Have any of you had cognitive issues longterm?

saluki · November 2007

Its been 5 years since my diagnosis, and although I'm 58 and am on Femara there are some big gaps in my functioning that really need to be addressed. I thought that I may be one of those that have long term cognitive deficits from chemo, and that and estrogen deprivation from femara were the culprits. My sister seems to think its unrealistic to think chemo brain can go on so long. ---

Its not in all areas that I'm having difficulty, but some of them are just blaring---I knew I was loosing time but was at a loss to explain why. But some of the simplest tasks that should be on automatic pilot have become real gaps.

Yesterday, I came into the kitchen to get some coffee to start my day. I caught myself trying to pour hot water into a serving tray without a cup and it really took me a few minutes to think of what I needed to put the water in. When I came to the conclusion what I needed was the cup I tried to put the coffee directly into the cup---And this was not instant coffee----I needed to put it in a coffee press to steep. -----And its not like anything is distracting me----And don't even mention the word shower---half the time I have no idea what I did in there and could probably stay in there all day rewashing my hair because I have not a clue if I've done it or not--heck--I don't have a clue if I've done anything in the shower. ---though I've finally given myself a break about that---figuring I'll try again tomorrow---

Trader Joes has become a way of life for me cause I can get frozen penne to nuke. Heaven forfend I have to boil water because I'll boil that water till it all evaporates burns out and have to do it over again--over and over. So if it isn't a quick stir-fry---it can go on forever.

Don't even talk about bills-- getting my mail in the door and knowing where I put it is a monumental achievement as one after another utility threatens to turn off service for bills that I don't have a clue I've gotten. I went to put out the cat litter last week only to discover waste management had come into my yard and removed my trash can for non payment. And the week before the credit card company raised my interest to 25%. I'd be more than happy to pay if I knew I received them or knew where they are.

All these things that were so taken for granted and automatic are gone. I can't stay on task,

or focus. I have the attention span of a gnat. Combine that with the unrelenting fatigue and insomnia---(always wondered how you could have both at the same time.)

I was taking Strattera and for me it was a miracle medication. I gained time and focus--had a big improvement in quality of life and, although, I think my Doc was skeptical because it is not used for that-enjoyed some pain relief.

Anyway, I had liver toxicity from it so it had to be discontinued.

So, lately I'm going backwards again.

Have any of you had Cognitive testing? If so, did your insurance pay? And if you did, did your treatment change as a result of the tests. ---Or did you just go through the testing to solely

find out where your deficits were?

Am I in the minority in having these problems so far out from initial treatment? I see this addressed with the gals one and two years out but how bout gals that are further out of treatment?

Yes, my full time job has become making systems and workarounds, but as quickly as I have

come up with one solution there just seems to be another obstacle to things that have always been taken for granted. -----It just seems to mindboggling to me to be able to handle some thought proccesses so clearly ,and yet other ones that should be automatic become so frustrating.

Anonymous · November 2007

Oh, Susie, I soooo do hear you. However, I did have some of this before bc. So, do I blame it all on chemo and Arimidex? And, I was recently dxd with small vessel disease and I don't know if that's kicked in or how long I've had it. However, I have noticed MORE problems with focusing, remembering what the hell I was looking for, stupid little things like putting coffee in the coffee maker and turning on the burner to make the tea. One day I made tea and I was very weak. FINALLY, after my second glass I realized I must not have boiled the tea. And I don't remember NOT boiling it, but just used some "logic." I was stumped for a while.

I'm finding myself more anxious than normal. I don't know if it's because I'm so damned concerned about this stuff....worried that it could be the small vessel crap.

I haven't had any cognitive tests. Just the MRI that showed the small vessel crap. And, I haven't talked to my primary care doc since I was dxd. I will see him next month.

Didn't you say you had fibromyalsia. You already know that can cause fibro fog. And, you also know fatigue and insomnia can greatly play a role in how our brain works.

I'm hoping at Thanksgiving when my family is here that I can see if there's a difference. My problem is, I'm gonna get all nervous (anxious) about all the stuff I HAVE to do. The anxiety is worse.

