Dave W

Hi everyone, I've been meaning to do an update for some weeks now and have finally got around to it. I hope this will be useful for others who join our exclusive club! I was lucky that I was able to pace my recovery. I took things steady and listened to my body. But after about 9 weeks my builder phoned up offering to come and help me build my barn (this was something planned for January but I put it off after my 'incident'... he was now available so I couldn't say no!). I told him I was on limited duties but truth be told, I worked pretty much flat out for 3 days the first week and then 4 the next. I was so happy that we'd broken the back of the build but I was exhausted. I discovered from this activity that my energy levels were not back to 100% but found it reassuring that I could push myself a bit for a few days ... as long as I was prepared for the consequences: I was completely wiped out and spent the weekend recovering from what would previously have been just a moderately physical week. After that I was able to throttle back a bit but it gave me the confidence to steadily return to all my old activities and hobbies, 4 months on and I am now doing everything I did before. But I am doing these things a bit slower, more spaced out and steadier. The last thing I got back to was running. Only 2 or 3 miles at the moment but confidence is growing and I will be patient. I've had a couple of mental issues that I am working through: the first one is that when picking up tasks and hobbies that I previously had no problems with, I have found myself obsessing about strange details. When building the barn, I couldn't sleep at night because I was thinking about how to fasten the roof screws. They are straightforward, but I just found my mind churning it over and over again. And no mind games or relaxation techniques would get my brain to let go. That's just one example of these repeated obsessive thought patterns. My wife and family reassure me that they don't see any change in my behaviour, moods (or even my sense of humour🙂) but it's definitely something I need to work through. The other thing that I've found is that although I'm pretty much back to full physical health, I don't have the same mental capacity and energy for activities. I suffer a bit of brain fog and confusion so I have found it best to pace my social interaction and avoid doing too many social things on the same day. I plan my weeks more than I used to and sometimes I will avoid an activity or situation if I think it's going to overload my little noggin. I'm thinking that my brain has undergone a bit of rewiring and things are still settling down. But I'm fairly pragmatic about it: if I stay as I am then I'm still blessed with a reasonable set of faculties and I am thankful and fortunate to have come through this as well as I have. And if things improve over the coming months and years then that is a bonus (especially at my age!) Oh, and one little discovery this week, yet to be fully confirmed: I went to give blood (having been told by my consultant and my GP that there was no risk in doing so)... but after I told the Blood and Transplant service about my NASAH they declined me and I received a letter the very next day saying I could no longer be a donor. I'm surprised how quickly the letter same through as the nurse said they would have to contact my GP to get my medical notes and would need to investigate further before contacting me. So I won't be surprised if I get another letter in a month or two, either saying the same thing or telling me I am ok to be a donor... I'll let y'all know the final outcome. Best wishes everyone, Dave

Hi everyone, and thanks for the supportive posts from Mark, Subs and Karin. Another quick update from me: I spoke to my GP yesterday. He was (fairly) well informed about the type of bleed I have had and reiterated most of what I have already read on the forum (thanks everyone! ) He said that, in the long term, there was no reason I should not go back to all my old physical activities... as they are good things to do for overall long term health. But take it steady. For pain relief he said the 'gold standard' was to stick clear of Ibuprofen and Asprin (as they have mild anticlotting properties), paracetamol is a good 'un. Ref DVLA: he said I should hear from them soon. He didn't need to send me a letter as they would contact him direct if required. He is a very clever GP because I received a letter in the post today from DVLA saying that I am fit to drive. (How did he know???? ) I'm not going to start driving just yet but it's good to have 'followed the process' and got my paperwork sorted.

