Introduction from a newbie SAH survivor from the UK

[Super Mario]

Julian, you appear to be doing the correct thing and listening to your body. That will all aid your recovery. Keep up the good work.

It is also good to hear positive posts which can only help other survivors who find us.

[Teechur]

Thanks Julian. About a week ago he had another stroke behind his left eye and lost most of his sight in that eye. They have no idea why it's happening. He doesn't have high blood pressure and there are no aneurisms. I think he needs better doctors. He's seeing one of the same ones I see just for Botox treatments. I think he needs a neurologist who is more up to date, and I think I've finally convinced him of that as well.

[julianc]

Long time no write folks...  Its been busy.  Flights, holiday, DVLA (UK driving licence people), new job offer.... blah blah blah blah blah.

 

So, from a very very lucky NASAH member here is an update on day 80.

 

Did a transatlantic flight in economy which went by peacefully, well as peacefully as a 4 year old and wriggly 2 year old will let it pass.

No daytime sleeps

No earlier than anyone nights

No headaches (just a tingle suggesting one might come but it doesn't/hasn't)

No sudden tiredness

No ill effects after alcohold (YAAAAY!)

 

However no driving licence either.  It seems the DVLA believes everyone who has had one of these needs to take 6 month sabbatical from driving.  Obviously I am contesting it and think that they will relent in the face of overwhelming evidence.

 

Ho hum, musn't grumble too much, I have been too lucky to start thinking I have been hard done by.

 

So folks, I think my contributions to this board are drawing to an end as I feel irrelevant to what the majority of people go through with this condition.  I will periodically check in (perhaps someone has the contact details of a lawyer who can change the DVLA's mind) but if I can help anyone then please let me know and I will do what I can.  You have all been superb and supportive in helping me understand what could happen and I wish the very very very very best of luck and good health in the future.  Anyone visiting the Buckinghamshire area of the United Kingdom and want to meet up (perhaps feel the bump on my head to confirm my identity) then I would love to meet up for a coffee.

 

All the best, always

 

Jules

[Skippy]

Good luck and all the best Jules x

[Carolynusa]

Jules - best of luck with everything you do here on out.  Glad you feel so much better and feel like you can move on.  Stop in and just say "hi" once in a while if you get a chance.

 

Love, Carolynusa

[Daffodil]

Julian, fab news about transatlantic flight, brave with the two under five let alone so soon after bleed, well done.

I think your contributions and posts have been very relevant and I am glad you are doing so well , it sounds very promising. Feel free to drop into BTG from time to time as your continuing recovery experience will only give encouragement to others.

[julianc]

Dear All

 

Just a quick hello from a former contributor who is still doing extremely well.

 

Its been 7.5 months or so and barring the very occasional sensation that a headache is going to set in I have gotten off relatively free of any long term issues as far as we can tell.

 

Hope you are all well and getting better.

 

Jules

[Tina]

Really good to hear you are doing so well Jules   Thank you for letting us know and  sharing your positive news .

Take care.

[Winb143]

Life after SAH is always good to hear Jules.

 

You keep well and laugh off the bad head days if possible xx

 

Nice to hear from you.

 

WinB143 x

[ClareM]

Hi Julian

 

Just a quick question. Do you have any problems with your short term memory? You and I had similar events, I am 4 months post bleed and am still forgetting things. 

Congratulations on your recovery though!

 

Clare

[julianc]

Hi Julian

 

Just a quick question. Do you have any problems with your short term memory? You and I had similar events, I am 4 months post bleed and am still forgetting things. 

Congratulations on your recovery though!

 

Clare

 

Wrong person to ask I am afraid, my memory was so notoriously bad that the difference between pre and post bleed is barely noticeable.  My wife claims she can see a minor minor deterioration... I think its just that I have no need to wrack my mind or pretend to have a vague recollection so as not to be labelled as forgetful or not caring sufficiently about things so as to remember them.

 

Hey I found a benefit to having a SAH.  No need to apologise for forgetting something!

 

But no, I have suffered little or no memory loss.

[kpaggett]

After Tina's first comment, it reminded me that the only information that anyone gave to me personally from the hospital was a brochure entitled 'Sex after Stroke'.  It is crazy what they think we want to know, and what they don't have a clue about.  AND...did I have a stroke?...no one told me that SAH is classified under stroke, so this was a terrible blow to me.  What an insensitive pamphlet.

