Cognitive problems

[calypso]

I forgot to mention this in my last post, so thought I'd make this a separate topic. I remember reading something in the past about others here having cognitive troubles due to POTS. Surprise -- I can't remember when or what it was that I read; I think it was here.

That's exactly my problem lately -- I can remember bits and pieces of stuff but not the whole. Example: My husband said to me the other day, "I can't find my gloves." I spent 10 minutes helping him look for them, then told him I thought he left them at his grandmother's nursing home a few hours earlier. We were on our way there when I suddenly remembered I put them in my daughter's diaper bag.

I also spent the whole week complaining about how I thought my co-worker who shares my massage therapy office had taken my sheets by accident, then found them in a closet in my house. I remembered after finding them that I put them there last week, so I guess that's better than not remembering at all ... but what I jerk I am for thinking someone had taken them!

This may not sound horrible, but it's very atypical for me. I tend to have a photographic memory. I also have trouble multitasking (I have to concentrate VERY HARD to comprehend when reading or watching something on TV, etc.). I am seriously getting worried about this because I am a copy editor part time, and my job is to read stories for errors, and I am afraid that not being able to concentrate very well and having a poor memory is making me slower and less efficient (both definite no-nos in this biz).

On the other hand, I am not so dysfunctional that I need to stop working. I refuse to have an MRI or testing done, but am just wondering if these kinds of things are typical of POTS. To what degree do you all have cognitive difficulties? Does anything help?

Thanks,

Amy

[corina]

Hi Amy,

I've had a neuro psychological test done some weeks ago and I'm getting the results of that tomorrow. The test was really difficult because there were things that I was sure off I had to know them but I just didn't remember. In maths for example, I couldn't figure out how to calculate some things while I was sure I should be able to. I also had to read a story and was glad I could come to the point of the story (felt very proud of that) but couldn't remember anything of what was told before (like the names of the animals who were in the story and what they were going to do etc.). I also have problems of remembering the correct words and how to spell them (that's one of the reasons I'm not writing at this forum so often anymore, it's taking me sooo much time and I have to use my dictionary sooo often). And to make things really bad (that's how I feel it) I sometimes can't remember how to use domestic suppliances like the washing machine or my alarmclock or something like that). These things are really scaring and I hope to get some answers tomorrow BUT since my neuro psychological prof had never heard of POTS I don't know if he can figure out whether this can be related to POTS. If you come to think about testing, don't think this test will be a piece of cake (emotionally I mean). I started to cry several times because I felt very powerless (don't know if this the correct word for it). Wish you best of luck on this, don't underestimate it, because it can make you feel VERY bad

Corina

[Dawg Tired]

My problem is more with NCS than POTS but I still have the same problem. My hubby and I have learned to live with it but I had to quit work when I reached the point where I couldn't sit up for 2 hours a day. But I was an insurance nurse and I would find myself doing things like calling the same place 2 or 3 times.

I frequently misplace things and forget how to do things like how to turn on the washing machine. I quit driving because I figured in this shape I had NO BUSINESS on the road. When I had a psych exam for disability I found I had lost a LOT of my math skills.

[DawnA]

sounds like POTS brain fog. I know of people who had neuropsych testing come back normal.

Dawn

[opus88]

Amy,

It's not specifically from POTS - it can happen with any form of dysautonomia as well as other non-related conditions. It all has to do with body chemistry, which of course is reflected in your brain. If the body isn't working properly, how can we expect the brain to be unaffected?

For several years now I've been struggling more often than not with memory, comprehension, focus, etc. (I'm a proofreader and occasional copy editor and copy writer, among other things. I fully understand your concern about the potential ramifications of this condition on our job security!)

I've done exactly the same thing as you, thinking somebody borrowed or mistakenly collected something of mine, only to find it later among my own things. And I always feel terribly guilty for thinking someone else was responsible. But this situation of forgetting, misplacing, poor decisions, etc., is just not typical of the real me!

My friends used to tell me how smart I was, how full of common sense, how analytical, how organized, how quickly I learned things, etc. But now I feel so #$% stupid that many days I just want to hide from the world because I'm so embarrassed by my inabilities. And I have to work hard to do what used to be automatic, simple tasks. (Yes, including how to set the alarm clock!)

Wish I had words of encouragement, but I'm in the same boat. I'm doing something about it, though, beginning in the next few days. I've been away from my strict nutritional protocol for about 4 months, and I'm really feeling it. The plan is to start my Metabolic Typing program's retesting this weekend, and I should have results in 2-3 weeks. At that point I can start a new routine of supplements to put me back on the right track. It's an awesome program that really works, so I'm looking forward to getting back to it. Just wish I could bypass the testing!

