Cognitive problems

[kristinp29]

Hi everyone,

I'm a little late on this topic, but I wanted to post about my experience with cognitive problems. I was a freshman in high school when I first got sick with POTS. By my sophomore year, I had to be homeschooled because the symptoms were so bad that I couldn't attend school. One of the symptoms was cognitive issues--memory, comprehension, etc. Sometimes, it was to the point that I could not read a sentence and understand anything that was being said.

I posted about the nutritional program I'm on under opus88's nutrition topic. I take a product called Ceralin, made by Metagenics. It's a pharmaceutical-grade nutritional supplements that has brought my cognition up to 100%. When I'm on Ceralin, which I take once a day, I don't notice any problems at all. Cognitively, I feel like I did before I got sick. It takes about 3-4 weeks to build up in your system enough where you really notice dramatic improvements. I highly recommend it because I'm amazed at how much it's helped me.

You can get Metagenics products through a health care practitioner, such as a nutritionist, chiropractor, or (if your doc is willing, because some are not) a doctor. I've been so fortunate, because my mom is a nutritionist!

Hope you're doing well!

Love,

Kristin

[walstib9]

K- do you feel those supplements help equally when we are upright? I have been wondering lately if 'some' memory could be erased like in the Jim carrey movie?

I posted a couple times on the "rem/sleep". My night last night was as I predicted. Was it self-fullfilling? NO. I just knew. A dark thing seped through my cpmputer last night and my SERIOUS sleep disturbances lived it over and over all night long.

Didn't live yesterday. Lived the nightmare it was last year that I am still recovering from. Weird dreams are one thing. Re-living life ones are worse. Cognitive problems? I couldn't feel more off this morning. Afraid, hopeless, racey. Utterly unconvinced that anything will ever work so what's the use? Those thoughts get old with these disorders. The thoughts increase our stress horomone and that makes sypmtoms worse and round it goes. I feel like some of us even give off this 'vibe/energy.' People can feel it. But it's based on energy and feeling SO REAL. makes people uncomfortable. Lately i am jealous of people who use drugs,alcohol, shopping, promiscouity etc to 'check-out' of the way they feel while I struggle through the harder way. The real way. Some of those folks even have imbalances as well I presume but they have chosen to live differently and seem to be happier by not dealing. Anyway-cognitively hopeles day. I need much music today.

Thanks for being here.

[Dawg Tired]

Mmmm... Memory problems... I woke up about 5 one morning - REALLY needed to pee. Had NO IDEA where the bathroom was; WHERE I was; WHO was in bed with me. (Turned out to be Hubby!) I was SO scared! If I had been able to find clothes (good thing it was dark!) I would have got dressed and left the house. The whole thing was probably the most frightening 45 minutes in my life. I now know how/why people with amnesia get lost! (But I sure didn't want to wake up that strange man who was in bed with me!)

I quit driving after the 2nd time I got lost driving home from work. I would be driving then suddenly have no idea where I was - and I would be MILES away from any place near home or work!

[opus88]

Gayla.

I can't even imagine how frightening that would be! And you are way too young to be going through something like that - not that it's ever ok, but we don't usually hear of that happening until people are much older.

Have you told your doctor about it? Could it have been caused by your medications? I don't think I'd waste any time wondering about something like that - you need to know why that happened and how to keep it from happening again.

[morgan617]

what were we talking about? morgan

[Dawg Tired]

opus88, I told my PCP (at that time) my current PCP, 3 cardiologists, 2 psychiatrists and a neurologist. All but my current PCP have told me that I am "normal"!! Isn't THAT a hoot?!?!?! Luckily my current PCP (We had to move 1300 miles to get me back to a "real" doctor) knew the "old Gayla". At that time I was not on any meds except for my estrogen.

My PCP and EP (current) think this was all caused by the extreme bradycardia I would sometimes have - I was dropping into the 20's - not supplying enough oxygen to my brain. I can't say that my pacemaker has helped a lot though. Nowdays hubby knows to keep an eye on me. I feel like a kid that needs a keeper!!

[walstib9]

):

[walstib9]

Was gonna ask how everyone was but looks like I was the last one here. Looks like my cog syuff is all alone as well. Been talking a bit with someone who feels they are 'just existing.' That's what it's like now. All the fire in me going out.

[Miriam Poorman-Knox]

This is an awfully large club we belong too, the MENTAL PAUSE" club. I too have this problem. I did research and found that Vanderbuilt as well as other centers that treat this disorder use ritalin for this problem. I have been taking it for a while now, must say it really does help. I STILL HAVE POTS so the problems still exist, but am more aware and therefor able to deal. I did have the neuropsych testing 2x once on ritalin and once off. I definately was better on. You will find this info on many sites. This is a personal decision, but it makes me feel like a slightly more competent woman. Also you might want to keep extra sheets for your massage at work and make sure there are doubles of things that if you don't have make you "pause"!!!!!!!!!!!! Helps me Miriam

[Miriam Poorman-Knox]

Was gonna ask how everyone was but looks like I was the last one here. Looks like my cog syuff is all alone as well. Been talking a bit with someone who feels they are 'just existing.' That's what it's like now. All the fire in me going out.

