So this memory thing is really becoming an issue

[flutterby]

I used to have what one former employer called a "near photographic memory". That's long gone.

I have no concept of time. I can tell you if something happened, but I usually can't tell you if it was yesterday or 2 weeks ago. If I can remember if it happened.

I've gotten used to it - make light of it. The kids will say, "I've told you this 5 times already!", and I'll respond, "Really? Was I there?" easy child came in one night and said that I must have really liked that movie since I had just watched it a couple of night ago. Had no memory of seeing it.

But, I know that my memory is unreliable. I take that into account. I write things down, etc.

Well... I had ordered some stuff for difficult child from The Container Store. It came yesterday, but there was an extra box. No idea what it could have been. difficult child opened it and it was a mop. Apparently, I ordered a Smart Mop (I think it's called) off a commercial on tv, on difficult child's laptop in the living room, and I have zero memory of it. difficult child was there when I did it. And I apparently even talked about it with a friend. Zero memory of it. None. Zip. Zilch. Doesn't even ring a bell.

So, I got online and checked my account. Right under the payment for the stupid mop that I ordered (why would I order a mop???), is another charge to a place that can't be identified (the pay to name is something like SQ and some numbers) and that I have no memory of. We have had some issues at a couple of local stores that I frequent where credit card numbers are being stolen, but I have no way of knowing if that is what happened or if I bought something else. I put in a research request.

There are times when the memory is thing is bothersome, but it's becoming very disconcerting.

 

[buddy]

do any of your medications contribute to that? I remember when I took medications that made word finding difficult for me it was specifically names, for some reason I just could not pull them out. Not even name signs in my ASL setting for work... it was creepy and frustrating.

 

[Steely]

Wow -- and what is the cause of the memory loss? Has the doctor recommended anything. I think you and I chatted about Provigil, but I don't remember why that wouldn't work.

 

[flutterby]

We don't know the cause of the memory loss. It doesn't appear to be medication related. The neuropsychologist called it "mild cognitive disorder with amnesic features". That was almost 4 years ago. It is worse with higher levels of fatigue and/or pain. I also lose my words, forget what I'm talking about mid-sentence, etc, etc, etc. I've also lost my spelling - thank God for spell check. I've adjusted to it for the most part, but it can still be quite disconcerting at times.

Steely, provigil has a high (-er than I'd like) risk of psychiatric side effects and I tend to get those.

 

[flutterby]

Sometimes I will feel really spacy, like right now, and I know not to do anything or make any decisions. It's hard to explain, other than it feels like there is just a lot of space in my head - like the balloon head in the medicine head commercials. I don't know what causes that, other than sometimes it comes at the end of a migraine - but not always, and I don't have to have a migraine to have it happen. It will last anywhere from a couple of hours to a couple of days. My doctors just look at me funny when I tell them about it, so I stopped.

 

[buddy]

It sure sounds neurological. Have you had eeg's since this all started?

 

[BusynMember]

who ruled out medication? If you are comfortable that it is not the medication, I would want the doctor to order a CAT scan to make sure everything is A-ok. Certain disorders cause memory problems, such as Multiple Sclerosis. With your heart problem, do you have enough blood flowing to your brain? Are you going through early menopause? I would consider taking a hormone level. (((Hugs)))...I hope you find the answer soon and can fix it.

 

[flutterby]

I've had MRI's with and without contrast. This started pre- most of the medication I currently take. Heart and arteries are good. Hormone levels are good.

They really don't have a good answer for me. It's been going on for a long time now. It's just that some things that come with it are more...troubling...than others.

 

[HaoZi]

It sounds scary as all get out. *hugs* I wish I knew some way to help.

 

[InsaneCdn]

Ever had an oxygen monitor? I'm wondering if inconsistent oxygen levels might have this effect...

 

[susiestar]

(((((hugs))))) I know how frustrating this can be. I have to be VERY careful with my medications because I tend to lose them. Or forget which dose I have taken and which I am supposed to take. I end up setting up a month worth and then losing a week (each week is a separate box). I have had to give them to husband and have him give me one each week or I lose them. Recently I found a box iwth several weeks worth of medications in it. I know I went for a few days at a time taking the bare mnimum I can take with-o having side effects because I couldn't find my medications for that week. I am super super careful with these because they are super strong pain medications and the doctor doesn't give you more if you run out or drop them in something. This is why I brought husband into it - I was losing them and freaking out.

My family says I have a "garbage can" memory because I remember all sorts of idiotic trivia like what I was wearing when i did a certain thing or an entire conversation verbatim, but now? I am forgetting imporant things and only remembering stupid trivia stuff.