[Guest tearose]

Hi Amy, I'm in the cognitively fuzzy club too!

I know I posted a thread on improving memory and also have two explanations of my symptoms posted too. If you search, they'll come up. If you'd like me to find them let me know.

The forum made lots of good suggestions like always.

I hope you can find comfort in knowing that in my 14 years with pots, these symptoms come and go. Yes, mine are getting progressively worse, however it is very slow over many years and I still find I have times where I'm doing so well I think "I'm all better"!

I can share that I have found my cognitive problems seem to correlate to the problems found in the sleep study I had. I am not getting restorative sleep. That is always a big reason for mental fog and cognitive problems in people. It relieved me to understand what can causes cognitive issues, but as you may know, now I am trying to learn what causes these sleep arousal's and if it is pots related.

I had some serious muscle weakness and control issues around the same time so my pcp also ordered an MRI. Brain is fine, buldge on c-5,c-6.

I mean this Amy...I really thought I was going to get some seriously bad news!!! I had trouble remembering simple things...this was just last March!

I am the same person that last spring had trouble sorting the dishes from my dishwasher!!!

I can't explain why it was so bad in scientific ways but I know there was something really bad going on...was it a virus? Maybe it is early neurological disease? Maybe....

But I went back to physical therapy, made MAJOR lifestyle changes, and got so much better! I pray you do too!

I hope you will find comfort in knowing that this too may pass...

I also support any measures you need to take to find peace!

warmest wishes, tearose

[Laura]

Hi Amy! I absolutely can relate! I seem to have alot of memory problems. My house is covered in post-it note reminders! I have often forgotten appointments, conversations I've had with people, and quite often have had friends showing up for tea and I've completely forgotten making plans with them. It's happened often enough that most of my friends call the night before and again in the morning to remind me. It can be terribly upsetting at times, especially since I was usually completely on the ball, organized and a perfectionist! My doctor ordered a CT scan just to rule out anything else- came back normal. He thinks it is being caused by low BP, from the tachy ( causing decrease blood supply to the brain), and dysautonomia. I am sorry, I don't have any tips on what works to improve this but hopefully this helps a bit! Laura!

[MomtoGiuliana]

I remember reading somewhere that many people with POTS suffer cognitive dysfunction due to hypovolemia. Many see improvements with increased salt and fluid intake. But the autonomic system is complex and there are probably other explanations too. I have bad brain fog at times--although overall it is so improved over how it was two years ago. I am not as organized as I used to be. By this, I mean my thinking is not as organized. At times I really struggle to think through a problem and how to solve it, e.g., at work. This gets frustrating. One thing that helps--trying NOT to multi-task. I think this is hard on the brain! Instead try to focus, to the extent possible, on a task at hand. I think like any other part of the body, the brain responds positively to exercise. So, it's important to keep trying to flex it, however you can.

Katherine

[Jersey Girl]

I also have slow thought processing at times and memeory problems ( I called someone over the weekend and left a message , when they returned my call I hadn't remembered calling), but have accepted it and generally have stopped worrying about it because there doesn't seem to be alot to do about it. It is definitiely worse at times. Oh well..hoping that this too shall pass. Martha

[steph37822]

oops

[Rachel]

Amy,

I'm sorry you're having so much difficulty with remembering things. That is so frustrating. I have the same problem, but it comes and goes. This past summer I started getting scared because my memory became so bad I thought something was wrong with me. I wasn't able to express myself well. I'd be telling a story about something that happened that morning and couldn't remember the important details. And I was always forgetting words. You may find that in a few weeks or months your memory starts to get better again. I sure hope for your sake that it does. Meanwhile, lots of to-do lists and sticky notes help! Sometimes I have to place a pile of things right smack in the middle of the floor to make me remember it! I've never found anything that helped with brain fog or cloudy memory, but maybe you can take comfort in knowing that there are others that have the same problem. I guess it is just "normal" for all of us POTSies!

Rachel

[Guest GayleP]

Amy,

I have cognitive problems from my brain surgery. I suspected I had something going on and neuro psych testing proved I was right.

There are several things I do that helps. I always make a list of things to do for the following day. I have to write everything down or else I'll forget.

I try to do as little multi tasking as possible. One thing at a time works best for me.

It also helps to pay attention to things that you're doing. For example I try to focus on where I put things or else I have problems. I've been known to put some weird things in the refrigerator if I'm not paying attention.

If I can think of anything else I'll post later. You learn to compensate and come up with ways to manage.

GayleP

[Jillybeanbme]

Amy,

I too have the lapse in memory problem. Here lately I have been forgetting what I'm saying mid-sentence. Not a good thing to be doing on the job!!

