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Everything posted by julianc

  1. Like the others, I had no symptoms prior to the thunderclap headache. No similar symptoms after the surgery either. My post surgery symptoms are sensitivity to noise, occassional dull headache and occassional mild fatigue. The poor memory is not a new thing, but now I have an excuse and more coping mechanisms. Hope the MRI sheds some light. Good luck Shaw.
  2. 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!
  3. 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.
  4. 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 patte
  5. 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 pa
  6. Guess who is celebrating their birthday with a dinner out and finds themselves with crying babies on 2 sides!!! 2019, starting strong.
  7. 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 app
  8. 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.
  9. 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.
  10. 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 t
  11. 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 abs
  12. 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 th
  13. 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.
  14. 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 query
  15. 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
  16. 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
  17. 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 th
  18. 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.
  19. 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.
  20. 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
  21. 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.
  22. 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.
  23. Maybe we should leave the surgeons to surgery and just appoint a new kind of consultant that advises on post hospital life and care. Nothing else. Just the off boarding. A member of staff who is informed by constant referral to former patients and not an old text book or ill founded supposition or wishful thinking. Facts based on real life from that facility. Good mind to put it up on the UK government's petition site. Any UK members agree?
  24. I feel like I can't LIKE your post because I agree you. All levels of neurosurgeons (1st, 2nd and 3rd) should have been more honest or kept their ill informed opinions to themselves. How can this be allowed to happen today? All they need to do is record a video, update it every quarter to take into account any advances the establishment makes in treating SAH then give patients a link to it and this forum. Done. No time wasted. No false hopes created. Realistic expectations set. Helpful support ensured. Grrrrrrrrrr.
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