Specific Cognitive Challenges: Reading In Particular

[erik]

I have a thing with reading. Traditional reading mostly... like books. I have noticed at least a few other folks on board here that indicate similar challenge. I am wondering if I could solicit your description and response because I have trouble describing this for myself (and fear bringing it up formally because I can't describe it well). I've had various periods of what is probably "brain fog" or whatever, with one extreme case being inability to think of or spell simple words (but usually milder). I'm convinced I've got something separate that is more specific to reading itself.

For me, I think the problem is at least 3 fold:

First, is a general attention difficulty. Since reading takes extended focus, I have some challenge with that. Some is simple attention, some is volition. I have brief periods of fascination on a topic. I even buy some books. But I've actually read probably 1 book in the last 20 years (and it was on a "dry" topic I basically already know).

Second, I sense that there is something challenged or inefficient specifically with reading for me. I've done a lot for myself with self study over the years, but was not "a natural" in terms of vocabulary, spelling, etc. as a yute. I generally have to digest things in small pieces. Internet information tends to be fed that way so it has helped me. However, I dropped out of college long ago and much had to do with inability to even do basic study (I had survived a long time on compensatory skills & efforts but eventually one has to become a "real student" and I couldn't hack it).

Third, I have or have developed a level of anxiety with reading. I have almost a claustrophobic feeling when contemplating sitting down with a book. It is hard to describe. I will also get specific negative feelings while reading, like an "oppositional/defiant personality disorder" where 90% of my mind strays from the book! It is almost humorous. To digest a passage, I will have to recoup myself and re-read a section over and over until I get through it and feel like I actually paid attention to what I was looking at! After a period of reading, my eyes can end up physically "jittery" as though there is a physical fatigue too.

So for those of you with reading (or other very specific cognitive) challenges. Would you be willing to describe it? I'm hoping there is a simpler way I can state this stuff! Also, of course, I'd love to hear about any work-arounds or cures I am an adult now, though this challenge does stem back a way. If I were to try to do something about it, should I consult a neurologist, psychiatrist, something else??? Are there "adult learning disability" specialists now-a-days?

[firewatcher]

I have something similar with straight-out mathematics. It's like there is some part of my brain that just won't do it, reading music is the same for me. I am a highly visual person, so reading is making "mind-pictures" for me, so it is easy for me. But math is just not there at all, unless it is visual: volumes, money, spacial things I can calculate. Give me a page of numbers and I just freeze (I still have issues with adding into the teens ) Lately my eyes have just not allowed me to read like before, everything goes all fuzzy and distorted after a short while. I figure it is some part of my brain that never developed. It took me forever to be able to tell my left from right as well.

[lissy]

I understand , but one thing you are a pretty good writer. When I read I have to read it over and over and then I actually forget what it was even about. Like the storing is not working right in my brain or something. I have also noticed the white paper and black wording seems so BOLD , don't know if that makes sense to you... I probally am having something else going on because my memories even affected when watching movies ....Who knows I get tired of even telling doctors my problems they seem to not listen anyway.

Lissy

[MamaTrain]

Sounds like my ADD growing up and even now. I'm sure someone on here will say just the right thing that will spark a fire and you will figure it out! :-)

[juliegee]

Aha Eric!

You pose many interesting questions. I'm an AVID reader. I've been known to easily digest an entire book (fiction!) in a day or two. However when I'm very symptomatic, I am unable to read- very puzzling..... I also have son with dysautonomia, DXed with dyslexia. Mack is very bright so he was able to compensate or hide (like you describe!) his problem at school. I became aware of his reading difficulties very early on, worked hard to convince his teachers, then found a practitioner to formally DX him about a year or so before he was DXed with dysautonomia.

I find it VERY interesting that many of the cognitive dysfunctions present on dyslexia are also present in autonomic dysfunctions. Reading seems quite simple, but it is actually a very complex task. We start by learning the A.B,C's, then attributing sounds to each letter, stringing the sounds together until they form words, then stringing the words together till they form sentences. A lot can go wrong in that sequence, especially with a blood-deprived brain that is already on overload trying (often futilely) to maintain proper HR/BP, etc.