I think I'm losing IT! Cry

Shirley

BTW, I finished AC/Taxol in May of '05 and after rads and mast I did Xeloda 6 months and finished that in April '06. Started Arimidex in May '06.

Sierra · November 2007

Hi Gals:

Just caught this as I was going off

here,,

but I certainly do have some issues

and am supposed to be going

for a chat at my centre

and they will give me some tips

have to book it

It is related to memory as well

I am several years out

and still have trouble concentrating

at times. A joke here

the other day, I found a banana

in my cutlery drawer ((

Yes, Ive been busy Also, forget to change my clock
and called my friend the other day to say
I am waiting for you.. LOL

Saluki: No, I will not be paying for this
and I went to my centre and reported this
recently, as I have been depressed somewhat
about it, not too good when looking for work
either

The gal who has the keys to my apt
to feed kitty.. I saw her in supermarket
the other day, and she said hello, well
I could not even realize instantly who she was
(not good)

However, would like to improve my

memory skills etc.

Best

TenderIsOurMight · November 2007

I'm six year out from chemotherapy, and on year 51/2 of hormone therapy (41/2 of Arimidex). I had onset of cognitive decline during chemotherapy, but it dramatically has worsened ever since.

I did have neuropsychologic testing, as I also had a neuropathy and it was recommended. It showed immediate memory compromise (there is also short term, intermediate, and long term memory from what I understand). I understood the Ph.D. tester to say that information may not be immediately remembered, yet down the road some, be remembered. Weird. The testing also showed word recall problems, math skill decline from expected education and I can't remember what else. The summary was I had executive functioning compromise, with memory impairment. We repeated the test one year later with some improvement noted in reading, vocabulary, but the immediate memory was still compromised as was reasoning, or logic. The tests were not specific for breast cancer patients, rather general population.

I can't remember if I took one of my meds within a minute or so. This terrifies me. I stand in front of my medicine cabinet and literally can't remember if I swallowed my Arimidex. I tried techniques such as moving the bottle from a to be taken to a taken position in the bathroom, but then couldn't remember if I had put it back to the to be taken from the taken position. So then I would think, well I can't take two pills, so I'll wait 12 hours, and then take it. This I did, and I find that taking it at 6 p.m. and then again 6 a.m., then getting back on track for 6 p.m. pretty much works. But now I use a 4 times a day pill dispenser as I have several meds.

I find this to be humiliating. I know I shouldn't, but it's just I never had these problems before. It scares me, makes me feel upset, and embarrassed.

I kept closing the automatic car garage with the electronic device, and it kept going down and not closing. So I kept hitting the device, three, four times until finally I realized the car rear bumper was in the way of the door. Nice hole in the brand new cars paint. Every time I see it I get upset: I never use to be this way.

I burned my hand pouring coffee, then moved the coffee cup and proceeded to pour the boiling water right on the burn site. Ended up with a second degree burn.

Well, this is too much about me. But it's my way of saying Saluki, that I truly believe the Arimidex, superimposed on the chemobrain, causes significant executive (reasoning) problems. A blankness of the mind. It's scary and and I'm sorry you and others are bothered by it too.

Shirley, I wish to let you know, that my Dad has small vessel disease of the brain on MRI and he is basically fine. His neurologist said sometimes the scan is much worse than how the patient truly is. A mismatch. I hope your doctor might comfort you some in this regard, relax you some. If not, maybe review your MRI with a neuroradiologist. He or she may affirm they see a lot of brain changes with age, and the literature confirms all patients are different in what is clinically demonstrated. Then, just keep using your brain, on us! Read, write, arithmetic. That's how we help avoid the aging brain!

Thanks for starting this thread, Saluki. And Sierra, I hear you when you don't "recognize" someone whom you know well. Brain blank. Hormonobrain. Or is it hormonalbrain. Whatever....

Tender

Anonymous · November 2007

Thanks, Tender, for your advice.

