Intro - Karin

[KJ_online]

Hi all, just to introduce myself:

 

I’m 33 and suffered my NASAH ( I think perimesencephalic) on 19th December so I am 11 days out. It was a very traumatic experience especially given current situation our wonderful NHS is in (I’m in London so am aware I’m more fortunate than many other regions!)

 

I was in A&E across two hospitals for an agonising 23 hours following my NASAH, before a bed became available on a neuro ward. I was in hospital for 4 more days, they did a cerebral angiogram to double check for no aneurysm, and then discharged me when they were content with my results and my pain management.

 

I came out and was able to be home for Christmas, but the pain has just been unmanageable since returning home. I was discharged with paracetamol, ibuprofen and a little codeine, and nothing was touching the sides.

 

The headache thankfully had lessened whilst in hospital, but the stiff neck remained and the absolute worst pain has been sciatic agony in my lower back and down both legs. I have huge spasms where my legs almost give way and can hardly walk without assistance, and sitting is also hard as is lying down so it got pretty desperate because nothing was giving relief. 

We tried without vain (obviously over Christmas) to contact my ward and also my GP about more pain relief; once the GP opened after Christmas I couldn’t get an appointment until 9th jan. I resorted to returning to A&E where I waited 8 more hours and left with three days of low dose diazepam.

 

Eventually we decided to bite the bullet and pay for a private GP appointment who finally prescribed me something more for the nerve pain (pregabalin). I am still in lots of agony but the spasms seem to have lessened. 

 

Am so glad to have found this forum, it has been a very scary time and I haven’t managed to find much out about my type of SAH apart from on here. I also feel like I was discharged from hospital armed with insufficient information, and not a lot of follow up - vague mention of a consultant appointment within 3 months.

 

I am daunted by how long the recovery may be: I’ve initially requested 4 weeks signed off work, but from reading here it seems that might be too ambitious. I’m also getting married in May and am anxious about the fatigue levels still being around by then  Obviously everyone’s recovery is different and my family are so optimistic about my recovery being quick, I want to be optimistic with them too but inside I am worried. 

Big thanks to those who run this forum and to all the other posters. It seems like a very supportive place.

Karin x 

[Tina]

Hi Karin  

 

A very warm welcome to BTG, so glad you found us.

You will find a wealth of helpful supportive information here. BTG was a Godsend to me  

 

Like you, many of us were sent home without any information of what to expect and just paracetamol and ibuprofen. A very scary time for you. So sorry you are having so much pain, but glad the spasms have lessened. The stiff neck and back pain i was told was the blood dispersing down the spinal canal. This did improve over time.

 

You may find that you will need more than 4 weeks off work, but as you say, everyones recovery is different. Listen to your body, rest up lots and drink plenty of water, it really does help. Do what feels right for you and dont be pressured into going back too soon. When you do go back, make sure you go back on a phased return and gradually build up your hours.

 

Hopefully you will get a follow up in 3 months time and will have a better picture of how your recovery is going. If you dont hear, chase your Consultants secretary. I was treated at Atkinson Morley St Georges Hospital Tooting. 

 

Congratulations on your forth coming wedding in May  you are bound to feel anxious, a very special day you will want to cherish and enjoy. Baby steps, one step at a time. You have been through a major life threatening trauma. Just be honest about how you are feeling and your fatigue levels. Very early days for you in your recovery.

 

We look forward to hearing more from you.

Wishing you well with your ongoing recovery.

 

Take care

Tina xx

[Louise]

Hi there

 

And a warm welcome to the site, glad that you found us...

 

slow and easy does it, lots of rest, keep well hydrated (it does help) 

 

take care..  

[Dave W]

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

 

 

[Swishy]

Hi Karin,

 

So very glad you found us...I know finding this site was so helpful for me.  You are so wise in knowing everyone's recovery is different, so true.  The desire to get back to my life overwhelmed me early on, I just wanted my life back.  It seemed too hard to have to wait for it, but once I began taking one day at a time (this was not easy for me) it was a bit easier and I actually became good at it over time.

