Losing Things

[HopeSprings]

I'm starting to scare myself. For the second time this year I have lost my purse. I put it on top of the car and my husband drove away. I realized maybe ten minutes later... where's my purse. I could not for the life of me remember what I had done. My memory for this was completely blank. I get a call several hours later from my mother telling me that someone found my purse. Turns out it ended up on an off ramp and this man thought it was a dead cat (lol), swerved out of the way, then stopped and retrieved it. He looked in my address book and called my mother. I eventually got it back with all belongings safely inside. This past December I did the EXACT SAME THING - put it on top of the car, my husband drove away. I get a call from a friend several hours later that someone found my purse. A woman who lives several blocks from my house said that a pizza delivery guy found it on her front lawn and gave it to her. She then used my cell phone and called my friend. Again my purse was returned, no items missing. So LUCKY. Over the summer, I went to a department store with my children- as we are about to leave, I realize I have misplaced my keys. I had no memory of having the keys in my hands or of setting them down anywhere. We looked EVERYWHERE - never found them. As a result, we were stuck at this store until a friend could come get us.

Does this happen to any of you? I don't know if this happens to normal people or if it's because of how I feel in my head (oddly detached and spacey)? Am I just ditzy or is this part of my condition? It's scary.

[brethor9]

Hi Naomi!

Try not to beat yourself up too much! This happens to me all the time too along with forgetting how to spell, speak and think and you are right it is scary!. Some days I swear people think I am drunk!!! I asked my specialist about this and he said its all part of the dysautonomia and said hopefully over time with proper treatment it would be better.....here's hoping.....today I forgot the word cofee filter and had to settle for thingy that holds the coffee.....sigh:( hugs naomi!!

Bren

[GingerA]

OH YES! This happens to me all of the time. I not only lose things but I forget important things that must be done like bank deposits that must be made or important calls that I have to make. I even forget things that I have told the kids to do like cleaning their rooms or taking out the trash so I had no follow up with discipline on the days that their dad is not here. (He is a police officer in another town so he is gone for days at the time when he is working.)

To help me he helped me set up things like hooks for my keys right by the door and habits that help keep up with things that I need everyday like my shoes and the kids bookbags. I also take a notebook with me EVERYWHERE to write down even little things as I think of them.

[GingerA]

LOL I hear ya Bren! I have soooo been there. I was so bad once my boss took me to the ER thinking that I was having a blood sugar problem.

[toddm1960]

It's half the reason I had to stop working Please don't feel alone with one, brain fog like this is in the top 5 for worst symptoms for sure.

[brethor9]

LOL even funnier story to share.....I was with my mom a couple weeks ago in the grocery store and tried 3-4 times to put my pin number and all the while feeling like a complete drunken idiot...just couldnt think through the fog....the cashier was getting very annoyed until my mom in a very kind voice said 'my daughter just got out of hospital and is very sick and her mind isnt working right quite yet' lol if I wasnt so embarrased with myself I would have died laughing..(thanks mom!)...the cashier didnt know what to say.....and bless my mom she still thinks this illness is just going to blow over one day.....

[potsyturvy]

I understand! I forget things all the time, and sometimes I have dyslexic moments (or days) where I can't read things because the letters all get mixed up (I do not have dyslexia though). The other day I was making a doctor's appointment and when they asked for my phone number I drew a complete blank! I finally just gave some numbers that sounded close enough... later I realized I gave my social security number, not my phone number!! lol. It can be scary to forget stuff and not be able to find the right words to say. I have gotten myself in trouble a couple of times when I am trying to say something and I flip the words around and end up saying cuss words or things that are inappropriate on accident!

[Ernie]

Yes, and to other of my family members.

[Rachel]

Cerefolin NAC has helped me a lot with brain fog, forgetfulness, cognitive difficulties, word recall, etc. It is a specially forumulated vitamin that contains folate, B12, and an antioxidant. It was first prescribed for me by Dr. Grubb, and if I remember correctly he said that it was originally created for alzheimer's patients, but it works well for those of us with dysautonomia and cognitive difficulties.