I do try to read ESPECIALLY the things that are provided on this site. Sometimes it's a bit over my head and I have to read it more than once. LOL

Some days are better than others. And that's a good thing. Wink

Shirley

JoanofArdmore · November 2007

I never had chemo brain.

But I was already post meno, and had lost a bit during & after menopause.So no, chemo did nothing to me.

And femara did nothing to me.

UNTIL RECENTLY.

And now it has come on quadruple-time.And it is SO frightening!

I do things like you girls mentioned, plus Susie once spoke of burning her hand and spending all day trying to get a bandaid on the burn.Yes.I KNOW now!I now do THIS sort of thing all the time too.Go into a room for something, lose my focus, wind up tweezing my moustache, think I'm done, dog standing w/his legs crossed leashed at the door, and I still forgot to--whatever I was setting out to do an hour ago.

Here is the worst thing I did lately:

I was early about my work one day.So thought to catch up on some phone calls.It was early enough to call people, and I had time to talk.Picked up the phone which has my friend's # on speed dial.The printouit said "Extension in use." Duh?

I "ran" around my large apartment, checking all the phones.None were off the cradles.???duh?

Pick up the phone again, "extension in use" Press "phone", YIKES!A long, hideous fax noise!!

WTF??

THEN I get angry.Wires crossed.Or maybe someone purposely tapped into my wire in the phone box, to send these faxes!

I wait til after 5.

Still faxes.

I try leaving my phone off the hook, hoping to ruin their fax transmission.Nada.

Furious at 6:30, I go down to garage, get my cell out of car.

I call phone co.(A whole comedy of errors takes place with me requesting SERVICE and them giving me tech support for DSL.)The yelling was satisfying.

Buit all they could do when they understood my problem was to promise a tech "between 7 and 5" on Monday.(OK, it was Friday, I see)

This was SO unacceptable!"I'm supposed to be w/out phone OR internet ALL WEEKEND???"

More apologies.A $25 deduction from my bill.

I hang up steaming.

Keep trying my phones.Still fax.

Decided to try computer.

Which was hibernating.

I click space bar, and...AOL comes on.

OMG!!I left my computer online.All night & day!!

"Something" obviously distracted me when I was online the night before.And since I "have the attention span of a gnat"...I even forgot that I was distracted,or that I was once online.

And it is things like this, along with this dizziness and cotton-stuffed feeling in my head, that makes me feel I definately need a keeper!

When things like this happen, I truely feel like crying.

I have an appointment w/my onc, check-up, next week.And I'm seriously considering telling him I just cant take it any more.The pain, the constant pain is one thing.But when you have to make hashmarks on your hand w/a pen--- every time you take Advil (or else you will take it every 20 minutes)....this is getting to be TOOOO much.

Yes I miss my mind the most.And I am losing it more every day.I think I might have joked to you guys (or to SOMEONE) that I have to write down whenI have fed Woody.Or I would feed him 5X a day.

I wander in Whole Foods for hours, even with a list.Being distracted, finding other things, starting a whole new menue.And then forgetting something I need for IT.Forget the things on my original LIST.

I'm sorry to whine for hours, and you know I'm usually flip, but by now I'm grim.And yes, seriously thinking I can NOT take another year of this.

I've got "The Cold".And am refusing to see doc.Am taking homeopathics.Which have to be taken every 2 hours or such.This is taking SO much out of me!!

Plus last night I found I was out of Flonase.Which I use before bed, to keep my sinus in check overnight.So I called and refilled Flonase-my insurance gives me 3 bottles at a time.And since prices will be rising next year on medicare D, I refilled a 3-pack of Femara, too.$50 this year! Next, today , I put my car in for inspection.And only an hour ago realized I need the Flonase but cant get it.No car.

And I dont think I will be using the 3pack of Femara at all.

But when you have no mind...it's like these things have been done by someone else.

I am truely sick and disgusted.And have carefully written all this in a thread where there are just we old AI-users, so as not to influence AI newbies.Because I'm really serious about quitting.I'm thinking this must be Nature's way of telling me that I shouldnt take any more AI.(Either that or check into an Assisted Care facility!)

