How common is a memory issues with Chiari?

[kricklekrin]

Last Sunday I woke up and went about my morning, and suddenly looked at the clock and realized I missed church.  The night before, I was thinking about what to wear and the meeting after church I was suppose to attend.  

Is this just normal aging, or could this be related to Chiari?

I can be telling someone a story and suddenly stop because I can't remember what I was talking about.  The person I'm talking to has to redirect me.  It's very uncomfortable.

My son had an ortho appointment and I had to pull over because I forgot how to get there.  My son had to tell me where to go and it was just down the street.  He thought I was playing games with him, but I really lost my sense of direction.  

Face and name recognition was a problem for me at one point as well.  This all seems to come and go and does seem to have gotten better and then the forgetting church thing happened.  

HOW MANY OTHERS HAVE THIS PROBLEM AND DOES IT GO AWAY OR IS THIS A PERMANANT SYPMTOM OF CHIARI?

[selmaS]

  Hi and welcome to the Chiari forum.

May I ask, were ALL related conditions ruled out b4 your surgery? It is possible to have a related condition which could be adding to your issues/symptoms.

What do you mean "I still can't fully extend my neck back"...did you and do you continue to do exercises for your neck?

Also , if you have Ehlers-Danlos it can take longer for your surgery site to heal....I had my surgery in "09 and at times it can feel sore or sensitive...more so on rainy days.....so I do understand  how it can be and we expect with time for it all to go away....but some things tend to linger with Chiari , EDS, and  the many other related conditions we can have ...so it is not easy to know what is going on or when we should begin to feel better.....

Hang in there you are not alone....

[selmaS]

  Hi and welcome to the Chiari forum.

May I ask why you required the 2nd decompression?
Also, do you have any related conditions to Chiari?

And last how long since your surgeries?

[lexiefidas]

Hello, Im a 20 year old one time decompression with significant memory loss. Many of the time I thought it was because I was going crazy, I brought it up to my neurosurgeon and she too told me it was unrelated to my chiari. Many of the times in school I study 10 times harder than my peers to be able to succeed, it is so emotionally draining. I also struggle with anxiety and depression which I've read can be strongly linked to chiari. Its been 3 years since my surgery and I still can't fully extend my neck back and my surgery site is still very painful. Dealing with Chiari has been so difficult for me since I was 16

[Daysea10]

2 decompression and severe memory loss.

[selmaS]

  Hi and welcome to the Chiari forum

Thank you for  advocating for your wife and sharing a spouses view point.

Chiari symptoms can cycle and flare so we can have long periods of feeling well or unwell....the searching for words can be difficult....my husband knows I have issues but every once in a while makes the comment  " I love how you use strange words for things" I will say thingy or whatamacallit when I can not fnd the correct word, and it can hurt when someone you know and should understand makes a big deal out of something we already find embarrassing and difficult. Just understand and give room for mistakes we all make them and sometimes we know we are wrong and can  not find the correct words while other times we may not be aware of it at all.....

Has you wife had the surgery? If so, how long ago. What meds is she on

[scummins1964]

As a spouse of someone who suffers from Chari it can be heart breaking to see how this condition has changed the life of a once mentally sharp, multi-tasking mother of four. I feel bad for her when I have to finish sentences for her or fill in the word that she was looking for. It thought often that it could be the meds, but she has good days and not so good days and the meds stay the same.

[ChiariWolf]

Yes, memory is an.... Oh look at the petty butterfly... Now what we're talking about?

CW PS- some DRs are real people others just folks that have a piece of recycled firewood hanging on the wall that says they made it through school. Big Deal.... Some still don't have a clue when it comes to CM. An Engineer friend of mine told me one time, speaking of a fellow engineer, 'you just can't expect a man to understand what he just doesn't know' - So very true!

CW

[AKC_75]

I have bad memory issues too! Everything that has already been said, I can relate too.

But one thing that aggrevates the pee-waddle out of me is when THE OTHER PERSON is wrong! And they try to pull this "now your memory..." and I KNOW I am right!!!

Very frustrating cause I feel taken advantage.

[selmaS]

   Hi the member u r replying to has not posted since 2011....u may want to send her a PM (private message) which will generate an e-mail informing her someone is trying to make contact.

U can also create a new thread on this topic to get the currently active members to participate.

I agree with u it is very frustrating when a Dr tells us symptoms we all have do not have nething to do with our condition or recovery.

[gavinsmomm87]

I have the same problems. I'm so frustrated. I went for my post-op and my ns told me that memory issues doesn't come from Chiari. BS! We all have it... I'm just so frustrated...

[selmaS]

  Thanks : )

[ChiariWolf]

:-) that has to make you so very happy. I'm happy for you.

[selmaS]

  I was getting worried as it has been a while.....

Did I tell u DD moved back home....back in PA, her and her DH bought a home 5 mins from mine....I have no words to describe how happy I am.

Praying for u and ur family.

sis

[ChiariWolf]

Adjusting sis; but ok.

[selmaS]

  Hey CW.....glad to see a post from u.....u have been on my mind.....

Wondering how u were doing....

[ChiariWolf]

The good thing is- we can watch the same movie multiple times and still enjoy the movie!

A year ago I had the 'chairi mesh' or titanium mesh put in. Since then many CM related problems have gotten better. Memory issues, not gone but much better. In fact I'd say my memory issues at this point are most likely more closely related to stress and aging than CM.

CW

[Toyahenderson]

I'm 29 and this is comforting to know! I actuAllyy started to do research on if chiari effects memory loss! I can see it does. I'm in the health field and that's not a field you want to forget anything in. I don't remember what I had to eat the day before. Simple words seem to escape my empty mind!

