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Hi there

is there anyone who can tell me how much medical support to expect normally post NASAH in the UK?

i had mine end of June 2020 and reading posts on here I feel I’ve had little support - maybe becos of Covid?

  • I called my GP 4 days after discharge from 5 day stay in hospital. They didn’t call me despite having my discharge notes.
  • I have had 2 x 10 min phone consults from the GP and tho he is very nice he’s told me SO little. The hospital just said go home and rest
  • An 8 week FOllow Up by hospital neurologist is not confirmed because....“we don’t know when as we are very behind because of Covid” said the appts lady.
  • i recently learned I’m not supposed to drive and need to inform DVLA - from this site not medics
  • i also read on here I should maybe be drinking 3 litres fluid per day

 

what else don’t I know or should I be doing/expecting support wise? Has anyone had any support for anxiety or psychological impact?

 

thanks for being here :o))

 

 

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Hi Carolyn,

 

I had my SAH in December 2017 but wasn't diagnosed until January 2018 and only had 1 night in hospital (I'm not sure my experience is typical in that respect. I only went to hospital after the 2nd thunderclap headache where I had a clear CT scan & lumbar puncture. It was only after the 4th thunderclap that I was booked in for an MRI and then that didn't happen until after the New Year holiday).

 

I was discharged from hospital after the one overnight stay with no advice and painkillers/anti nausea meds to last 3 days. I made an appointment with my gp to get more drugs as the headache was still there & got prescribed amytriptyline.

 

After seeing the neurologist in Jan 2018 I was given no more advice and wasn't told I had to let the DVLA know. I still see my neurologist (waiting to see about the appointment I'm due now) but have definitely had more info from here. At the last appointment he recommended a change in dose of medication via the GP and they wouldn't do that until his letter arrived with them, but even when I received the copy I had to chase with them for an appointment.

 

My GP practice does insist I see the stroke nurse annually, although this was due on 23rd March and reasonably got cancelled. I've not been contacted by them to reschedule or have a telephone/video appointment.

 

While no medical advice is given here on BTG I have definitely found the support and non medical suggestions for coping more valuable than anything anywhere else. The importance of drinking enough water/soft drinks is the best thing I learned here as is the message that it is okay to not be okay and that progress/recovery is not linear.

It is also reassuring to know that on here there is likely to be someone who has had a similar journey who can reassure you.

 

I finally realised I wasn't coping mentally about 18months after the original event and did reach out to the local mental health team. I received some great help in learning to process the event and help with the stress/anxiety/ptsd I was diagnosed with. I wasn't referred by the gp or specialist tho I did it all independently.

 

So in short your experience with follow up care does look like mine pre Covid, but I had an unusual journey to diagnosis & not a long time in hospital.

 

Take care of yourself and keep asking for help/advice here and with your medical team

 

Sarah

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Hi Carolyn

 

I was discharged from hospital with absolutely no information on what had happened to me, what I should /shouldn't be doing or what I could / couldn't do.  My "physio" before I was discharged was walking up and down half a flight of stairs and being able to take myself to the shower and the toilet.  A pile of tablets were pushed into my hands and that was that.  This was 14 years ago and no sign of COVID anywhere!

 

Like you, I got more information from this site than from anywhere (and there were only 9 members when I joined!).  In the last 14 years I have had two MRIs - the last one 18 months after my SAH and have no contact with any specialist since.  I took myself to my GP when I began to feel anxious and depressed and was diagnosed with PTSD and referred to their therapist.  He was amazing. Despite this, I still maintain that it was this site that got me through.

 

Fluids and rest of most definitely the most important thing right now - as is trying to keep a sense of humour.  Our dear departed Win, would also tell you to sing when you're feeling down or anxious - and its actually been scientifically proven to help.

 

We're all here for each other with support and encouragement.  Have you popped into the Green Room yet?  Karen (our wonderful founding member) set up a forum on here where we could just go in for a daily chat and laugh - it's helped everyone enormously by distracting from the medical side of our situation.  If you haven't visited yet, make sure you do.