Hi everyone, I thought I'd give an update 3 weeks on from my bleed... everyone's experience is different but hopefully this may be useful for some. Over the past week the headaches have subsided considerably. My neck is no longer tender to the touch and as a consequence I'm not getting such bad neck aches. Sciatica remains a slight discomfort in my buttocks and thighs. The great thing for me is that the 'pressure' headaches I had when I tried to rest my head on a pillow have now gone. This means I am sleeping a lot better at night and getting more rest. I am no longer taking any painkillers. Interestingly, for me, paracetamol did a good job of relieving pain from a sort of 7 out of 10 down to a 3 to 4 out of 10 scale. But now the aches are permanently at the 3 or 4 level, the paracetamol wasn't really having any effect. And I can live with a background headache for the time being. And the headaches are subsiding. I'd say that today I'm around the 2 to 3 level... My wife tells me I am deafer than before. I think this is in part because I have some tinnitus (I can hear my pulse and there's a general 'whooshing' noise a lot of the time). Again, for me, it's livable with and will hopefully subside over time. I'm fortunate that I don't have an employer chasing for return to work: I have delayed all plans I had for January, kicking them (for the time being) down the road to April. (I'll amend that date as my recovery progresses.) So no building or renovation work, lumberjacking, hiking, volunteering or sporting activities until I'm sure I am ready! At the moment I am only able to potter about. I get tired very quickly and move around quite slowly. I have walked up to the post box, walked around the supermarket (propping up a trolley) and done some light painting (on a workbench... no reaching!). I can do about 1 hour of gentle pottering and then I need to take a rest, and I can do that up to 3 times a day. But I'm listening to my body, hydrating lots and only doing what I feel like (As I say, I'm very fortunate to be able to do that: a *very* supportive family and very few outside pressures) Next week I have a telephone appointment with my GP. I thought I should check in with him following my bleed and find out if he has any advice on my long term recovery. I am starting to think about whether there's anything I should stop doing. I'd like (one day) to get back to running. We live near the sea and I've been an occasional (all year round) sea swimmer... maybe that should stop? Heavy lifting? Can I go back to being a blood donor? All sorts of minor things to think about... in the future. I will also ask him about driving. I filled in the DVLA form but (of course) have heard nothing back from them. I probably ok to drive now as I have to loss of consciousness issues and although I tire quickly, I can hold my concentration when I need to. I don't want or need to drive just yet but it would be good to start the process as I'm sure it will take (at least) a few weeks to get a response out of the DVLA. I think that's it for now. I will update again in a week or so. Best wishes, Dave

Hi Karin, Thanks so much for sharing your experience... and for linking to it from my post. This forum has been a godsend for me and I hope you feel the love and support coming over the airwaves. I am fortunate that my sciatica has been limited in terms of pain levels and also limited to my bottocks (a word always best said in the accent of Forrest Gump! ) Take care and fingers crossed for steady progress ahead of your wedding. Best wishes, Dave W

Thanks Chris and Mark for sharing your experiences. Still early days for me obviously. The headache is turning more into a neck ache at the moment. I imagine we will end up like the Eskimos (who have 100 names for snow) ... with 100 names for different types of headache! The sciatica in my thighs is stronger at the moment too... but from other posts it's good to know it's 'normal' and the reason behind it. Thanks for the heads up ref DVLA. I saw on another post that phoning them got things moving ... but I'm many weeks away from worrying about that. Best wishes, Dave

Thanks so much for the replies guys. It is so reassuring to know we are not alone on this journey! The point around hydration comes up a lot... and it's one of the few things they did mention in hospital. I've always been a great hydrator but it is even more of a habit now. The first few days were: Drink, sleep, pee, repeat! (Or medicate, drink, sleep, pee, repeat!) I'm sticking mostly to water. We're lucky to have delicious soft tap water down here and any flavourings jar the taste buds a bit at the moment. Will update again in a week or two if / when there's any progress. Best wishes, Dave

