had tried melatonin, with no visible effect.
So I was at a research group meeting yesterday with her neurologist and decided to pick his brain (a big advantage of working together so long!). Charlie had originally suggested low-dose seroquel but we have been holding off on that to see how the aricept would do. It is still a back-up plan if needed. Meanwhile, he suggested trying a very low dose of benadryl, 25 mg close to bedtime. He felt, given her general situation, that the side effect profile was pretty benign for a low dose.
Tried it last night for first time - hallelujah, she slept all night, waking up briefly once around 4 am to pee, and was bouncy in morning and went out to the pool for the water aerobics class without being reminded and saying she was tired! (She loves the class and goes 3x/ wk but the sleep disturbance has made it hard for her to get going.) My dad sounded 100x better on the phone.
I note, however, that Robin and others have warned repeatedly against benadryl! I couldn't find a specific discussion of this in Boeve's continuum paper, and I looked on PubMed and NIH web and the main cautions against use in the elderly seem to be for either daytime usage or for high-dose long-term usage. (Oddly enough, there are some rat studies suggesting that some antihistamines might actually counteract some of the damage in PD-like syndromes; go figure... no human studies of this that I could find.) And there is also little evidence that people will build tolerance to the night-time sleepiness, though they rapidly (3 days) develop some tolerance to daytime sleepiness, at least in clinical studies in younger folks. My reading suggests, then, that risks to her at least for now may be fairly modest, compared to benefits of sleep and reduction of harm to my father. The alternatives all seem to carry their own risks. Charlie was pretty unconcerned about it at least for now, and he's knowledgeable and knows my mom.
Question: What's the down side to Benadryl, at a low dose, in either short-term or longer-term usage at night time? Have others had experience? Have I missed some key papers in my admittedly cursory PubMed search? Have others tried this and had problems? What should I be watching out for?
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Fri Jun 24, 2011 2:49 pm
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Post Re: Benadryl (diphenhydramine) for insomnia?
Benadryl is strongly anticholinergic and can cause severe problems in LBD. Here is a link to a post from Robin that discusses this: http://community.lbda.org/forum/viewtopic.php?f=4&t=2376.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Fri Jun 24, 2011 3:29 pm
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Post Re: Benadryl (diphenhydramine) for insomnia?
Laurel,

I fully understand the seriousness of the kind of insomnia you describe. That was the number one symptom that would have prevented me from keeping Coy at home. Even if I could have brought in outside help at night so that I could sleep, sleep deprivation was depriving Coy of any kind of normal daytime routine. Your mother's water exercise is valuable. It is sad to think of losing it to multiple night awakenings.

Don't you think treating this kind of disease, at least at this point in our understanding of it, inevitably involves some tradeoffs? A pill that works great for symptom A might make symptom B worse. A drug that solves an immediate problem might have long-term side effects. And, of course, a medication that works amazingly well for 70% of the target population is absolutely horrid for 20% and nuetral for 10%. The trial-and-error nature of treatments is hard on those of us with limited patience!

Coy has been seeing Dr. Carlos Schenck of the Minnesota Regional Sleep Center for about 30 years. He has been taking klonopin for RBD. When Lewy moved in he developed additional sleep problems of the kind you are describing. Schenck tried melatonin briefly but had no success. He switched to Seroquel. I know that has poor results for many people, but it worked a treat for Coy, who has been taking it at the same dosage for 8 years. We never tried benedryl. Coy's geriatician advises against Tylenol PM or benedryl for him.

Is benedryl potentially more or less harmful than Seroquel? Who can say with certainty? And even if we point to lots of statistics that look pretty certain, it would be still a mystery how our particular LO will react.

You are doing everything you possibly can to make wise and safe decisions for your mother. You've consulted a trusted neurologist. You've done some web research. You're asking about the experiences of other caregivers. You need to weigh it all, consider the benefits of sleeping through the night and the risks of various treatment options, and then move forward with your decision. It is the best any of us can do, and you probably have the resources to do it better than many.

Whatever the outcome, don't beat yourself up with "if only" second guessing.

Hugs to you. Please keep us informed. We care!