At work, I have notes everywhere and I try to as detailed as I can be in case I forget. Sometimes it works & sometimes it doesn't.

A good thing about it is, I'm not quite as OCD as use to be because I can't remember to obsess over things!

So far it's just my short time memory. My long term is still like an elephant.

My doctor said the same as Laura's, that it could be caused by low BP, from the tachy ( causing decrease blood supply to the brain), and dysautonomia.

In the mean time, maybe we all should take out stock in 3M with all the Post It's we are using to remember things.

Take care,

Jill

[Merrill]

Amy, I just wanted to add that I'm in your corner on this one too. It's very frustrating ... and more. I can be telling my husband something and then stop mid sentence--with no idea where I was going or where I'd been or what word should come next. I rely on other people to be my memory. Good friends are good sports about it, and I try not to get too upset about it. It's hard sometimes though. One more thing. But as you can see, you are DEFINITELY not alone!

m

[blackwolf]

Amy- what was this discussion all about, ok, I know, not funny. What a wonderful group we are.

Blackwolf

PS- one of my favorite toys is my spelling ace, even if you don't get the word right, it comes up with a list of possible words. I wish we had spell check on this site, we could check before we posted.

[Radha]

i also have terrible problems with short term memory, but long term seems to be ok, and i can tell you it frustrates me so much when i forget what i was about to say and then try so hard to remember it again! it drives me crazy, wish i had something new to add, but i have a paper and pen attached to me at all times, all i do is constantly write down things, even every thought i have, i hate that i have to do that, but i feel totally lost if i dont have paper and pen within reach,

radha

[ramakentesh]

when my pots was bad it was like one minute i was on overdrive and doing everything at light speed and anxiously, the next i was dizzy and so spaced out that i didnt know what was going on.

Even now, in a crowded room or at a mall walking around in a crowd i feel like my brain is a bit slow or something and i cant keep up on the conversation.

[Dawg Tired]

Ok, I laughed at the time... But I read on another (not POTS-related) site that crawling backwards helped your memory. At least there isn't far to fall when you faint!

[calypso]

Sorry I took so long to reply.

You guys are so unbelievably helpful! I feel a lot better that my degree of cognitive difficulty sounds typical for a chronic illness sufferer. I definitely don't feel happy about the fact that many of you are having problems, though ... If you think about the ways an illness affects us externally -- well, at least for me -- I can only imagine what is happening on the inside of my body. As I become weaker and watch my hair suddenly turn prematurely gray and fall out, and my skin age and become thinner, I can't even begin to think what's happening to my brain ... oh my gosh, I need to stop thinking about it before I freak out.

OK, back to being proactive here and trying not to sit around and worry. I will continue with my list making, limit the multitasking and start doing some mental exercise -- maybe crosswords or something. And crawling backwards, of course, Dawg Tired!

Thanks, everyone.

Amy

[Guest GayleP]

Well here is an example of not doing what I recommended to you.

I told you it helps to pay attention to everything you do. I should follow my own advice. Last night I left the hot water running in the bathroom sink for a few hours. Waste of water in a state with a drought. Not good. And a husband who wasn't too happy.

This is something my grandmother used to do in her 90's. She would leave water running and almost flooded her apartment once. I'm only 47. Yikes.

GayleP

[opus88]

Ahhh . . . the crawling. Actually, YES, it does work. But that's not the only physical activity that will help mental processing. You can "crawl" standing up if your knees argue, or even while seated or lying down.

I used to be really involved with a program called Brain Gym. It's fantastic work, and I received so much wonderful benefit from it (during my healthier days) that I even became a consultant and instructor for a few years. I still thoroughly believe in this program. The problem was that as I got physically sicker, the benefits started going away. I could do the activities all day long and still not get anywhere. It took me a long time to figure out that at that point in time, my body chemistry was too screwed up for my brain to process the very simple physical activities.

For those who are doing fairly well physically but struggling with mental processes, I cannot recommend this program strongly enough. I basically became ADD thanks to my dysautonomia, but my brain was stronger than ever while practicing the simple Brain Gym activities.

Although it's not the optimal way to proceed, you could purchase the Brain Gym Teacher's Edition book that has a thorough explanation of each of the basic activities (I think there are 21) plus illustrations, as well as information on how and why each activity helps you. You can check them out at http://www.braingym.org.

[walstib9]

Amy- what was this discussion all about, ok, I know, not funny. What a wonderful group we are.

Blackwolf

PS- one of my favorite toys is my spelling ace, even if you don't get the word right, it comes up with a list of possible words. I wish we had spell check on this site, we could check before we posted.

<{POST_SNAPBACK}>

[walstib9]

Hi all! It's my 2nd time here. Hi Blackwolf!

