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Friday, January 30, 2015

Benadryl and Dementia ...again!

 I have long suspected that some antihistamines have some nasty short-term affects on my bvFTD symptoms. Now there seems to be some concrete research supporting the long term usage of antihistamines as a possible contributing factor to dementia. I found the following article on the Science Daily website.

AAAAAARGH! I still take them now and then.

Higher dementia risk linked to more use of common drugs
Date: January 26, 2015
Source: Group Health Research Institute

A large study links a significantly increased risk for developing dementia, including Alzheimer's disease, to taking commonly used medications with anticholinergic effects at higher doses or for a longer time. Many older people take these medications, which include nonprescription diphenhydramine (Benadryl).

A large study links a significantly increased risk for developing dementia, including Alzheimer's disease, to taking commonly used medications with anticholinergic effects at higher doses or for a longer time. Many older people take these medications, which include nonprescription diphenhydramine (Benadryl). JAMA Internal Medicine published the report, called "Cumulative Use of Strong Anticholinergic Medications and Incident Dementia."

The study used more rigorous methods, longer follow-up (more than seven years), and better assessment of medication use via pharmacy records (including substantial nonprescription use) to confirm this previously reported link. It is the first study to show a dose response: linking more risk for developing dementia to higher use of anticholinergic medications. And it is also the first to suggest that dementia risk linked to anticholinergic medications may persist -- and may not be reversible even years after people stop taking these drugs.

"Older adults should be aware that many medications -- including some available without a prescription, such as over-the-counter sleep aids -- have strong anticholinergic effects," said Shelly Gray, PharmD, MS, the first author of the report, which tracks nearly 3,500 Group Health seniors participating in the long-running Adult Changes in Thought (ACT), a joint Group Health-University of Washington (UW) study funded by the National Institute on Aging. "And they should tell their health care providers about all their over-the-counter use," she added.

"But of course, no one should stop taking any therapy without consulting their health care provider," said Dr. Gray, who is a professor, the vice chair of curriculum and instruction, and director of the geriatric pharmacy program at the UW School of Pharmacy. "Health care providers should regularly review their older patients' drug regimens -- including over-the-counter medications -- to look for chances to use fewer anticholinergic medications at lower doses."

For instance, the most commonly used medications in the study were tricyclic antidepressants like doxepin (Sinequan), first-generation antihistamines like chlorpheniramine (Chlor-Trimeton), and antimuscarinics for bladder control like oxybutynin (Ditropan). The study estimated that people taking at least 10 mg/day of doxepin, 4 mg/day of chlorpheniramine, or 5 mg/day of oxybutynin for more than three years would be at greater risk for developing dementia. Dr. Gray said substitutes are available for the first two: a selective serotonin re-uptake inhibitor (SSRI) like citalopram (Celexa) or fluoxitene (Prozac) for depression and a second-generation antihistamine like loratadine (Claritin) for allergies. It's harder to find alternative medications for urinary incontinence, but some behavioral changes can reduce this problem.

"If providers need to prescribe a medication with anticholinergic effects because it is the best therapy for their patient," Dr. Gray said, "they should use the lowest effective dose, monitor the therapy regularly to ensure it's working, and stop the therapy if it's ineffective." Anticholinergic effects happen because some medications block the neurotransmitter called acetylcholine in the brain and body, she explained. That can cause many side effects, including drowsiness, constipation, retaining urine, and dry mouth and eyes.

"With detailed information on thousands of patients for many years, the ACT study is a living laboratory for exploring risk factors for conditions like dementia," said Dr. Gray's coauthor Eric B. Larson, MD, MPH. "This latest study is a prime example of that work and has important implications for people taking medications -- and for those prescribing medications for older patients." Dr. Larson is the ACT principal investigator, vice president for research at Group Health, and executive director of Group Health Research Institute (GHRI). He is also a clinical professor of medicine at the UW School of Medicine and of health services at the UW School of Public Health.

Some ACT participants agree to have their brains autopsied after they die. That will make it possible to follow up this research by examining whether participants who took anticholinergic medications have more Alzheimer's-related pathology in their brains compared to nonusers.

Story Source:

The above story is based on materials provided by Group Health Research Institute. Note: Materials may be edited for content and length.

