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julianc last won the day on June 17 2015

julianc had the most liked content!

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About julianc

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  • Birthday 01/01/70

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  1. 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.
  2. 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.
  3. "Boring conversation" Broncothor? You've met my mum then?
  4. 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!
  5. 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.
  6. 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.
  7. Driving / DVLA / Upset

    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.
  8. 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
  9. 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
  10. Driving / DVLA / Upset

    I had a very quick response from the DVLA however it was negative. I was surprised that they decided this and I am contesting it because I had a perimesenphalic (non aneurism) SAH and have been very very very fortunate with regards to post discharge symptoms i.e. nothing apart from sleeping a bit during the day. I felt they made the decision despite my actual condition based on possibly erroneous information in the discharge document (suggesting I had an internal shunt put in when I didn't) but according to their write up it could also be because I had a drain. I have written to the address suggested and look forward to a prompt resolution as long as there are some humans involved in the process that can look at the actual facts rather than processes engraved in stone.
  11. New Member Kathyv

    Welcome Kathy, and thanks for sharing your experience. I am on paracetomol regularly plus the occassional dose of Tramadol when I feel its about to get more painful. Want to avoid using the Tramadol too much as I have read its an addictive one. Hope you keep getting better.
  12. Dear All Its great reading all these different experiences and I notice a common thread in many of them. The new appreciation for life. Definitely happening for me. By the way I had a first full day of not sleeping during daytime... admittedly the 2 subsequent days did feature an hour or two in bed but progress is progress. Musn't grumble. Teechur, thanks for the comment and please pass on my best wishes for a recovery, treatment or cure to your nephew. Hopefully he manages to get past this torturous time and it settles to something more manageable or completely innocuous. Happy Holidays and Merry Christmas everyone
  13. Hope all of you are doing well this fine and chilly weekend. I can't find the post but I remember seeing someone apologising for 'hijacking' the thread. No need to apologise, I kicked it off after all. Our experiences vary wildly from superbly informed to outright mis-information. Hopefully future subscribers our current practioners will see this and take heed. Anyway things are slowly returning to 'normal' for me, longer wakefulness less head stuffed sensation when getting up from the floor quickly. I know I was let off very lightly so not pushing myself hard at all and just letting the improvement come at its own pace. This evening I turned down an evening for Christmas drinks at a friend's house, becauseI knew it would only be a matter of a couple of hours before I would be asking to use their bedroom for a snooze! Not the done things IMHO. Have a good weekend all of you.
  14. 43 days post surgery/NASAH Getting longer between daytime naps. Fewer if any sudden energy drains, just the regular tiredness slowly setting in. 2 recent meetings went very well and I feel like me completely. One advantage a scare like this gives us all is the appreciation for the truly valuable things in life. They vary from person to person so go ahead and fuss over yours like you didn't before.
  15. Although the responders have different experiences most agree that that care in hospital was good but there is a split in terms of the advice and information about life after SAH. Haven't done the maths (math for statesiders) but it looks 50/50. I would ask all hospitals to refer people to here for follow up advice. The whole gamut of levels. From a 1st person perspective. Priceless.