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Fri Jun 24, 2011 4:17 pm
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Post Re: Benadryl (diphenhydramine) for insomnia?
Laurel,

The issue with Benadryl has nothing to do with dosing or long-term use. It's an anticholinergic. That type of medication (in any dose) is to be avoided in someone with a cholinergic deficiency. Do web-searches for "anticholinergic side effects."

That being said, since you've already tried it, why not continue with it? See if it was a one-time fluke or what. One possibility is that your mother does not have a cholinergic deficiency and that's why you see no side effects. (Only brain autopsy upon death can confirm the DLB diagnosis.)

Robin


Fri Jun 24, 2011 6:23 pm
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Post Re: Benadryl (diphenhydramine) for insomnia?
Hi Robin,
I've been reading away, since talking to Charlie yesterday, in between trying to get some actual work done! The literature on anticholinergics is of course pretty clear about existence of side effects - but the effects seem to vary with the degree of anti-cholinergic activity, which varies with medication. Even within antihistamines, some are more anticholinergic than others - diphenhydramine more than some newer ones, less than some others (at least in rat studies.). And some of the effects seem to be reversible, from some drugs anyway, including diphenhydramine, in some studies. And at least one population-based study (there have not been many) found effects only in non-demented elderly, not among those with dementia. But it was observational and may have been influenced by a small subgroup who were really pretty demented and didn't take diphenhydramine. The risk in some studies that measured anticholinergic dosage by degree of anticholinergic activity in blood found dose-response effects. But who knows what the level of activity is in brain, and how correlated that is to serum activity, as that probably varies across drugs in this class, too!
And Seroquel has its own set of risks, and drug interactions, and it's trickier to discontinue, or so it seems. All the most effective approaches for my mom carry some risk for her, and doing nothing is not sustainable for my dad. Will just monitor her like mad, and discontinue if problems arise, and try something else. I definitely would not have tried this first without Charlie's encouragement.
Gack. You'd think there might be an easy answer to something, sometime, no?
So we are muddling along as best we can, grateful for easy access to Charlie and other colleagues, to the medical literature, and to you folks who have been coping with this and following the literature a lot longer!
Maybe our current work on the Alzheimer's Disease Neuroimaging Initiative, and the proposed Parkinson's project for which I've been asked to be on some national planning group, will someday help get us to where we don't have to wait for post-mortem to have definitive diagnosis.

Thanks for quick responses and kind words and help -
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Fri Jun 24, 2011 8:08 pm
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Post Re: Benadryl (diphenhydramine) for insomnia?
Laurel,

Yes, not all anticholinergics are created equally. And you will be hard-pressed to find two MDs who believe the same medication has the same severity. Example: my dad's neurologist thought Enablex was mildly-anticholinergic yet the PCP thought it was very anticholinergic.

Seems like I or someone else posted here *one person's list* of the anticholinergic severity of various medications?? Have you seen anything like that? If not, I will find it and post it again.

There was a caregiver here named Eric (EricSEA was his username) years ago. He and I were both entering dementia caregiving around the same time. One thing that he and I did very early on was web research into medications and anticholinergics. We couldn't find one great list of all the anticholinergics. Bits and pieces of the story were in different places. He was partial to the DeBeers list. I haven't looked into the subject since then because I don't think there's anything new on it.

Robin


Fri Jun 24, 2011 8:53 pm
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Post Re: Benadryl (diphenhydramine) for insomnia?
PS. I'm not aware that Seroquel is tricky to discontinue.

Benadryl (diphenhydramine) is easy to discontinue. One of the key dangers in the elderly is that it can cause drowsiness (which is why it helps with sleep) and this puts people at a greater risk for falls. So, while the medication is easy to DC, the risks are high.


Fri Jun 24, 2011 8:57 pm
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Post Re: Benadryl (diphenhydramine) for insomnia?
I've given my husband an occasional Benedryl or Tylenol PM when he's called out for me every 30 minutes from 11 p.m. to 3 a.m. He's had no reactions, other than sleep, which allows me to get some much-needed rest. Perhaps the key, with my husband at least, is "occasional."

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Wife of a 60-year-old LBD patient who was diagnosed in 2003.


