Introduction from a recent PMNASAH in the UK

[Dave W]

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

 

 

 

[Skippy]

Hi Dave

 

Welcome to the family  Glad you found us.

 

We're a special lot here with a wealth of experience and "advice".  There are some absolutely fantastic and inspirational people on here.

 

As you guessed, we cannot offer medical advice or recommend particular pain relief or drugs.

 

All recoveries are a individual as the person themselves - so as far as sore neck and headaches being normal, for some they are and some may never experience them. The best advice I was given on here was to listen to your brain - it will tell you when it needs to stop.  Also, keep up the fluid intake - avoid alcohol and caffeine as much as possible for a while - a hydrated brain is good and does help you to think more clearly. 

 

I had the tingling sensation down the side of my head, which I was told was the blood being reabsorbed by the body and at first the headaches were horrendous.  I was taken back into hospital 3 weeks after my bleed with a suspected rebleed, but it turned out to be an analgesic headache because of the medication I had been prescribed. 

 

Luckily a nurse lived across the road from us at the time and told me that she was surprised they put anyone with a brain bleed on that certain type.  I resorted to good old paracetamol and was cleared to take ibuprofen also (not all brain bleeds sufferers are so please do not take this unless your specialist has cleared you to do so).

 

Please do not put much into the timescales you have been given.  (I was back at work 3 weeks later - luckily my husband and I ran our own company, so I could rest throughout the day when I needed to).  You will recover at your own pace and only you will know when or if you are fit to return to work.  It's not like having a broken leg, where the standard is a few weeks for the bone to heal; you cannot rest your brain like you put your leg up!

 

Basically, take is slow and steady, listen to your brain and your body and, most importantly, find a new "normal".  For me, once I realised that there was no point fighting what I could not change, I accepted that I would not be able to do things I did before (high impact exercise 5 times a week) and that I needed to slow down instead of working and living at 100 mph.

 

It can be a long road to recovery, but you're allowed to make as many pit stops along the way as you need to.

 

Take care and we look forward to going to on your journey with you.

[subzero]

Hello Dave and a warm welcome to BTG. So glad you found the site so early after your bleed.

 

As you will already have read, we do not give medical advice, however the support available in the form of members' posts about their experiences and the fact that you will get a sense that you are not alone as you come to terms with this life threatening trauma you have experienced.

 

You major on how debilitating these headaches have been for you, and again headaches are one of the consequences of a bleed such as yours. While few survivors can be pain free, a lot of our members have to deal with headaches of varying degrees .... some for weeks...others for months ...and yes chronic headaches are a very real issue.

 

The following BTG link is also found by using the search facility at the top right of our Homepage.

 

https://web.behindthegray.net/search/?q=Headaches &quick=1

 

Simple actions can also reduce headaches such as drinking plenty water, limiting stress and building rest periods into your day especially following any exertions.

 

You very wisely have decided to take a three month recovery plan and not to let your previous healthy exercising regime influence your thinking. More effort is less progress as a rule. 

 

So again welcome to our site and please introduce your family to it also. It will give them a greater understanding as to how their 'Dave' is feeling as you 'recover' .

 

Subs

 

 

[jess]

Hi Dave welcome to btg 

 

I still get headaches 20 years later so pretty normal they aren't as bad as what they were xxx

 

Hope to hear more from you soon and hope you keep recovering xxx

[Dave W]

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

 

 

 

 

[Skippy]

Hi Dave

 

Glad you're hydrating - it's a massive help.  The thing that also helped me was to keep a diary - not masses of detail, but general feelings, stamina, level of headaches etc. When I had bad days and thought that I'd never recover, it really helped to read back and see just how far I'd actually come and just how much the headaches had abated and how much more energy I had.

 

Please do keep us updated - and like Subs said - it is useful to let your family have a look at this site so they know how it really is for you xx

[Chris G]

Hi Dave. Good luck with your recovery. It differs for everyone and it is more of a rollercoaster than linear. In my case memory loss and headaches were the main after effects. That lasted for almost a year. I still get the “weird” headaches occasionally and it has been 7 years since my NASAH.

 

I say weird because the headaches are acute and more like a brain freeze from drinking something cold than they are a normal headache. I like to think you are stronger now that this is behind you and you are recovering as you were before it happened. You survived it. Now just be patient and find people who understand and will support you. 
 

Chris

[MarkH]

Hi Dave.  I think everyone's experience is different.  Reading your post brought back some awful memories for me though and I really sympathise with you.  It is such a traumatic experience.  I was misdiagnosed initially so was in agony (head, neck and back) for five days before I was admitted to hospital. 

 

At that point I was given a paracetamol drip and and valium which really helped.  I stayed in hospital for eight days on paracetamol and codeine but initially really struggled between doses and had to take morphine at night. 

 

For me the really excruciating pain started to abate around day 10 but I had constant headaches and a stiff neck for several weeks afterwards accompanied by intermittent shooting pains.  The intensity of the headaches slowly reduced and they became more intermittent after a while. 

 

I'd say it took about three months or so before I stopped having to take regular painkillers.  I'm now 14 months on and whilst I'm slightly more prone to headaches than I used to be and get tired more easily, I feel pretty much back to normal.

 

A word of warning on the DVLA front.  Their admin is extremely slow.  It took them over a year to confirm they weren't going to revoke my licence.  When you feel up to it I'd seriously suggest you try to get a letter from your consultant or doctor confirming you are fit to drive while you wait for their formal confirmation.

 

WIshing you all the best for your continued recovery!

