2 yr anniversary - memory problems

[Patc]

Hello everyone,

 

I’m coming up 2 years post brain bleed ( without cause) and after reading some of your posts, I feel pretty lucky that I’m not suffering from the daily headaches a lot of you are.  I do get what I call “fuzzy head” and I do have the occasional headaches, but they are quite minor.  That is one thing I never really suffered from, even during my one month hospital stay.  

 

One thing I would like to ask, is do any of you still have the memory problems?  I also have a difficult time retrieving words.  This is especially true when I am tired.  It drives me crazy.  When I mentioned this to my doctor, he just said that since I didn’t have a stroke, there were no brain cells damaged.  I say BS - I know I have difficulty with words, and my memory.  

 

I also have days were I am absolutely exhausted.  I work with children who have autism, and even though I only work part time, there are days where I hit a brick wall.  

Just curious to know if some of you still have these issues two years out

Thanks!

 

[Skippy]

7 hours ago, Patc said:

When I mentioned this to my doctor, he just said that since I didn’t have a stroke, there were no brain cells damaged.

Surprised that he said this as a brain hem is a stroke - by the very definition:-

https://en.wikipedia.org/wiki/Stroke

 

Maybe you should point this out to him next time you see him. I had damage to the brain due to my SAH and these can clearly be seen as white areas on my scan.

 

12 years in, I struggle with memory and the right words if I'm tired.  I know my memory isn't what it was, but then it was near on eidetic before my SAH and I very rarely forgot anything.  Now I know memory is probably 90% by comparison but to hubby and daughter they don't "see" a difference as they're memories are so bad anyway!!

 

I work in a very bust primary school office and there are never 5 mins to take a breath, so at the end of a day I'm normally shattered and I've usually hit the brick wall by Friday evening, which luckily means I have two days to recover and the school holidays to look forward to.

[Patc]

Thank you Skippy for this article.  I read it, but none of the recommendations have been applied in my case.  I am not on any kind of medication ( not even aspirin). I was on aspirin for a little while when I came home, but then my neurologist told me I could stop taking it.  My last MRI was  year ago, and no follow up was required, other than getting the results from the neurologist.

 

Seems like after care is very different, my doctor reassured me that I am at no greater risk than normal to have this reoccur.  He felt that this may have happened because of a congenital issue.  I find myself asking more questions now than I did when this first occurred.  My hubby is of no help, because he hates talking about it, and never really asked too many questions.  I need to make an appointment and get this all figured out because it’s driving me insane lol!

 

I focus on the fact that I feel pretty good, except for the fatigue and short term memory.  I just need to know that I’m not blowing things out of proportion.  This group has really helped, knowing that I am not the only one feeling this way.  Seems like the psychological effects of this happening is the biggest side effect of It all.   By the way, happy return to school ?

 

cheers,

Pat

[Skippy]

Hi Pat

 

My understanding re aspirin is that it's only suggested if your "stroke" was of the "clot" type rather than the "bleed" type. I was advised to avoid blood thinners as my "stroke" was a "bleed".  The point of the article is that it states that there are different types of "stroke" one of which is a bleed on the brain - so to say that you HAVE NOT had a stroke isn't strictly true and therefore surely damage can be caused.

 

2 years in I had no where near the stamina I have now - and I have to admit, I have had to push myself to get where I am now.  I work 37 hours a week and then come home and do some admin for my husband and often proof read artworks for him before they go back to his clients (these can sometimes be in various languages and range from cartons to leaflets).  

 

Time is a great healer and some need more of it than others - keeping hydrated is a massive aid to recovery, especially for the brain.

 

The psychological side is by far one of the biggest side effects I've had to deal with.  Your specialist is probably better equipped to help with your questions than your GP (General Practitioner - basically know a lot about a little).  Mine told me my aneurysm was 2cm!!!  It was 2mm - he'd looked at a scan and saw the clot around the aneurysm and assumed that was the actual aneurysm!!!  Luckily when I saw my specialist I asked him and he put me straight!!

 

You are definitely not alone - we have all been there and ended up with more questions than we started with.

 

Yes, first week back at school after the summer hols and it's sheer madness - but I love it 

 

 

[ClareM]

Hi Pat

 

I too echo what Sami says. I am 3 years post NASAH and still suffer memory problems. I have had in depth help from a neuro psychologist who has helped me no end with my recovery. She has pointed out that my memory is affected by fatigue and also by my mood. I experience low mood and this is worsened by fatigue which then leads to the memory problems being more pronounced. Bit of a viscious circle and it's hard to break the cycle.