Journal Reference:

    Shelly L. Gray, Melissa L. Anderson, Sascha Dublin, Joseph T. Hanlon, Rebecca Hubbard, Rod Walker, Onchee Yu, Paul K. Crane, Eric B. Larson. Cumulative Use of Strong Anticholinergics and Incident Dementia. JAMA Internal Medicine, 2015; DOI: 10.1001/jamainternmed.2014.7663

Group Health Research Institute. "Higher dementia risk linked to more use of common drugs." ScienceDaily. ScienceDaily, 26 January 2015. .
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Sunday, January 25, 2015

bvFTD And The Holidays And Gracie's IDS

 “Seventeen, eh!" said Hagrid as he accepted a bucket-sized glass of wine from Fred.
"Six years to the day we met, Harry, d’yeh remember it?"
"Vaguely," said Harry, grinning up at him. "Didn’t you smash down the front door, give Dudley a pig’s tail, and tell me I was a wizard?"
"I forge’ the details," Hagrid chortled.”

― J.K. Rowling, Harry Potter and the Deathly Hallows
The calm before the Thanksgiving storm.

My 60-ish birthday has just passed into oblivion, and that traditionally brings my holiday season to an end. I survived it once again with lots of help from Cindy and Gracie. I never really cared much about birthdays ever since everyone, my parents included, forgot my 16th birthday. I got plenty of guilt-mileage out of that one so it was all good in the end. I do appreciate my birthdays now simply because with each one I have survived another year beating the odds with bvFTD. On average, once diagnosed with bvFTD, survival is about 3-5 years. I am going into my 5th year since my diagnosis, and am still doing OK. When I was originally diagnosed they guessed I would progress at the slower end of the spectrum. Hopefully that will continue to be the case. Anyway - Happy Birthday To Me!!!

The holidays are always stressful with bvFTD. I would guess that the simplest reason aside from all the reasons the holidays are stressful for everyone else is that with bvFTD any deviation from the normal daily routine causes stress and anxiety. It is more difficult to accommodate changes in routine because that elasticity of thought and behavior is no longer there. It is easy to get flustered trying to adapt to new situations. Almost by definition the holidays are not like other days, and being different they automatically break the normal daily routine. Things which a person without bvFTD would never even notice, or find enjoyable, add stress and a challenge to someone with bvFTD. After a while it all adds up. My way of dealing with it is to take a break from it all. Just become a hermit for a few days. That mostly works to lower the stress, as long as the people around me know enough to leave me alone.

For me and most the holiday season starts with Thanksgiving. This has always been one of my favorite holidays. I don't really care that much about the food though I enjoy preparing a traditional Thanksgiving dinner. I enjoy family and sometimes friends sharing this special time of year. This is probably because I grew up in a very small family so that Thanksgiving today is always better than it was when I was growing up. The more the merrier!
Living room tree.

This year we hosted Cindy's family Thanksgiving feast. It was really easy, and I didn't feel at all stressed about it. We had around 14 people and Gracie here for dinner. I had bought a turkey, and then when I found out the final number we expected for dinner I went out and bought a bigger one. All I had to do was make the turkey which is so easy I think I could do it in my sleep. I used a cooking bag, and it came out moist and delicious as usual. Cindy cooked up most of the side-dishes which is more difficult, and everyone brought something. All of the food was wonderful, and there was way too much of it. A feast was feasted upon, football was watched, kids played on the floor and even outside, and most of the family was all together. It was a great start to the holidays.

Next came the Christmas party. It was actually Cindy's unofficial work party. This gave us motivation to get the whole house all decorated up for Christmas. This year we only had 2 Christmas trees, a huge one for the living room, and a smaller 6 ft one with ornaments Cindy and I have collected for the dining room. That is 5 fewer trees than last year, but we were working on a deadline for the party. The house looked very "Christmasy", and we only used about half of the decorations. Once again we ended up hosting a party for 12-14 people, and Gracie. Everyone had a great time. I opened a bottle of my homemade White Grape Peach Wine and pretty soon the microphone was on and some impromptu karaoke manifested itself. A few of the
managers attended, but are not in any of the pictures because it is actually against their company policy to attend parties with the peons. How stupid is that? It must have been a great party because we have several requests to host another. A birthday celebration, and a "game night" is planned in the next couple weeks. I am looking forward to it.

We had a great Christmas.
Both of my boys visited for Christmas day. They brought a puppy for Gracie to play with. They came up the day before Christmas Eve, and had to leave late Christmas day to be back at work the day after Christmas. Though the time was short we had a wonderful Christmas. Gracie and the puppy got along well. The puppy (Ryuu) is a little white Shiba Inu, which sorta looks like a miniature Akita Inu. The difference is about a hundred pounds, and Akita's are better in every way. Yes! I am biased.

The Friday after Christmas Cindy's oldest son, his wife, and her grandson came over to have their family Christmas here. We had a very nice evening. By
My boys put the ninja in the bread.
previous arrangement, her grandson stayed overnight. His ADHD is even worse than mine, and he is always a challenge. He is getting better now that he is 12 years old or so. He spent most of his time here playing with Gracie. For the first time he was an "easy-keeper".