 

The pain is so terrible, I am so sorry reading about what you went through. I am glad it seems to be lessening. I hope each day is a bit better for you and take advantage of the positive thoughts of your up coming wedding to bring joy to your heart.

 

Thoughts are with you

xx

Jean 

 

[KJ_online]

Hi everyone,
 

Thank you so much for all your supportive replies. I am playing good-day-bad-day roulette at the moment it seems. Today is a better day, I've managed to do a few handover things for work since I left a number of things unfinished before my unexpected dramatic start to my time off! (That 30 mins of computer work tired me right out!)

But still feeling quite faint when I get up, sciatic pain easing (no spasms any more) but the deep ache remains. Have had some quite distressing nights, I am getting terrible dreams/flashbacks to the scarier moments of my hospital stay, making me not want to go to sleep some nights.

I think I'm finding that now that my pain isn't so completely all-consuming, I have more headspace for the more traumatic thoughts and/or emotions about what has happened. So just working through that, have woken up a few days just feeling inexplicably sad.

 

Even though 90% of the time I just feel so grateful that I've been so lucky, the negative emotions are creeping in sometimes. The fatigue is just like nothing I've ever experienced... Still, I'm very grateful that the nerve pain is more under control.

Hope you are all well, Dave how are you doing since we are at similar stages with our recovery, time-wise? Hope things are improving for you. 

[Skippy]

Hi there

 

I can completely understand what you're going through - it's exactly how I felt!  See you GP and ask to be referred for counselling.  I was diagnosed with PTSD and speaking to a complete stranger, with no emotional attachment was an almost instant relief for me.  In the end I only needed 3 session before all the negative thoughts, flashbacks, guilt and nightmares became manageable.  I highly recommend going down that route.  Of course, we'll all be here for you, but that face to face, instant response is great.

 

Take care

[Swishy]

Hi Karin,

 

What you are experiencing is so familiar to me, I could lay in bed at night and almost feel like I was back in the ICU...it is so scary and so close, I am sorry. you are going through this. 

 

Looking back I think once I started to move away from the acute episode I began to think I had post traumatic stress , I foolishly waited 2 years but finally....I  also went for counseling and like Sami stated a complete stranger with no emotional attachment was such relief...I needed to tell my story and just have someone listen, quietly and hear me...It didn't take me many visits and I felt like I had come a long way. 

 

Thoughts are with you, we are all with you.

xx

Jean

[KJ_online]

@Swishy @Skippy @Dave W @Louise @Tina Thanks so much again for your supportive messages!

I do keep having nightmares, some related to my hospital stay and some just completely off the wall horror-film nightmares (I've never been a nightmare-y person!) so hoping they subside too, maybe they're a meds side effect rather than a bleed side effect. In terms of flashbacks, bad dreams, sadness etc I will keep an eye on it, and seek some help from my GP if they persist for a while longer... 

 

The numbness on the right side of my head around my ear, which I forgot to mention in my original post, is subsiding which is nice, still have tinnitus in that ear and hope that goes away eventually. Just trying to notice all the little improvements, or if I manage to do something new again for the first time -- helps me feel positive 

I've had to up my dose of nerve meds (the doctor prescribed me some Pregabalin) so I am just adjusting to a slightly higher dose of that, it really has numbed my unmanageable nerve pain I was experiencing. The pain is still clearly there but it's like the meds have wrapped cotton wool round my nerves. Still napping a lot and unable to even go for a short walk along the road without total exhaustion, am getting very bored! Am trying to really hydrate more than I normally do too as everyone is suggesting on this forum. 

Wishing everyone a good weekend, Karin 
 

[KateEMay]

@KJ_online

Hi Karin

 

I had similar symptoms as you in October (I’m not so ‘techy’

as to attach my intro here). I also have tinnitus as well and I had weird sensations and aches down the bottom of my back and tops of my legs following the thunderclap headache, neck spasm and residual headaches that gradually subsided over a few weeks.