 

I think fatigue is one of the most difficult legacies of a bleed, learning what your limits are and making sure you don't go beyond them. I am still learning now and have spent many a Friday evening totally floored by the week. And that's with a mid week recovery day off! 

 

My advice would be to step back a bit, very hard if  like me you were a 'full on' type person pre bleed. My neuro psych has told me that as my health is one of the most important things to me that I have to work towards 'good health' and that means being kind to my self and not pushing the boundaries. It's hard but I'm learning  

 

I think the psychological effects of a bleed can carry on for a long time post bleed, we are all looking for answers which sometimes no one can give us. My GP is hopeless too regarding advice, they just don't have the experience of dealing with our problems. A support group is a good idea which is why I have found BTG so helpful in my recovery.

 

Good luck, you'll get there eventually - but it takes time and perseverance by ourselves to accept and embrace the 'new normal'. I'm still working on it!

 

Clare xx

[Macca]

I am just eight years out and I still have memory problems. Names and proper nouns are a particular problem, especially when I am introduced to new people. It is worse when I am tired.

 

I find the best way to deal with it is to write names down at the first opportunity and then to repeat, repeat, and repeat, until they transfer into the long term memory which is less susceptible to failing.

 

Make sure you rest properly, recognise the signs of fatigue coming on - and carry a notebook and pen or make use of your notepad on your  cell phone!

 

Change is difficult to deal with because it is an abrupt change, but you have to persevere and find a way round it that works for you.  The above is what works for me.

 

I have to say my memory is nowhere near as bad now as it was just after SAH, but I still have my moments!

 

Good luck,

 

Macca

[Karen]

Pat, it may be worth your while to discuss with your Doc about having a range a blood tests to rule out any other underlying cause. I know from myself that I used to put everything down to the SAH, however it wasn't.

 

After a range of blood tests, I was found to be Calcium Vit D deficient and also Folate....both can cause problems with fatigue and memory.  I was put on to supplements.

 

I also hit pre-menopause, which also caused problems and menopause symptoms can actually mirror the SAH fall out. I would say, that go and see your physician and rule out what you can.

 

Over the latter years of running this site, I know that some people post SAH are now treated with Aspirin....I think that it depends on your own personal medical history and it's something that you need to check out as to the reason why. 

 

Good luck. xx

[Winb143]

Listen to others Pat,

 

When under pressure to get names correct I mess up !!  The other day I rang my Sister up and couldn't remember her daughters name and I called her thingy then explained about short term memory, she understood !!

 

I knew it but couldn't say it unless wrong lol. I was out approx. 1 year with hydrocephalus also which didn't help matter xxxx

 

We will all get there eventually so never give up xxx Good luck xxxx

[SarahLS]

As someone who was also known for their memory and is now struggling with that and some language problems can I ask if or what help you got with these issues Skippy? So far everyone I've seen says that I seem to be fine but both me and my husband can see a huge difference even if to everyone else I seem to just be just like them. 

 

I have definitely found that fatigue and not drinking enough do really have an influence on my memory and ability to find the right words but I am finding it hard convincing people that there is a problem. I realise that I am only 9 months into recovery so it is still early days but it is only when I see people who I haven't seen since the SAH and who know me well that I feel that my issues are seen. Of course I've only seen people like the neurologist and occupational health since the SAH so they think I'm fine...

[Skippy]

20 hours ago, SarahLS said:

As someone who was also known for their memory and is now struggling with that and some language problems can I ask if or what help you got with these issues Skippy?

Hi there

No help from outside sources - I just kept my brain active doing crossword puzzles and word searches etc.  Try Brain Games and memory games - I like to think that doing all of this helped my brain to "rewire" itself.  Only today my colleague was amazed at my memory as this afternoon I'd remembered a pupil was off today just from glancing at a report this morning.

 

At 9 months my memory was still a big problem for me - but only to me, as it was far better than those I worked with at the time and was probably still better than their's after my SAH .

 

Time is a great healer (also a cliche but true).  Don't beat yourself up because your memory is not what it was.  The more my brain worked on things, the better my memory became.  Don't get me wrong, I still forget things or forget someone telling me something.