I'm thinking it is Nature's way of telling me my own supplimental estrogen is low enough, w/OUT femara.I'm thinking it's Nature's way of telling me "Joan, this isnt GOOD for you!"

Sorry for the huge whine.And I havent got a bit of cheese to go with it.

saluki · November 2007

Oh Tender,

Don't even talk about the pill problems. Yes, I had Monday-Sunday pill boxes but once I removed the pills from the bottles I had a heck of a time keeping track of what needed to be refilled.

Making it problematic was the fact that I could only have a thirty day supply and all the meds had different refill dates--so unless I could actually see it running down in the bottle I wouldn't remember to refill it.

One of our BCO gals had so many pills she needed a tackle box to keep them straight.

And since my pain meds are as needed, I often would not take one when it was sorely needed because I couldn't remember if I'd just took it. As a result I'd wait hours until it was safe to take another dose--just in case! I can hold a bottle of medicine in my hand for four hours and not realize I'm holding it--and four hours later I'll still be holding the same bottle and not know whether I took what I was holding. Maybe a one day pill dispenser would work better.--But I

can't count on remembering to fill it. Still working on the pill situation.

I certainly can relate to the burn business as well. All I have to do is look at the scars on my arm as a reminder of truly dumb things I've done with hot objects. Fortunately, I no longer have a garage so, I no longer have to worry about using the garage door opener while standing in the way and hitting myself in the head while trying to close it---See you are not alone Tender!

Shirley, I don't have Fibro--What I do have is Reflex Sympathetic Dystrophy RSD aka CRPS Complex Regional Pain Syndrome aka Causalgia. Fortunately I have type II -the kind that can occur from a traumatic injury--Which I like to think is less likely to go full body. That is why I was treated with anti-convulsants.

I think the reason I became a zombie on the anti-convulsants [neuronton (gabapentin) Lyrica, Keppra, Topamax etc.] was probably because I already had cognitive issues from BC treatment.

I was talking to my Psycologist who concentrates on physical disabilities and was she who suggested the cognitive testing but, if its going to be a major expense without being covered by insurance, --I need to know that its going to be worthwhile. I have considered that it may give them a baseline; so, if they try me on another Strattera like medication they would be able to judge the progress or lack of it.

Sierra ---I'm now carrying a memory book everywhere I go. Don't feel bad about the banana.

I did the same thing with some chicken salad--Instead of the fridge I put it in a cupboard.

Couldn't find it for months.---

Maybe you'll have some tips to share with us after the chat at your center.

We can use all the help we can get.

Take care,

Susie

saluki · November 2007

Joan---I think what is truly horrifying is when this stuff effects our fur babies. I thankfully don't have to worry about my little Bichon and her food as she is a self feeder and a finicky one at that.

But, I can't tell you how many times lately I've put her out to do her business and forgot she was out there. And a few weeks ago I actually locked the door. I closed up shop and wondered

a few hours later why she wasn't coming to bed!

I was wondering how you coped with WF because I've literally gotten completely crazed and overwhelmed in the parking lot after just going in for a few items.

Frankly, I've been able to cope with most of Femara's SE's but this one which no one seems to address has been the topper. Why this is not addressed is beyond me.

And honestly, I'm starting to wonder if this impairment is going to reverse once we are off this stuff. Do they know that one?

Sierra · November 2007

Morning to all:

Thanks for more input here

Oh, my putting out furbaby and forgetting

I can imagine that happening

and Susie: I laughed when

realizing banana was in drawer

as we all know, this is just one of many

things I did do a double take however,

when not recognizing a person who has keys!! to my residence

mind I dont see her that often, but till this is not me

For Tender: sorry (forgot to post to you) but came back
Watch those burns, goodness me

I will say here: that prior to BC

DX.. I was on HRT.. worked for lawyers

at one time, had to be sharp, but

at menopausal time, noticed some concentration

and memory issues, after taking the HRT it did improve

course BC DX.. and they take you off it PRONTO

I am going to buy some small pocket

type pads to write notes on

Also, am getting some important documents in order

NOW... IE MY FILES..

