Rachathers

[Rachathers]

My Subarachnoid haemorrhage happened on 26th Feb, I was at work and all of a sudden had the worst headache imaginable. I managed to get outside where I was met by my husband ( who works at same place) and 2 of the shift managers, all I could do is clench the back of my head and neck, my throat felt like it was closing up and I remember I was crying.

 

My managers told my husband to take me straight to the hospital which is what he did. Owing to covid restrictions he wasn't allowed past a&e car park and was told to go home. I was left alone, in pain and frightened. It took an hour and half to be seen by the triage nurse who gave me 2 x paracetamol, and although my BP was through the roof told me it was probably a migraine and to wait back in the waiting room.

 

 At this point I was questioning my own symptoms and thinking how stupid I'm gonna look going back to work and telling them I had a migraine at the same time the lights and the sounds of people talking were driving me insane. 4 hours later ( total of 5 1/2) to see the doctor. I was called in and as soon as I told the doctor what happened I was straight down for a CT scan where it was confirmed I had a bleed.

 

I was awaiting transfer to another hospital which specialises in neuroscience but to be accepted had to have a negative covid test. After having 2 covid tests as the first test was a normal test which results could take 48 hrs and I was supposed to have a fast track test so I could start treatment that I needed, and waiting for transport (first lot of transport refused to take me because of the diagnosis as the wrong hospital transport was first booked)

 

I eventually made the neuroscience high dependency ward 24hours after I initially got to a&e. The care I received there was fantastic, I was on complete bed rest laid flat on my back and catheterised from the minute I arrived, this was all overwhelming as at the previous hospital I was able to walk around, go to the bathroom independently basically just waiting and using up a trolley until I was transferred. I was taken for another CT scan and had an angiogram which showed no aneurysm. Consultant said it was a spontaneous bleed with no known cause.

 

After 10 days in hospital I was discharged, it's still early days but I was expecting to be better by now, the fatigue is immense and even though I was warned about the after effects I'm still quite shocked how debilitating the tiredness and the continued headaches are. My short term memory is shocking and I can't concentrate for long. I'm hoping this doesn't continue for too much longer as I need to get back to work to earn money, I'm getting SSP at the moment which is not sustainable for too long.

 

I'm glad I came across this forum, reading about other people's experience has put my mind at rest as I was worried about the continuing symptoms but realise I'm on a long load to recovery and realise it's not a race to get better and that I need to listen to my body.

[keyo]

Rachathers - it’s definitely an exhausting and frustrating time. I wish you well and I’m glad you got good care. 

[Tina]

Hi Rachathers 

 

A very warm welcome to BTG  glad you found us too.

 

11 hours ago, Rachathers said:

 

I'm glad I came across this forum, reading about other people's experience has put my mind at rest as I was worried about the continuing symptoms but realise I'm on a long load to recovery and realise it's not a race to get better and that I need to listen to my body.

 

We look forward to hearing more from from you.

Wishing you well with your ongoing recovery.

 

Take care

Tina xx

[Kathy]

Welcome. I am from the States, so emergency medical serivce may be different ~ but, with covid there are changes.

 

I am so sorry you were alone through the onset of your medical emergency ~ it always helps to have someone there to advocate for a person and be a source of support. Glad you have been released and now in recovery.

 

Don't be too hard on yourself. It is most important to let your brain "rest" and drink lots of water. Follow dischange instructions.

 

It takes awhile to return to a regular routine, and for some of us we cannot return at the pace we had once lived. I hope you find encouragement and helpful suggestions at BTG as I did (3 years post SAH).

 

Best wishes, Kathy (Colorado)

[Colleen]

Welcome to the site.  I'm also in the States and cannot imagine what you had to endure due to the COVID.  During my time (12 yrs ago), my husband was constantly present except in ambulance and life flight.  Doctors kept him constantly apprised of what was happening.  These days I pray to not hurt myself or have any other reason to go to Emergency, the stories are so scary.

 

I hate being a bearer of negative news, but recovering from SAH is not like getting over a cold or even a migraine.  It takes time for the brain to settle down, heal, and feel better.  As you've no doubt discovered, pushing too hard delays the process.  i tried doing too much and ended up breaking a bone in my foot from tripping due to fatigue.  So take good care and take it slow.  Your long term health is more important to your loved ones than you think.

 

Best wishes, Colleen

[Carolyn250]

Hi there

I’m based near Leeds in UK. I also had my bleed in covid times which was tough cos it means you’re alone in hospital - well done for getting through that 💪

 

i have found that different NHS areas have different levels of support and in my case it was non existent. I was SO relieved to find this forum.

 

It’s so true, the bit where everyone says it’s early days - I thought I’d recover quicker but I didn’t. I’m 9 months in and tho significantly better I’m still fatigued, headachy and at times a bit low. I also still panic it might happen again but that is reducing slowly. And I don’t feel like the same person. Everyone is different but Feb is no time at all to be “back to normal” or back to work. I called my GP after discharge and he said take 2 weeks off. Lol ridiculous! Headway advise 3 months minimum.

 

Normal will be the new normal and for me I’ve not even got there yet either. I am fighting the acceptance that I can’t really work any longer. I had to reduce to one day a week. I don’t qualify for furlough or any SSP we’ve just had to manage. I don’t know how you are supposed to I really don’t but again you are not alone. Have you called Headway the brain injury charity? Do. They may be able to help and advise you and it’s free. They are lovely 

 

Push your GP to refer you for neuropsychology - it’ll be absolutely ages before you see someone - I’m still waiting - but I think they are the only ones who know enough to be of any use to you going forward. 

I had no hospital follow up, no advice apart from here really and that which I chased up myself and to be honest tho the NHS were fab while I was in hospital, I now feel totally abandoned! 
 

But on a positive note - read the advise abs stories on here - it gives you a sense of what’s typical and do gave me a real feeling of calm. Come back when we you feel the need

 

Drink water, rest whenever your body or head tells you to, it’s a marathon not a sprint. There’s no way to speed it up but accepting this might help too

 

take care

 

onward and upward