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Aricept - 4th day update
Well, as you all know, I've been taking 5mg of donepezil a day for my cognitive impairment. I'm on #4 today.
Interestingly, I feel like I might have had a mini-flare at the beginning of the week (or maybe it was the allergies) - but despite that, my brain feels more 'on.' I'm remembering stuff better, and I'm able to stay on task better. I drove last night, and I felt safer - less distracted, more able to concentrate on driving. I was able to remember a password just now! I usually have to look up at my list - yes, I said LIST of passwords, because I can never remember any of them.
Maybe this is all psychosomatic. I think my brain should be doing better, so I'm stretching it more. Or maybe it's the estrogen levels from my birth control pills, which started at the beginning of the week too. Estrogen doesn't help with my impairment though, just my energy level.
I have had a bit of stomach ache, which comes and goes. Aricept increases gastric acid levels in your stomach, which leads to diarrhea (not yet!) vomiting (not yet!) and nausea (not yet!) I get the impression that you'll know the Aricept is kicking in when your gut starts hurting.
Of course, I was having problems down there before I started the Aricept, so maybe it has nothing to do with the new drug.
So that's where I'm at right now. Side effects are minimal to non-existent, and my memory and attention abilities seem to have improved.
I should be playing some of those games on happyneuron.com... Sheesh, I haven't even signed up yet! What was I thinking? Oh yeah, no broadband at home. :-( Ah, well. I'll go for it anyway.
Interestingly, I feel like I might have had a mini-flare at the beginning of the week (or maybe it was the allergies) - but despite that, my brain feels more 'on.' I'm remembering stuff better, and I'm able to stay on task better. I drove last night, and I felt safer - less distracted, more able to concentrate on driving. I was able to remember a password just now! I usually have to look up at my list - yes, I said LIST of passwords, because I can never remember any of them.
Maybe this is all psychosomatic. I think my brain should be doing better, so I'm stretching it more. Or maybe it's the estrogen levels from my birth control pills, which started at the beginning of the week too. Estrogen doesn't help with my impairment though, just my energy level.
I have had a bit of stomach ache, which comes and goes. Aricept increases gastric acid levels in your stomach, which leads to diarrhea (not yet!) vomiting (not yet!) and nausea (not yet!) I get the impression that you'll know the Aricept is kicking in when your gut starts hurting.
Of course, I was having problems down there before I started the Aricept, so maybe it has nothing to do with the new drug.
So that's where I'm at right now. Side effects are minimal to non-existent, and my memory and attention abilities seem to have improved.
I should be playing some of those games on happyneuron.com... Sheesh, I haven't even signed up yet! What was I thinking? Oh yeah, no broadband at home. :-( Ah, well. I'll go for it anyway.
It would be best to have a recorded test of your status before the loss - that way you know how much is lost. (Although that can be a little depressing!) I had a IQ test when I was twelve (128), and another when I was 30 or so (134.) The neuro-psych test measured me at 104. Of course, that was then - now that I'm feeling better, I wonder how I'd do.
However, the test itself is to show where you are deficient. It's an intensive test that measures functioning in several areas - basic symbol recognition and recall, word association, problem solving, attention... Some of the modules cover the same areas, so the tester can see if you're showing consistent problems in specific categories.
It *is* important to push for stuff like this. It drastically affected my quality of life for me not to be able to think properly. Sensory and muscular stuff I can live with - the brain is essential.
However, the test itself is to show where you are deficient. It's an intensive test that measures functioning in several areas - basic symbol recognition and recall, word association, problem solving, attention... Some of the modules cover the same areas, so the tester can see if you're showing consistent problems in specific categories.
It *is* important to push for stuff like this. It drastically affected my quality of life for me not to be able to think properly. Sensory and muscular stuff I can live with - the brain is essential.
I have a question, it has probably been addressed before on the forum, but I'll ask it anyway.
In the neuro-psych exam, what is the standard for comparison? It seems like it would be best to have a baseline of you before you had any loss, but of course they don't have that. So how can the test determine between loss and inherent differences in people's abilities? Somethings I've always been bad at compared to average, while there are maybe somethings I'm better at. Do you have a feel for how the testing gets around this to show actual loss?
I'm not sure I can get my current neuro to consider a neuro-psych exam, since he in general is not doing so much for me, but I think this is an important test to keep in mind for the future.
I suppose there are a lot of open research questions revolving around MS. The problem with rare diseases is that since less ppl are affected, it must be harder to (get funding to) address the many unresolved q's.