They are not going to test me, they say

but give me tips, expect it would cost them a fortune

to give us all testing here.. and I can bet there

are many going in for this booking I complained of

depression, due to this, as it is depressing and frightening

to not remember things

While I am in here, if there is anyone

who does the Sudoku .. drop me a note plse

because I cant .. even get started on it

I take BP meds too and forget whether or not

but then again take about .. 30 vitamins a day

or more Might start on Rhodiola Rosea

Anyone taking Gingseng? I take that as well

I know we all have the issue of
looking at people and forgetting their names
but.. people in my apt complex.. are beginning
to think I am losing it... LOL>>>> and they are 80 (some)
I am a lot younger

)

TenderIsOurMight · November 2007

Good Morning All,

Geesh... this thread is actually very comical if you step away from the problem and read all the stupid things we've collectively done! Can you imagine a skit on Saturday Night Live with a bunch of us re-inacting our "banana's in the draw" and Joan's busy work phone?

Maybe we should all get together and just act normally. It might be rather hilarious!

Joan, you're post had me in stitches this morning. Just what I needed to start my day off right!

Saluki, again thanks for the thread. Amazing the cognition is compromised that burns too become a real issue for both of us. As it is, I can't feel the bottom of my feet much, and find out when there is blood on my sock or such that something's impaled me.

Cogniting On! ( I just made up that word).

Tender

sharebear · November 2007

I know I've harped on this before on other threads, but someone mentioned the anticonvulsants. Drs. prescribe these for the neuropathy we get from chemo. From someone who has had epilepsy since I was a child, these drugs cause cognitive issues without chemo. Then add chemobrain and for me maybe some of you post menopausal and you have a blabbing idiot who can't remember her name or what she went into the other room for. I don't know how many times I've left the poor dog outside.

I've actually applied for Social Security. As an Executive Assistant (My last job was assistant to President and CEO) how do I interview for a job and go back to work. No one would hire me. If my resume wasn't in front of me with my jobs listed and what I did ...... I can't remember to tell them. Even all the post it notes and calendars don't do me any good anymore. It's a joke around my house. Sometimes the kids will say .... but mom we told you and you said we could...don't you remember!

Sharon

Anonymous · November 2007

First of all, Joan, I did the same thing you did the other night...left my puter on. I have broadband so it doesn't effect my telephone line. Anyway, I was going to go downstairs and heard something that sounded like a door squeaking. The the cat ran out of the room where the puter is. I then realized I FORGOT TO SHUT DOWN. I never do that.

I have laughed at these posts. However, it is quite scary. Like I said before, I've had problems, but it seems to be getting worse. What do I blame it on?

I find myself getting more depressed AND anxious. I hate that feeling! I don't even have the energy to be around people. Frown And on top of that I hope I'm not blabbering like an idiot.

Heck, no telling how many times I repeat myself!

Shirley

gsg · November 2007

|

V

EyesOTex · November 2007

gsg...girl, you are too funny!

I'm not on Arimidex, but I have the same problems; the title of the post drew me over here (I'm triple negative)... But...I wander around the grocery store like a lost waif...I have numerous burns in various stages of healing....have tried countless ways to remember if or when I've taken my meds (at any given time I have several bottles upside down or rightside up or laying sideways)....I can't SPELL any more, which drives me crazy...so just forget about math or logic...when someone calls me at night i don't remember it the next morning. I've wondered more than once if this is God's way of punishing me for being overly proud of my SAT scores. I just hate it, and it IS NOT FUNNY.

dc

chemo072 · November 2007

I had really bad fibro fog in early 2006 - couldn't track worth a damn, and activities of daily living slipped like crazy. There were a couple of solutions - at work, provigil helped enormously. I think they call it the "employer's little helper." and it is! It gives extreme focus, which is great for staying on task. Another work trick: one thing at a time, and no interruptions until the one thing is done. Multitasking would scatter my mind (at the time).

At home, I used the trick that my SIL uses for her DH: index cards with things that need to be done (take out trash, empty dishwasher) on the table. When the task is done, the card goes back where it lives.

