My spouse was diagnosed about 4 years ago with AD. Aricrpt and Namenda were given. He recently started having a lot of incontinence so thinking it might be the meds I stopped Namenda. Memory stayed the same but GI symptoms continued. I stopped the Aricept. GI symptoms improved and he is more alert and interactive. Is this possible with AD? I am happy but confused. If anyone has had this happen or could shed light I would appreciate it. Thank you.
Yes, I have heard of that happening. I'm not sure if there is a discussion about it on these boards. Hopefully others will come along to tell their stories. I am going to change the word "meds" to "aricept" in the title of your discussion which may get everyone's attention.
This happened to me as well. When DH was on Aricept he was sleeping all the time was not alert could barley function. He wound having severe headaches that put him in the hospital thy said he was allergic to the meds and when he came off the the Aricept the sleeping non stop stopped and he was much more alert. Glad to know it was not my imagination.
What about Exelon? Mine is on Exelon patch and Namenda.
I wonder what good it is doing now. He seems slower in just about every way you can think of, walking, snoozing more, no piddle problems yet, no headaches but he does get corked up and then corks up the toilet...
People see everything with these AD meds. There is isn't much about this illness that is NOT regrettable, but if there is one thing I don't regret about Jeff's decline this year it's that we could discontinue the aricept and namenda. At a certain point it becomes clear that you're not holding any lines, you're just coping, and they become a pointless expense.
I took him off Aricept a couple of months ago, he was on 10 mg. Within a week he seem WAY more agitated and it got so bad I had to have him take Seroquel, plus put him back on the Aricept. The Dr. said that the aricept actually helps with agitation too.
It was an experiment...I too, just wanted to know. Now do I know for sure what happened? No of course not. But I am not taking him off it again, that was a nightmare. He just could NOT sit still and even did not sleep well at night. The added seroquel immediately calmed him down, and we slowly up his dose as time goes by.
He does not seem to have major side effects, who really knows what is going on inside? I just know I cannot deal with that crazy agitation. Yes, seems like the old if you have seen one case, you have seen one.
My pcp gave a sample of Namenda to try. The result were awful and scary. Dh was almost wild at times storming around hitting the wall and cussing like I never heard him do. So only a couple days of that and I didn't give any more. He still has some raging spells but not often. I have found a couple tylenol p.m. help him have a better night's sleep so far. Of course that may not last either. He takes aricept and does nap some but really it is a time for me to have so selfishly I don't care.
Initially, Aricept helped my dh with his aggression, but the price was horrible incontinence. The addition of Namenda was an aggression nightmare and I jettisoned that drug right away. So, the Aricept ceased helping out with aggression and only incontinence remained, so I got rid of the Aricept too and put him on 40 mg/day of Celexa. Magic! It took a few months for the Aricept to totally leave his system and we had a few more accidents; but, basically been good since the Celexa. Of course, 2 weeks ago when I ended up in ER and hospital for 4 days, serious Catastrophic Event for dh and he became very aggressive and threatened my friends who were caring for me. We'll see what the doc has in order for him now when we go back in a couple weeks. I'd take him now, but I still can't drive and neither can he and I MUST be there. That's my story and I'm sticking to it.
My husband has been on galantamine since 2008. In 2009 I talked the doctor into Namenda because of reports the two are a good combo. Well - for him it was not. He because lethargic, tired and became exhausted easily, gave him brain fog and even affected his vision. All these are side effects. The doctor said to try for two months so we did and then the Namenda was stopped. He is still on 16 mg galantamine (Razadyne) and will stay on it until he starts to slide quickly downhill.
I've now been dealing with Alzheimer's for nearly 7 years ... 3+ years before Clare's diagnosis when she was being incorrectly treated for stress, anxiety, and depression, and 3+ years since. Regardless of what any doctor says or doesn't say ... or what the professional literature says or doesn't say ... about whether to continue with or discontinue taking Alz meds, we caregivers should have learned one very important lesson by now. We must trust our observations as caregivers. Especially for those of us with spouses at home, when we live with someone 24/7 ... except, perhaps, for some brief respite periods ... we often observe symptoms, behaviors, or med side effects that are not mentioned in the professional literature; or symptoms or side effects that doctors may tell us are not due to our spouse's Alzheimer's. Yet ... we all see it happening right before our eyes!! So, my advice to caregivers who notice side effects is to trust their observations. In fact, I've just written an article for publication about 4 symptoms observed by members of my weekly spouse caregiver group that are not mentioned anywhere in the professional literature and doctors say they've never heard of these symptoms as being associated with Alzheimer's. Yet, we caregivers see these things happening. Can we all be crazy? Can these all be coincidences? So to debiflock and all other caregivers on this wonderful site who are all, sadly, 'seasoned veterans' dealing with this weird disease ... my simple advice is to trust your own observations!!
We are dealing with brain damage and different people's brain are damaged in different ways. Besides the problem of identifying the proper dementia, a specific dementia will not necessarily follow a given path. And everyone's brains develops differently, so damage to a particular section could have differing effects on different people.
As observers we have a problem in that we get used to various problems and unconsciously adopt to them. My wife's speech seems to be getting worse (both speaking clearly and jumping from subject to subject) but since this happens slowly I get used to it and can better understand her than others. We can get so used to odd behavior that we don't even think of it.
debiflock, Lloyd started on Aricept and then Namenda was added. Supposedly, the Aricept only works for 2-3 years. After Lloyd started with seizures, his Aricept was discontinued. The neuro told me in March that the Namenda was no longer effective and I tried to take him off, but have not been able. He is now taking only 10 mg per day in the evening. He is advanced enough now that he does better with liquid medications and starting at lower doses. The neuro kept starting him at 500mg of Keppra and 500mg of Depakote and 500mg of Dilantin. That much Keppra and Depakote turned him into a slobbering zombie and he ended up having an allergic reaction to the Dilantin. He is now on 1ml of Keppra 2x day and 4ml Neurontin before bedtime plus the Namenda and some Coumadin. That is it. We may go back to some sleep meds soon as he is not sleeping well, but I may try that new Zzzquil or Melatonin first. Mimi, this may sound crazy but I have to remind Lloyd to poop. I have to take him in, pull his pants down, sit him down, wipe him. and put him back together again. He is on a bathroom schedule of sorts - first thing in the morning and last thing before bed at night. If you know when he would normally poop then that is the time you may want to ask if he needs to. Lloyd seems to hold it for days and then he will be holding his stomach and I know I'd better get him there. Our guns are gone. I gave the last one to his brother about 6 months ago. I may get myself a small handgun down the road as soon as I figure out if I want a revolver or a clip. I would like the clip, but everyone worries that it will jam when I need it which would make it worthless. Lloyd has a nasty temper (Irish), but the best thing that works for me is never backing down. We love them and we take care of them, but that doesn't mean we need to take any crap from them. If he gets aggressive; I tell him if he wants to be mean, then we can both be mean. If he shoves, I shove back with one hand and am ready to catch him with the other. If he grabs, I smack fingers. I believe they still can comprehend consequences and self-preservation to some extent and Lloyd is pretty far gone. paulc, speech was the first thing to be affected with Lloyd. It started with him being unable to find the right word and progressed to the point where the grand sum of what he says is "No", "I didn't do that", "I don't like that", and a few choice swear words including b**** when he doesn't get his way. I just basically wing it, observe, play with the meds until they're right. If anyone tries to tell me what they think I should be doing, I have my POA with me at all times. That means this is my life and I am the boss and I say what is best for him because then that will be best for me also.