Hi everyone, it's been a LONG time since I've posted anything on the forum, but I have a question and hope to get feedback from anyone who can help.
My neurologist wants me to start on Aricept for my cognitive issues. Apparently it just became available in generic about 3 weeks ago, but she gave me a month's sample of the actual Aricept. I'm excited to take it (I'm going to start it tomorrow so I have a few weekend days to know how it affects me), especially if it helps!
I've looked online and on previous forum posts but didn't find a lot regarding actual experiences from those taking it who have MS. I'm a medical social worker for a hospice, and many of my elderly patients take it, but I'm hoping for feedback from anyone on here who takes it or has taken it in the past.
Some of my questions: Did it help? If so, how long were you on it before noticing improvement? What kind of side effects, if any, did you deal with?
Thank you guys so much in advance for any help you can give me on this!
Hey, Angela - feel free to ask me any questions about it.
My psychologist recommended Aricept after my neuro-psych exam. She had similar problems the year before, and was suffering from cog fog, so she took Aricept for a while until things improved.
I had to argue with my neuro - good thing that your neurologist is so proactive! I simply suggested that it was worth a try, and he gave me a sample. When it started working, I decided I'd go ahead and fill out the prescription.
The first two weeks on Aricept was a little weird. I found that when I closed my eyes to go to sleep, the moire pattern behind my eyes was very complicated - almost high-def. I started having dreams again, but they were weird, procedural sorts of dreams - sorting stuff, or tedious sorts of trying-to-find-the-door dreams. But they were dreams - and I hadn't really dreamed in a year.
Another thing I noticed was that I was able to track events from one moment to the next. Instead of just floating and reacting to things around me, I was able to follow conversations and remember past events. Short term memory got better. I could string together complete sentences.
My new neurologist told me that Aricept doesn't really fix cog fog. Perhaps it doesn't. I have a theory, though. Neuroplasticity is the brain learning new pathways, because the old ones no longer work. Aricept was oddly enough like turning up the water so you'll have more pressure in the garden hose. I knew the holes were there, but I was able to think around them more easily. So perhaps Aricept helped my brain to learn new pathways.
At any rate, I would wait to fill my prescription until I could feel my brain reverting to its old foggy ways. Then I'd fill it, and within a week I was back to normal. After five months, I found that I wasn't much different without the Aricept, so I stopped taking it.
It definitely wiped away the cobwebs. The neuro-psych exam showed that I had lost 30 IQ points. I don't know how I'd score now, but I'm definitely better than I was before the Aricept. I guess the question is - would I have gotten better without it? I don't know. But I was fighting the fog for a year and a half before the Aricept, and it took five months on Aricept to clear out the fog.
We really need some clear research on cognitive problems and Aricept with MS. We don't have a good large study to point to, so all this evidence is unfortunately anecdotal.
Thank you so much for the answer (and thanks Shell for passing on my question!). I've been increasingly dealing with these cognitive issues for at least the past two years. I took a neuropsych exam probably 2 years ago and the results were embarrassing! My results in various sections definitely did not match up to my age and education. It was so frustrating because I had just graduated from grad school in May 2006 and then was diagnosed in November 2007. In that year and a half my cognition had gone WAY downhill. I had managed to get a 4.0 all through my Bachelor's and Master's degrees, so to perform like I did on the neuropsych testing was disturbing!
Fast forward to 2011 and I think I've just gotten worse. I am thankful that my MS doc is as proactive as she is! I started the Aricept on Sunday so I've only had 2 doses. I haven't noticed anything different (as far as side effects or improvements), but it's obvious from your response that it make take awhile. I'm very hopeful though! At this point I have to have hope - it's negatively effected me at work and I can't afford for that to happen (both financially and for the mere fact I love my job!).
Thanks again for your response! It's helpful to know someone else's experience with Aricept.
I havent read anything regarding younger folks without dementia/alzheimers. What I will tell you is I have worked with geriatrics and brain injuries almost my entire career (nurse/administrator). My father also had dementia for 12 long years.
I will tell you its best to take at night. It may casue dizziness.
Traditionally the theory is that aricept will not restore cognitive or memory loss. What it will do is help to prevent or slow down progress. Again, I am not a physician, nor have I read anything recently regarding aricept.
I have always joked with my PCP that once I turned 40 I thought I should start taking it as I fear early onset issues like my father. I seriously do have cognitive issues in the past 6 months since I took ill (still no definite dx, just an MS suspect and Vit D deficiency).
I'd be interested in knowing how you both make out with this!