Fri Jun 24, 2011 8:59 pm
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Post Re: Benadryl (diphenhydramine) for insomnia?
Hi Robin,
NIH medline notes that discontinuation of Seroquel may have side effects: " If you suddenly stop taking quetiapine, you may experience withdrawal symptoms such as nausea, vomiting, and difficulty falling asleep or staying asleep. Your doctor will probably want to decrease your dose gradually." There are some reports in the literature that suggest this is somewhat common, and some weird case reports of rare stuff like hyperkinesia, dyskinesia, etc. (reversible, luckily). Presumably tapering carefully would limit the risk, and she would probably be on a pretty low dose anyway.

Debry, I'm hoping that once we get my dad rested up and my mom into a better sleep pattern, we might be able to use this as an occasional rescue med, so it's encouraging to hear that it worked that way for you! It's really helpful to hear from you, Jeanne and others about what worked for you.

One of my friends told me about an article by a top guy at the Stanford Sleep Center on dosing for melatonin. Supposedly he claims that most people are using far too much, and that the most effective dosage is very small (1/3 mg?? Hmm.) He is supposed to send me the article or information, and I'll try to post a summary and link.

It really does sound as if there is going to be a lot of trial and error. Part of that is the limited number of clinical trials in LBD, so there is not a Definitive Answer out there. I suspect that may be due in part to the heterogeneity of people who get diagnosed as LBD - a mix of people with different pathologies, sometimes in the same person, and likely a good bit of variation even in people with the same pathology.

O well, for the moment I am feeling encouraged, though my dad told me today's delusion: they were on a ship (cruise?) and someone fell overboard. He pointed out the window and showed her that there was NO WATER and she eventually conceded that probably no one was swimming around in the lawn or pathway! She was watching the Giants game when I was there this evening and seemed perfectly lucid and could recount all the details of the last three or four games. Go figure.
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Sat Jun 25, 2011 1:40 am
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Post Re: Benadryl (diphenhydramine) for insomnia?
For melatonin, I'd be inclined to go with what Dr. Boeve says since he is both a DLB expert and sleep expert.

Until the diagnostic accuracy of DLB can be increased (now 25%-33%), we will continue to rely on studies in PDD.


Sat Jun 25, 2011 9:55 am
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Post Re: Benadryl (diphenhydramine) for insomnia?
Here's the list I was thinking of --
"136 Drugs That Can Cause Cognitive Impairment"
http://alzheimers.boomja.com/index.php?ITEM=101861

Benadryl does get the "worst" or "most severe" side effects rating.

It's part of a list by worstpills.org that is available only through subscription.


Sat Jun 25, 2011 10:03 am
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Post Re: Benadryl (diphenhydramine) for insomnia?
Thanks for the list, Robin - it's good to have a handy reference on the drugs.

I poked around and found that my friend may have been talking to Garrick Wang, who is an MD/PhD who did his residency in the Dept of Psychiatry at Stanford Medical School and in their Sleep Disorders Clinic, which is one of the top in the world. He has a slide presentation online, and that sent me to an article in J Clin Endocrinol and Metabolism, http://jcem.endojournals.org/content/86/10/4727.long . This paper reports a double-blind, placebo-controlled clinical trial for age-related insomnia comparing doses of 0.1, 0.3 and 3 mg. It was a very well-run study with multiple, careful, objective assessments of sleep outcomes. They found the optimal dosage to be 0.3 mg; 3 mg was also more effective than 0.1 mg and placebo, but induced hypothermia and the elevated melatonin continued into the next day. Strengths: it's a really well done study and the results are pretty unequivocal. Limitations: fairly modest sample size, and not focused on patients with dementia, let alone LBD. So generalizability to our world is open to question. So far as I can tell, all or almost all of the trials of melatonin for insomnia in AD and PD have been at the higher dosages (2 mg and up), so it's an open question, from the research standpoint, whether lower dosages might be better in LBD.

It would be interesting to hear what Dr. Boeve and other neurologists say. I'm going to be at an AD research symposium at Stanford on Tuesday so maybe I will raise the question, especially if someone gives a presentation on sleep disturbance! (I suspect, however, that most of the talks will be on stuff like fMRI andMRI and PET scans and other biomarkers - including my student's.)

Meanwhile, our sample-size-of-one trial is puttering along, day 2, and my dad looks better and my mom doesn't seem any worse, and she was wide awake watching the Giants game a while ago.
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Sat Jun 25, 2011 6:44 pm
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