So I made index cards for things I had to do everyday: eat breakfast, do dishes, pack a lunch, go to work, take vitamins. And then cards for things I did on certain days: get gas, buy groceries etc. At the beginning of each day I'd lay out the cards for the day, and then as the task was done I put the cards away. On Saturday I'd do all the weekend/get ready for my week stuff.

What else? Having a schedule - on Tuesdays I get gas, on Saturdays I go grocery shopping etc. So if it's Tuesday after work what should I do? Go get gas. Right. And getting an electronic calendar that chimed and reminded me of things helped immensely. Love that.

In terms of household stuff, radical simplication is what helped. A place for everything and everything in it's place. I still get really anxious if things are not put away because at that time it would completely derail me. Luckily things are better now. But clutter is the minds enemy.

Anyways, there are things that can help!! Hope it gets better.

TenderIsOurMight · November 2007

And i thought I was bad, dc. Med bottles in varying positions as a way to tell if you took them; too funny.

gsg, won't your pulleeasse put your post back? I didn't look when I could have and I just know it was good!

Tender

EyesOTex · November 2007

Ok, AmyaM (did I spell that right?) can you send me your index cards and some provigil, and where do I get that other med...strattera....stratttega??? and will I have to turn it at a 45 degree angle????

dc

oh...Tender...her post was her sig...and by the way, I love your posts

dang, I had to edit again for spelling

gsg · November 2007

LOL...Tender, the down arrow IS my post. Look at my sig.

TenderIsOurMight · November 2007

Haaa, omg, daaa!

Tender

gsg · November 2007

i evidently also have a short attention span, so add that to my cognitive issues list...i didn't see Eyes had already responded to Tender.

saluki · November 2007

AmyaM--How did you get your insurance to pay for Provigil? My Pain Management Doc gave me

2 weeks of sample. The best week I had in 4 years --I was sharp as a tack--but my insurance would not pay because its only indication for use was Narcolepsey and Shift work.

Even with an appeal they wouldn't give in----And I supposedly had very good insurance. --Personal Choice- Independence Blue Cross in Pa.

I needed the higher dose so it would have been 400 dollars or more out of pocket a month.

If that damn FDA would broaden the indications the insurance would be forced to pay since there are no substitutes.

The closest ones are Strattera, Ritalin, Concerta and Adderall ---all used for ADD And ADHD.

Since Strattera was screwing up my LFT's I need to find something else.

Sierra · November 2007

This thread is funny, I must say

and some good tips

However, it can get a person

depressed, as we have to function

and some of us need to be back in

the workplace.. How can one do that

when you can not even remember the name

of person standing in front of you??

at times

I have neuropathy in surgery arm,

acts up some times worse than others

and wont take any of those meds

they recommend, for one thing had an allergic

reaction to .. one of the drugs, forget the name of it

so I just rest the arm

Anyway, Id hate to tell you what I did

today, just too embarrassing

Does anyone here do Soduko? I asked before

or do figures, numbers baffle or give you a headache

as they do me?

I forget who mentioned ONE THING AT A TIME
BUT.. THAT IS KEY now for me..
do it, complete job and then move on
otherwise.. LOL

)

chemo072 · November 2007

Hey Susie,

I had a fibromyalgia dx and provigil is known to help with fibro fog. Not sure where that literature is at the moment, but my HMO didn't even blink, and now that I'm with a PPO they authorized it as well. I'm so sorry your ins. co denied it!!! AAARGH. Especially when it helped you feel "sharp as a tack."

I don't know how provigil interacts with liver stuff BTW.

Given what you describe, if you also have chronic pain (can't remember, lol, sorry), have you seen a rheum. for a fibro consult? I resisted the dx over and over, and I still do. These days I think the pain and problems were caused by undiagnosed cancer, but my rheum. says no such luck, but I think he's wrong. In any case, a fibro dx was the gate that opened up the prescription pathway.