 

I am lucky enough to have BUPA healthcare through work and have had several investigations since with a consultant neurologist. They worked with radiologists and revisited the results from the two hospitals’ CT scans and lumbar puncture and undertook MRI investigations on my head, spine and neck, concluding that I never did have a non-aneurysmal brain haemorrhage as the MRI would have shown the residue from the bleed!

 

They suspect that there was blood in my lumbar puncture due to it taking the hospital five attempts to perform it and that the thunderclap headache and pains etc in my legs were because I had likely suffered a Cerebral Spinal Fluid leak instead. Bizarrely they think that as the treatment to resolve a spinal tear is injecting fresh blood into the spine to seal it, the misperformed lumbar punture actually also treated the tear! I am now completely fine but left wondering how many people are diagnosed with a NASAH when an MRI might indicate otherwise 

[Jo_S]

Hi Karin,

 

I am also 33, live in London and had a SH in January this year.

 

Just like you, I presented to one hospital, was transferred to another (I suspect we were at the same one) and stayed there for 5 days in total where I had the most outstanding care. I had an angiogram (no surgery) and have a follow up appointment in 3 months time, but was discharged with limited information on the recovery. I was told by the consultants that I should recover and eventually get back to normal.

 

I'm currently 6 weeks in, feeling quite anxious and although I am physically recovered, I'm not quite there.

 

I have been in A&E twice since, first with pain and spasms in my lower back due to the blood ripping down my spinal chord which left me unable to walk properly (this has now resolved) and more recently, with distorted vision which I can only describe as similar to a migraine aura (this has also resolved.)

 

I'm finding things quite difficult as I used to exercise 5/6 times per week and pre-SH I was very sociable.

 

It would be really interesting to know how you are coping / getting on and if you are seeing improvements?

 

I hope you are recovering well and that you are able to enjoy your wedding preparations.

 

Jo x

[KJ_online]

Hey Jo,

Wow what a mirror experience we've had... 

I suppose I am about a month ahead of you or maybe less in terms of recovery, I definitely feel like the last couple of weeks I've made more progress with recovery so hopefully this is on the road ahead for you too!

 

E.g. this week I have definitely pushed myself more and it's been okay, for example I got the tube for the first time (haven't had the energy to do much outside the house until now, and have struggled a lot with loud environments so the tube has not been very tempting..!) but it went okay with some Loop earplugs that I bought. 

As I mentioned in my first post, I had exactly the same pain and spasms as you after leaving hospital (terrible sciatic / lower back and leg) but that pain has been managed by some nerve pain medication I was given after also going back to A&E and then seeing a GP who eventually prescribed stuff which worked. I've been on it for coming up to 2 months and am just reducing my dose down now.

Once the physical pain was handled I have been mainly dealing with a lot of fatigue and really frustrating tinnitus/painful oversensitivity to sound (I haven't had any vision-related issues really, it's been much more in my ears -- which was even the case when the bleed had just happened, so it must have been about the location of the bleed as to whether it affects our eyes or ears more! -- that's me guessing anyway).

 

My consultant appointment got pushed back from Feb 9th to March 3rd which was frustrating but yes still within 3 months of it happening. Looking forward to that and asking all the millions of questions i've been mulling over the last several weeks...

I'm currently still signed off from my job, which is coming up to 8 weeks, but have just this week started a very gentle phased return. My work was very stressful before Christmas and my boss has been very understanding at giving me some non-urgent, less-stressful tasks to get on with first, rather than diving straight back in. I definitely feel my capacity has been reduced, and like you have definitely had increased anxiety since it happened, some related to the event but some just very generalised anxiety..

 

Wedding planning definitely halted for a good month but we seem to be back in the swing of things now and hopefully all will be okay, by then! Exercise-wise I have almost ground to a complete halt, but am trying to figure out the best types of exercise to restart with. 

