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New to the group - NASAH 4 days ago


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Hello! I’m Nicola and I’m 39 years old, from Kent, U.K. 

 

On Tuesday, I was sat with my youngest child (I have a 2 year old and 5 year old) about to do bedtime when I felt a sudden excruciating pain. I knew it was different. I managed to walk my little one upstairs to my husband and eldest and get out that I had a headache.

 

I got down the stairs and felt like my head was going to explode. Felt very nauseous. I called 111 who sent an ambulance. They sat with me for a while but recommended I go to hospital with them for a check. Once there, I still felt horrendous and was in a lot of pain. Light sensitivity and neck stiffness also kicked in. I went for a CT scan and vaguely remember a doctor saying they’d found a bleed and that I needed another scan with dye to look for a cause.

 

I remember being terrified and crying and wondering how my husband and kids would cope without me. The second scan came back all clear for aneurysm thank goodness.

 

I spent that night on a trolley in A&E and it was awful. The next day I was sent to a ward and was told that the neuro team at Kings College wanted me there for an angiogram just to check again for a cause. Due to my age, non-smoker, healthy weight etc they didn’t want to miss anything.

 

I was transferred on the Thursday afternoon. Had the angiogram on Friday morning (yesterday). It was horrible and invasive and left me very sore, but I’m so appreciative of this amazing procedure, and our amazing NHS. I was keen to get home to my children and husband so they sent me home last night. 
 

I basically got no information though. One moment I was hooked up to a drip, the next a nurse came in and asked if I was ready to go… I asked to speak to a doctor to ask a couple of questions. He said that I didn’t need to report it to DVLA (!!! Seems that might be incorrect?) and the best thing I could do was draw a line under it and pretend it never happened. Listen to my body for tiredness etc. That’s it. 
 

Now I’ve slept most of today but have felt very guilty for doing that. I’m full of health anxiety. My head feels fuzzy and foggy and weird. Normal level head ache if I don’t take tablets. Sinuses have been full of pressure. Feel like someone is squeezing the sides of my head. I don’t know how I’m going to have the kids on my own come Monday, and I will need to drive the eldest to school which I’m not sure I should be…? It’s a short journey but I don’t feel like I can stand up and cook yet let alone drive.

 

I feel like it was hugely downplayed to my husband and I - so now his expectations are probably very unrealistic too, as mine certainly were / are. I just don’t really know what to do! I had this incredibly traumatic, brain haemorrhage (which still feels crazy to write) and although I am so lucky that it was a NASAH, I’ve been told to just go back to how I was prior to Tuesday and I don’t see how that’s possible. 
 

If anyone can help / relate, that would be amazing. I only found this wonderful site as I found a patient leaflet from Bristol hospital online which listed it. Kings gave me absolutely nothing. I mean, they were amazing, but bedside manner and send home left a lot to be desired.

 

Worth noting I was told I would be asked to go back for a scan in 6-8 weeks, which is reassuring. 
 

Thanks in advance and apologies for the essay - writing this has been quite cathartic! 
 

Nic

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Hi Nic welcome to btg sorry you have to be here xxx

 

In regards to driving I found this a uk hospital put

Can I drive?

The regulations regarding driving are put in place by the DVLA. Current guidance is that you must not drive and inform the DVLA that you have had a NASAH. The DVLA will contact your consultant for information regarding your health condition.

 

Gov.co.uk put

 

Surrendering your licence

You must surrender your licence to DVLA if any of the following are true:

your doctor tells you to stop driving for 3 months or more

your medical condition affects your ability to drive safely and lasts for 3 months or more

you do not meet the required standards for driving because of your medical condition

You can apply to get your licence back when you meet the medical standards for driving again.

 

So I am not 100 percent sure but guidelines change all the time ask your Dr xxx

 

It will get better but rest whenever needed and drink plenty of water xxx

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Hi Nic a very warm welcome to BTG :) 

 

So glad you found this site, it was a Godsend to me, to find others that have been through similar and understand how you are feeling. Like you i was sent home after a month in hospital with no information, just told to take Paracetamol and Ibuprofen. So very scary.

 

It is very normal to sleep alot in the early days of your recovery. Never feel guilty, bless you xx Your brain has been through a major life threatening trauma. It's trying to mend and function as normal. Listen to your body, be kind to yourself. Easy to say i know with two young children. As Jess says above, drink lots of water, it really does help with the headaches.