Hmmm....there may be another way. Interestingly, the rheum is not the one who prescribes medicines for fibro. In both my HMO and now my PPO it's the psychiatrist who does that. Works for me. That pathway happened as originally I was being treated for fatigue with antidepressants - even though I repeatedly said I wasn't depressed, just anxious and way too tired (go figure, I had cancer) - and provigil was part of that whole package of prescriptions. The other parts were wellbutrin, lunesta and clonazepam. It turned out that part of the fibro fog/cognitive issues was anxiety, and the benzodiazepene (sp?) helped with that a lot. So, the solution that worked for me was: in the morning, wellbutrin (150 mg), provigil (1/3 of pill), 1/2 of the smallest dose of clonazepam. Lunesta at night as needed (not every night). I'm a lightweight when it comes to dosing, I take baby doses. My psych. is shocked that they work, but work they do.

Anyways, wish you the best. I think that your ins. co. is being too narrow in what they cover - clearly standards of care vary.

chemo072 · November 2007

"Med bottles in varying positions as a way to tell if you took them; too funny."

Umm.... Embarassed i do that too..... on the table if I have to take them, in the cupboard if I'm all done... easing cognitive strain is such a way of life for me that I forget that it's humorous, lol.

chemo072 · November 2007

Sorry, I'm posting too much but I keep forgetting everything I want to say..... Laughing

....I know a lot of cancer docs prescribe lorazepam during chemo, and IMHO lorazepam is not something to be taken lightly or very much at all. It can have serious cognitive impacts. I did a literature search on it for a friend the other day, and found an article that compared patients taking morphine to those taking ativan (lorazepam) and the morphine crowd was much sharper. (that's a little scary to me) Ativan has an amnesiac quality to it that clonazepam does not, at least for me. I personally hate ativan, but that's me. I don't know what the other benzos do.

saluki · November 2007

AmyaM, Although, some RSD patients also have Fibro--that is not the case with

me. But it is very common for people with RSD to have major problems with Focus, Fatigue, Sleep and Balance--just goes with the territory of pain.

My pain management specialist is a Physiatrist--They specialize in body mechanics, physical rehabilitation and pain management. As a matter of fact when you apply for SSDI,

they are usually the Doctors that work for The Social Security Administration and

make the determination as to whether you are disabled and no longer able to do

gainful employment so their word carries allot of weight.

Afraid it was just my plan which also was a PPO---Now I have AARP and Medicare Part D---And since I'm having a problem getting them to pay for more than 6 months of Boniva--I think Provigil will be out of the question. Never-mind the

idiot Donut hole I fall into after a few months of meds. But maybe now that my insurance has changed it may be worth pursuing again.

Actually, the whole thing about Provigil was kind of funny.

My Docs intention was that I only use it the days I had to be lucid--I guess the rest of the time I could be goofy-LOL

laureniris · November 2007

I kant spel eether!!! Plus i used to bee a good riter. not anymor. snif.

BlindedByScience · November 2007

Saluki

Now that your insurance has changed why not try again? The Provigil sounds worth trying for longer than 2 weeks if it gave you that kind of significant benefit.

I'm wondering if part of the problem could be resolved by choosing a diagnostic code that is more likely to be covered. Since Provigil is commonly prescribed for excessive daytime sleepiness, and you suffer from RSD which could easily disturb your sleep due to pain on a chronic basis, would your doctor be willing to prescribe from that perspective? It isn't only narcolepsy or sleep apnea that can cause chronic sleep deprivation....leading to excessive daytime sleepiness.

Here are some other things you might try too. I called Cephalon and asked about insurance coverage and patient assistance. From talking with them, it seems your first step is to call 800 675 8415 between 9 am and 8 pm Eastern Time to talk to the person answering their hot line. They will ask for your insurance information and do a search to find out if your current insurance covers Provigil. If not, they can transfer you to one of their Professional Services people to help you explore other options, including helping you appeal a denied claim.

They do not offer reimbursement to anyone whose insurance will cover Provigil, but if yours does not, you can find out what the program can do for you.