<{POST_SNAPBACK}>

The fire in us never goes out....it may flicker, we are too powerful a force for that. Take breaks when needed,, never question your power, fire, we are differnt than we used to be. Some days I am a slug others a somewhat competent wife.

Even if you are the last one on a subject please continue, I read when I am on, and will reply. I promise. Miriam

[Guest tearose]

That's just the point...by the time the topic comes up again. We all forgot what we said or even if we responded...so it may be new again! Gotta keep a sense of humor with this!

What was that TV show advertising campaign not too long ago? If you haven't seen it, it's new to you! Well, if you don't remember it it's also new to you...gosh, I didn't read thru the later posts, someone may have said this already...well, that is just where I'm at these days...

take care, tearose

[Miriam Poorman-Knox]

  That's just the point...by the time the topic comes up again.  We all forgot what we said or even if we responded...so it may be new again!    Gotta keep a sense of humor with this! 

What was that TV show advertising campaign not too long ago?  If you haven't seen it, it's new to you!  Well, if you don't remember it it's also new to you...gosh, I didn't read thru the later posts, someone may have said this already...well, that is just where I'm at these days...

take care,  tearose

<{POST_SNAPBACK}>

AMEN It has always been my hope that a sense of humor is one of the commandments. For us to survive we and our loved ones must be able to just let the laughs go....... The good thing about responding here is that it has already been written so a memory can always be jogged!!!!!!! Miriam

[walstib9]

God-THIS WAS/IS me!!!! Not so much the social but the not 'jumping in.'

Note though that we had strength that we drew on IN SPITE OF and kept a tryin'.................

Depression and Anxiety in Adolescent CFS, FM and OI

"adolescent girls with CFS showed strengths such as adequate self-esteem

and scholastic and social abilities, and weaknesses such as low competence in

adolescent-specific tasks and internalizing distress, which may partly be

explained by syndrome-specific somatic complaints." ~ van Middendorp et al

Anxiety and depression may be experienced as a result of the disbelief, hurtful

comments, loss of socialization time and learning difficulties faced by kids

with chronic illnesses such as Chronic Fatigue Syndrome (CFS), Fibromyalgia

(FM), and Orthostatic Intolerance (OI). Losing the ability to participate in

activities that helped define an adolescent's self-image, seeing friends drift

away, being teased by disbelieving peers, and facing the possibility that

medical treatments will not help can be very difficult. Adolescents may be

frustrated by their inability to push through their symptoms and achieve in the

same ways they did when they were healthy. They may be deeply upset by the

possibility that they may not recover. There are many issues for them to face

and come to terms with prior to and immediately after a diagnosis.

It is also thought that depression and anxiety may occur as part of the

neuroendocrine changes that are part of CFS and FM. For example, anxiety may be

triggered by the surges of catecholamines that occur during presyncope and

orthostatic tachycardia, common experiences for youth with CFS and forms of

orthostatic intolerance such as neurally mediated hypotension (NMH) or postural

orthostatic tachycardia syndrome (POTS).

It is often possible to differentiate between CFS, FM, and major depressive

disorder. A comparison of adolescents with CFS and adolescents with depression

finds higher self-esteem and feelings of self-efficacy in those with CFS. In

addition, adolescent CFS subjects have less depressive symptoms and antisocial

behavior than do their peers with major depression (Carter, 1995; Carter, 1996).

Characteristics such as life changes, cognitive difficulties, negative

self-attributions, social relationship disruption, and somatic symptom

presentation may also be used to differentiate between idiopathic chronic

fatigue (ICF), depression, and controls (Carter, 1996).

The area of overlap between adolescent CFS and adolescent depression that has

received the most attention is the internalization of distress. Three studies of

adolescent girls with CFS (Pelcovitz, 1995; Carter, 1999; van Middendorp, 2001)

and one study of adolescents with several months of idiopathic chronic fatigue

(Carter, 1995) reported high scores on measures of internalizing. The evidence

of increased rates of depression in adolescent ICF (Smith, 1991; Carter, 1995b)

and CFS (Brace, 2000; E Garralda, 1999), and of anxiety in CFS (E Garralda,

1999), has added to interest in this area. However, researchers continue to

report that adolescents with CFS can be differentiated from those with major

depression.

Despite the challenges they face, adolescents with CFS have psychological

strengths that they draw upon. Normal achievement motivation, no unusual fear of

failure, high internal locus of control, and the use of palliative reaction

patterns are reported in adolescent CFS (van Middendorp, 2001). Normal

adjustment for psychosocial self-esteem and social abilities is is also found in

adolescent girls with CFS (van Middendorp, 2001; E Garralda, 1999). Total

competence is higher in CFS than in adolescent juvenile rheumatoid arthritis

(Brace, 2000). Syndrome-specific somatic complains and the impact of the loss of

socialization time may help explain low perceived competence in specific

adolescent domains for girls with CFS, such as athletics and romance (van

Middendorp, 2001).

The questions raised by comparing adolescent depression, CFS, and juvenile

rheumatoid arthritis are explored in this interview with Bryan Carter, PhD.