 

Keep posting, and remember, we're here for you every step of the way.

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Thanks guys Very lovely to hear from you. at least I don’t feel it’s simply a Covid thing!

spoke to GP today who is chasing the consultant neurologist who saw me to see if I can get to chat to him As my out patient appt could be months away!
Driving - GP says he thinks I’m prob fit to drive. Will await official confirmation but won’t advise DVLA because I’m OK again so why tell them?

Like many I’m still struggling with realisation this isn’t going to be a quick fix - can’t get my head round that!

Anxiety - hmmmmm that usually becomes more startling as I tell people and experience their “**** that’s serious” reaction! And putting that with the general fear it might happen again.....


When did you start living more freely and less like a recovering person? How long after the event? And what sort of mental support have you found useful? 
 

Thanks again

onward and upward

 

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34 minutes ago, Carolyn250 said:

Driving - GP says he thinks I’m prob fit to drive. Will await official confirmation but won’t advise DVLA because I’m OK again so why tell them?

It is a legal requirement to inform DVLA regardless of what you may think.

See the DVLA site

https://www.gov.uk/brain-haemorrhage-and-driving

Your insurance will be invalid if you haven't informed them of the SAH.

Not worth the risk.

 

Sorry to seem harsh but the law is the law.

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Fear it will happen again is perfectly normal :-).  As for living more freely, well, that depends on your state of mind.  My husband loves nothing better than to tell me that I recovered so well because I'm as stubborn as they come - I tried not to let it stop me doing the things I wanted to do.  There were times when I paid for it after - exhaustion, fatigue, headaches etc, but I was determined that I was not going to let it stop me living my life.  My aneurysms are referred to as "doo dabs" by my Dad and "monkey" by my daughter ( who was 9 at the time and is now 23). Three months after mine I went to a Pink concert - I'd paid for that ticket and no way was I going to miss out!!! :-) 

 

Remember, we're all different - our bleeds are all different and our aftermaths are all different.  I've been very lucky in so much that I live my life like I did before - the only thing I notice is that my memory, which was near on eidetic, is now no where near as good (to me, whilst others still think I have an amazing memory).  Recovery is relative to you and cannot be compared to anyone else.  Do what is best for you to recover and, above all, listen to your body and your brain.  Macca (Mod on here) once said that it's not about grieving who/what you've lost and being limited by what you cannot do, it's about being grateful for surviving and forging a new you with new limits - very wise words.

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Thanks Skippy

i fully plan to live freely - I’ve no intention of being defined by this but I guess it’s early days although tbh I thought I’d be back to normal by now!!! Lol silly me!

thanks for the inspiration and wise words x

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Hi Carolyn,

 

Remember fluid is in foods too, so it doesn't necessarily mean just water. Tea and coffee, fruit juice,milk etc is ok. There is also water in melons and cucumber, fruit etc etc.  Just drink small amounts regularly throughout the day, as well as taking in foods that contain water.

 

Time is the great healer in this, and everyone is different in this regard.  Resting well is as important as exercising well, but get the advice of your own doctors before embarking on any exercise regime.

 

Doing what you want to do, and what you need to do, are sometimes very different things and doctor knows best!  Also listen to your own body and stop if and when it tells you to!

 

All great advice above, I hope it has helped you. Mental support is vital, and we all benefit from sharing experiences on here.  If you are on your own, don't let things build up inside you, or let your imagination run away with itself.  You (we) need to balance our own thoughts and you do that by talking to others who know and understand what you are going through. that is why this site is so valuable.  You come across people who have the video and the T shirt, so to speak.

 

If you feel you need to talk, come onto the site and say what you feel, tell your problem and someone will answer you. We just can't give medical advice that's all.

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Hi Carolyn,

 

I didn't find out about the driving thing until my first appointment with the stroke nurse, well over a year after. Although I had a licence I wasn't feeling well enough to drive even by that point and so hadn't looked at the info here or realised I had to let the dvla know. Oops! They were nice about it and I did get my license back but I've lost all driving confidence (never high in the first place) and still haven't driven. It made job applications tricky but I now just say I don't have a licence!