I know exactly that rather freaked out look the docs get when you ask about it. Often they seem more upset than I do, or than my mom does. We both go through it.

is it like what they describe as "fibro fog" (google the term for some good examples) or is it more serious? When I was in high school my mom had a year when she could not remember ANYTHING. I had health problems and in the morning I couldn't walk to school. It was maybe ten blocks and in the afternoon wasn't a problem, but morning were awful and my legs sometimes just locked up and wouldn't bend with-o massage and medications. So my mom drove me to school. They changed the time school started about a month into the year. We started 25 min earlier and I was late every single morning because my mom just couldn't remember we had to leave earlier. I got a lot of grief from my teacher and the attendance officer until they talked iwth my mom and my doctor sent a note. The doctor said they could either give me home bound instruction for all my morning classes or they could just relax and ignore the tardies - he was happy to make iether one happen. They didn't like him but at the time if the doctor wrote out that a student needed homebound ed for the morning but reg ed the afternoon they couldn't do anyhting but provide it. They really didn't want to, lol.

There are things you can do. My mom's motto for coping with the world is "Physical solutions for physical problems." If you cannot reach, get a stool or get someone tall to do it. If you can't remember doing something, write it down. She is a genius at finding ways to solve problems and cope with challenges.

Can you get a little notebook and keep it with your charge/debit card? I know you have a checkbook, but that is big and bulky. Maybe just get a long thin piece of paper, like from a roll of register tape? and wrap that around your credit/debit card? Each time you use the card, write the item and amt down on the paper. Then wrap it around the card and put it in your purse. If nothing else, you will know what you bought and the amt. You can find other ways to remind yourself of things.

It might be handy to get some 2 or 3 part carbonless sales forms. You write things that you need to remember down and put one copy on the wall, taped on the edge of the computer, wherever is appropriate. Then you can look through the originals left on the pad if you lose a copy. You can give difficult child lists of chores and/or stuff you need/want her to do and then you each have a copy so she can't say you didn't tell her and if it is off the wall you can see that you did tell her to do it. This can also help with the "you said it was OK!" stuff. You will have a copy of a note that you wrote saying you gave her the okay to do X and Y. If she comes in and says "you said I could do Q and Z", you will have a note where you didn't.

This was a HUGE help for my mom and I. I couldn't get away with telling her she said "okay" because she never gave a verbal okay - it had to be written to count. So if I couldn't produce a note from her, then I was in trouble. If she DID say I could, then I had the note and she had a copy of it also.

 

[Hound dog]

Hmm. Same thing with the memory here of course, varies from day to day. But I don't think I've *yet* ordered something and not remembered it. If you hadn't evidently told a friend about the mop....I'd wonder if difficult child weren't possibly taking advantage of the memory deal. I mean difficult child + teen, ya know.

That I have to confess, would really bother me. Money is a serious thing, especially with a tight budget. I'd not like to think I'm ordering things I'm not going to remember later......and may do it repeatedly to one day find I have no funds and no idea where they went. That it would be relatively simple for someone to take advantage of that sort of memory loss, would just take it to a new level.

Maybe you could cope with this by keeping written records of purchases, especially those done online?

 

[flutterby]

difficult child kept a record of the purchase, because since I did it on her laptop and it isn't hooked to a printer she did a print-screen and copied the receipt to Word. difficult child won't order things without permission. She always asks. I have no worries in that area. And even if she were, it wouldn't be a mop. LOL! Clothes or makeup, but not a mop. Mainly, because she's the one that has to use it. It's too painful for me.

I get brain fog (my term for fibro fog). This is different. Brain fog is when I lose concept of time - I'll lose days or weeks - or am going somewhere and start driving as if I'm going somewhere else. Not getting lost, just going to the wrong destination. Or forgetting a doctor appointment (that happens a lot - and I have it on 2 computer calendars that remind me, plus written on the wall calendar). (And I was going to put something else here, but I can't remember what it was. It was gone as soon as it came.)

This is where I'm driving and forget where I'm going, or suddenly nothing looks familiar and it should, or forget how to do simple math, or zero memory of things that have happened recently that are important. Things that when they happen, it scares you and you get that surge of adrenalin because all of a sudden you don't know where you are and you should cause you've driven this route 1,000 times. I'll also get confused at times and have trouble following simple conversation, let alone understand something complex like Medicare. I worked with handling benefits - it shouldn't be this hard for me.

The way I explained it to my GP is this: It's like when you have a dream, and when you wake up you have a vague feeling or memory of the dream, but you can't quite make it out. I'll have weeks like that. It did unsettle her, and she sent me to another neuro and I honestly have no idea if I've talked to him about it or not. We've been working on other stuff. I really need to have someone go with me to these appointments, but usually no one is available.

I did figure out that second charge. When I looked at it again, it had part of word and I was able to figure out what it was. It was legitimate - it was a copay.

 

[Hound dog]

I was thinking maybe she ordered the mop hoping mopping would be easier. But at least you don't have to worry about her ordering without permission.

Yes, you do need someone with you for neuro appts, especially if there is a chance you're forgetting things you want to discuss/ask about or info ect he's giving to you.

