Provigil/Modafinil

[Clematis]

I am reading this thread with great interest. I was DXed ADHD many years ago and was on adder all for years. I stopped a year or two before DS as my BP was climbing. I miss the mental acuity. I am embarrassed and horrified at my own attention span/memory issues. (No where near as scary as when I was on statins and became aphasic, forgot my own birthdate and was getting lost in my own neighborhood.) I have a stack of books I must read and projects I must complete but get distracted and am feeling anxious because I am so far behind. The most disturbing is when someone says, "Don't you remember that..." and I have no memory of it. If I forgot something in the past, a reminder would have the memory flood back, but no longer. I was getting belligerent: "You never told me that!" but it was happening so often that now I have to accept that, yeah, they probably did and my brain is a sieve. (And I have been struggling to stay awake during the day but that's due to getting up in the night to pee and not being able to fall back asleep.) I have years-old adder all and was considering taking some but am loathe to increase my BP nor do I was anything in my system that would raise eyebrows and prevent getting morphine if I need to go to the ER for kidney stones. Now that I read about modafinil (JESUS MARY AND JOSEPH I had to scroll back 2x just to remember how to spell it!!) it may be an option, but it too can increase BP. Keep us posted on how this works for you @DianaCox

 

[Spiky Bugger]

@Clematis " ...when I was on statins and became aphasic, forgot my own birthdate and was getting lost in my own neighborhood.) I have a stack of books I must read and projects I must complete..."

Statins do this? Mr Sue takes statins...

 

[Clematis]

My heart aches for you @Spiky Bugger. Just at a time when we expect stability, getting older is full of so much change and almost all of it sucks. (I do like the Ruth Gordon phase I'm entering where I say whatever I want and usually don't give a shit what anyone thinks.) Probably haven't thought about that Helen Reddy song since it came out when, in my youth, I dismissed it as sappy. To see the lyrics now made me cry too but for different reasons.

I've been the caregiver for both my parents with dementia and I see my husband heading that way too. The one thing I learned to keep my sanity (if in fact I have kept it) is that I always tried to see the humor in their decline. Yeah, that may sound insensitive, but so be it. My parents were funny people and liked to make jokes and laugh. Medical personnel thought I was cruel when I'd burst out laughing when my parents said or did something bizarre but my parents laughed too and felt better because of it. Like when my hallucinating father called me to say that I'd better get over there fast b/c all these LAWYERS were crawling in the window to steal his money and I told him they must just be passing through b/c no lawyer I ever knew would do that much work without a retainer, He laughed and relaxed. Or when he asked if he should be concerned that two strange men were sitting at the table and I said yes because he only had one chair. (I made light of what they said without actually telling them their very-real-to-them hallucinations/delusions were wrong.) If my husband had come back from the store and said he was nervous around the deli clerk I would have joked that the clerk was too sexy for him.

But my husband is at the early stages so I still snap "What the hell?? Where's the fucking salami? It's right here on the goddamned list!" There's going to be plenty of time for the humor. Later.

 

[Clematis]

OMG get him off the damed statins. One month won't kill him. See if you notice an improvement

 

[DianaCox]

Just took my BP, about 45 min after taking my 1/2 pill (50mg) - 106/58. I normally have low BP so I wouldn't mind a small boost so I don't get woozy putting my arms over my head and standing up quickly.

Fell asleep about 12:45 am with my usual combo of 0.5 mg of Ativan and 1/2 pill (I make good use of pill cutters) of Lunesta (1.5 mg). Woke up just before 6:30. I'd like a little more sleep but that's pretty normal for me. I took the Provigil at 8:30 (90 min earlier than yesterday) to see how that goes.

 

[Munchkin]

Have been looking for a pill all my life that would literally and figuratively turn me into Wonder Woman. You may have found one with a side effect of losing weight. Maybe you could cut those pills into 4 pieces?

Spiky, once upon a time we heard that almost everyone should be on statins and on a fat free diet. There has even been talk about making Lipitor available OTC. Today we know fat is good and sugar/carbs are evil. What will we know next week? I have heard more than a couple fairly believable stories about statins causing problems with mentation.

I am not a gerontologist and I don't play one on TV. But I have spent years, paid and unpaid, taking care of older people. My take on this is that almost all older people are overmedicated. And all these meds and the interactions they cause are not always beneficial. The elderly tend to have different or more intense drug interaction problems than the general population.