[smcondition]

Isn't it funny that we have no problem remembering thingy or whatchamacallit or you know what i mean? I have memory problems to but did not know that this could cause it, have done most things listed, forgot why i am yelling at kids, had a fight with husband but could not remember why, (this is a good thing) don't know from day to day what I told the kids there chores were so ended up writing them down, but for my experience I can remember long term but not short term.

[n40066]

LOL!  welcome to the wonderful world of chiari, my friend!  there is neither rhyme nor reason to the mystery of its world.  but the good part of having memory issues, is that we tend not to always remember just how many mistakes we make!  lol!

[emza1910]

kricklekrin

im no idea wat seizure i have - the docs best answer is non elipetic.. and tryin to say they in me head n due to havin my daughter, and depression n all kinds of bull. im not on any meds for them and have them often - anythin really can bring on one. my seizures started in labour with my first daughter nearly 6yrs ago now n still no proper answer.

headache - is and has been back of head towards bottom, my eyes n me neck and tops of shoulders too. when it first started a few sundays ago - the pain seemed to  go after like 6 hours but left me with a weird feel that i cant really explain, nex day me pain was back and well hasnt gone, gets worse n does slightly easy from time to time - i also get pain in both temples too when its really bad. i cant bend my neck back either as that jus kills it. ive started sleepin with no pillows. and ive noticed since this started me back has started playin up too.  when the suns out its too bright for me i hav to stay in with the curtains closed. jus feels like me heads bein squashed n its guna explode. like me heads too heavy for me neck kinda.

thanx for the info on the oil im guna google it now.  

[kricklekrin]

Can I ask what kind of seizures you have?  I have temporal lobe spikes and waves on my EEG's, but we have been unable to capture a true seizure on EEG.  

Flax see oil has been around for a long time.   It comes in a liquid or gel cap and seeds that you can grind up.  I grind them up and put them in my kids smoothies.  It's an all around great brain food.  

I take flax gel caps every day.  You can put the liquid on salads and other food.  

What kind of headaches do you get?  At the back of head or general migraines?  I used fever few when I was getting migraines.  I get a different kind of headache now.  At the base of my head and it comes and goes light streaks of lightning.  Almost like being stabbed with an arrow.  I also get sharp pains behind my eyes.  

O don't know what to take for this.  I endure and pray it goes away.  Tylenol helps a little, but it takes a while.  

google flax seed oil and you will see a lot of info that may be helpful to you.  

Good luck and I pray you feel better.

[emza1910]

kricklekrin - jus saw your last post about you take flax oil n hav had less seizures? do share more please. pm me if ya like. i too hav seizures very regularly - very long can com n go through out the days too and can be very bed. i was jus curious as ive not heard of this oil before. and well anythin if its guna help. and well any tips on headaches too - co codamol or tramadol dont seem to do anythin. the pains been era for like 4weeks now. i feel like i wanna crewl under a rock.. and i need to be carefull as anythin can bring on a seizure especially if im not feelin too good.  

thanx emz

[kricklekrin]

This is bothersome.  Yes, it does make sense.  Did you have surgery?  

I will say that since I've been taking Flax oil I notice a difference in the frequency of memory issues.  It was worse before the Flax oil.  If you try this, make sure it's a quality product from a natural health food store.  

Now if I could just find a product that helps me put my words together correctly:)

Oh, since taking flax oil, I've had less seizures.  When I do have them, they are very week or short lived.  

If anyone has helpful healthy alternatives to alleviating symptoms, please share.  I'm one of those anti-medication people.  When the side affect are worse than the symptoms, why take it?

[AJ29349]

I also have short term memory, but my biggest issue is doing something special yesterday, but it seems like it was a year ago today.  Does that make sense?  For example my family and I went to the beach in July.  However, today it seems like that was years ago.  I feel like I am living in a bubble...a state of fog and just passing through life without really soaking it in.  That is so bothersome to me.  

[LisaM46]

Oh, thank you all for the giggles!  When I was making my list of symptoms for the NS, I recited it to my husband, and asked him what other symptoms I have.  He quickly noted that I'd forgotten to mention FORGETFULNESS!  Oh, yeah, THAT ONE!  (As mentioned, it's mostly just short-term memory.  I have a feeling my kids starting to look at this as a bit of a "gift" and may be testing the waters on abusing it a little bit...)

I too, put the wrong word in a sentence here & there.  I do it when speaking, and in typing, but, with typing, I can correct it before printing or sending.  Wouldn't it be great if we could preview & correct with speaking too?  When I do it out loud, I'm unaware of it, because, like ChiariWolf said - in my mind I said it correctly.  Someone has to either call me out on it & correct me, or I get a strange look... you know "that look"!  Like a couple weeks ago, in conversation, I mentioned something about Huntington Beach, and the person corrected me and said "That's actually Huntington Beach right there".  Well, yeah, I KNOW it's Huntington Beach, and in my head I SAID "HUNTINGTON BEACH", really!  What else would ANYONE call Huntington Beach?!  I was embarrassed, and let it go, but - I have NO IDEA what I called it.  

Oh well, the people who know me and care about me understand.  It's definitely gotten worse in the last month.  I'm 46, can I call it early alzheimers?  (Time to proof before hitting "send"...)

Lisa

[Iveforgot]

I too have the memory problems you discuss. I cant name furniture in the house so I call it the colour it is. For example, ' the hair brush is on the white thing ' in fairness I could do with each item being a different colour from the next hahaha. I get lost because can't remember how to get somewhere, I was telling my step Dad that the kids were scared because of a ' wesp ' of course I meant wasp hahahahaha. I forget what I was going to do, say etc all the time or get it all mixed up. What I do know is that Chairi causes unbelievable fatigue for me and if you feel like that, everything is a million times worse. So sleep people sleep and rest. Hugs to you all, if I remember to hug you that is hahaha x