 

You'll find so many tips and answers here to anything that comes up.  Just throw it out and you'll get a response from someone with that exact experience!

 

Take Care,

~Kris

[julianc]

Yup, I do think that most hospitals could really do with improving their communication vis a vis their SAH patients.

 

In this case they kind of over communicated after under communicating.  Well done them.

 

Hospitals should just point patients to this site.  Maybe we should get stickers with the address printed and stick them around the various wards in neurosurgery hospitals.

 

On a more personal and positive note, the DVLA finally got back to me and confirmed I could drive. They actually wrote the letter the day before we went on holiday to Turkey but due to their predilection for the snail mail paper form I never saw it so could not share the burden with my wife.  I actually wrote an email asking them to just send me a quick little non-explicit email from even a personal account saying "Yes you can Julian" but alas the response is probably awaiting being typed up, stuck in an envelope, handed to a courier pigeon etc etc etc.  Just the bitter and twisted rantings of ........

 

So, anyway. The machine and the brain handle the roads just like before.  Phew.

[Greg 21.01.15]

Hi Julian

 

Just a quick question. Do you have any problems with your short term memory? You and I had similar events, I am 4 months post bleed and am still forgetting things. 

Congratulations on your recovery though!

 

Clare

HI Claire

 

Just saw your message to Julian.  I had the same kind of event as you both and I'm having some problems with short term memory. It wasn't great pre-SAH but it has got worse. For example today my mother in law rang up, and I had to admit to my wife when she got home that I'd forgotten the main point of her call. Partly as it wasn't earth shatteringly important so I didn't think to write it down.......

 

I'm trying to do a fair amount of reading of scientific papers to help with prep for returning to work (whenever that might be) and as part of that I have to try to recall what I have just read, it isn't great I can tell you. I think I will need to be employing a few coping strategies there.

 

Along with short term memory I have a small and some what amusing tendency now not to remember words, for example in a Sandwich shop the other day I wanted to say no cucumber, but for the life of me, all I could come up with was I don't want that green stuff and pointed!

 

You got to laugh at times, as said above we now have an excuse! 

 

greg.

[ClareM]

Hi Greg and anyone else reading

 

I do still have memory problems, I hope they are going to get better but if not well hey ho at least I survived! I have found recently that I get lost in sentences. I start to talk about something then half way through forget what I am talking about! Ok if with my family but a bit annoying if at work. I can usually recall what the topic was after a while or sooner if prompted. The most annoying thing is people saying - 'Oh I do that all the time'. Yes they may do it all the time but I didn't before my SAH and its darned frustrating!

 

The times that my memory is worst is when I have had a drink! I was always fairly bad before the bleed but now give me 2 wines and I will become a total amnesiac! I have to ask my husband or friends what I said or did, luckily so far nothing too bad. I also have to check my phone as I often find messages I have no recollection of sending until I see them!

 

Got to laugh! Or smile!   

 

Clare xx

[janey]

Hi Clare,

 

I think we had our bleed at pretty much the same time - may have even been the same day, Feb 10th? Just to say that I'm having similar memory issues to you. I very often can't think of a word mid way through a sentence and also sometimes have a sort of mini stutter - usually is worse if I have overdone it and feel a bit tired. Also short term memory not that great, although like Julian it wasn't that brilliant before my SAH.

 

I know I should write things down more often but whether it's stubborness or a sort of refusal to accept that I need to do that, I don't know, but I am getting a bit better at finding coping strategies. I have a weekly planner and write down all the things I need to do as I remember them and that's proved very helpful, especially as we're going on holiday shortly.

 

Know what you mean about the wine - the plus side is that a little goes a long way now!

 

At least we're all still here!

 

Janey xx

[ClareM]

Hi Janey, yes almost same day mine was 9th Feb in the eve but wasn't treated until early hours of the 10th. We will have to have a joint anniversary next year!! At least we will be cheap dates!! Lol.

Our memory problems sound very similar which I find reassuring! At least it's not just old age!

I have lists everywhere and use my phone a lot for notes , it does help, if I can remember I made the note!