Also, you mentioned AARP and Medicare Part D. Below is a link to the AARP MedicareRX page where you can look up covered drugs if the plan you have is listed in the drop down menu.

https://www.aarpmedicarerx.com/look_up_drugs.html?link=LookDrug

Provigil is now on FDA Do-Not-Import list so getting it from a Canadian pharmacy would be much harder (illegal, in fact). A reputable pharmacy may not even attempt it and the others may sell conterfeit drugs. My hope is that you can qualify for insurance coverage, but I have a distant connection to one doctor who was willing to name some Canadian pharmacies in the past. Could be worth a try.

Hoping for the best!

Calico · November 2007

Oh my,

I'm with you on all of the above..

I purposly get my Femara refill the day after I run out so I can re-count the pills starting on the date of the refill (thank God they put that on there) most evenings because I don't remember if I took it or only meant to take it....it's like living in a twilight zone!!!

I don't pay bills on time either, write notes to remind me where I put stuff, I come up with fancy passwords only to forget them even though they totally make sense to me at the time. (I used to know people by their licence plate and birth dates etc.)

All these great research articles that all of you post, I read them and try to remember which vitamin is bad now and try to tell my sis due to her cancer and forget what I read.

I keep the window with the article open so I can read while I am on the phone...isn't that sad? And I once enjoyed medical stuff so much and found it very interesting.

I used to be a Realtor and could not for the life of it, write the contracts anymore, because of being mortified making an Error with all the dates that have to be kept in order to go through, to much at stake dealing with peoples money. Talking about responsibility or driving with strangers in the car, having a conversation AND concentrate on the traffic.

I am going into auto mode in the car and sometimes drive of just to remember that this is not where I intended to go...meaning, I have to have a "strategy" before I drive to remind me when I go through the middle of the city....geeezzz....I could go on and on...but....is it chemo or is it Estrogen deprivation? .....or both?

At times I think concentrating on reading articles helps because it stimulates and I think I get better, then it is back to square one.

The worst?

If I don't take notes at my daughters doctors office, I had to ask my daughter to reiterate what the doc said!!!

My daughters schoolwork: She tells me about it, subjects in class and then I forget, what homework only to ask her again half an hour later what kind of homework she has...I DO want to be part of everything and all I am is a big dumb DIZZ, I am ashamed of myself and all these little things (notepad etc.) don't help. I feel soooo useless most of the time.....

God Bless

Anonymous · November 2007

I sit here laughing then crying. It's funny, BUT IT IS NOT funny. In reality, somedays I just cry and want to be NORMAL!!!!

Tender, you said your dad was dxd with small vessel disease. My dear sil made sure to remind me that I could "get" dementia. She's the one that told my brother who was recently dxd that he had two to three years to live. Some idiot doctor from the nursing home where she works to her this and she relayed this to my brother who became quite depressed. She told me over the phone that the doc said for my brother to "make his memories now." My other brother and I were so angry. We both searched for info about SVD and no where did it give a prognosis of "dying." We both emailed my SIL and told her that. My brother with the dx said something to his psychiatrist about it and he said the doc was nuts. I WAS SO MAD. Even if it were true she should have never told my brother. I have to forgive her because she's IGNORANT!

Now, after venting about my stupid SIL who I HAVE to forgive, she and my brother told me that his doctor put him on one of the Alzheimers' drugs. That scares the crap out of me. Tender, tell me your dad isn't taking one of those drugs.

Geez, it's time to refill my weekly med boxes. Time flies. Seems like I just filled them and it's time again! LOL

Shirley

Anonymous · November 2007

Oh, yes...spelling. Or finding words. I often have to use the spell check or sit here and figure out how to even try spelling a word.

Me get a job!? No way! I get in my car and ask God to make me aware of what I'm doing (like watching the signal lights) and keep me from getting into a wreck! My mind sometimes wanders and the next thing I know I'm not paying one darn bit of attention.

I do believe since I've been on Arimidex my mind is even worse. I've "missed my mind the most" for some time, but I miss what I HAD before AIs. Yell

Shirley

Have any of you had cognitive issues longterm?

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