That driving thing would scare the hades out of me, literally. Now I've done the gone somewhere and suddenly have no clue wth I'm there for thing........and had it even mess me up big time with coupons. It unnerved easy child. She's had more personal experience with my episodes since march. She's had to literally walk me through shopping a couple of times because my brain would just not snap to it. Travis has had to do it a few times too. That is bad enough......I think if it were the car like you've got I'd start having issues driving anywhere.

I was busy crocheting yesterday......sat there for several minutes because I suddenly forgot how to do a very basic stitch......it was just gone. Then suddenly, it was there again. That upset me a bit, that is new. And in my opinion I shouldn't be having "new" stuff like that.

I hope the neuro gets this figured out and I hope your mom or someone can go with you on at least some of the visits.

Hugs

 

[flutterby]

Yeah, I check my account online almost every day and sometimes I can't remember the log-in and/or password. I've had to reset it a couple of times after I got locked out for putting in the wrong info too many times.

My mom has lived in her house for 10 years, and at least half the time now I pass her street and have to turn around. One time, there was a detour. I worked in downtown Columbus. The streets go east/west and north/south. It's not hard to navigate. Eventually, I could make my way to High or Broad and figure it out. It's not like Atlanta where the streets go every freakin' direction, and there are 27 variations of "Peachtree St", and some are one way at certain times of the day. It's easy, yet I was on High Street and couldn't figure it out. Fortunately, difficult child was with me with her phone and I called easy child who talked me through it the rest of the way. Hell, I've even passed my own house, and always have to look for the reflector on the mailbox at night. I've lived here for 4 years. I don't do verbal directions. I need step by step - that goes for cooking, too (and in that case, I have to be able to cross off what I've done) - directions. I always relied on mapquest, but lately it's been wrong. I got a new car with a built in navigation system, and believe me I've tested it. It's accurate. I feel much better with that.

There have been times when I've canceled appointments because I knew I couldn't do the drive - that I wasn't safe to drive. And I know there are times that I've just gotten lucky that I haven't been in an accident. It makes difficult child nervous when I say, "Oops", when I'm driving. I really try not to drive when I can tell I'm having one of those days - like today - or if I absolutely have to go somewhere, I make it local. Fortunately, this town is compact and I don't have to go much more than 2 miles (if that far) for anything I really need. Some things with driving (as in the "Oops" things) aren't memory, but are visual-spatial. I can tell those days because when I wake up I can't focus and the house feels like it's on a tilt. I lean against the wall in the hall to make it from my bedroom to the kitchen.

Never a dull moment.

 

[DammitJanet]

This is not very new to me though I dont think I am quite as bad as you. I have the word finding problems too. I can be driving around town and I swear my car has a homing device to just take me straight home because I will pull up at the house with no clue how I got there. Thank heavens I have navigation on my phone or I would be lost all the time. I just enter the addresses and follow it. I know it has taken me the longer way around several times. I cant remember doctor appointments for anything. I keep them on my phone which syncs them to my google account. I also pray that the dr calls me a day or two before the appointment to remind me. So far I havent actually bought anything I dont remember buying but I try to keep away from the home shopping networks because I want to buy stuff off there. I am also addicted to ebay and now susiestar got me on 1saleaday.

 

[Steely]

Silent migraines (I think that is what they are called - ones without pain - but the head is still having a migraine) Early Alzheimers are both things I would ask the Dr to test you for.
HUGS & sorry

 

[susiestar]

I am SO SORRY you are going through all of this. It must be very scary.

You now have medicare for disability don't you? THey should have a service that will take you to a dr appointment and bring you home for NO CHARGE. Most also have mileage reimbursement if you drive yourself but I don't think that would be your biggest priority. They may not tell you about these programs unless you ask though. We had this available for the kids for 3 years and didn't know about it.

You have to call X days in advance unless the appointment is made on short notice. They will come and get you and take you to the dr. You just call them when you make the appointment and tell them where to pick you up, where to take you, the appointment time and date. It might be a good idea to get into the habit of using this so that even if you are unfoggy that day you still get there.

This is info the dr NEEDS. Print out the post where you described it to me. In some ways it reminds me of what a relative went through with hardening of the arteries. But I was a teen then so it is just speculation on my part.

Do you have a nintendo ds or similar game system? They have shown that games like brain age, etc... can help your brain keep and even regain skills. They use them here with alzheimer's patients. Brain age specifically but some other games too.

Please keep us posted on this as you speak to the doctors. If I lived closer to you I would go with you to help you ask all your questions and to take notes for you.

Do you have a voice recorder or even an old cassette recorder? Take them to the dr appts and tell them it is because you have these memory questions. MOST people who need to see a specialist have memory problems when it comes to telling all the symptoms, history, medications etc.... An article on emotional intelligence (EQ as contrasted to IQ) said that people's EQ drops during these appts because they are stressful (just the thought of having a problem that needs a specialist is stressful) and most people forget a LOT of things that are asked/said in the appts so it is wise to take someone to note-take or to use a voice recorder.

I do see the difference between fibrofog and this other set of problems. Hopefully the description of the difference would help lead a dr in the right direction to help you with this.