Terri - that's interesting that you said it's best to take at night! Everything I've read has said to take it in the morning. I've been taking it first thing in the morning and I haven't noticed dizziness. I have had periods of being slightly lightheaded. Last night I had an odd night of sleep. Went to bed at 11pm and then woke up at a little after 12am....then pretty much every 1 1/2 hrs after that until I finally just called it a night at 530am. We'll see if I have the same issues tonight. Oddly enough, I didn't have my usual severe fatigue at 2-230pm...you'd think that with the interrupted sleep I would have had it more, so maybe I'm the anomaly who needs continuous back-to-back 1 1/2 hr periods of sleep! :-)
I'll keep everyone updated on how the Aricept is helping (or if it is at all!).
How to use Aricept Oral
Take this medication by mouth once daily with or without food, usually just before bedtime, or as directed by your doctor. If you experience sleep problems (insomnia), talk to your doctor about switching to a morning dose.
Everywhere I have ever worked as a charge nurse, director of nursing or administrator we have scheduled aricept at 8pm unless physician specifically wrote order for am dose. It used to make my dad light headed/dizzy and really off balance at first. I have heard that from other people as well
I did have a bit of restlessness initially. It seemed to go along with the 'high-def' feeling I was getting when I closed my eyes to go to sleep. I was having fatigue issues, so really didn't have any trouble getting to sleep, or staying asleep - although I didn't have my usual 12-hour nights.
I was on the 5 mg dosage for Aricept. I think that alzheimer's patients are usually on a higher dosage, right?
From what I understand, the usual is to start on 5mg for a few weeks and then up it to 10mg. Not sure if that's just for Alzheimer's or if it's the dosage across the board. My MS doc started me on the 5mg, but she said that if I find that isn't working after a few weeks that she'd prescribe the 10mg.
I had another weird sleep night. It's so odd because I don't wake groggy or feeling a lack of sleep. This morning I laid in bed until 540, not because I was tired but because I wanted to stay under my warm blanket! Did you take yours in the morning or at night? I guess it's not an awful thing as long as I'm not feeling the repercussions the next day - more of an annoyance than anything else. This looking at the clock every 1 1/2 hrs is for the birds! It seems I'm able to go right back to sleep after I do my "time check," but this morning I'm pretty sure I didn't sleep at all from 430 until I finally got out of bed at 540. Kind of hoping this is just an annoying side effect in the beginning that will go away with use!
well hi!! i have been on it for like 8 months- yes it helped me a great deal! i was bad with remembering anything- couldnt find the right words- urgg!! i told the dr.- i felt retarded- to put it bluntly- then he put me on arricept- he said they was giving it to school kids in asia- to help them pass tests!! -i assumed college kids- but yes it helped me- i go into la- la land some, but not like i did- good luck hugs tick
I always took mine in the morning. Now that you mention it... it seems like the first week or so on Aricept, I had some restless nights. Like you, I felt like I was getting enough sleep, but I kept waking up. After a while I got used to the high-def feeling and my nights became more normal.
I never had to ramp up my dosage. 5 mg was plenty. I think that 5 mg would be plenty for you as well, but of course it's up to you and your neuro to decide that.
So how is the noggin working? Have you noticed any change in your thinking?
Tick, I'm so glad to hear that Aricept has helped you! I'm very hopeful that it does the same for me! I used to be able to multi-task like no other and remember EVERYTHING. Now, if I get interrupted, I lose my train of thought and become so frustrated! And I can totally relate to the inability to find words! And to the feeling "retarded"...although I have known many many mentally challenged people who can speak and find words better than me!
Jensequitur, I think I'm going to stick with a morning dose. My doc said to let her know after my 4 wk sample whether I think the 5mg is adequate. I'm hoping it will be. And thanks for asking about my noggin! Hehe I'm nervous to see improvements that aren't really there just because I'm being hopeful. However, this morning was my 6th dose and I feel like there's at least mild improvement. We shall see how it continues - since my doc gave me a 4 wk sample, that's how long I gave myself to see true changes. These "possibilities" during the 1st week are just extra perks!
I think this stuff may actually be working! Like I said in a previous post, I was leery of attributing any improvements to the med. I want it to work pretty bad, and I don't want to just assume every little improvement is the Aricept talking! BUT, yesterday morning I completed a crossword puzzle for the first time in I don't know how long. I was so surprise when I did that I did another one right after (I have an app on my smartphone) to see if it was a fluke. And I completed that one too! Since then I've completed quite a few!
By the way, I have tons of trouble with sleep too so it's probably not the greatest idea for me to take it at night. 2 nights ago I doubled up on my sleep med to make sure I slept and it worked. Then last night I only woke up once and I just took my regular dosage of the sleep med. Hopefully I'm over that side effect.
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