Dyslexia is primarily either auditory or visual. Patients with dysautonomia can have deficits in both areas. My guess is that your deficit is auditory, based on your struggle with spelling. My son is also DXed with an auditory processing disorder. He has a very difficult time hearing the proper sounds and then stringing them together to make words fluently. Mack has repeatedly tested with very poor phonological processing and phonemic awareness. Additionally, he has NO auditory memory. If you tell him something, he can immediately repeat it back to you & then totally forget it 30 seconds later.

There are many other components that comprise accomplished reading. Working memory is essential and that is often VERY compromised with dysautonomia. Working memeory is needed for your brain to do multi-tasking like stringing together sounds, while remembering the words they make and the story they are telling. Another important component for accomplished readers is the ability to recall words. This is tested by having the examiner hold picture flash cards to the test subject while they QUICKLY recall the words portrayed. This is also another EXTREME weakness for folks with dysautonomia.

So, in short, I suspect your issues are largely impacted by your illness. Testing with a neuropsychologist would be a good beginning point. They don't DX dyslexia, rather a "reading disorder." They also don't help or treat impacted folks, but may have resources they can point you towards.The most help Mack ever got was through a speech and language pathologist, who happened to be the president of our local International Dyslexia Association (IDA.) That would be a good place to start, the IDA, see who they recommend for help in your local area.

Lastly, it is so COOL that you are looking into this as an adult. With your dry humor and competence, I would NEVER guess that reading is a struggle for you. That's exactly what my son's teachers thought of him also You compensate beautifully....but isn't that exhausting? I call my son "the King of Kompensation." He rolls through the day pretending to be well, pretending school is easy, pretending he "gets" what the teachers are saying, pretending, pretending, pretending.... I commend you for identifying this & doing something about it.

Julie

[juliegee]

BTW, check out the Bible for folks with reading issues: Overcoming Dyslexia by Sally Shaywitz. You will find yourself in Chapter 13!

I can't be the first to have connected reading problems with dysautonomia I've met so many dually affected! I'll do some research and post links if I find anything interesting...

Julie

[avidita]

I have some reading issues but they are not similar to yours. Since before my POTS started I've gotten vestibular migraines (bad dizziness/sometimes vertigo and nausea) from reading for prolonged periods of time. It used to be mostly around tests where I would study for 6-7 hours straight. But since POTS it can take me only 20 minutes to go from fine to very dizzy from reading. It seems to happen when I am sitting, so I try to read lying down.... The weird thing is that sometimes I can devour a 800 page book in 24 hours (reading non stop through the day and night) if it is interesting to me (like the Harry Potter installments, LOL) and sometimes I will get dizzy before I finish an article in a magazine.... so mine may or may not be some type of anxiety....

[Tachy Phlegming]

My problems are in the area of other peoples' cognition. I can say something over and over -- it is super precise, logical, and explanatory -- and then I can't get it to register in other people. After also, after I say something, I hear gibberish back. Terms that are fuzzy, confused, have multiple meanings (like "anxiety") and which don't make sense to me. I repeat what I have to say and more gibberish comes back at me. Does anyone get that?

The weirdest example was with my heart rate. When I asked why it was high, I was told it was an improper question and then, also got gibberish in response to the question. Then one day when I went to get help for another problem, I was asked why it was high. I was really shocked at the question because I had been told it was an improper question for years and years and years. But of course, by then, I was so steeped in gibberish that in answer, I gave the nonsensical answer I had been given when I had asked the question (after having been told it was improper).

So then I started not to understand why I couldn't ask the question and other people could and that really confused me.

One of the few places I don't have these weird problems is on this board.

How are you on that score Erik?

[futurehope]

Tachy,

When you asked "Why is my heartrate high?" and you were told "It is an improper question.", you have to look beyond the words "It is an improper question." The person said that to you for a reason: I can only guess what it is?