Another thing that helps me with brain fog is compression and midodrine. Having adequate blood flow to my brain can make a big difference!

Rachel

[MomtoGiuliana]

Yes, I lose things frequently and it drives me crazy. Sometimes I do wonder if I am losing my brain too!

I did the same thing w my wallet (not entire purse) back when my POTS was more severe. A very kind samaritan picked up the contents that spilled all over a busy street and got it back to me.

[Brye]

It does happen to normal people. My friend (who doesn't have POTS) did the same thing as well ... twice. I feel like I'm losing it often though. I forgot to take my socks of getting in the shower once, that sealed the deal for me!!

Brye

[sylvan]

Sounds familiar to me! I constantly forget things, even in between saying I'll do them and walking down the stairs. If I really need to take something in to work with me, I need to make sure to put it where I'll trip over it, otherwise I'll leave it behind. But I've always been like this, so I don't know if it's assocaited with the dysautonomia. I remember as a kid getting in trouble all the time for doing things like agreeing to put the dog out, or scoop the cat's box, or clean my room or whatever, and by the time I got to the location I forgot what I was doing and wouldn't do it. I honestly wasn't skiving, I really did forget. If something happened like I accidently kicked the cat's box, I'd remember and do it.

And other people have similar experiences. My boss from my last job actually left his *laptop* on top of his car and drove off. (And he was the driver -- left it on top, got in, and drove). The first time, the laptop miraculously survived. The second time, not so much.

[lissy]

This has been one problem that has me very concerned, I also have the forgetfulness but what about memory loss??? I can't remember alot of details from the past,so its affecting my short term and long term memory. Its 10 times worse with hormonal flucuations.

I live in a small city in which I grew up, and I know where everything is located but it seems like its slightly unfamilar everytime I go anywhere...

There was a very scary time while I was driving years ago( I was 24) and I forgot what side of the street to be on, or when I forgot my name in the ER. Are these problems something other than dysautonomia?

[hholmes13]

I was just thinking about this issue the other day! I haven't really lost anything, but I feel like my brain just doesn't work right anymore. I've had so many instances lately where I thought I read something or did something correctly and then I go back and it's completely wrong or incoherent. I've never been like that before! It makes me feel like I'm going nuts or something.

[HopeSprings]

I don't know where I'd be without my sticky notes reminders. Not to be alarmist or dramatic at all - but is dementia like this? Is it really poor brain bloodflow or is there something more to it? It's just so hard to know what to expect with this because there aren't any long term studies (that I know of). Hopefully we just stay at this level or get better.

[songcanary]

Oh yes, I can relate. My hubby was with me in the grocery store a few months ago and I was away from the cart to pick up a few things down the aisle. So I get them and start wheeling away and got all the way to the meats and realized I had taken someone else's cart! The cart's poor owner was wandering around looking for it when I realized I had the thing.

Now, what I didn't tell my husband was that the exact same thing happened to me a month before that! In the same store!!! So forgive yourself because you've got a lot of company. These stories are making me laugh

[HopeSprings]

LOL! - ok, that made me laugh Songcanary! ...still giggling.

[Frugalmama]

Brain fog is one of my most frustrating symptoms! I routinely forget my phone number, and lose track of conversations very quickly. I also find that I get "lost" in stores very easily - I'll completely forget what I'm looking for, or I'll need to decide between smooth and crunchy peanut butter and for the life of me won't be able to remember which my husband prefers. One of the reasons we got a cell phone is so that my husband can call if I've been in a store too long...he'll call and say, "Are you wandering? What are you looking for? Come home!". He also jokes he's going to put a lanyard on me that says, "if lost, please call #######". We're trying to find the humour in it, but it is so challenging! I was an excellent student, planning to head to med school, and I can barely memorize phone numbers anymore! And I lose things all the time! I actually have a keychain that goes around my wrist so I can't leave my keys (again) on a store shelf somewhere . This symptom is actually a bit scary, too, as I have three kids under five. I can't be on my own with them for long, since the brain fog gets so bad that I can't function properly.