 

Maybe your hubby could read the posts on here so he also understands better what you have been through. Your brain needs time to mend. Especially with two young children, you will need as much support as possible until you are feeling more able to cope. Very early days for you in your recovery. Do you have family/friends close by that could help out a bit ? Things will get better and improve, just takes time :) xx

 

Re the driving, i was told to let the DVLA know and surrender my licence, but i had double vision. I think if your Dr deems you ok to drive, also the hospital and write a letter to confirm that, you dont have to surrender your licence, just notify them. Again, check with your Dr.

 

Good to know you have a scan in 6/8 weeks time. That will hopefully give you some peace of mind.

 

 Here is a link to  A Letter From your Brain: 

 

https://web.behindthegray.net/articles.html/inspiration/a-letter-from-your-brain-by-stephanie-st-claire-©1996-r167/

 

We look forward to hearing more from you.

Wishing you well with your recovery.

Take care

Tina xx

 

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Hi there

Warm welcome, glad that you found the site..

 

Cant add much more, yep listen to your body when it asks for rest dont fight it do just that, keep well hydrated sounds weird but does help,  knowing your not alone and others understand is fab, well I think it is and still do.

 

Try to relax, and rest plenty, dont feel guilty about resting, all aids in recovery..

 

;) 

 

 

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Hey Nic, 

 

I’m 33 and living in London. The same thing happened to me whilst I was in the gym in January. I’ve gone from having a crazy busy lifestyle; city Job, socialising, gym 5-6 times a week, to feeling like I’m in some sort of limbo and not knowing what I can and cannot do.


Like you, I had an angiogram (it’s the weirdest thing isn’t it!) which the doctors confirmed they couldn’t see anything. I was also not given much information after leaving the hospital and after recently finding this site, it has honestly so helpful. I’ve been back to A&E twice with certain symptoms but discharged with an OK from the neuro surgeons - they told me the process of recovery takes time.
 

This is very fresh for you, but I promise it will get better. I’m now 8 weeks in and I’m only just going back to a phased return to work, so make sure you rest a lot. I’ve had a lot of symptoms, which seem to be improving but there are some that still remain and I’m not quite back to usual self yet, which I’m finding very frustrating. 
 

I’d be very happy to keep sharing my progress if that’s of any help ☺️ 

 

My advice would be listen to your body, drink lots of water and sleep as much as you can at this point - sleep was the best medicine for me at the start. 

 

Wishing you a restful recovery!

 

Jo x

 

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Hi Nic...oh my goodness you have been through such an ordeal.  So crazy that you can be fine and then all of a sudden you have a NASAH...I had the same and they did not find a cause.  It left me as you explain but I did not have young children at that time. 

 

Good advice above to have hubby  read through some of the site.  it is difficult to take it all in and of course you and he wants you to recover as soon as possible.  The brain takes time to heal, it is slow.  

I can't comment on driving as I live in the USA and it is different here.  

 

So happy you found this site and that you are already able to reach out to us.  We are all survivors and care givers trying to support others.  I think you will find kindness and hugs here.  We are here for you.

xx

Jean

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Hi @NicolaR, really hope you are doing well. I'm glad you've found this site! I found it soo helpful when I came out of hospital. 

Like Jo I'm also 33 and living in London and also had a NASAH recently (December). 

I would really echo everyone's recommendations to take it really really easy, you are less than a week out from your event and at this stage many of us were still in hospital (or only just coming out) please please please rest as much as you can if you have support around you to do so! I am about 10 weeks out from my bleed and only just going back to work this week.

 

At your stage after my bleed I was unable to do anything much at all other than lie down. The symptoms have been a real mixed bag for me, hoping you don't get a lot of them, but I'm sure it depends a bit on where in the brain our bleeds were? I am finally free of most of them. 

 

I'm so sorry your doctors' bedside manner / being discharged left a lot to be desired -- seems to be the common theme with those of us having had NASAH that many of us are just told to go home and get on with life!

 

I feel fortunate that I had some great doctors at the hospital itself (I was at royal london) who did prepare me for the recovery journey being a bit rough (e.g. recommended I took at least a month of work, and now I have hit 10 weeks) but yes my family and I were not armed with much info and from my experience, GPs do not know a lot about these bleeds. 