[SarahLS]

Thanks so much for this reassurance Skippy, you are right and it is getting better, I am playing online memory and other brain games so it is nice to know that they are probably helping and not just passing the time. It is just the way everyone else seems to think my memory etc are fine but I know how far from true this is - getting that message across is hard!

 

More sleep and plenty of water while gently testing myself is the way forward,

 

again thanks for replying

[ClareM]

Hi Sarah

 

I know exactly how you feel. So many people say to me that they think my memory is fine. It may be fine to them but to me it's not a patch on what it was. And it's not everything,  it's more my 'attentional' memory. If I'm not paying really good attention its' gone until I receive a verbal or visual reminder and that's not a definite either. Earlier this evening I said to my husband I needed some parmesan on my pasta - he reminded me I'd put it on not more than 5 mins previously ..............

 

And it is frustrating when other people say you are fine when you know you are far from. I think that is one of the hardest things post SAH which only we who have suffered understand. Keep coming to BTG, we understand!

 

All I can say is the more you repeat things the more they 'stick' in the memory. Repetition is my best friend and hopefully will become yours too  

 

Clare xx

[Super Mario]

Hi Sarah, as Clare says repetition is a way of making things stick in your memory.

My hubby often thinks I am crazy because I walk about repeating things over and over but it does help.

Notebooks and sticky notes are the norm for me as well. 

[SarahLS]

 

Super Mario & Clare, My main issues at the moment are trying to remember things I need to do whilst completing another task, I guess this is short term memory... I've always been useless at putting names to faces and I finally have an excuse for this! I can also remember and 'see' the words/ideas I am trying to explain but the wrong words are coming out. This is often brushed off as a joke (by me too in order that people don't see how upset I am) and after the event I can see the humour but it is so different for me.

 

Everyone was in stitches in a meeting when I talked about the Penguins nesting on the cathedral spire...I couldn't see what the problem was, as I was convinced I'd said peregrines. Now I can smile but at the time it was horrid. 

Here's hoping the brain keeps healing, or I develop a thicker skin. I travel,everywhere with a notebook now and my note taking skills are getting bettering! #silverlinings

 

Have a good weekend all 

[Patc]

I know exactly what you all mean when you say how frustrating it is when everyone around you say you are fine.  

They say that there is nothing wrong with your memory, or that they always forget stuff too.  “It’s a sign of getting older” is another favourite saying.  I know that this is something different, more than just getting older (I’m only 59 for Pete’s sake!!!).  

 

Thank you so much for all your suggestions, and your coping strategies.  

 

At this time the only medical advice I would receive would be from my GP since I have not been under my neurologist’s care for over a year.  I would need another referral, and that may take forever to see him.  Furthermore, even though my specialist was quite respected in his field, he  had absolutely no people skills.  My follow ups would be a total of 5 min max.  He would be ushering us out of his office, as I was still trying to ask him questions.  I doubt he would be of any help.  

 

Not sure if anybody else is this way, but I feel that I’m wanting to know more details now, than I did at the onset of this journey.  

I haven’t made an appt yet with my doctor, but I think that is where I need to start to see what my options are with regards to some counselling. 

 

BTG is an enormous source of support and understanding.  Thank you!

[Skippy]

Hey Pat

 

Could your GP give you contact details for the Neuro Nurses at the hospital where you were treated and maybe put in a call to them to let them know you want to ask a few questions?  I wasn't treated at the hospital where I live and have no idea if there's a Neuro Nurse or not to be honest - but its worth a try. You don't know til you ask - good luck x

[Patc]

Thanks Skippy for that suggestion?. Much appreciated !

 

On a brighter note, today I worked with a little fellow in his preschool class.  I loved being back in the classroom!  It was the first time in almost two years that I have been back.  When I returned to the classroom 6 mos into my recovery, I wasn’t ready.  I had to make a decision as to whether I would continue in the class or leave my career.  I decided to leave the class, and become a private Support Worker.

 

Today’s work in the classroom showed me how far I have come in my recovery.  I was able to stay in the class for the whole 2.5 hrs, without having to go to the “washroom” for quiet time. Lol!!!!  I did need a bit of a rest afterwards, but all in all it was fantastic.  Sure miss the classroom environment.  Mind you, this is my first time ....I’ll let you know how I feel after a few months!

I will only be in the classroom 1x a week, for 2.5 hrs.  Perfect!!!

 

Cheers

Pat