The person said that to you in order to:

force you to be quiet and ask nothing else

make you feel intimidated to keep you quiet

keep you from asking anything for which the doctor had no answer

keep the doctor from feeling inadequate because he didn't have answers

sever the doctor-patient relationship deliberately because they no longer wanted to deal with you and with a symptom they did not understand

I could come up with other possible reasons a person said "It is an improper question.", but the point is........

The words "It is an improper question." were used apart from the intrinsic meaning of "it", "is", "an", "improper" "question". The words were used to achieve a desired effect in you. The words were used to make you feel uncomfortable and to make you question your right to have an answer. The doctor chose words that had a desired impact on you......the impact of stifling your questions. He was successful with his intentions, wasn't he? You still remember the encounter and that other people could ask, but you could not.

I don't know if I made any sense to you, but sometimes our POTS brains do not work very well. Sometimes a person answers us, but the answer is obscure, and the answer has the effect of confusing us. We don't need confusion. That's for sure.

[janiedelite]

I read fiction every day prior to coming down with POTS. Since then, it takes quite a bit of work for me to concentrate on any reading. Usually I'm too tired to expend the effort. I have developed memory problems since developing POTS, and I think it takes a lot more concentration when I'm reading to remember what the beginning of the sentence said by the time I reach the end. Also, I enjoyed writing prior to POTS and excelled in grammar and vocabulary. I started writing a book since getting sick, and some days I can barely put an intelligible sentence on the paper. I forget how to spell simple words.

I've never had ADD prior to POTS, but my difficulty concentrating leads me to believe that I now suffer from ADD to some degree.

[Tachy Phlegming]

Just to clarify -- I spent a lot of time asking about my heart rate. I was told it was a symptom of anxiety even if it went from morning to night (and I couldn't possibly be thinking of anything which would keep it so high all day long).

I asked in the context of what could be physically wrong to make my heart rate so high-- the answer was (again, in so many words) that it had nothing to do with the state of my physical health.

The variations in my heart rate with drinking fluid was also unexplained and treated as an unimportant anomaly.

And yes, the reason behind the answers I got was most of what you wrote above.

(And what I wrote was tongue-in-cheek -- It wasn't confusing in the usual sense but rather in the sense that taking vitals seemed to me to be an important ritual at the doctors' office but a ritual with no possible interpretation and no real medical significance).

[ramakentesh]

I have some reading issues but they are not similar to yours. Since before my POTS started I've gotten vestibular migraines (bad dizziness/sometimes vertigo and nausea) from reading for prolonged periods of time

Its always nice to hear someone gets EXACTLY the same as I do - when I wa syoung and on the computer for too long Id start to get slightly spacy, nauseous and 'pin point vision' - I was soon to find out that this was a type of ocular migraine being triggered by bright light.

As a teenager I used to get them from reading all the time - so much so that if I read at night Id wake up feeling terrible in the morning like I was hungover.

Anyway, once I got POTS this symptom went out of control! Looking at a computer for more than ten minutes when im bad can make me feel potsie AND migrainey, any reading can do it and any visual concentration can cause it. When my pots isnt so bad it seems to take longer and longer, but I NEVER read the night before anything important because I always wake up tired like ive had a migraine if I read before sleep.

I also have an assortment of visual symptoms - visual snow all day every day as an example.

[sarahmarie43]

Erik,

My reading issues are very similar to yours. I was always an A+ student, graduating from high school at the top 5% of my class- but I NEVER studied and almost never read the required reading. My memory is very sharp, so I was able to retain things learned in class and test well, but if I would try to read anything on my own, it just did not make sense. I have read full pages before, only to realize that I had been thinking about something else the entire time. When I go back and re-read, it was like I had not just read those very words just seconds before. Unless I am absolutely enthralled with the topic, it's pretty much hopeless.

I also never completed college. I felt terribly unprepared, as you really can't "B.S." you way through college (well, I did that in a few classes, but for the most part you really have to know how to study, or at least be capable of it). However I was able to work around my reading problem in K-12 was not working anymore. It was very embarrassing.

