Cognitive problems

[Staceyf]

Hi all I Am in desperate need of help. I had a knife exactly a year ago may 5th. I am starting to think I have early Alzheimer's my memory is completely off. This weekend example is a friends wedding which was at 12 I thought 3 and then went to wrong place. I forgot to put up gargae door before backing out pulled hinges off walls. I am unable to keep a thought multi task like I used to and dizzy as ever. I'm really scared and only 39. I'm very irritable because I'm angry with myself. Has any one out there expiranced this??

[arizonajack]

I see that this is your first post so I bid you welcome to the club that nobody wants to be a member of.

There is a search feature at the top right of this web page.

Put in the word memory and click search.

You'll find that many others have reported memory issues.

You might find some helpful information in those threads.

Meantime, I suggest a consultation with the doctor that headed up your AN treatment.

[Staceyf]

Thank you so much!!

[Hokiegal]

Hi Stacey, I am experiencing the same issues two years post-op, and recently posted a similar question.  Received a lot of GREAT information.  I too thought it was early-onset Alzheimer's.  Ended up taking a full battery of neuropsychological testing.  Will receive the "official" interpretation of results from the neurologist in two weeks, but the test report itself answered a lot of my questions.  Basically, hearing loss plus vestibular loss plus blurry vision means the brain is really busy compensating.  Incidents like you describe can be pretty scary.  But there are some things we can do to mitigate the effects.  It sounds overly simplistic, but rest and hydration really are essential.  I upped my water intake, but needed to ask my doctor for help sleeping.  Reducing stressors is a daily challenge, but I'm making progress.  Check out the info in the other posts.  If I can answer any questions, please feel free to PM me.  Hang in there.  You're not alone.

Mary

[saccadiceye]

Basically, hearing loss plus vestibular loss plus blurry vision means the brain is really busy compensating.  Incidents like you describe can be pretty scary.  But there are some things we can do to mitigate the effects. 

Mary

Hi Mary,

How would you describe your blurry vision? I have something called saccadic-pursuit, which makes tracking movement objects and reading very difficult.

H

[Hokiegal]

Hi Saccadic, my eye was completely dry for almost a year after surgery.  When the tears returned, they were intermittent at first.  Now I rarely need drops at all.  But the tears do not drain out.  They just pool up in my eye, and I'm constantly wiping the them away.  So it's blurry looking through the tears.  I think the eye itself is ok, but we've never been able to get an accurate vision test on that eye.  As soon as I wipe the tears, they reappear.  Strange, huh?  I see a new opthomologist in a couple weeks, and I'm hoping it's just a plugged duct.  I can read, but the blurry vision is really disorienting.

I read a little about your condition, and it seems it may be related to loss of vestibular?  Is that your understanding.  I lost the vestibular and hearing on the AN side.  The more I learn about this stuff, the more it seems that vestibular is related to the other sensory functions in ways that aren't fully understood. 

[Carol72156]

I joined the forum 3 years ago to understand my mother's health issues related to NF2.  I wish I would've continued to check in from time to time --- I probably would've understood what was going on with her.  She passed away in 2012 at the age of 85 and had 3 surgeries total over the years.  Both of my sisters have NF2 and I'm surprised they don't participate in this forum.

When my Mom began having memory problems, it didn't seem as though it was related to an event.  Her last surgery was in 2005 and she didn't show signs of forgetfulness until 2008 or 2009.  What I thought was strange was that some days her mind was sharp as a tack and other days she didn't remember personal details about her children (for instance).  As I look back on it now, I believe the memory affected the most was long term memory --- that is, if I understand what short term memory actually is. 

I came back to the forum to learn about the hereditary component.  I am 57 --- never was tested but certainly if I had NF 2, it would've shown up by now - right?  However, my daughters who are both in their early 30's are experiencing health issues that could be related to NF 2.  My youngest daughter is experiencing horrible migraines that seem to be occurring more frequently and lasting longer each time.  My oldest daughter has back pain that she's seeking medical treatment for.  I think my older sister would like to see that my daughters get tested.  No matter what it is, I am urging them to do so.

As an aside, there's current research going on with Alzheimer's patients that involve music and memory.  Supposedly the researchers are having some kind of success with the treatment.  I just found out about this development so I don't know very much about it at all.  However, the psychologist I spoke with told me to google memory and music to get more information.

[ppearl214]

Hi Carol,

Good to see you again and welcome back.

So, is this a 2-part post? One portion related to NF2 and hereditary factors as the 2nd part related to cognitive issues for those with AN's/NF2?

If related to NF2, I invite you to post in our "NF2" discussion forum since the discussion would be focused on such.

If cognitive related (ie: in this case, question about memory), this would be a good forum.

What I can share is that I am also a volunteer for the Alzheimer's Association (locale). Long term memory for those with forms of dementia, including Alzheimer's, seems to remain intact. Short term memory is the issue. Music (and films!) therapy help to recapture moments that may have meaning to someone with dementia.  Plus, it also helps with agitation.

Again, good to see you again. If you do have an "NF2" question or are unsure where to post anything, just let me or any of the Moderators know. We are glad to help.

Phyl

I joined the forum 3 years ago to understand my mother's health issues related to NF2.  I wish I would've continued to check in from time to time --- I probably would've understood what was going on with her.  She passed away in 2012 at the age of 85 and had 3 surgeries total over the years.  Both of my sisters have NF2 and I'm surprised they don't participate in this forum.

When my Mom began having memory problems, it didn't seem as though it was related to an event.  Her last surgery was in 2005 and she didn't show signs of forgetfulness until 2008 or 2009.  What I thought was strange was that some days her mind was sharp as a tack and other days she didn't remember personal details about her children (for instance).  As I look back on it now, I believe the memory affected the most was long term memory --- that is, if I understand what short term memory actually is. 

I came back to the forum to learn about the hereditary component.  I am 57 --- never was tested but certainly if I had NF 2, it would've shown up by now - right?  However, my daughters who are both in their early 30's are experiencing health issues that could be related to NF 2.  My youngest daughter is experiencing horrible migraines that seem to be occurring more frequently and lasting longer each time.  My oldest daughter has back pain that she's seeking medical treatment for.  I think my older sister would like to see that my daughters get tested.  No matter what it is, I am urging them to do so.

As an aside, there's current research going on with Alzheimer's patients that involve music and memory.  Supposedly the researchers are having some kind of success with the treatment.  I just found out about this development so I don't know very much about it at all.  However, the psychologist I spoke with told me to google memory and music to get more information.