TheLivingDead Posted March 3, 2012 Report Share Posted March 3, 2012 has anyone had issues with messing words up alot? writing seems to be a mess at times also coordantion with things that i always do seems to vary. is this familiar to anyone? Quote Link to comment Share on other sites More sharing options...
AllAboutPeace Posted March 3, 2012 Report Share Posted March 3, 2012 Yes!!! My writing is awful unless I really take my time with it - much worse than before. Also, I'm ok with my speech as long as I am sitting with my legs up, but if I let them down for a few minutes, I find it harder to produce my words and keep my focus. When I repeated a standing test with my doc a few weeks ago, I warned him that my IQ drops dramatically (along with the blood that pools in my legs) when I stand up. Then, of course, he wanted to test it out. After he saw the difference it made, he said " Are you sure you didn't hit your head when you blacked out?" Quote Link to comment Share on other sites More sharing options...
peregrine Posted March 3, 2012 Report Share Posted March 3, 2012 I have word-finding issues when I'm doing poorly; I also tend to substitute the wrong words for things I know very well, which is annoying. My hubby says he's never noticed it being particularly bad, but to me it's not something I had trouble with and now I do it all the time. And... now that you mention it, it is worse when I'm not sitting with my legs up. I recall many events of staring up into space (or the blue sky) trying to remember a word, and all of them involve me standing up. Quote Link to comment Share on other sites More sharing options...
Elfie Posted March 3, 2012 Report Share Posted March 3, 2012 I started stuttering and slurring my words post-POTs and went from being very coordinated to being skitish about things that require balance and often smacking into doorways and corners. Quote Link to comment Share on other sites More sharing options...
Elfie Posted March 3, 2012 Report Share Posted March 3, 2012 And the word-finding issue/expressing myself as well. Quote Link to comment Share on other sites More sharing options...
Hope Posted March 4, 2012 Report Share Posted March 4, 2012 Yes, very familiar! My family is always lovingly making fun of me! It hate it most when I am talking to a doctor and I can't speak properly, they look at me like I'm just stupid! Most recently the coordination thing is more noticeable. Probably because I am able to move around more now, but I keep hitting my knuckles on things, hitting my shoulder on the corner of the wall when walking past, I racked my toes this morning on the side of the tub getting out of the shower. But I'll take it as opposed to being bed bound! =) I like the idea that I can finally stand up in the shower, so who cares if I'm getting a couple bruises doing it, ha, ha! Quote Link to comment Share on other sites More sharing options...
Wendy C. Posted March 4, 2012 Report Share Posted March 4, 2012 Yes! Sometimes I can't find the right word as quickly as I want to and I know it, but other times I'll say completely the wrong word and realize it just after I say it. For example: "Wow, what a clear, brown sky today. Oops, I meant blue sky.". It happened a lot while I was pregnant. It does mainly happen while standing. I do notice that I bump into corners and walls more than before as well. Quote Link to comment Share on other sites More sharing options...
TheLivingDead Posted March 7, 2012 Author Report Share Posted March 7, 2012 appreciate the input. mine has been bad for about a month and a half. i say the wrong word or just mangle the word as it comes out atleast 10-20 times a day. i cant sing songs that ive known for years i mess up so many words. when i read a book out loud its like im retarded. i say words that are not there i miss words that are there. im guessing this is just one more pots symptom to add to my resume but thanks for the imput it gives me alittle more piece of mind Quote Link to comment Share on other sites More sharing options...
bellgirl Posted March 7, 2012 Report Share Posted March 7, 2012 I think this is just lack of blood to the brain. I sometimes can't think of the right word or say the wrong one too. I used to slur on occasion when very symptomatic, but am better on medication. It is so frustrating, but I'm kind of used to it. I've gotten to where I catch myself before I say it, so I am more aware of it now, and better at covering it up. Don't even want to talk about running into things. I am starting to realize I just have to be slower at what I do and say, and really be careful, so I don't run into things. I'm never without bruises, so I can relate!! Quote Link to comment Share on other sites More sharing options...
jenglynn Posted March 8, 2012 Report Share Posted March 8, 2012 Oh this has been awful for me. I use the wrong words, or it takes me forever to come up with the word. Writing is always a struggle lately, frustrating because it has always been a strong skill that came easily for me. Focusing and concentration a mess, retention- both verbal and written is seriously reduced, and short term memory very poor. I had some initial testing just last week, actually, and compared to a cognitive test done 3 years ago there was dysfunction. I go back on Friday for THREE hours of testing. I am pretty sure by hour 2 I will be babbling.My doctors are attributing all of this to my concussions- I've had at least nine in a short period and have been told the importance of not getting another. But I never thought about the cognitive issues that go along with our original diagnosis. It's like a double whammy. The only good news is the neuro-psychiatrist said I have "dysfunction"- less function than 3 years ago- but no signs of "impairment" so I'm still what they consider "normal" whatever that is. But I dont like the fact that I have any dysfunction. I guess these latest tests on Friday will be very telling, according to the doctor. Jen Quote Link to comment Share on other sites More sharing options...
