It’s definitely early onset dementia. I’m doomed

[KaitIsTired]

It’s definitely early onset dementia. Nothing causes memory loss this bad. This is more than CFS. It’s like I get to 4pm and everything is gone. It’s like the guys from MIB came with their memory zapper. The entire day is gone. I’m doomed. My memories are like my humanity.

 

[nyanko_the_sane]

I kind of only remember fragments of my day, so I found it helps me to take pictures during the day. Interestingly for me, looking at the pictures helps me remember more.

 

[Rufous McKinney]

Nothing causes memory loss this bad.

I"m very sorry to hear your facing such difficulties- its terrifying and really understandable to find this beyond distressing.

I deal with alot of cognitive issues myself. I don't want to presume to understand what you are dealing with. We all seem to have many versions of all this.

But something is going on in our hippocampus relative to storing and transferring short term memory into long term filing system. Retrieval- the energy to then retrieve info- is frequently abruptly used up at times and, in my case, I can just go blank. Whomever is witnessing that- well they never seem to understand and I can't explain it.

Explaining it to other people- quite hard. As I seem to be capable of a decent thought one minute and am a blank zombie the next.

Something about our version of the cognitive problem does not seem to be equal to the more famous memory issues that our culture apparently feels was worth- studying more and trying to help people with.

The amount of rest and do nothing required to pull out of crashes and then- feel a bit better cognitively- its alot.

Are you able to Pace? Are you able to rest? Can you reduce your stress?

As a first step- this word Demented- its an unhelpful word, an unhelpful label.

I'd recommend- find a way to disassociate yourself from applying it. Its full of very negative connotations, none of which are helpful to feeling better, calming down and resting.

 

[Sushi]

It’s definitely early onset dementia. Nothing causes memory loss this bad. This is more than CFS. It’s like I get to 4pm and everything is gone. It’s like the guys from MIB came with their memory zapper. The entire day is gone. I’m doomed. My memories are like my humanity.

So sorry you have run into this. If you have ME/CFS, it won’t be early onset dementia just the type of memory loss that most of us live with. When we get better, through treatment or chance, memory problems are greatly lessened. Most of us who have been sick for a long time have learned memory tricks and compensations that help us a great deal. I know this is not easy but we can support each other and learn to live with it. Sharing memory tricks is very helpful. I know that this is not an answer for the difficulties you are experiencing, but sometimes it is helpful to know that others live with the same problem.

 

[KaitIsTired]

So sorry you have run into this. If you have ME/CFS, it won’t be early onset dementia just the type of memory loss that most of us live with. When we get better, through treatment or chance, memory problems are greatly lessened. Most of us who have been sick for a long time have learned memory trucks and compensations that help us a great deal. I know this is not easy but we can support each other and learn to live with it. Sharing memory tricks is very helpful. I know that this is not an answer for the difficulties you are experiencing, but sometimes it is helpful to know that others live with the same problem.

Is it possible to have CFS/ME with memory loss that’s so bad you forget your entire day?

 

[Sushi]

Is it possible to have CFS/ME with memory loss that’s so bad you forget your entire day?

Yep!

 

[Seadragon]

It’s definitely early onset dementia. Nothing causes memory loss this bad. This is more than CFS. It’s like I get to 4pm and everything is gone. It’s like the guys from MIB came with their memory zapper. The entire day is gone. I’m doomed. My memories are like my humanity.

Dementia usually involves more than memory loss (I have a family member suffering with the condition) but if you are extremely concerned about this symptom you should see a doctor who can rule out any other causes and hopefully put your mind at rest.

 

[lenora]

I had such a nice answer for you, and I'm sorry to say that I'm sleep starved and hit the wrong button.

Personally, I use a neurologist who will rule out other causes and will then tell you what they assume is going on. Don't be afraid to ask for an MRI of the brain, including the brainstem, and remember this: We're all different in how this illness affects us. Read about it, learn everything you can, unless it brings on too much anxiety in which case I would just continue writing here and asking questions.

At one time, we had no information (I'm 73 & this has been diagnosis #4 that I received) at all as this was a new illness. Today, there's an overload. I don't know when we hit the happy medium point. It's a scary time for most people. Find some calming music and little by little try to win your mind back in small ways. Be gentle with yourself and don't assume the very worst. It's common, most of us have been where you're dwelling at the moment....we remember.

