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julianc

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julianc last won the day on June 17 2015

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About julianc

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  • Birthday 01/01/1970

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  1. 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.
  2. 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.
  3. 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.
  4. Guess who is celebrating their birthday with a dinner out and finds themselves with crying babies on 2 sides!!! 2019, starting strong.
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. 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!
  10. 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.
  11. 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.
  12. Hi everyone, almost 9 months post incident and surgery (NASAH with extra ventricular drain) and still no licence. The 6 months came and went with just a letter from the DVLA saying they might take another 6 weeks to resolve. Those 6 weeks have passed and nothing yet. Frustratingly the DVLA do not use electronic mail. It seems they consider something as difficult as secure correspondence by electronic means as being beyond their ability. Strange when you consider their sleek ability to process online payments for road tax and countrywide number plate scanning with OCR and database querying for late form fillers and payers. I am miffed to say the least with the DVLA way of carrying out this process and that they have deprived me of driving beyond the statutory amount for no valid reason and thus sharing some of the load that my wife has had to bear.
  13. 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
  14. 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
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