The next day, Saturday, was Cindy's family Christmas at her brother's house up in Michigan. We returned her grandson to his parents, and spent a nice day feasting again and visiting with lots of family. It was another nice day but we were both really worn out. It is challenging for me to be in a room full of people with that many different conversations going on all at once. I can mostly just keep track of one thing at time. I miss a lot, and it is very stressful trying to keep up with it all. A couple of times I went into another room that had less going on to take a break from all of the commotion.

Late Saturday night or early Sunday morning we were asleep after a long day when Gracie decided to come upstairs with us. She does this sometimes. She has full run of the house, and though she usually prefers to sleep downstairs sometimes she comes up with us and sleeps at the foot of the bed or in the hallway. She is an Akita and is always on guard and on the lookout for any threats. She is very calm about it, but she is always there. Usually she is sound asleep right where any intruder would have to trip over her to gain entry.
Gracie and Ryuu nose to nose, of course she is laying down.
A great strategy for a deaf dog. In any case, when she came upstairs we both heard her whine in pain when she reached the top of the stairs. I actually said out loud, "That didn't sound good." Little did we know. We didn't pay much attention to it just figuring she slipped on the floor at the top of the steps and pulled something. Nothing serious.

The next day, that would be Sunday the 28th of December, Gracie acted as if she had a pulled neck muscle. She was hesitant to lay her head down, and occasionally whined in pain when she lifted her head getting up from a nap. She also did not want to lower her head below being in line with her back when standing. This went on all day. She didn't seem to be getting any worse, or any better.

Until Monday. By evening she was in obvious pain, and could not sit still. She would lie down for a few minutes only to pop up and pace around. The pain seemed to be localized in her neck region. I stayed awake with her all night. She was showing all of the behavioral symptoms of bloat, an often fatal dog disease, but without the actual bloating of the belly. I was very worried.

Cindy got up Tuesday to go to work at 4 AM as usual, and I went upstairs to try and get some sleep. Surprise! Gracie came right upstairs with me. It was as if she didn't want to be alone. Gracie is not allowed to sleep in bed with us, but we occasionally allow her onto the bed with an invitation. On this morning she climbed right in next to me. She laid her head across my chest stretching it way back into an odd position, and fell sound asleep. So did I. I guess she finally got comfortable.We slept for a few hours, and awoke around 8:30 or so. I had decided to call the vet as soon as they opened Tuesday, but both Gracie and I finally dozed off and overslept a little.She came down the stairs with me without any difficulty though I was ready to catch her if she fell or anything. She seemed a little unsteady on her feet. I could tell she was still in pain.

 I called the vet, explained her symptoms, and they wanted to see her right away. They had an appointment for us in an hour. The vet is about 10 minutes away. I called Cindy, and she left work to come to the vet.

By this time Gracie's symptoms had gotten a little worse, and she was in seemingly more pain. It really looked to me as if she had a pulled neck muscle, or even dislocated a vertebrae. She went to the vet. She walked in just fine, and seemed to remember where she was. She likes the vet. The vet checked her out, but really couldn't find anything obviously wrong. He prescribed an anti-inflammatory, and recommended rest. A pulled neck muscle was the best guess all-around at this point. We went home, and Cindy went back to work.

Gracie didn't get any better. In fact, she got worse. Much worse! She started to stagger around, and fall down. She sorta careened about the house as if she couldn't get her legs to do what she wanted them too. Her butt-end kept collapsing. Something was seriously wrong! (Happy New Year!) Friday night we had an ice storm. The roads were like glass on Saturday morning. We called the vet, and they said to bring her back in. The deck was so icy we could not walk on it, so I put the kitchen rugs across it. We backed the van up next to the deck. Oh! I forgot to mention. By this time Gracie was unable to stand up at all!

Gracie weighs 106 pounds. She is a big girl! I am unable to carry her around. Though she was unable to walk, she seemed in good spirits. She didn't seem really frightened, or in any pain. It seemed as if the pain
Curious puppy!
in her neck went away, but her legs no longer did what she wanted them to. She just seemed to have lost all control of her legs. She let me drag her across the kitchen floor by her front paws, out the door, and across the icy deck. I managed to lift her into the van. Off we went to the vet's. The roads were so icy I drove part of the way with 2 wheels on the grass at the side of the road to get some traction. They make a big deal around here about "black ice", but this was just all ice. There was almost a half inch on everything.

