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julianc

Introduction from a newbie SAH survivor from the UK

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Good for you Julian,

 

Glad you have kept in touch as it gives us hope that we can do it xx

 

Never overdo it and keep in touch, and remember the smile xx   

 

Regards

Win xxxx

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Thank you Win.  Rest assured that the nerdy part helps the absent minded part so I have a recurring calendar entry for the anniversary of the NASAH.  That way I will be reminded to be grateful and to share my progress with those who really understand what this is like.  Speaking of smiles, I am investing some time, effort and cash into bringing it to peak performance and whiteness.  Shades are advised.

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Hello again everyone, back again around the anniversary of my NASAH, Non aneurysmal (Perimesencephalic) subarachnoid haemorrhage.  Mostly good, practically 100%.

 

The heightened sensitivity to high pitch noises persists but far less than before.
Fewer and fewer headaches or warning of them.
Stress is definitely a factor, for sure.

Hope everyone else's journey carries on bringing more and more positive things.

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Hello Julian, and many thanks for getting in touch four years post your bleed.

Great to hear that you continue to do well.

Best wishes for you and your family .

 

 

Subs

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Hi Julian 

 

Happy NASAH Anniversary :)

Great to hear all mostly good, practically 100%

Wishing you well with your on going recovery.

 

Take care

Tina xx

 

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Hello Julian loved reading your posts.  My husband is now 13 months post PASAH and doing well although we recently went to the pictures again and he said that the loudness bright lights triggered headache and also fatigue.  Therefore I’ve read your posts out to him and he realises that he also has been a very luck man also.  

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Dear All

Thank you for taking the time to respond to my updates.  I honestly thought that they would just be a long term, sparse journal for me to look back on and remember my journey.  I am delighted that some of you have found them useful.  I am honoured.  Honestly.

 

Thought I would add a very recent incident that occurred and provided a clear example of how some noises (at least in my case) can be a trigger even for us 'lucky ones'.

It was at my youngest's birthday party.  20 or so children in a school hall, with an adjoining hall where a gymnastics team had set up some apparatus to entertain and exercise the children.  I set up tables, set the tables, served food, made tea and coffee, entertained some children, cuddled my babies (they are 6 and 8 but still my babies), sorted out a connectivity issue to allow music streaming to a loaned Alexa device, all extremely good, lets party!!!

UNTIL LUNCHTIME!

 

When they sat down to eat each of the children found a foil blowout in their lunchbox.  Foil blowout is the term for those raspberry blowing things that unfurl as you blow through them, curl back again when you stop, repeat as desired. The upshot was that a couple of dozen children honking on these things sent my brain into a minor meltdown.

I didn't fall over or pass out, but my mood definitely changed for the worse.  I was no longer happy, I was edgy, my mind was a bit clouded and I no longer found it at all a happy occasion.  Nonetheless it was subtle and not particularly debilitating, I tidied up, packed away tables, swept the floor, but I was just desiring for it to all end.  When I got home, I did a couple of pc based work, then after an hour, got into bed and went to sleep... 4pm.

NOTE TO ALL POST NASAH SELFS...  BEWARE FOIL BLOWOUTS AND OTHER NOISEMAKERS AND ALWAYS ALWAYS HAVE EARBUDS OR EARPLUGS WITH YOU... ALWAYS.

NO Foil blowout.jpg

EARBUDS.jpg

EARPLUGS.jpg

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Makes note never get around children and foil hooty tooties /blowouts :~  Julians advice. 

 

Bet the kids loved them but poor you..Still it could have been worse I could have sung a song lol. 

 

Good to hear from you Julian and apart from the blow outs all is well with you xx hasn't that year passed quickly !!!

 

Keep them coming and letting us know how life is treating you after what You/We went through xxxx

 

Good to hear from you again xxxx  Keep em coming  xxxxxx

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Congratulations Julian!  Glad you are progressing, still on 'the long and winding road.'

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I know exactly how that must have been Julian - terrible. I always avoid place with loud noises now, babies crying is another big no no for me, luckily I haven't any grandchildren yet!

 

Glad to hear you are well.

 

Clare xx

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Guess who is celebrating their birthday with a dinner out and finds themselves with crying babies on 2 sides!!!

 

2019, starting strong.

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Julian hope you had a great Birthday and the crying babies didn't ruin your dinner out :rolleyes: hope you had your ear plugs ! .... stay strong ;) xx

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Julian, I had a similar experience at a baby shower I was at last week...not from the noise ... seemed to be with all the motion (people walking back and forth) and when I began helping to clean up (also walking back and forth)...I was very overwhelmed and feeling mixed up (an old feeling I thought I had left behind)...but I sat and regained my sense of stillness...