 

As for the fear/anxiety I definitely found the counselling help. It has given me ways to break out of the thought pattern that every headache is a new bleed but it is still there to some extent.

 

I do get anxious when I get a bad headache out of nowhere in the same area that hurt at the time, I can handle headaches that build but the ones that sneak up on me unawares or that I wake up with do still cause a bit of panic, which of course increases the pain. This is also where the counselling came in useful. I have a mental checklist of things to check and should a certain threshold be reached I have a plan of action...

 

The fatigue and mental woolliness have actually been harder the learn to live with, and I do still tend to over do things on some days and pay for it for a lot longer afterwards but I'm gradually learning to both pace myself & to not beat myself up when I over do it.

 

Fluids, rest & listening to your body are essential but so is asking for help when it all gets too much.

 

take care 

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  • 4 weeks later...

Hi Carolyn,

 

When I decided that I could drive properly - with one eye, at the time - the only way I could progress this was to contact DVLA.  Initially they said I could drive, which I did for 2 weeks.  However the consultant then wrote to my GP saying I couldn't drive - because he hadn't tested me.  I span out out control - having been given my lifeline back (no transport in Dumfries and Galloway), causing trouble at my work.  I went private to get tested (about £200) and that fixed the problem within 2 weeks.

 

I don't know if that would be able to help you by getting tested privately right now.  Possibly more access that way?

 

I'm suffering from anxiety and depression just now - mainly due to no job, and my worry originates from the lack of consultant affecting my mental health, leaving me worried that I'm not normal.  My mum insists I am normal.  A job would help me feel normal.  This isn't anything to do with SAH, it's to do with IR35 and COVID.  But is it?  That's what goes around in my head.  I'm applying for jobs right now.  Maybe I will stop taking anti-depressants when I get a job.  We will see.

 

I agree - remember to drink, eat and sleep.  Don't forget!

 

Fiona xx

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Thank you so much for your continuing support.

I have posted an update in 'Adjusting mentally' so won't re-do here

However what I would say about having a NASAH in the time of Covid is that I think you are required to push that little bit more.

 

Covid backlogs meant that I wasn't even on the list to get an appointment for a follow up, never mind have an appointment!  So I searched for my consultant named on discharge notes to see if he practised privately. He did so having spoken to him I feel like I have had my follow up! He also had my notes with him which was helpful and diligent on his behalf. Impressed

 

DVLA - both GP and consuktant have now appended to my notes that they believe I am fit to drive. Both confirmed that since I hadn't advised DVLA as yet, there was no need to do so retrospectively as I am now fit to drive again medically.

 

I have also spoken to Headway - not really relevant for me but useful to feel I had tried all avenues. And at least consistency in limited info available. Not cos they don't know but because everyone's experience is SO different it seems

 

So thanks again and onward and upward as ever

Carolyn x

 

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https://web.behindthegray.net/topic/6862-sah-informing-the-dvla-uk-only/

 

Link to the 'Driving after SAH' topic for your information as it covers notification to DVLA. 

 

Also consider your insurance policy which may have different terms than the DVLA rules, you may need to notify them - check your terms and conditions. Hope this helps.

 

Macca

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20 hours ago, Carolyn250 said:

there was no need to do so retrospectively as I am now fit to drive again medically

 

Please, please please be aware that being fit to drive medically can change instantly when fatigue is a constant companion. I have had times when I've driven somewhere but can't face the drive back because of the mental torture of dealing with everyday traffic. 

 

Sometimes it's good to push yourself through tiredness and fatigue, but not when you're behind a wheel. I'm sure you won't put yourself at risk after surviving SAH and being on the road to recovery. I think that you'll find at 65 weeks it all looks different from 65 days...

 

Keep up the good work. :-)

 

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Oh blimey worry not. I’ve driven 3 times so far and just locally and only when my brain feels clear and with a fall back plan in my head! I haven’t lost confidence in driving but I know I need to consider my head state each and every time. I’m a long way from being a “hop in the car whenever I need to” driver again!!! 👍👍

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