julianc

Morning everyone, just a semi regular check in to say that everything is stable as before. Headaches are rare, hearing is still sensitive to higher pitch, loud and reverberant noises, but a pair of noise cancelling headphones and earplugs are always by my side for such activities as might cause a meltdown! Fun fairs... yeah fun fairs are now on the list of activities of which to be wary and for which one must be prepared. Hope all of you are well, within normal operational parameters.

Gosh! It has been a long time since any update here. I guess because there has been nothing new to report. Headaches are rare, hearing is still sensitive to higher pitch, loud and reverberant noises, but Sony's excellent noise cancelling headphones are always by my side! Merry Christmas everyone, hope Santa brings you lots of nice things.🎅🤶🎄

Hi Eric My NASAH dates from 2014 so it has been a good while. The headaches and fatigue were definitely part of my initial period. Unlike you I had surgery to drain the contaminated CSF (cerebral spinal fluid). Months of intermittent headaches and fatigue. Nowadays they are a thing of the past, but paracetamol is never far from reach because when even mild headaches come they can leave you exhausted even if not in pain. Like those mild headaches that you think you can ignore and you do, but after a few hours you given in, take a painkiller and in 30mins are wondering why did you waste hours feeling lethargic and muddy brained? I guess the muddy brain explains it. As for hearing, mine became overly sensitive and still is. Foil blowouts (those curly party raspberry blowers) and loud screaming (children's parties) are to be handled with care and, ideally, with ear plugs or headphones (the more noise cancelling the better). I wrote about it here. As for my hearing in terms of performance, no change. Tested it on a machine at an opticians, and all good, better than the wife's. Not noticed a loss. One downside, I don't think I hear myself sing like before. Feels like my hearing is overly sensitive to my own voice which leads me to move the mic away. The guy on the mixer asks me why I do that so I guess it is down to my hearing rather than my singing. Might try some earplugs to see if a little bit of dampening returns my hearing of my voice to regular levels. Hope you get better and better and please do keep us posted on your progress.

You take care too and rest assured I will pop in every now and then to keep a history of my recovery and the long term effects. I am immensely grateful for the all the advice and support here so intend on paying it back as long as I can.

Just a quick update as there is nothing major to report. Had both my jabs (AZ), only side effect was extreme tiredness after the 2nd one for 3 days (weekend and bank holiday - damn). Other than that, and the weight gain, all much as the same as before. Noise is still an issue but it is hardly like I am going into loud echoey environments these days. Stay safe all.

Long time no speak everyone. Well its July 2020 and since my last message, the frequency of those mild, foggy heachaches has returned to normal. i.e. rarely. In fact, apart from the weight gain and potential damage to my liver from lockdown... I am doing fine. Whilst Covid-19 does not appear to present any increased risk to NASAH survivors (I'm perimesencephalic FYI) I am not taking any chances. Stay safe everyone!

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.

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.

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.

Guess who is celebrating their birthday with a dinner out and finds themselves with crying babies on 2 sides!!! 2019, starting strong.

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.

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.

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.

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.

"Boring conversation" Broncothor? You've met my mum then?