Clare xx

[Sharlua]

Hi Clare & Janey
I am exactly the same I start a sentence and then the essence of what I want to say just drifts, can be embarrassing! I also have some definite short term memory issues getting out in the morning to work is an exercise in itself as I have to go back so many times for things I forget. I do get frustrated but thankful that I have come off so lightly.

 

Everything takes a bit longer but I laughed yesterday when I got in car to go to work and glanced at feet to see odd shoes on - would have looked good at my meeting.

May have to follow your idea of lists, I leave notes for my mother who has Alzheimer's every day perhaps I need one myself!

Sharon x

[julianc]

1 year, 6 and a half months roughly since my bleed and I thought I would update the board members on my progress.

1) Headaches :
are rare but I do get a weekly or biweekly feeling of uncomfortable pressure building up.  Paracetamol seems to reduce it for that time but if I feel its a bit more than usual I take some of the tramadol I have left over.  Sometimes there is a probable cause for these uncomfortable feelings... see next

2) Discomfort due to loud intense prolonged high pitched noises :
courtesy of my two daughters and the house which has ****** all in terms of soft furnishings to absorb secondary and tertiary echoes, cause me discomfort requiring me to take a nap.  My wife originally attributed my discomfort and tiredness to staying up late on occasions but when I stay up late, drive for an hour to the airport, catch a 6:30am flight, attend business meetings all day long and sometimes into the evening I do not suffer at all.

I have repeated this test on multiple occasions so I fairly sure of my conclusion.  My consultant who I saw a week ago also confirmed that loud noises and even bright lights can cause this.  Seems I fall into the noise sensitive crew.  Oh and earbuds or hearing protectors certainly help.
 
3) Memory :
as I am the one with a potentially impaired memory I realise I cannot be a reliable witness (at least my logic circuitry is intact).  My family believes I have been affected but they also can be susceptible to what I think psychologists call 'fundamental attribution error'.  http://www.psychwiki.com/wiki/The_Fundamental_Attribution_Error .  Basically since they know I had a NASAH they might attribute any action of mine to this condition. e.g. he can't find his keys, aha must be the NASAH.  hmm he doesn't remember the conversation from 2 weeks ago, aha must be the NASAH.  Everyone openly admits (including me) that my memory pre NASAH was less than stellar and these sorts of lapses were not uncommon then.

On the positive side, I don't have to bluff my way out as a NASAH is a stellar excuse and the family just accept my forgetfulness (whether NASAH or natural) as just the way it is.  Downside, anyone could claim I agreed to something that I didn't actually agree to.  I now reinforce my previous tactic of saying 'send me a text' or 'send me a calendar grab' in order to have a written trail to follow.  Not quite like the film Memento but you get my drift I hope.
 
4) Concentration or Multitasking :
As a male I am not naturally inclined to multitask (joke, so please stand down everyone) but I have noticed that if I try to split my attention between two competing activities I think I fail more frequently than previously.  Case in point, I regularly have conversations with my mother on the phone, and as I am easily distracted by something else rather than the subject of her conversation I can easily not take in or forget the entire purpose or outcome of the conversation.

Again I employ a coping method to track these conversations using a call recording app on my android phone.  iPhone/iOS users need to either jailbreak their phone and install an non certified app or use a 3rd party call dialling service to do this as Apple do not allow it.  And why should Apple allow call recording some ask as hey, its only been a standard feature on mobile phones since at least my first nokia phone back in 1995?  pah!
 
5) Personality :
no one has reported any difference in my post NASAH self from my pre NASAH self.  Or they are too scared of the violent response to such an offensive accusation, again a joke so please don't be afraid.
 
So, in summary I got can again confirm I got off pretty lightly and through the use of coping mechanisms I get by without too much difficulty or impairment.  Hope everyone else's journey can be assisted by my experience.  In hindsight it might have been better to create a new topic for this post, but I guess I forgot... see easy to explain and excuse!

[Chris G]

3 & 4 are very familiar.  I too cannot really know if my memory is worse, as it was never good.  And how do you remember how well you used to remember if you can't remember as well?  But I too use the "brain damaged" excuse often if I forget something.

 

And I am often involved in a conversation only to suddenly realize I have no idea what the other person is talking about.  I just drift off into other thoughts.  But maybe its just a boring conversation?

[julianc]

"Boring conversation" Broncothor?