Reading that you had to "push" for this is important for others to take note of. Neuro's can't see this kind of impairment if it is relatively mild, just like they can't see a lot of other things like sensory symptoms. So it is important for us to all consider this, even though it can be a difficult issue to personally face and address with doctors.
Thanks.
In the neuro-psych exam, what is the standard for comparison? It seems like it would be best to have a baseline of you before you had any loss, but of course they don't have that. So how can the test determine between loss and inherent differences in people's abilities? Somethings I've always been bad at compared to average, while there are maybe somethings I'm better at. Do you have a feel for how the testing gets around this to show actual loss?
I'm not sure I can get my current neuro to consider a neuro-psych exam, since he in general is not doing so much for me, but I think this is an important test to keep in mind for the future.
I suppose there are a lot of open research questions revolving around MS. The problem with rare diseases is that since less ppl are affected, it must be harder to (get funding to) address the many unresolved q's.
Reading that you had to "push" for this is important for others to take note of. Neuro's can't see this kind of impairment if it is relatively mild, just like they can't see a lot of other things like sensory symptoms. So it is important for us to all consider this, even though it can be a difficult issue to personally face and address with doctors.
Thanks.
I had the same situation - when I was well-rested, I could think relatively well, but when I was feeling poorly, everything went. I fought this for about a year, then finally opted to push the issue.
My neurologist (bless his pointy little head) seems to think that my impairment is so slight that I don't need anything at all. But I pushed for a neuro-psych exam, and got it, which showed moderate cog impairment in a few select areas. The psychologist recommended aricept, so I asked for a sample from the neurologist. You would have thought I wanted heroin. I managed to talk him into giving me a month of the 5 mg samples of Aricept, but as he said "There are no clinical trials which show that Aricept helps with mild cognitive impairment."
Dunno. I'm on the second week of Aricept. The cobwebs have been wiped from my mind, and I feel like myself for the first time in more than a year. Psychosomatic? I suppose I won't know unless I stop taking it, and revert to my usual foggy self.
I think part of the problem we face as MS patients is that our impairment is relatively mild. These neurologists see lots of Alzheimers patients, some of whom can't remember their own name, so my little problems seems minute by comparison.
Another problem is that many neurologists view impairment as a systemic loss - in other words, they expect across-the-board problems. I'm perfectly coherent in conversations. I'm witty and funny (especially when I'm drunk... or at least *I* think so.) Aside from this weird tendency to spell all my words backwards, I sound just fine in written English. It's specific areas that I'm deficient in - selective memory, and attention, and information processing.
So why AREN'T there more clinical trials with MS and Aricept?
My neurologist (bless his pointy little head) seems to think that my impairment is so slight that I don't need anything at all. But I pushed for a neuro-psych exam, and got it, which showed moderate cog impairment in a few select areas. The psychologist recommended aricept, so I asked for a sample from the neurologist. You would have thought I wanted heroin. I managed to talk him into giving me a month of the 5 mg samples of Aricept, but as he said "There are no clinical trials which show that Aricept helps with mild cognitive impairment."
Dunno. I'm on the second week of Aricept. The cobwebs have been wiped from my mind, and I feel like myself for the first time in more than a year. Psychosomatic? I suppose I won't know unless I stop taking it, and revert to my usual foggy self.
I think part of the problem we face as MS patients is that our impairment is relatively mild. These neurologists see lots of Alzheimers patients, some of whom can't remember their own name, so my little problems seems minute by comparison.
Another problem is that many neurologists view impairment as a systemic loss - in other words, they expect across-the-board problems. I'm perfectly coherent in conversations. I'm witty and funny (especially when I'm drunk... or at least *I* think so.) Aside from this weird tendency to spell all my words backwards, I sound just fine in written English. It's specific areas that I'm deficient in - selective memory, and attention, and information processing.
So why AREN'T there more clinical trials with MS and Aricept?
Psychosomatic or not, I am glad to read about how well you are doing. A lot of the problems you list (passwords, too woozy for simple math, focusing on driving and picking items from the store, I'm sure there are more!) are problems I have acquired in the past year. I do a lot of stuff like programming and numerical analysis, and some days I really can't do it. But it's always hard to tell if it is because I do have cognitive impairment, or is it just beacuse my other symptoms are overwhelming me?
It is interesting to me that you note while donepezil helps your thinking, you don't feel overall "better." I don't have a diagnosis, but have experienced improved, more clear thinking when on medications that help overall symptoms (like steroids and now lyrica). So when my body is better, my mind seems better, too.
I also note that I am at my "best" (which is still not as good as my "before" normal) for the first few hours of the day, and try to arrange my work to get the most out of those hours. In the afternoons, I'm pretty much toast.