Wasn't even sure where to start till I saw the 'cognitive' word. yikes!

I think we ALL share our autodyso planet. Regardless of our individula symptoms. I have hardly ever had memory problems. Quite the opposite. Have been told (even by profesionals) that my memory is almost TOO accurate. "It's been called 'suggestive' at times at the way I can connect dots. recall everything. On a normal level though as far as learning right brian stuff I had problems all through school. My amazing psychologist told me that even with POTS etc, things we repeated a lot are/were easier to remember. I want to learn how to pray . But can't remeber to cause I have never done it. Need more notes to myself I guess.

I have so much less physical symptoms than many. And less severe the ones i have. Though it's all phys. at the onset isn't it? Heart/blood/pxygen.

I can tell you what i always knew and have still. As a wee-one on the playground I felt so different. On the ouitside. I FELT weird. Different. Didn't know hwere I belonged. But my differences did lead me to an amazing soul and experiences and a gratuity that my friends loved me in spite of me being on the Island of Misfit Toys. I asked too many questions. Was too curious about things not easily seen/felt. felt everything SO deeply. Joy & injustice always at the same time. I would walk around (still) jealous of others and how they acted so normal and talked and laughed and lived. I didn't know why I could be in s store and my audio was all echo-ee and 'far away feeling. As well as my body feeling detached and far away. Confused and a bit scared. Yet getting all wired and over-stimulated as well. I mean I knew I was there for broccoli or socks but FELT so so weird like hallucinogenic. The walls breathing. When I got back in the car I would think, 'Whew-what just happened?"

Have also been tired all my life. And until last night and my cwonderful converation with someone here I was the #1 weirdest dreamer ever. How exhausting! Living 2 lives and waking tired from the brain never resting. Like always being hung over. No one would listen. No one would help. IT WAS ALL MY FAULT. I WAS SO WEIRD! Actually believed I was crazy. The depth of my emotipns and spirit has always been hard as well. i believe that is 'me' but also the NMH & POTS. I am in the middle. Diagnosed last feb 3rd so my year anniversary is coming up. To make me even weirder-I cannot even do POTS right. I live to exercise and do not faint. My diagnosis came on the heals of a horrible flu and aweful ear infection last winter. All symptoms exasterbated but i thought I was hyper-thyroid so that's what sent me to the endocrinologist THAT time. With the same same complaints but it was so so bad then. I ws trying to balance my checkbook and the numbers were moving all around and I couldn't add or subtract. That had happened a lot but never told anyone. Cause it was ALL MY FAULT. If you don't believe me-ask my twisted family that put all the aweful tapes in my head. I was also sick 9 yrs ago and I'm sure that worsened it all but didn't know it at the time. I have learned that once things get worse they stay that way so yippeeee! I have more anxiety and panic now. The worst of all of this is i am TOTALLY alone. NO one here. No other humans. Ever. I left my home in Wash. Sate 8 yrs ago to be nearer family and that was a nightmare and made me sicker so couldn't leave where I am. Was stuck in POTS and depression cement. And disliked it here within the 1st year along with the sicknesses my family put upon my being 'me.' Not one friend close to even give me a hug. It would be so much different when I find my way out of here and there's love in my life other than on the phone. I wake to nothing. I DON'T foget the war or Indonesia or Sudan or the homeless but I wake to nothing. Just emptiness BUT thank god an amazing psychologist who has become such a dear dear friend. Will always and forever be one of the best people I will ever know. I am also chemically sensitive horribly! Most all meds screw me up and i wasted 6 yrs allowing them NOT to hear me and radoly try happee pills that only made me want to perish. They would actually chuckle at the paradox of my chemistry instead of looking closer. As happened with all of us here. OK- I can go on but this is so long. Pardon. My 1st time and all.

Oh-to sleep a night w/o recalling a dream! To be around stimuli w/o getting over stimulated. Not to be a weepy gal! But then again....in so many ways i am amazing and people see that so now....learn how to live, manage it???? I need more water andother daily things at my fingertips that I FORGET cause they're not habits thus far. I am on florinef and midodrin. In the end....I ALWAYS ALWAYS knew there was something broken. ALWAYS. My friend shave said if that had a nickel for everytime I said 'foggy' or 'my brain is broken' they would be zillionares.

What makes me extra sad is that I keep on trying and many efforts are in vain much of the time because of others BS or no one following through on saying they would help. Just a smile can go so far.

OK-bye

[walstib9]

(((AMY))) don't say our brains will get worse. NO way. LOVE will get us through. As soon as we get through the next 4 years!

[walstib9]

I guess Dinet is on another planet as well cause my posts aren't at 10:19. It's only 9:22. mmm.....?