[Daveb]

I don't want to hijack this thread, so if this is an inappropriate response please let me know and I will start a new thread. I logged on today to look for information on memory and cognitive issues with POTS and possible supplements that might be helpful. We've been through the POTS ringer with my son for over a year now. He missed his entire sophomore year in high school last year. However, since April he has had some recovery. Brain fog and headaches lessened and that allowed him to complete Dr. Levine's exercise protocol, which really seems to have helped with tachycardia blood pooling and energy. He has definitely not recovered, but is SO much better than a year ago.

He returned to school on Tuesday (and is unbelievably happy to be back), and we've certainly seen how much it takes out of him, but he is pushing through. We are trying to teach a 16 year old that to push through is great, but you have to know when to back off and rest as well. He said something at dinner yesterday that raised alarm bells for my wife and I. He said "My mind is like a blank slate." He can't recall information from a class, or even necessarily whether he had a given class that day, until he goes back to look at notes or his schedule. This from a former honors student.

His cognition and word finding have improved since April, but I'm afraid that the effort it now takes to go through a day at school, leaves little energy for brain function. He mentioned several times during the day having to return to a classroom to retrieve a book or notebook or other item left behind. Can anyone recommend supplements? He's currently on Topomax (and I know the cog side effects - takes at night to minimize) for headaches, nystatin, florinef, VSL#3 probiotic, d-Ribose, energy revitalization system by Enzymatic Therapies, and 4g salt tabs.

Sorry for the long saga. It seems that any conversation about POTS requires a lengthy dissertation!

Dave

[HopeSprings]

If you don't get any response here, you might want to start a whole new post with a different heading. I'd love to hear about any supplements that actually help with cognition. Would a tiny bit of coffee be out of the question? I just heard something on the radio about a mother who opted to give her "ADD" diagnosed son a little coffee, rather than opt for drugs like Ritalin etc. I don't know if it would help - it's the only thing that helps me.

[Daveb]

Thanks Naomi. I'll start a new thread when I get time. There's got to be something right? One thing that seems to work a bit is exercise. Seems to get the blood flowing to the brain and he gets a little endorphin kick. Initiating the exercise is the hardest part when he's tired. Good luck and best wishes!!

[cmreber]

Naomi, don't feel bad because it seems we all have issues with this! I had never felt so spacey in my life until getting POTS, and now sometimes I really have to wonder what's going to happen when I'm older! (I am 26 now.) Maybe the opposite will happen and my memory will get BETTER with age, haha. The worst for me is keeping my mind on what I'm doing, since concentration seems to be difficult to manage most days. Also, the word-recall problems, where my husband constantly has to fill in the blanks because I forget what word I am trying to say, LOL.

Actually, not so shining moment for me happened just recently. I came in the house as always, hung my keys up, and went to sit on the couch, talking to my husband the whole time. Then, a bit later he had to get up and go write something on the calendar that is in the hall, right by the key hook and light switch. As I watched him, I suddenly noticed there was something strange hanging on the light switch, and low and behold, apparently I had hung my keys there instead of the hook! I don't even know how I managed to do it without them falling off, let alone not even realize I had done so! Of course we had a great laugh about it, which is about all you can do sometimes or else you'll drive yourself crazy. We just try to look at it as some great inside joke material and I try not to be too hard on myself! Hang in there...hopefully things will get better for you...and for us all

[GingerA]

Just had to add this to the post because we have all been adding funny things but something happened to me yesterday that reminded me how dangerous this brainfog is. I got in my car to take the kids to school but it wouldn't start. Apparently the afternoon before I had forgotten to turn it completely off and killed the battery. I can't help but worry now that I might forget to turn it off or put it in park. I think I'm giving up on driving for a while. There was a time when I didn't drive at all but I thought I was getting better. I have been driving around my small town some now for a few months but maybe I'm not ready.