We got to the vet, and after some consultation and maneuverings of the van we loaded Gracie on to a doggie stretcher, and carried her inside. It only took 3 of us! She was unable to stand at all. The vet checked her over, and recommended neurological testing at another facility better equipped for that sort of thing. We cannot in any way afford that (around $6,000!), so aside from a complete blood workup there wasn't much they could do for her. To her credit, after pooping all over the vets floor, she managed to stand and stagger back to the van. We got her home, and back in the house somehow. We really didn't know anything more than we did before taking her to the vets, but overall it had cost us all we had in savings, and a little more on credit cards, but she is worth it all.

Again I slept on the couch next to her Saturday night. She did not get up much, but could stagger and fall around a little. Sometime during the night she awoke, and decided that the dining room floor was as close to going outside to potty as she could do. That was her only inside accident. I think she tried to wake me up, but I had finally fallen sound asleep. After that she managed to stagger and fall her way outside, and down the 5 steps off of the deck. I had to pull-drag-carry her back up the stairs again to come inside, but she did it. She would collapse in the backyard when she did her business, but she was determined not to go in the house again. She is an Akita, and Akita's are very clean, very stubborn, and very smart, at least Gracie is - that is when she isn't being a big dumb-ass dog!.

This went on for a few days. Sometime in there the vet called to report that her bloodwork was all normal except her Thyroid was a little low. She is taking a low dose of thyroid medication now for this. Most of the time Gracie just slept. We moved her food and water so it was right next to her. She ate OK, and drank her water. That was a good sign. A couple times a day she would stagger and fall her way outside, and back again with help. I did some research on the web, and almost everything a dog could have that showed her symptoms was often fatal. Stroke, encephalitis, something called FTE where plaque breaks off causing paralysis, and the not-so-fatal vestibular disease. Cindy and I both thought she was going to die. She was that sick!

Then, all of a sudden, she started to improve. She was still staggering around, and falling down, but she managed to climb up the steps to the deck by herself. This was around the end of the second week or so. I kinda lost track of time. I had been staying up with her every night, and Cindy was taking turns with me so I could sleep some. Over the next several days she continued to improve. Her improvement tends to rule out a stroke because she got better too fast for that. If it was encephalitis she would be dead already. FTE also takes a long time to recover from if they ever do. That leaves Idiopathic Vestibular Disease (or Syndrome depending where you look). It is some mysterious inflammation of the auditory nerve, which can effect other nerves, which comes on suddenly, and goes away all by itself just as suddenly. The symptoms mimic a stroke, and all of the other horrible fatal inflictions. It may cause dizziness, vomiting (oh, yeah! I forgot to mention that she barfed once around the second day, before she went to the vet the first time), restlessness, facial paralysis, eye twitching, head tilting (she does that all the time anyway so who could tell?), staggering gait, weakness in the legs, falling, inability to walk ...basically everything Gracie had. We never noticed any abnormal head-tilting, but didn't know to look for it until she was already on the mend so it may have been present, but as I said she does this anyway so it would be difficult to tell. As for the eye-twitching, I think I noticed some lateral eye movement that was involuntary, but it was not frequent. It might have been my imagination. Again she was already on the mend by the time I looked for it. Anyway, by ruling out most everything else, that is my personal diagnosis. Ideopathic Vestibular Syndrome (IDS). And the great news is that though not life threatening, it may reoccur. Yay!

As Gracie was continuing to improve, I went to the doctor for my regular check-up required for my insurance. I am doing OK everything considered. My blood sugar is a little high, and my thyroid is a little low. Gracie and I are now on the same medication, though my dose is considerably higher. Cindy had her check-up at the same time. She is also doing well. Good to go for another few months anyways.

And that brings us back to my Birthday. Gracie was just about as good as new. I, however, was not. The stress of all of everything had just been piling up. Between the usual holiday stuff, and Gracie, I had to do what was necessary, and keep on going. bvFTD be damned! Gracie was more important. Oh, there was also a bunch of other unimportant stuff going on now and then (friends visiting, coming, and going), but I think I touched on most of the major stuff. Once I was finally convinced she was going to live, and was all better, I was overwhelmed by my own symptoms. It had all just been too much for me to keep on keeping on. I fought with Cindy, and spent most of 3 days locked in my bedroom reading, being a hermit, and staying away from everything and everyone. I always say some days are better than others, but those were some really rough days. I withdrew from the world. Like Gracie, I got through them, and I am better now.

Yesterday Gracie and I went and got the license plate tags for my Jeep, and while I was there I officially registered Gracie as my Ohio Service Dog. She rode in the front seat the whole way there and back. I think she was helping me drive, at least in her mind she was. She already goes almost everywhere with me, but now she is official. We take care of one another.

Some days are better than other, but every day is better with Gracie.