kmichaelson Posted March 8, 2012 Report Share Posted March 8, 2012 I just wanted to chime in that this is very familiar to me too. I definitely have brain fog and recall problems, and they're worse when I'm standing. For instance I was at the pharmacy the other day and when I went up to the counter they asked my phone number and I couldn't remember it! Things like that happen frequently to me now, and I used to have a pretty good memory.My lack of coordination and dexterity has been a big concern to me. While i hate that others are having these issues as well, it's a bit comforting to know that others with POTS have experienced the same thing. I have trouble sometimes just with the motion of walking and it's almost impossible for me to make any sudden movements any more. Other than having a tremor, my symptoms are almost identical to the onset of Parkinsons. It's weird all the things this disease can cause that you would never know about until you experience it! Quote Link to comment Share on other sites More sharing options...
bellgirl Posted March 8, 2012 Report Share Posted March 8, 2012 I've talked with my neurologist about Parkinson's Disease, Dizzy, because I will sometimes freeze, and fall over, and he says that even though we may have similar symptoms, we have no more chance of getting it than the average population, but then I read some scientific posting that said we had a 44% chance of getting it, so I don't know what to believe. Maybe that would be a good question to the physicians who are here on DINET... Quote Link to comment Share on other sites More sharing options...
kmichaelson Posted March 8, 2012 Report Share Posted March 8, 2012 I've talked with my neurologist about Parkinson's Disease, Dizzy, because I will sometimes freeze, and fall over, and he says that even though we may have similar symptoms, we have no more chance of getting it than the average population, but then I read some scientific posting that said we had a 44% chance of getting it, so I don't know what to believe. Maybe that would be a good question to the physicians who are here on DINET...That's interesting--I would love to get a specialist's opinion on this too. Quote Link to comment Share on other sites More sharing options...
jangle Posted March 8, 2012 Report Share Posted March 8, 2012 Kimbellgirl none of the studies I read from the world war 1I era in effort syndrome (pots) mentioned parkinsons disease as a long term followup. Quote Link to comment Share on other sites More sharing options...
Frugalmama Posted March 9, 2012 Report Share Posted March 9, 2012 I have major issues with this. I have difficulty even running into a store by myself because I become disoriented and I'll forget what I'm supposed to be doing or how to pay. I especially find my decision-making is impaired while standig. I will literally freeze at a store if I have to decide between two options - say, between two flavours of granola bars. I'll just stand there and stare. It's really bizarre, because I was definitely never like this before, and I have major word issues, and I constantly forget things...like asking my husband the same question three times within a couple of minutes. Quote Link to comment Share on other sites More sharing options...
TheLivingDead Posted March 22, 2012 Author Report Share Posted March 22, 2012 its a relief to know that others are experiencing the same so that it can give me alittle insight. ive had so many other classic pots symptoms and most have gone over the past three years. only weakness and this dumb mindedness seem to linger. so i guess ill take another year to wait out this part Quote Link to comment Share on other sites More sharing options...
hilbiligrl Posted March 22, 2012 Report Share Posted March 22, 2012 im like this everyday..... exactly everything..... loss of words, common ones, slurred speech, stumble for words, stuttering, difficult to complete a sentence, paragraph or carry on conversations while this happens consistently. My writing is difficult, as if the motor skills needed are damaged or hindered somehow, because it is even hard to grip a pen and has been for a good 9 years.I went from a huge, expanded vocabulary, straight A student in college to a small vocab, difficult word recall, sputtering through words and sentences like a 5 year old. I have never felt so humiliated in all my life. I use to speak so articulately and it flowed. Oh how i miss that......yep, count me in Quote Link to comment Share on other sites More sharing options...
cmreber Posted March 22, 2012 Report Share Posted March 22, 2012 TheLivingDead,It's interesting that you say this is the symptom that has lingered the most. That seems to be how it is for me too. It has been almost two years since I first discovered I had POTS. It came on very suddenly; I basically went from kickboxing, snowboarding, dirt bike riding, you name it...to passing out doing mundane things and not able to even walk through Walmart! I found the right medication, and though progress has been slow and there are definitely times of regression, for the most part I am getting closer to "normal" every day it seems. The thing that hasn't gone away, however, is this whole issue with word recall, especially when it is a "bad POTS day" or when I am just extremely fatigued. Sometimes I can't even remember a simple word, say, like "apple" or "market". It is seriously frustrating! My husband has been incredibly wonderful through this whole thing, and he helps me laugh about it when I get too frustrated, which definitely helps! But, the worst part is that I am an author and while working on my current novel, the word recall can be such a problem! I have to jump online and scour "dictionary & thesaurus.com or google" just to get that "ah-ha" moment when I see the word I was struggling to pull out of my brain! It makes me wonder if this will ever truly go away, or if this is something people with POTS (even if it happens to go into remission) have to live with indefinitely? Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted March 22, 2012 Report Share Posted March 22, 2012 Cognitive problems have been a big part of the major symptom of "dizziness"/lightheadeness/brainfog/dysphoria etc. which is all the same, and is my biggest problem by far. Before I knew I had POTS I spent a lot of time explaining it to doctors, often while not being able to think very clearly, making it harder to explain. I tried telling them it is like someone is choking you, or you are drugged. The cognitive problems include word finding, trouble adding numbers quickly ( I know I could do this fine 3 years ago, ) recalling what I am in the middle of saying, attention, working memory, what I have described to doctors as "my A game is off " because I used to be sharp, and know what is going on around me. Also difficulty integrating a variety of sensory stimuli at once, like your looking to the right and something comes at you quickly from the left, or I am walking down the sidewalk and someone is in the car window parked next to me. I do not just "know" it like I used to because my brain is just not tracking normally. I know for a fact that this is true and that it is different than I used to be and that it gets better and worse at times. At its worst I fumble things, and drop things, something that I spent 20 years of my life without doing. But before the POTS diagnosis was made just try explaining the above to a doctor and see how they look at you. I can still interpret that. Quote Link to comment Share on other sites More sharing options...