Hi everyone, First of all, let me say how fantastic it was to find this forum and how grateful I am to everyone who has shared their experiences here. It has given me some basic knowledge of my condition and some hope for the future. My story: I am a 60 yr old male who lives in the west of England with my wife and 2 of our 4 children. I am an active outdoors kind of fellow with many physical past times that keep me fit and (up till now!) healthy. I'd had a busy week with some heavy lifting in amongst the usual range of weekly activities. But on the Saturday (17th Dec) I'd had a relatively quiet day, so nothing that jumps out as the cause for a classic Thunderclap headache (as I now know it is named) which hit me at 7pm in the evening. I'd never experienced a '10' on the 1-10 pain scale but this had me moaning involuntarily and within a few minutes, when it didn't subside, I knew something was badly wrong. We tried the health services (111 and 999) but there was a long wait just to get an answer and we were told it would take several hours to get an ambulance to me. So we set off to the local A&E department with my wife driving. Then the vomiting started... Casualty was not a pleasant experience as they were so overloaded. At some point in the evening they put a cannular in my arm and the intravenous paracetamol gave me some relief, and at some point the vomiting stopped, but it was a very long and uncomfortable night... After about 7 hours wait a duty paramedic came and saw me and made a quick, accurate and effective assessment. He sent me straight for a CT scan and then, having reviewed that, straight off for another one with dye in my veins, all the while consulting with the neurosurgery consultants based in Bristol. It was confirmed that I had suffered a brain bleed and they decided to transfer me to Bristol for further diagnosis. After another 12 hours or so, an ambulance became available and I was transferred to the neurological ward at Bristol Southmead hospital. From there on, things were very efficient: I was sent for two more CT scans straight away (as their scanner would give them more detailed views of the bleed) and by the following morning the consultants had reviewed the findings and were leaning towards it being a PMNASAH type of bleed. They confirmed that they would look at it very thoroughly and if there was any doubt I would be sent for a follow up angiogram. Their protocol is that only if 2 Consultants agreed on the diagnosis would the angiogram be cancelled. And apparently they look at the scans in the radiology department because they have the biggest screens with the best resolution! They came by early in the afternoon and confirmed that I had had a PMNASAH and as such there was no follow up surgery required or any further specialist treatment so I could be discharged later in the day. All very positive and straightforward (medically). Alongside that, I was (and am) still suffering from blinding headaches. They transitioned me off the (lovely!) intravenous paracetamol onto Oramorph... which I did not get along with, and codeine... likewise: problematic. I found both of these drugs made me feel hot and 'livened up' my brain... neither of which helped with the headaches. So, I was just establishing a regime of oral paracetamol when they sent me home. All our children had rallied round so I was taken home and cossetted but pain relief continued to be a problem. Paracetamol wore off after 4 hours and with only 4 doses every 24 hours I ended up in a lot of discomfort a lot of the time. I'd say that pain levels from the headache were in the 7 to 8 range when not treated with pain relief and around the 3 to 5 level when the paracetamol was working. I struggled through a couple of days but then had a very bad night... something needed to change. A call back in to the neurology ward was unhelpful and, in the run up to Christmas, another trip to casualty was not really an option. Fortunately, the nurse who discharged me had mentioned that Paramol sometimes worked for people who don't get on with codeine. (This is not a recommendation or a medical opinion... I'm just sharing what has worked for me so far!) I started taking Paramol and this helped relax my brain a bit (I found I could finally stop ****** thinking!) and things became more controllable. The other surprising learning for me was not to take the full dose of 2 tablets every 4 hours: I'm a large chap (6ft 2in and around 100kg), so when medicines say to take 1 or 2 tablets, I will always go with the 2 tablet option. But that left me with 4 x 2 hour gaps each day, which were pretty unbearable. So I moved to taking 1 tablet every 4 hours, only doubling up once or twice a day if I became really uncomfortable. What I have discovered is that (for me, for this particular condition, at the moment) 1 tablet is so much more effective than one might expect from a 'half dose'. So I've settled into an ok regime that took me through Christmas with my very understanding and compassionate family. Pain is managed at a level of 3 to 5, I'm getting some rest and when not resting, doing nothing more strenuous than watching telly. Typing this message is a new 'high' in terms of exertion levels at the moment! My neck is still very tender at the top, around the base of the skull. I've had shooting pains in my legs which (from this forum) I'm putting down to sciatica, possibly blood draining into the nervous system (I originally thought it was pressure pains from sitting around so much but it really doesn't feel muscular or like atrophied tendons... its sharper and odder than that). For a few nights I resorted to sleeping upright because any sort of pillow or cushion touching my neck or my head just made the headache worse. But hopefully that is past now... sleeping upright is an art I really have not mastered: getting the support in the right places is so difficult! Are my sore neck and continued headaches normal? I'm hoping those symptoms will subside in a week or two. Or 3 or 4? One consultant said I'd have sore head for a few weeks. The other (more accurate perhaps?) said I'd be out of action for 6 to 8 weeks. But both said I should make a full recovery, did not need to change my lifestyle and was at no greater risk of a recurrence than anyone else in the population having it. I'm currently finding that hard to believe and will be happy and eternally grateful to get back to even some of the activities I enjoy so much. But I'm in no rush. I've delayed all plans for an initial 3 months and will reassess that as time goes by. Another thing this forum pointed out was that I must notify DVLA and cannot drive again until I am cleared to do so. This was not mentioned in the hospital and would not have occurred to me on my own (I had no blackout, loss of consciousness, no altered vision etc). However the DVLA website is very clear on the matter and I think it's perfectly reasonable. So there's another task... form B1. Perhaps for tomorrow... As commented by others on the forum, the lack of information or guidance from the hospital about how to manage ones recovery is very disappointing. This forum is a godsend and in my more wakeful hours I shall be trawling for more shared experiences, tips and suggestions. Thank you all so much. I hope this has been useful. Best wishes, Dave