But, somehow, math comes very easy to me. I had the whole high school math department after me to go into the actuarial program at Arizona State, but there was no way I was going to last 8 years in study. I completed 3 years as a math major, and then dropped out. I am actually taking one final class online next semester to finally complete my associate degree.

Another thing I can do very well is editing. My father is a writer and he regularly has me edit his reports for grammar and punctuation. As long as I don't have to actually understand and retain what I am reading (I could never edit content), I can zip through 100 pages in no time and catch almost any error. But I could never tell you what any of the reports were about.

Up until a few months ago, I had also only read one complete book over the past two decades- Alice in Wonderland. It somehow is able to keep my attention, and it is very short. Since I have not been working for the past year, I have made some attempts at a few other books, mostly about physics, but have only finished the one that was 100 pages long.

I have wondered if I have ADD or another learning disability, but I was too ashamed to talk to anyone about it. However, I have discovered as an adult that it is really not that uncommon. I was just always comparing myself to my older sister, who is probably actually a genius.

I can certainly relate to your anxiety about reading. I can't say that I know how to fix it or improve it, but if you figure something out, be sure to let us all know!

Sarah

[erik]

Compensation is key for sure. No, not the over-sized truck that I have... but making up for inability to learn in one way by extra effort (& ample faking it) elsewhere. I can be a good sponge (and chameleon) at times which works well for some stuff. It's like all the little things one does or avoids because of POTS symptoms without even thinking of it... or before knowing you have it. I'll try to pick up a copy of Overcoming Dyslexia... and have someone read it to me Just kidding, I can manage, it just takes a normally prohibitive level of time & effort.

Miss Tachy, I have certainly had with my share of "external cognitive disorders"! My medical term is "Reverse Conversion Conflatulance"... where docs conflate key facts and project their inadequacies upon the patient's physical symptoms. Sometimes it has been a condition of a rather persistent nature... they are disheartening and served to deflate my fledgeling confidence. Now I've overcome them mostly through a keenly honed & cautiously apportioned negative attitude! I tend to not give a "hoot" like I used to. Like most, the "hoot" get's kind of kicked out of you over the years and replaced with a big Valley Girl style "What...Ev...er". I'm a bad example on that front, since I've given up on more than I've overcome over the years.

Oh yeah... one of my favorite quotes ever is from Shawshank Redemption: (A frustrated Andy to the Warden) "How can you be so obtuse?!?!" Drop that one on the next doc who "conveniently" just doesn't get the point!

And then there is this interpretation:

http://www.movieweb.com/video/HU2l3726o2sA45

Funny, I happened to spot a neuropsychologist office just yesterday on my way to pharmacy to arrange a short trial of NuVigil (should be giving it a shot in a couple days). I may have to have a chat with them to see if there might be something I can do. I was intrigued by some of the things other mentioned elsewhere (I think on this board) about some visual "tricks" that change the look of a page and end up helping some folks. Seems like that could sort of help. Otherwise, air-conditioning is one of my pre-reqs... if it's remotely warm I can't concentrate at all!

I think ADD is a possibility for me, and there was that Vandy study that found it to be more prevalent in POTSies. A while back I looked in to lots of similar things and found SCT (Sluggish Cognitive Tempo) which is now called ADD-PI or ADHD-PI (Primarily Inattentive) to be a decent match. In my approximation it's like ADHD without the impulsiveness (at least not outwardly)... internally my mind has it's constant distractions. I do have a couple modes I can be in... thoroughly tired and unable to focus or accomplish anything as a result... vs. an active mode that involves being actively distracted! It is possible that an alerting drug can help with both that and give generalized "pressor" effect and help with my upright circulation... if armodafinil does anything for me I'll probably end up asking about cheaper old-school options.

When I read up on head injury stuff, it really rang a bell... there can be diffuse injury that doesn't have specific failure but kind of slows overall processes down and while things don't become impossible or overtly disturbed they take vastly more "internal" effort. In short, one ends up with mental fatigability. This kind of fits my pattern of needing to take a break like every 10 minutes when trying to read stuff that takes concentration... I get drained but I can rest and go at it again pretty quickly. I can imagine POTS stuff could do that sort of thing too, so I might have compounding minor problems adding up into something significant.