 

I think ear plugs are a good thing to have in my bag...I guess we keep on learning how our new brain works...Sounds like you are making great progress Julian...babies to hug...so wonderful, mine are all grown, I miss it..

 

Win you always make me smile, would love to hear you sing :)

 

Jean

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I don’t think noise and lots of motion are good for anyone's brain, especially if you've had a SAH.

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Trust me Jean you'd need earplugs like Julian needed  lol 

 

Think I sound good,  then hubs says give it a rest Win ha ha  that is when I realise  the zzzz and buzzing I get stops me from hearing myself lol xxxx

 

Better go to Docs about hearing  xxxx  Be well Swishy Jean XXXX

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Love being able to share all of this with and glad it helps others as the forum first helped me.  Like I said initially, the NHS were great at saving my life.  No complaints at all, even the post surgery food was good (always order the indian in the UK).  However the NHS are not so stellar on preparing one for life after NASAH.  Luckily I know how to use the internet and found behindthegray.

 

So to the update of February 2019:


Over the last month or so I have noticed an increased frequency of the low level headaches that previous were getting further and further apart.  2 paracetamol and some time in the dark tend to solve them but they are definitely increasing in frequency.  It had gotten down to 1 headache every month or two, easy peasy, I could live with that no problem (estimated cost per year 40 to 80 pence!). 

 

This last month I have had 3 or 4 of them (its not the increased cost that bothers me, I assure you).  Not major headaches, just a feeling of discomfort and and pressure around the sides of the head above and behind my ears.  Makes me feel tired, less able to focus on a task and a less than stellar conversationalist.

Will go and see my doctor, who will have to refer me undoubtedly.  I will keep you all informed.

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Oh and some interesting, if challenging reading, on NASAH (nonaneurysmal subarachnoid hemorrhage).  I thought Perimesencephalic was the same as non-aneurysmal subarachnoid haemorrhage.  I stand corrected.  There is Perimesencephalic non-aneurysmal subarachnoid haemorrhage and there is nonperimesencephalic non-aneurysmal subarachnoid haemorrhage.
Still getting my brain around the distinction, hopefully the paracetamol will kick in and the fog will clear enough or I will be divinely granted a few extra IQ points to understand what is being said.

 

"According to the distribution pattern of the subarachnoid blood, these NASAH patients are usually divided into two subcategories, perimesencephalic (PMN-SAH) and nonperimesencephalic hemorrhage (nPMN-SAH)"

 

https://casereports.bmj.com/content/2018/bcr-2018-224933.full
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5433417/

 

If anyone reading this can elucidate, then please do.  I have no shame in admitting my ignorance or inability to precisely follow medical reviews.

 

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Hi Julian

 

Very challenging reading, must admit I have read a lot of this before as I too suffered a NASAH. Mine was non-perimesencephalic and had an aneurysmal pattern. I have been told it was a large bleed which they were convinced was caused but an aneurysm but none was found.

 

From what I can gather the perimesencephalic bleeds are usually associated with a better outcome.

 

With regard to your increasing headaches are you possibly doing too much? I know if I try to stretch things that I get strange headaches, particularly at the base of my skull. Hope you get some answers if you are referred for investigation.

 

Take care

Clare xx

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Hi Julian, I wonder if your consumption of water has decreased over time as your headaches diminished to the point where you are not drinking enough. It is quite easy to become complacent. May be worth a try to increase your intake to see if that helps as well as visiting your doctor.

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Thanks for the prompt responses.

ClareM: not doing anything more to what I was doing before.  Pretty certain.  No extra travel, definitely no extra gym, not even an increase in alcohol (in fact less than before I suspect).


Super Mario : You might be onto something here, thanks for reminding me.  Yes I probably have lowered my water consumption as the symptoms seemed to diminish.  I will step up the water consumption and see where it leads.
 

I will let you know how the increased water consumption goes.

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Sorry I missed you Julian,

 

Hope all is going well for you and family ~ Where would we be without them !! 

 

Seems like you are doing okay xx 

 

Regards to you and Yours 

 

Win xx 500/600 yards I can walk  now it was 60yards  when you came on here  but back still goes lol xxx Keep Well xxxx

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Hey Julian, I agree on the water front but also find my headaches can push up in winter with less daylight and I now take a low vitamin d supplement even though I spend quite a bit time outside each day , anyway I think it helps me keep balance and I also change my food in winter to eat more fish etc.

 

Now do check with doctor before taking any supplements and maybe ask for a blood test to check your mineral and vitamins but do think that we absorb some less well post SAH, that’s just me speculating, but I always like to try and find a logical explanation.  Water is probably the safest bet. 😄

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