I am 100% certain I have seen cases of drug induced dementia and anxiety. Many caused by drugs thought to be relatively innocuous and safe for the general population. Some of the worst offenders I have seen are BP meds. They lower your BP to the point where you no longer get enough blood flow to the brain and therefore appear to be demented. Older people who are dehydrated or have a UTI often appear to be demented. So don't give up searching for a cause and just know the answer could be right in your medicine cabinet.

 

[CaitlynR]

YMMV, of course, but I never have had any effect on blood pressure from provigil or Nuvigil. I tend to be sensitive to anything that may increase bp so I was very happy to not have any negative effects.

 

[Susan in Tennessee]

@Clematis " ...when I was on statins and became aphasic, forgot my own birthdate and was getting lost in my own neighborhood.) I have a stack of books I must read and projects I must complete..."

Statins do this? Mr Sue takes statins...

Yes! They do it. My hubby was on them and got weird and very "out there". I talked him into quitting them and weathered the "you just want me to die remarks" but I knew that was his weirded out state of mind talking. He still has memory issues and I'm very worried. He does not like to talk of it at all. He IS 8 days shy of being 75 (he robbed the cradle ) so I don't know if it's usual old age stuff or something else, and it's so scary. It seems, as you said, Spiky, that he has short fuse and no patience, which is not his previous personality. He also asks some very strange questions and I can tell he sits and stews over things a lot. He makes lists like crazy because he knows he can't remember well anymore. Just when I am thinking he's so bad off I forget something and he reminds ME! Heck, I was standing in the kitchen the other night and was talking to him and popped my vitamins in my mouth and swallowed, then realized it was Trixie, the epileptic dog who was to get the pills. I downed her phenobarbital dose slick as a whistle. I googled quickly and decided I'd be fine, I did get a bit sleepy, or imagined I did anyway! My cousin said to me the other day, "life is wonderful, until it's not"!

 

[Susan in Tennessee]

My heart aches for you @Spiky Bugger. Just at a time when we expect stability, getting older is full of so much change and almost all of it sucks. (I do like the Ruth Gordon phase I'm entering where I say whatever I want and usually don't give a shit what anyone thinks.) Probably haven't thought about that Helen Reddy song since it came out when, in my youth, I dismissed it as sappy. To see the lyrics now made me cry too but for different reasons.

I've been the caregiver for both my parents with dementia and I see my husband heading that way too. The one thing I learned to keep my sanity (if in fact I have kept it) is that I always tried to see the humor in their decline. Yeah, that may sound insensitive, but so be it. My parents were funny people and liked to make jokes and laugh. Medical personnel thought I was cruel when I'd burst out laughing when my parents said or did something bizarre but my parents laughed too and felt better because of it. Like when my hallucinating father called me to say that I'd better get over there fast b/c all these LAWYERS were crawling in the window to steal his money and I told him they must just be passing through b/c no lawyer I ever knew would do that much work without a retainer, He laughed and relaxed. Or when he asked if he should be concerned that two strange men were sitting at the table and I said yes because he only had one chair. (I made light of what they said without actually telling them their very-real-to-them hallucinations/delusions were wrong.) If my husband had come back from the store and said he was nervous around the deli clerk I would have joked that the clerk was too sexy for him.

But my husband is at the early stages so I still snap "What the hell?? Where's the fucking salami? It's right here on the goddamned list!" There's going to be plenty of time for the humor. Later.

I'm still in the snapping stage!

 

[Spiky Bugger]

My heart aches for you @Spiky Bugger. Just at a time when we expect stability, getting older is full of so much change and almost all of it sucks. (I do like the Ruth Gordon phase I'm entering where I say whatever I want and usually don't give a shit what anyone thinks.) Probably haven't thought about that Helen Reddy song since it came out when, in my youth, I dismissed it as sappy. To see the lyrics now made me cry too but for different reasons.

I've been the caregiver for both my parents with dementia and I see my husband heading that way too. The one thing I learned to keep my sanity (if in fact I have kept it) is that I always tried to see the humor in their decline. Yeah, that may sound insensitive, but so be it. My parents were funny people and liked to make jokes and laugh. Medical personnel thought I was cruel when I'd burst out laughing when my parents said or did something bizarre but my parents laughed too and felt better because of it. Like when my hallucinating father called me to say that I'd better get over there fast b/c all these LAWYERS were crawling in the window to steal his money and I told him they must just be passing through b/c no lawyer I ever knew would do that much work without a retainer, He laughed and relaxed. Or when he asked if he should be concerned that two strange men were sitting at the table and I said yes because he only had one chair. (I made light of what they said without actually telling them their very-real-to-them hallucinations/delusions were wrong.) If my husband had come back from the store and said he was nervous around the deli clerk I would have joked that the clerk was too sexy for him.