You've met my mum then?

[Chris G]

oh no.  I was talking about the conversations I have where I drift off.  Not yours.

[Winb143]

Hi Jules,

 

Good to hear from you.

 

I know my memory isn't what it used to be but it is getting better as for headaches I find (in my case) stress and rows make my head feel worse along with the noises.

 

Some are really good days others are not so good.  You seem to be coming on well apart from the headaches. 

 

I know I mentioned it last time you was on,  but stress effects the head and life is full of stress so hope you can keep stress away  and perhaps the noises will subside also.  Good Luck and keep happy when possible it really helps or maybe a smile ? 

 

Win xx xx Keep in touch xx xx  Note : I had a day without noise and a whole day of no headaches it was Beautiful x

[kpaggett]

Julian,

 

I had what the doctors called a diffuse SAH confined mostly to the perimesensephalic region.  They all told me I'd me I'd be fine.  It took me 3 years, but now feel fine most of the time.  However, there are still occasions when it is obvious that I am not my normal self even though anyone would consider me 'normal'.

 

For example, I used to play my husband at chess and other games of strategy and win every single time.  Now, he mostly wins and I only do occasionally.  Does this impact my life?  No, but it is a reminder that my brain isn't as analytical as it once was.  I get distracted easily, yet I am aware of it and it humors me as I don't have any control over it.  I am more impulsive and am truly grateful that my husband keeps the books now.  I can do the math, but the stress...  

 

Things stress me out easier and I am more sensitive to stuff and feel emotions deeply where as before they were controlled and intellectualized.  What I have found here is that everyone is working on recovering in a different way.  I don't need extra water AT ALL, for example, yet many do.  Each of us learns to listen to the signs our body/brain but not mind tell us and this takes time and fine tuning.

 

At some point, you get into a rhythm you never knew existed within yourself and it is a REALLY good place.  If I had a do over, I'd take the SAH again, it has sought me so much about myself, suffering in general, and giving support to others in need.

 

Good luck on your recovery road!

~Kris

[julianc]

1016 day update (or 2 years, 9 months, 12 days update)

Been away a long time folks but I still remember you and wanted to appraise you of my situation.  I hope I did the right thing in posting it here rather than creating a new thread.

Anyway, it is coming up to the 3 year anniversary and for those interested here is the situation:

 

1) Headaches/occasional tiredness :
Pretty much completely gone.  Sometimes there is a slight feeling of pressure/discomfort brewing, at most every couple of months, but after 2 paracetamol everything goes back to being fine.  Still susceptible to the loud piercing noises of the two little ones but they have matured and so eased off and my coping mechanism is an LG Infinim Bluetooth headset that sits around my neck all the time and when I need silence/peace, or to answer the phone, I just pop the earbuds in and it takes the edge off enough that I don't need to retire to somewhere dark and quiet.  Once in a rare while I know I need to retire for the evening much earlier than usual, but it is incredibly rare these days, maybe twice in the last 12 months.

 
3) Memory :
Can't remember.  Joking aside.  Pretty much as before IMHO but, as I wrote previously, it wasn't much good pre NASAH.  NASAH is still a stellar excuse for forgetting stuff.  I did a neurological test at the John Radcliffe hospital a while back.  Some strange outlying less than stellar scores in some of the tests that the neurologist explained were inconsistent with a generally excellent, well above average score and that were more likely to be attributable to a form of ADD which certainly explains a lot in my life.  Overall mental processing was not noticeably deficient based on lifestyle/job/educational achievement (the only measurements that they had from pre NASAH me), in fact it confirmed what I already believed, I am smart (ass?) and have the paperwork to prove it.  

 
4) Concentration or Multitasking :
Think I am handling it better and better through a choice of coping mechanisms and focus.  2 little ones vying for individual attention whilst I am trying to do something else does affect me more than others perhaps, definitely more than my wife who does it much better.

 
5) Personality :
Still the funny, pedantic, nerdy and occasionally rule breaking PITA that I was before.  Not lost any friends since, not recruited a disproportionately large number either.

 

Overall, I cannot complain at all and fully, regularly, acknowledge that I was/am one of the lucky ones.

 

I wish everyone's journey was as positive as mine but for those who are still persevering I wish you all the strength and support you could ever need.