Before all of this, an afternoon coffe break was all I needed. That doesn't work anymore. I find I only benefit from morning coffee. When the afternoon mental slugishness hits (accompanied by more pronounced symptoms), I need to plug along as best as I can. I try to drink lots of cold water all day, esp. in the afternoon, I feel like it helps keep me more alert and maybe affects my core temp a bit to help with symptoms.
I continue to try and figure out if I can arrange the dosage/timing of meds (was on neurontin, just started lyrica) to maximize my work performanace. Other than that, my defenses are squeaky clean living. Healthful meals, exercise, early to bed and early to rise.
Who knows if/how we can separate primary and secondary symptoms of either body or mind? I agree that it's bad enough to feel physically terrible, but when you can see it (where "it" doesn't have a name in my case) affecting your thinking, well, "Sheesh" is an understatement!
Good luck, sounds like in time you'll better understand how much of your improvement is from the medication. Sounds like either way you are enjoying the improvements, I hope it lasts/gets better.
It is interesting to me that you note while donepezil helps your thinking, you don't feel overall "better." I don't have a diagnosis, but have experienced improved, more clear thinking when on medications that help overall symptoms (like steroids and now lyrica). So when my body is better, my mind seems better, too.
I also note that I am at my "best" (which is still not as good as my "before" normal) for the first few hours of the day, and try to arrange my work to get the most out of those hours. In the afternoons, I'm pretty much toast.
Before all of this, an afternoon coffe break was all I needed. That doesn't work anymore. I find I only benefit from morning coffee. When the afternoon mental slugishness hits (accompanied by more pronounced symptoms), I need to plug along as best as I can. I try to drink lots of cold water all day, esp. in the afternoon, I feel like it helps keep me more alert and maybe affects my core temp a bit to help with symptoms.
I continue to try and figure out if I can arrange the dosage/timing of meds (was on neurontin, just started lyrica) to maximize my work performanace. Other than that, my defenses are squeaky clean living. Healthful meals, exercise, early to bed and early to rise.
Who knows if/how we can separate primary and secondary symptoms of either body or mind? I agree that it's bad enough to feel physically terrible, but when you can see it (where "it" doesn't have a name in my case) affecting your thinking, well, "Sheesh" is an understatement!
Good luck, sounds like in time you'll better understand how much of your improvement is from the medication. Sounds like either way you are enjoying the improvements, I hope it lasts/gets better.
So far, so good - no upchucking (fingers crossed)
On Friday, we went to the grocery store. We went through the store, and I had better luck finding the stuff I wanted on the shelves. Lots of times my eyes don't process what's in front of me, and it's hard to find a specific item. It was a lot easier this time.
Then we got to the cash register, and the cashier didn't give me the correct change. I looked at the change in my hand, said hey, wait a second, and stopped the cashier so that she could actually give me the correct change (it was off by 40¢ or so.) Usually I'm so tired and woozy by the time we get to the cash register that I'm not alert enough to catch mistakes.
I have to say that this drug doesn't make me feel 'better.' I have fatigue, my muscles are twitching a lot this week, my eyes are doubling up, and my legs are acting wonky. But this disease is a lot easier to take when I can think clearly! It's bad enough to feel terrible, but when your brain doesn't work... sheesh.
On Friday, we went to the grocery store. We went through the store, and I had better luck finding the stuff I wanted on the shelves. Lots of times my eyes don't process what's in front of me, and it's hard to find a specific item. It was a lot easier this time.
Then we got to the cash register, and the cashier didn't give me the correct change. I looked at the change in my hand, said hey, wait a second, and stopped the cashier so that she could actually give me the correct change (it was off by 40¢ or so.) Usually I'm so tired and woozy by the time we get to the cash register that I'm not alert enough to catch mistakes.
I have to say that this drug doesn't make me feel 'better.' I have fatigue, my muscles are twitching a lot this week, my eyes are doubling up, and my legs are acting wonky. But this disease is a lot easier to take when I can think clearly! It's bad enough to feel terrible, but when your brain doesn't work... sheesh.
Keep us posted--this is encouraging news. The Provigil is helping for the fatigue and actually helps with cognition, but I still have Teflon Brain. I've been on estrogen for a long time, and it hasn't done anything for this.
Maybe your stomache issues will settle when your body gets used to the drug (fingers crossed).
Lots of hugs,
Deb
Maybe your stomache issues will settle when your body gets used to the drug (fingers crossed).
Lots of hugs,
Deb
That is wonderful news. I'm glad everything is working out for you but I hope you don't get any of the side effects.
Go ahead and play..why not?
HUGS
Go ahead and play..why not?
HUGS
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