issie Posted March 22, 2012 Report Share Posted March 22, 2012 Potluck, your description is so right on. I have had a couple of "spells" that the neuro at the time wonders if they were not TIA's. After these "spells" one of which I went to the ER for - I can not do math and at a couple of my jobs before - I was a bookkeeper and very good at math. It still hasn't come back for me. It's so frustrating at times, because it scares you into thinking that we may be headed down the road to dementia or Alzheimer's or something like that. I think, maybe we just aren't getting enough blood flow and oxygen to our brains.Issie Quote Link to comment Share on other sites More sharing options...
Chaos Posted March 24, 2012 Report Share Posted March 24, 2012 Same here. Lots of word finding problems, using the wrong word, can't do math for simple tasks like I used to do, have days where I fall into walls, drop everything I try to pick up, coordination and timing are off frequently, writing is terrible. When I type on here, I find my letters frequently are messed up and I have to retype the word many times. (Like I just had to try 7 times to type the word task in the line above.) Even when I'm writing (as opposed to typing) I find myself adding the last letter(s) of the previous word onto the following word. Quality of writing is also much worse.Now I'm finding my memory is getting worse and worse which is really disturbing. I've had several really embarrasing episodes lately that have been related to me forgetting things. Saw a doctor last week who asked me what the most problematic symptoms were that had brought me in to him. After being in his office for two hours, as I was leaving I said "oh yeah....my memory is really bad these days and it's making me crazy. Unfortunately I forgot to tell you anything about it before now. " Yeesh!!!I often wonder if the reason my mind sometimes runs so much when I'm lying down is because it's actually getting blood back to my brain as opposed to when I'm upright. LOLThose rare days when my brain feels like the fog lifts and everything works like it used to.....it's HEAVEN!! Quote Link to comment Share on other sites More sharing options...
issie Posted March 24, 2012 Report Share Posted March 24, 2012 Chaos, I can so relate - It's pretty scarry these days for me too. What is it - with us all? Where is our brains and thinking ablities going? I want mine back. Issie Quote Link to comment Share on other sites More sharing options...
E246 Posted March 24, 2012 Report Share Posted March 24, 2012 Yes,Standing and the words seem to pool with my blood - just can't keep a grip on what I am saying - my concentration goes. But even worse are names - this was always bad. On this site i have such a job remembering who's who and what even i have said. I follow the research one week then cannot remember what's what again next week. I am not good with written words but never forget a conversation.The photos really help - my visual memory is great.Love to have a video chat with someone on skype who has similar symptoms - does anyone do that? Quote Link to comment Share on other sites More sharing options...
bellgirl Posted March 24, 2012 Report Share Posted March 24, 2012 Talked with my neurologist about the Parkinson's again, Jangle, and he says not to worry about it...He is amazed though how similar my symptoms are to MS, though, which doesn't surprise me, because for 13 years that is what I thought I had...I will get another MRI in 6 months, unless I need something sooner. Being put on Provigil for fatigue. That seems to be my biggest issue right now in this roller coaster ride Quote Link to comment Share on other sites More sharing options...
jenglynn Posted March 25, 2012 Report Share Posted March 25, 2012 I am so sorry to read so many of us struggle with this I am in the middle of a rather extensive cognitive battery of tests- Sadly, it does show "cognitive dysfunction" ( I had testing done 3 years ago) and compared to then I've lost function in quite a few areas- some more significant than others. I guess the only "good" news is the neuro psych said I don't have any "impairment" (yet) so not being as highly functioning is definitely better than being impaired.My testing is due to my Post Concussion Disorder (have had 10- 5 of the 10 pretty severe) so I don't know what causes my dysfunction- brain damage from concussions, POTS, oxygen loss due to so many syncope spells, or a combination. It is very scary, though, because one of my greatest fears is what my brain be like and WHO will I be in 10 or 20 years?????Jen Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.