[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

 

 

 

 

[KJ_online]

Hi Dave, 

I am just amazed to read your account as I have also just recently had a PMSAH, two days after you 19th Dec. So much of your story is the same as mine, I won’t type it all out here as last night I wrote an “Introduce yourself” post, I think I’ve linked it below.

 

My current terrible battle is sciatic pain, my headaches eased a lot whilst in hospital last week but the neck, back and sciatic pain worsened after leaving hospital so had to track down more pain meds after being discharged. Wishing you all the best Dave in your recovery - am on the journey alongside you! 

 

 

[Dave W]

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

[MarkH]

Hi again Dave.  Great to hear your headaches are subsiding and you are already able to manage without pain killers.  That's fantastic news.  The fatigue will slowly improve as you become more active but it is important not to overdo it as in my experience it can set you back a bit. 

 

I went back to work (quite full on office based job) after two months which in hindsight was probably a bit too soon.  I coped okay with the work itself but it was exhausting and for the first month I was pretty much unable to do anything in the evenings or at the weekends because I was so tired.

 

You should absolutely be guided by your doctor about what you should and shouldn't do.  Mine advised exercise was fine when I felt up to it but to avoid lifting heavy weights.  I started gentle running after three months and gradually picked up the frequency and intensity of my runs.  I'm not back up to the distances I used to run yet (half marathons) but am very comfortable doing an energetic 10k. 

 

My doctor confirmed it was fine to give blood and I have resumed doing that with no ill effects.  I was also advised to get a blood pressure monitor to keep tabs on my blood pressure which I have done. 

 

Good luck with the GP appointment and I hope your energy levels start to pick up soon.  It's still very early days for you though you so don't try to do too much!

[subzero]

Hello Dave and thanks for keeping in touch with us about your progress. 

 

Great to learn that your intense headaches have resided considerably. Your post suggests that you are willing to listen to what your brain and body are telling you and taking that 'longer term' view to recovery.

Well done so far and you will not regret that important decision.

MarkH clearly supports this from his own experience too.

 

Many of our members have found that their GP simply does not have sufficient regular experience of NASAH patients to give adequate advice on recovery, and  maintain contact with their original consultants. 

 

As far as returning behind the 'wheel' is concerned, our section  on Driving Post SAH has copious information on this subject. It has always been important that post bleed the DVLA is advised and prior to driving again their confirmation is sought.

 

Well done so far in these early days and given time you may be able to return to your running and more strenuous activities.

 

Look after No 1 and you won't regret it.

 

Also great to hear that your family are right behind you with their support  😊

 

Subs

[KJ_online]

Glad to hear your recovery is going well Dave, especially on the reduction of pain! Slow and steady.

You definitely seem to be able to do more than me each day; my pain is dulled by the nerve pain meds I ended up being prescribed which I appreciate a lot, but the fatigue is crippling some days, I didn't get out of bed until 3 yesterday. Today is better -- I'm downstairs and was hoping to go for a bit of a walk but the weather is against me here!! Laps of the house it is. 

I also have a phone appointment this week with my GP. Interested to hear what yours will say. And interesting to hear from others that GPs may not have a lot of experience with NASAHs and that we should retain contact with our neuro-consultant -- I can imagine that is prob true.  

Hope you can return to some of your more fun activities soon! So nice that you live near the sea and enjoy sea swimming. I'm sure going back to swimming would be a great activity eventually.... I imagine it would be best to swim with someone else nearby whenever you do restart swimming (maybe you don't swim alone normally anyway so that wouldn't be a problem!) 

 

Re DVLA, I personally haven't managed to inform them yet -- I don't have any intention of driving anytime soon, and was wondering about just absolutely not driving til I next see my neuro consultant, and if they say I am fit to drive, do others think I still need to inform the DVLA after that point? I'm just trying to reduce admin to be honest...! 

All the best for the week ahead, hope your recovery continues as well it has been! 

Karin 

[Dave W]

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.

 

 

 

 

 

[Carolyn250]

Hi Dave

 

I’m  a UK NASAH person. Based near Leeds. Mine was 2 years ago mid covid so I was a week at home before going to hospital. I didn’t take enough time to recover and wish I’d been advised to do so but GP suggested 2 weeks off work and there was no neuro follow up as nurses had been covid re-deployed! Timing huh!

 

But yes headaches - I had dihydracodeine for bad days and after first 6 months I barely needed. I still get fatigued - there seems to be no rhyme or reason as to why but several times a week I may be wiped for a few hours or a day. I don’t think there’s anything to fix  this. My head gets jittery and light headed and spacey. I had to stop working because that much mental effort was too much. 

I also think anxiety subconscious or otherwise has a role to play in these symptoms. But this is me and everyone is different and I’m telling you this so you don’t try and follow a pattern of symptoms. Everyone is different. I’ve been told that after 2 years whatever your symptoms are is how you’ll be for the long term - anyone else heard this?  I’ve also been told this isn’t true!!

 

It’s a little understood happening but as you were told it’s very rare for it to happen again. Tinnitus - yep! Think that’s common.

 

DVLA - nobody told me til several weeks in so I asked the GP who asked the neuro dept for me and said not to bother as they were happy for me to drive at that stage. So I didn’t drive but I didn’t inform dvla either

good luck with your recovery. You can’t DO anything to speed it up so patience is your friend. 

 

[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

[Skippy]

Hi Dave

 

So glad to hear that things are improving for you.  16 years on and I can do everything I did before, apart from high intensity workouts.  I used to do step aerobics three times a week, but when I've tried since, my head pounds and I get the most horrendous headache.  Not been able to return to running either; something I only did a couple of times a week and not for great distances, so well done you.  Take it steady and build it up.  Really pleased for you.