I wish you good fortune, and a quieter mind. Oh, one more thing: I'm a believer in vitamins and studied them for years. However, even with that knowledge, you can overdo it and the body is then out of balance. If the Dr. is uncaring...find a new one. They're out there, you'll find one. Yours, Lenora.

 

[Rebeccare]

ME/CFS can definitely cause terrible memory problems at times. They're usually much worse when you're tired or in a crash. And it can be terrifying to realize that parts of your day, or even an entire day, are a blur or are completely absent.

I had neuropsych testing done after becoming ill because I felt that my mental capacity was so diminished. My overall score for the attention and memory section of the test was in the 50th percentile (significantly lower than my other scores), and some of my subtest scores were as low as the 25th percentile . I work with students who are diagnosed severe disabilities, and many of them have higher scores than I do!

However, on a good day when I have a lot of energy and my brain is working well, for the most part my memory works like it should. And if I work hard to get information into my long-term memory, it stays there. I have even managed to slowly memorize some poetry since becoming sick!

But like @nyanko_the_sane pointed out, there are good strategies that can help us remember more. Taking pictures or jotting down notes are both great ways to prompt memories. My room is covered with little sticky notes, even for little reminders like "You put a pot of water on the stove. Check it at 12:20." These little reminders can help memories surface.

I am also much more intentional about trying to remember pieces of information I know I have a tendency to forget. For example, when I was leaving my apartment I often didn't remember whether or not I had locked the door, even after taking just two or three steps away. So now focus really hard as I put the key in the door, and I say out loud "I am locking the door, it's locked" as I lock it and feel the knob. Then I take one more moment to focus on remembering before walking away. Being more intentional about trying to remember and engaging more senses by saying something out loud does seem to help.

My diminished memories and cognitive abilities have scared me at times and frustrated me at others. But over the years I have been able to work out strategies to help me remember more.

 

[lenora]

Yes, I can remember when gabapentin first came out and the starting dose was 600 mg. My memory totally and completely disappeared for 3 mos. I could barely get a sentence out.

The house was plastered with little yellow post-its and as soon as I put them up, I forgot what the subject was and I couldn't follow the instructions. I was by myself most of the time in those years....and yet I somehow managed. Actually, I think I was relieved that I was alone.

Well, the starting doses were far too high. It was halved, and I did have my pain volume turned way down, my mind cleared and I was back again.

The same thing happens when I'm hospitalized....the steroids always do something to me, although last time hallucinations were added to the mix. So, no, you aren't alone in that regard. As Rebecca says, we do learn ways to recover our memories and use them. To be honest, I have a better memory than most of my friends. I don't know how/why, but I was extremely determined that I would do everything possible to remember it. Take good care...you're in the process of adjusting, remember that, also. Yours Lenora.

 

[Rufous McKinney]

One category of the cognitive exhausion seems related to- well when too much is coming at you- the energy required to keep all that sorted out- it just suddenly seems lacking. So one can get overwhelmed quickly, where if the same - issues and info were to approach slowly and in smaller pieces, I'd be coping better.

My daughter- will just suddenly and quickly tell me a whole series of things like: how to finish cooking the dinner we are trying make.

So I know she is speaking to me. I hear the words. But its- just a big blurr. I ask her: Stop. I will myself look at the recipe and read what the next step is. I can't follow- your series of rapid fire directions- they just merged into a general morass of- meaningless verbiage. Then I feel angry. Because I don't even have this energy to say Stop. Or to explain all the Whys I need - to look at the recipe.

Then I can get frustrated that I am angry, as I don't want to be.

Yesterday, she is rushing out of here. "Get me a plastic bag" she asks. I...stand there rather blankly. Plastic bag. Well I know we have many plastic bags, and many types, and they are in various locations. Slowly, I find two bags in a drawer- yet Are These the Plastic Bags she Needs? How would I know? I just- stare at these two bags. My brain- just rather blank.

Get me a big garbage bag she yells- and ends up getting what she needed herself, but looking at me like I am certainly not helpful and also somehow stupid.

While all this sounds on the one had pretty trivial, its- just so hard at times dealing with this ongoing.

I've had family here for COVID and they will leave at the end of the month. THings will quiet down.

I think this quiet is at times essential to- reducing our illness levels.

 

[gbells]

It’s definitely early onset dementia. Nothing causes memory loss this bad. This is more than CFS. It’s like I get to 4pm and everything is gone. It’s like the guys from MIB came with their memory zapper. The entire day is gone. I’m doomed. My memories are like my humanity.

You can always keep a diary.