Severe Cognitive Dysfunction

[Shimoda]

Brain fog has effectively destroyed my personality.

I can't think or speak in anywhere close to real-time. I find it very hard to tune in on an emotion for more than a split second on occasion - I'm becoming depersonalized. I'm so numb in every way. I was literally the happiest, most upbeat person you could imagine. It's gotten so bad that I can't even hold a face to face conversation. I've completely lost everything that made me, "me".

Why is this so bad? I can't speak to people anymore, it's entirely humiliating. It's depressing as one could imagine...I'm 18 and want to be able to talk with someone. You can't become intimate with someone, when during a conversation you lose track of where you are and what you are doing, let alone being able to quickly respond to what someone else is saying.

My life as I knew before POTS it is effectively over. Not only have I 'lost' my body, I feel like I've now 'lost' my soul.

What do I do? I'm all alone in this, and I'm sorry that this was so depressing. I just can't take this, it's tearing me apart.

[juliegee]

(((((Shimoda)))))

I'm so sorry. I have some very specific advice. You may have already done some of these things, if not, please consider them.

I have a 17 y/o son with dysautonomia. He's dealt with severe cognitive issues as well.

Your peers are graduating from high school and moving on to college- I'm not sure where you're at on that continuum, or if you are taking some time off because of your illness.

I highly recommend quantifying your cognitive issues especially if you plan on returning to school. You are entitled to special assistance both in high school and in college, but only IF you have a current psycho-educational assessment. Do your research and find a local psychologist, who regularly assesses high school/college age students to check for learning problems. This is expensive, but there may be universities or other resources near you where you can have this done on a sliding scale. If you are still in high school, your school system MUST provide or pay for this. Do your homework ahead of time & bring research articles with you that show the link between dysautonomia & cognitive problems. (I can help with this.) AND, be sure to have any documentation of your illness from your doctor.

Once my son had this testing done, it showed extremely SLOW (borderline- 7%ile) speed processing, and a whole host of other issues. His HR was also extremely slow at times- in the 30's- no wonder his brain was equally as slow. His examiner was able to illustrate a normal/high IQ despite these other scattered borderline findings. THAT juxtaposition demonstrated exactly WHAT this illness was doing to Mack. The testing quantified all of this, making him eligible for special accomodations. For instance, he got time and a half, water & breaks as needed on his SAT. AND, he's gotten time and a half, and TWO WEEKS to take his ACT-that's one subject at a time.

If you are considering college, check out the US Department of Education's website at: www.ed.gov

You can access or order a booklet entitled "Students with Disabilities Preparing for Postsecondary Education." This booklet will let you know exactly WHAT you have to do in order to have extended time on tests/quizzes, a reduced course load, a notetaker, a special parking place, etc. in college.

I know that you are having a hard time with relationships and maybe even leaving the house for now. I just want you to know that there are meds that can help with these cognitive issues, like Concerta, etc. And, once symptoms are improved, the world is still your oyster- it's just a little harder to pry open There is lots of help available to you as a disabled student- once you have the psycho-educational and medical testing in place to open doors.

Keep posting here. I'll help you all I can.

Hugs-

Julie

[Shimoda]

Thank you so much for posting. Seriously, it's nice to know someone has some ideas and cares.

I'm in my second semester at college, which I think makes it that much worse. I breeze through a lot of school work for some reason, though it isn't quite as easy as it once was.

I don't think my IQ has been affected too much, its more like it's there, but its hard to access it most of the time. A lot of it is reaction time and just overall clarity in my thoughts.

Relationships DO suck right now, girls or just simply hanging out with people. It's something that has been really hard to adjust to, as social life is huge in college.

How does Concerta help with Cognitive Dysfunction? Does your son take it? If so, has it helped? Any other ideas?

Thanks so much, I really appreciate the feedback.

-Shim

[erik]

Overall I can just recommend keeping whatever you can to a minimum and prioritizing so that you can get through what you want to get through. In general, anything stressful will aggravate a dysautonomia so that is our Achilles heel. If you have other things that you can identify that affect you then keep tabs on them too. In short, you'll need to insulate yourself & give up on certain things or risk putting everything in jeopardy.

You have a great advantage in knowing that you have a condition and despite the mystery and lack of definitive treatment, you have things you can do to help at least somewhat. The problems may subside or become more manageable too. The dynakids site has good tips on college stuff. Some meds might be helpful... ironically either the stimulants or depressants can help in some cases. In any event, it will require compromise of some sort and extent, but it can be done.

If you respond well to rest. Find a way to ensure enough of that. Can be quite a challenge. Figure out if nutrition is a factor for you. College students are notorious for pushing the limits in nutrition, sleep, stress, etc... all the things that tend to make us worse. So you'll probably need to tread a cautious (and reasonably separate) path. If you look closely, there are many other folks in school that likely feel similar to you, and folks are rarely truly aloneg in that regard. Also, many expectations are based upon myth. Myths about college, myths about the opposite sex, myths about marriage, work, etc. "Dropping expectations" can initially feel like a loss, but may ironically put you more in tune with real life than other folks... and at an advantage.

[juliegee]

Thank you so much for posting. Seriously, it's nice to know someone has some ideas and cares.

I'm in my second semester at college, which I think makes it that much worse. I breeze through a lot of school work for some reason, though it isn't quite as easy as it once was.

I don't think my IQ has been affected too much, its more like it's there, but its hard to access it most of the time. A lot of it is reaction time and just overall clarity in my thoughts.

Relationships DO suck right now, girls or just simply hanging out with people. It's something that has been really hard to adjust to, as social life is huge in college.

How does Concerta help with Cognitive Dysfunction? Does your son take it? If so, has it helped? Any other ideas?