But my husband is at the early stages so I still snap "What the hell?? Where's the fucking salami? It's right here on the goddamned list!" There's going to be plenty of time for the humor. Later.

Too funny.

Back in the day, when I'd forget something, my mom...already elderly and forgetful...would say, "I'm telling you...that's how it starts."

Now it's my turn.

 

[Spiky Bugger]

Have been looking for a pill all my life that would literally and figuratively turn me into Wonder Woman. You may have found one with a side effect of losing weight. Maybe you could cut those pills into 4 pieces?

Spiky, once upon a time we heard that almost everyone should be on statins and on a fat free diet. There has even been talk about making Lipitor available OTC. Today we know fat is good and sugar/carbs are evil. What will we know next week? I have heard more than a couple fairly believable stories about statins causing problems with mentation.

I am not a gerontologist and I don't play one on TV. But I have spent years, paid and unpaid, taking care of older people. My take on this is that almost all older people are overmedicated. And all these meds and the interactions they cause are not always beneficial. The elderly tend to have different or more intense drug interaction problems than the general population.

I am 100% certain I have seen cases of drug induced dementia and anxiety. Many caused by drugs thought to be relatively innocuous and safe for the general population. Some of the worst offenders I have seen are BP meds. They lower your BP to the point where you no longer get enough blood flow to the brain and therefore appear to be demented. Older people who are dehydrated or have a UTI often appear to be demented. So don't give up searching for a cause and just know the answer could be right in your medicine cabinet.

Mr Sue was good at diagnosing my mom's UTIs. He'd hear me talking to her, my voice getting more and more tense, and my ending the conversation with a sharp, "Mom! I've gotta go. We'll talk later."

And Mr Sue would glance at me and ask, "Time for Grandma to pee in a bottle?"

ETA...I recall some doctor telling me he wanted ALL his patients on statins. I still declined.

 

[Duckman]

is peeing in a bottle not normal?

In the middle of a 24 hour urine collection here, thinking about pee a lot

 

[Spiky Bugger]

is peeing in a bottle not normal?

In the middle of a 24 hour urine collection here, thinking about pee a lot

For my mom, it became VERY normal. Half way to a diagnosis of sepsis!

Stones?

 

[KathrynK]

I have been interested in the nutritional causes of memory dysfunction, and the role of DS over the long term. I am not extremely alarmed by what I am reading, but it reinforces the essential role vitamin replacement has over a lifetime.
There is research that low vitamin D, A and vitamin E are associated with cognitive impairment. Zinc and selenium are also involved. Glucose metabolism in the brain also affects memory, and going from diabetes preop to hypoglycemia postoperative might be part of my memory loss. Regular eating can prevent the wide swings in blood sugar that are neurotoxic.
I have maintained “normal”levels of D,E, and zinc, but adjustments in dose have been made along the way. So, there have been times I was out of range, and I’m not sure what effect those periods have had.
Fat is important for the brain, and by definition we don’t absorb fat. I am not sure I can increase the fat in my diet more than I have, but I am conscious that a low-fat diet after DS might have brain effects. There is some interesting research on the topic https://academic.oup.com/aje/article/150/1/37/64304/Association-of-Antioxidants-with-Memory-in-a
I think the aging DS patient has to think about this link, but I am not sure what you can do beyond keeping levels as close to normal as possible.
We don’t have the same risk of dementia as RNY patients and vitamin B malabsorption. Since I am a neurology patient because of my pre-DS injury and epilepsy, my neurologist checks my B vitamins annually and we’ve increased the dose over time.

Nutritional adequacy after DS is so complicated and we are trailblazers in defining what happens with aging after DS. I wouldn’t have lived to age 66 without DS, but I’d like to hang on to as many brain cells as possible!
[BTW, I had a very hard time posting this. I kept getting bounced back to other pages and had to navigate back to this thread repeatedly]

 

[hilary1617]

Virtual hugs. That's all!