 

This site has been so useful in realising that even though I'm sure the doctors of course know what they're doing when they say to us, get on with life, they don't prepare you for some of the weird symptoms / feelings in the head during recovery which after reading this forum I realise that so many of us have experienced on our route to recovery. Which did wonders for my peace of mind when I was experiencing them. 


Last week I had my repeat MRI scans and my doctors appointment back with the neurosurgeons and they have given me the all clear that the scans look fine and now that I know that, I really feel that I am able to 'get on with life'! So that is definitely a big relief. But it definitely has been a journey (mental and physical) to get here!

 

Re DVLA by the way, I didn't end up informing them (my doctors didn't tell me I couldn't drive) but I personally didn't drive for probably 6-7 weeks after the bleed, but that was just because I really felt I wasn't able to. 

 

All the best to you as you recover, and like Jo am happy to share any more of my experiences 

Karin x

 

 

 

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Thank you so much everyone for your responses!  It has been comforting and such a relief to share my experience with people who have been there already.  

 

Since my last message, i've had a call from the Occupational Health team at Kings who were very cross that i'd been discharged and hadn't been consulted by the neurologists.  Apparently they hadn't been informed, and neither had the brain injury team. 

 

So i've now been referred to my local neurology team who called me today and have put me on the local referral list (apparently there's quite a wait), and are looking in to whether i am able to be referred to the neural psychology team.  Not sure what they do but we'll see!  I also have a GP appointment tomorrow so will talk to them about driving.  

 

I'm still struggling with lots of symptoms at the moment but understand - thanks to you all - that this is to be expected.  Main things are:

 

  • headaches - sometimes pressure, sometimes ice pick headaches
  • fatigue
  • nausea if i stand / walk for too long or feel overstimulated
  • pressure in my head - almost like i'm upside down, or have been for too long
  • very stiff neck and shoulders - is it safe to have a massage?  Another thing i might check tomorrow
  • problems sleeping - i find headaches and anxiety are worse at night and my sleep pattern is a bit messed up from being in the hospital
  • feeling like i have things crawling over my head or someone tickling my my head
  • sudden rush of warmth in my head
  • horrible brain fog - like i'm thinking through treacle
  • huge anxiety - fear that this will happen again, or that they've missed something else more sinister, or that this is because of something i've done or not done
  • feeling totally overwhelmed and overstimulated by lots of noise, lots of people etc
  • just a general feeling of being totally vulnerable in a physical / health way
  •  

Are these all normal? I'm guessing they are.  I've probably missed some stuff out but trying to remember them all is difficult with this foggy brain!

 

@Jo_S and @KJ_online it would be wonderful to keep in touch and hear how you're getting on.  It's so frustrating to have no information!  I just keep thinking surely there must be some kind of reason.  I guess that as it's not life-threatening and doesn't cause permanent changes (from what i've read so far), no research goes in to this kind of haemorrhage as there's so much work needed for brain injuries or illnesses that are so much more serious. 

 

But yes, let's chat and compare notes.  Anything you come across that has helped too, let me know.  I'm an aromatherapist so am trialling some analgesic oils and ones that are really good for focus / anti brain fog.  I'll let you know if you fancy anything that's good to use.

 

Thanks everyone again, you are all very much appreciated. 

 

Nic xx

 

 

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Nic

 

The symptoms you described in your last reply are all common and the same after I had my SAH.  Patience is hard to have as I have had to wait for follow-up appointments.  My initial neurosurgeon advised unless I have another “Thunderclap” headache then it will run its course which takes time.  Good luck in this unwanted adventure.  GB

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Hi Nic, your symptoms sound very much par for the course. I too had a NASAH though mine was complicated by Hydrocephalus and having a temporary drain inserted. I have a lovely dent in my forehead to remind me now - not that it's anything I would be able to forget!

 

As others have said it's really early days for you and I am glad the Occ Health team have been in touch. The service they are referring you to is Neuropsychology. I wasn't referred until a year post bleed but found it the best thing for my recovery particularly with work. She has been an amazing support for me - we still speak now!

 

Make sure your family and friends are aware of how long your recovery may take - get them to look at this site or even google subarachnoid haemorrhage. I can't believe they discharged you with the advice to forget it happened. I sometimes think these doctors need to do a bit of research!

 

Take good care, rest up, drink plenty of water, get as much help as you can, particularly with the children, and be kind to yourself. My heart goes out to you.

 

Clare xx

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