[Tachy Phlegming]

Miss Tachy, I have certainly had with my share of "external cognitive disorders"! My medical term is "Reverse Conversion Conflatulance"... where docs conflate key facts and project their inadequacies upon the patient's physical symptoms. Sometimes it has been a condition of a rather persistent nature... they are disheartening and served to deflate my fledgeling confidence. Now I've overcome them mostly through a keenly honed & cautiously apportioned negative attitude! I tend to not give a "hoot" like I used to. Like most, the "hoot" get's kind of kicked out of you over the years and replaced with a big Valley Girl style "What...Ev...er". I'm a bad example on that front, since I've given up on more than I've overcome over the years.

Oh yeah... one of my favorite quotes ever is from Shawshank Redemption: (A frustrated Andy to the Warden) "How can you be so obtuse?!?!" Drop that one on the next doc who "conveniently" just doesn't get the point!

And then there is this interpretation:

http://www.movieweb.com/video/HU2l3726o2sA45

My experience is that doctors get angry and downright hostile if they just don't like the disease you have -- and when they get angry they make up a psychiatric diagnosis out of whole cloth. Futher angering someone with a hair triggger temper by saying the above while in his care -- despite its truth-- I believe is what put some people on here into mental institutions.

Now if someone else who accompanied the patient were to say that, the doctor wouldn't have any recourse. At least I've never heard of diagnosis by proxy.

I think it's a dream of (many of) ours to have someone with that attitude come with us to an appointment and say just that when a doctor starts to say something which makes no sense medically (if you think you have a cognitive problem, just imagine being a doctor, not knowing medicine, and totally fogging out when your patient talks because you missed the lecture on the autonomic nervous system! ).

At least remembering what you wrote may make us smile when we next encounter the nonsense and are holding our tongues. (Oops that was sticking it out, not holding it, I should watch it).

[firewatcher]

"Now if someone else who accompanied the patient were to say that, the doctor wouldn't have any recourse. At least I've never heard of diagnosis by proxy."

Hmm, can we get POTS buddies? Another forum member/dysautonomic friend to go with us and whack the doctor for us? I've got a good two-inch-thick binder of related medical articles that might make a dent! It would at least get his/her attention.

I'm in the Atlanta area, anybody want me to go? Who'll go with me?

I'm about to fire any doctor that is not either extremely smart or extremely good-looking! (Oooops! that was the supplemental estrogen talking! )

[erik]

He he. Yes, I figure with some docs even if you are NOT crazy when you go in to see them... you ARE by the time you leave! Perhaps a bit of a "self fulfilling diagnosis" thing can occur!

Indeed, one should be wise & tactful in dealing with a doc. I like my current doc overall and think his being younger is probably a bit of a help. I also thank him when things work out (like latest fludro scrip)... I figure it can help that he knows he is not helpless in helping me, since that is a situation that can drive people & docs away. They don't want to be helpless so we can be frustrating patients at times. I consider it a simple personal/professional gesture too (emphasis on simple since a doctor-patient relationship has reason for distancing & abstraction).

The next specialist I'm headed to (cardio, not neuropsych for reading/ADHD stuff yet) happened to teach my general practitioner not long ago, so if the teacher comes up with some good info or a plan for me I figure the arrangement could be good! At this point, I could probably drop the "obtuse" line on my GP as a joke (maybe needing explanation if he isn't a fan of the movie) and not damage things... with others I think it would only be an option if you're planning on saying goodbye anyway

With how fast doctors visits tend to be now-a-days, I often don't even know what happened until I'm on my way home afterward and playing it back in my head. They end up being like either a 10 minute barrage or 10 minutes wasted very easily. Makes me worry how easy a doctor could get the wrong read on a patient when under such a rush. Thankfully, they haven't carted me away just yet

I did refuse to sign the "pre-consent to treatment" form on a shrink visit once... that might have saved my medical posterior once