 

Thanks so much for commenting on my post, given our very similar experiences I'd be really delighted to keep hearing about how you're getting on and perhaps we can share things that are working / not working for us. 

Karin x 

 

 

[Jo_S]

Hey Karin,

 

I'd be very happy to keep you updated and, although I am not pleased that we have both encountered this, I'm very glad that we have the opportunity to share our experiences. After reading some of the detail on this forum, I now completely understand why we are left without much information when we leave hospital, as no one person seems to have the same symptoms or speed of recovery.

 

It's really great to hear that your recovery is improving; that you managed a trip on the tube, that your pain is subsiding and that you are starting your return to work with some small tasks - that's amazing! Do you feel like you have achieved a milestone?

 

Funny that you should mention Loop ear plugs.. I had them brought to me when I was in hospital and they have been with me ever since. I initially used them when I started going out and about, but I now seem to be OK without them and have them in my bag 'just in case.' I found that at first when in cafes/ restaurants it was quite difficult to follow a conversation with whoever I was with and my brain felt really quite bamboozled, but in general my sensitivity to noise seems to improving over time. Hopefully this will also be the same for you.

 

I too have a particularly stressful job, which includes lots of multitasking. I spoke with HR and my boss on Tuesday and I am keen to start my phased return next week. They have been so supportive and continue to be as they are really keen to make sure I go back at the right time. That being said, I have encountered a bit of a head cold this week and I feel like I have been set back a little - I've been feeling more fatigued than I have previously and I have also noticed the tinnitus more. I can't quite figure out if I'm going backwards in my recovery or if it's my brain reacting to the cold... time well only tell, I'm sure!

 

I realised this week that I am supposed to be going abroad when my follow up appointment is to take place. I suspect I should be able to fly, but I currently have an open question with the consultant as to whether this is possible. 

 

In some positive news, I haven't had another episode of the distorted vision. I had an eye-test (to double check) which confirmed anything happening with my vision is definitely all brain related. Anxiety hasn't been so bad this week too - I have been going on lots of walks and trying to focus on eating well. I find that if I start to have a weird feeling or sensation, I take a couple of deep breaths in and out to avoid any panic.

 

I hope this week has been going well for you?

 

Jo x

 

[KJ_online]

Hi everyone 

I wanted to hop back on here and say I got married 2 weeks ago and it all went really well, soo much better than I was expecting. I was definitely worried in the run-up to the wedding that my fatigue would be overwhelming, or my head/ears would hurt a lot, and I wouldn't be able to enjoy the day, but in fact it was amazing.

 

Obviously I was exhausted afterwards (I'm sure most people are after a wedding, regardless of recent brain haemorrhage!) but all things considered I am so pleased with my recovery and that I was able to have the wedding which we planned for without too many adjustments. I wore my earplugs as loud noise is still difficult for me, and the tinnitus seems to be fairly permanent now since my bleed. I did have some quite extreme ringing in the days after the wedding but I was expecting that, and it's slowly subsiding.

 

The exhaustion hit me heavily a couple of days after the wedding but definitely not as badly as I was expecting. I realised that I got married 5 months to the day after my bleed. It was a pretty great way to mark my recovery! 

I'm also now nearly back at work full time, but still finding long computer days tiring (more tiring than a wedding!) so am having to think longer-term about work patterns and whether I may need to shift into a role which is less screen-based before too long. 

 

Hope everyone is doing well.
All the best to everyone on this forum
Karin x

[Super Mario]

Karin, many congratulations on your marriage.

So pleased to hear that you coped extremely well.

[Tina]

Congratulations Karin on your marriage  ❤️

So happy all went well and you enjoyed your special day xx

 

Wishing you lots of love happiness and health and hope things work out ok with work.

Take care 

Love Tina xx

[jess]

Karin congratulations on your wedding 💑 

[Swishy]

Karin, congrats on your wedding.  So happy for you both