Thanks so much, I really appreciate the feedback.

-Shim

Hey Shimoda-

I really get the relationship thing. Mack's biggest issue (sounds like yours too!) is speed processing. You call it "reaction time." A lot of relating to other people is that back-and-forth banter. It goes really fast, and is multi-faceted- especially with your generation. I can see Mack getting lost with that often. He loses his train of thought when speaking, has trouble tracking conversation, etc. How can THAT not affect relationships. Like you, he's very bright, but feels like he's trapped by his brain's limitations. Frustrating.

Concerta (and other stimulant type meds) help in may ways. Number one, they boost speed processing. Mack became so much more socially aware when he began taking it. He saw nuances to relationships, cliques, etc. that flew over his head before taking Concerta. Stim drugs also help POTS/NMH by acting as vasoconstrictors. By improving the constriction of blood vessels in the peripheral circulation, they improve the amount of blood flow returning to the heart. Doctors surmise that these meds also exert beneficial effects through acting directly on the central nervous sytem as well.

I suspect that you're a very empathetic guy. Living with a chronic illness like yours kind of opens up your mind to the way that lots of people suffer. THAT facet of your personality is what will ultimately draw people to you. Your kindness, openess, and nonjudgemental attitude. BTW, Chicks dig that :-) Eric describes it perfectly. There are lots and lots of people, like you, who are struggling with various things. Be open to their struggles. Share yours- as you feel comfortable. That's the beginning of every relationship- that acceptance and understanding.

If you have a good doc, who "gets" your condition, maybe consider giving Concerta (or something like it) a try. In a recent post to Aquadiva, I gave a link with some good prescribing info that you could pass along to your doc that describes HOW stimulants help POTS/NMH.

I'm so glad that you are in school and doing so well. Don't worry about the whole psycho-educational evaluation if you are keeping up adequately. You have so much to be proud of, Shimoda. Give it time. I suspect that girls will be flocking to your "wonderfulness" as soon as you begin showing them who you really are.

Julie

[ajw4790]

Hi,

I think that I can greatly identify with the problem you are describing with cognitive function. I struggle all the time, and have for as long as I can remember, but has gotten worse with age (I am 26, so not b/c of OLD age. ). I always hated being called on in school, because I could not multi-task and think as quick as the teachers would like. Then in college we had more discussion group type classes that I struggled to keep up with my understanding of the discussion and process what I prepared for the class. By the time I had something to add to a topic everyone else had moved on. My brain does not function that quick. The back and forth banter is hard for me, especially with topics of substance. Also, I can lose about any argument that I have face to face with someone, because I can not portray my side as quick and appropriately as the opposing side can. I do much better with writing my thoughts out, and slowly processing my thoughts. It can be very difficult on everything school, relationships with others, work, etc. Ultimately it was the cognitive dysfunction that made me have to drop out of grad school and discontinue to pursue the career that I had been working towards for so long.

I have tried just about every ADHD medication and most of the POTS meds, nothing has really worked. I was neuropsych tested and found to have Adult ADHD, so I was able to have that documented finally for school. I got the diagnosis late in the game though... I totally agree with getting tested as early as you can, and establish accommodations with disability services at your school.

Hope that helps some! Sorry I do not have any answer to solve the problem though!

[Shimoda]

Thanks guys for all the support. It's nice in a way to know I'm not by myself in this.

I've been trying to open up a little more, and manage my schedule better. I think it helped a little yesterday, I'm going to keep that up. Maybe I just need to relax and do what I can. I push myself too hard I think.

Thanks again for all the help. You guys are life-savers.

-Shim

[tinkerbella]

Shim,

You are a wonderful person. You were so kind to me when I was new here, I remember you trying to teach me how to make a tiny pic of my own into my avatar. Before pots I was dxed with add and I really already had pots. I wanted to cry as I was so happy to complete a project that I called my dr back and thanked him the same day. I have taken concerta er for add, then with it's brain fog from the pots. Right now my heart rate is a little too high so we are cutting it out. I'm a delicate flower so to speak. I'm learning new ways to do things and time will tell what is best for my heart.

It made a big difference in my life. I wish someone had noticed this problem when I was a child. I think boys were boys noticed and I was labeled shy, quiet, and was out sick a lot. Julie and everyone else gave you a lot of good ideas. I would try the concerta if i were you. I would also try to find someone to talk to for ongoing support. It's not easy living with a chronic illness and going to college. I wish you the very best Shim, let us know how you are doing.

(((((((((HUGS)))))))))

Bellamia~

[tinkerbella]

Shim,

You are a wonderful person. You were so kind to me when I was new here, I remember you trying to teach me how to make a tiny pic of my own into my avatar. Before pots I was dxed with add and I really already had pots. I wanted to cry as I was so happy to complete a project that I called my dr back and thanked him the same day. I have taken concerta er for add, then with it's brain fog from the pots. Right now my heart rate is a little too high so we are cutting it out. I'm a delicate flower so to speak. I'm learning new ways to do things and time will tell what is best for my heart.

It made a big difference in my life. I wish someone had noticed this problem when I was a child. I think boys were boys noticed and I was labeled shy, quiet, and was out sick a lot. Julie and everyone else gave you a lot of good ideas. I would try the concerta if i were you. I would also try to find someone to talk to for ongoing support. It's not easy living with a chronic illness and going to college. I wish you the very best Shim, let us know how you are doing.

(((((((((HUGS)))))))))

Bellamia~

[Noreen]

True wisdom in your post, Erik

[erik]

True wisdom in your post, Erik

I speak from the insight of failure so I know some pitfalls, plus I have studied & learned from the best:

http://www.youtube.com/watch?v=ZsTTvKWPZGw