Hello everyone. I’m new here 
I joined up after hearing about the online community from people on the stroke association zoom activities . I thought the best place to start was with my story! It’s a long read but when I wanted to find out more about what had happened to me, there is so little information about my type of stroke so I hope my story can help inform others.
On 20th January (1 week after my 41st Birthday) I started with sinusitis which I get regularly. I slept for a week and vomited every hour for a few days. The GP prescribed antibiotics over the phone but said if I wasn’t better in 24-48 hours to go to the walk in centre. I ended up at the walk in centre on 25th January. Whilst waiting there I went to be sick in the bathroom and noticed someone hitting me in the head. It turned out it was my arm that I had no control over! I came out and tried taking a drink except I didn’t take off the water bottle lid and tried putting it to my cheek to drink. My husband went to reception to say something didn’t seem right but we were told to sit back down as I was fine. I was burning up so went to sit just outside the doors where I could still hear my name being called. Apparently I walked outside like a puppet on a string so my husband went back to reception to say something really doesn’t seem right. They realised he was right and helped me on to a bed and this is when I lost mobility down one side and I realised I couldn’t answer basic questions. They called an ambulance and when one paramedic said to the other “Do you want to phone the stroke ward and let them know we’re coming?” I thought we were picking someone else up on the way as I didn’t realise I was having a stroke! I thought we were picking up someone who was. I remember thinking “Where will they sit? There’s no more room in here”. In the ambulance I regained mobility down one side but lost it in the other!
I had a CT scan on arrival and that confirmed I had extensive CVST (lots of blood clots in the venous system of the brain) This stopped the blood in my brain from draining and caused high inter cranial pressure which resulted in a subarachnoid haemorrhage. A rare type of stroke.
I stayed in A&E all night and then went on to the acute stroke ward early the next morning. That afternoon I had my first tonic clonic seizure. I had 4 in total over the next 3 days including one inside the CT scanner! 
I then had an MRI scan to check what was happening. The MRI confirmed nothing had got worse and that things were as they expected. I have been put on the maximum dose of Levetiracetam (Keppra) and this has stopped the seizures so far. It was after the seizures stopped that I started to get mobility back in my right hand side. I lost mobility in both sides but never at the same time. However the seizures affected my ability to speak. I would answer but just one word and would take a long time to answer.
After the seizures were under control occupational therapists and physiotherapists started to visit me daily. They tested my mobility and cognitive ability. I was bed bound for a week and then had the catheter taken out to use a commode and gradually worked up to being able to walk to the bathroom first with assistance and then independently.
Another couple of things that happened was firstly damage to my vision. I have papilledema which is a swelling of the optic nerves and optic discs. This was caused by the high inter cranial pressure. I went from needing glasses occasionally to now wearing them all day every day I also had a nasal endoscopy (a camera up my nose) where they confirmed I had had sinusitis and also had adenoiditis.
I was in hospital for 11 days and am now on anti seizure medication and blood thinners. I am also still under ophthalmology for my eyes/vision.
I found it really hard to find stories about people’s experiences with a subarachnoid haemorrhage so please feel free to get in touch if you’re looking for information or want to ask me any questions. Obviously I can only answer on my own experiences as every stroke/subarachnoid haemorrhage is different but I will definitely help where I can.
Looking forward to getting to know some of you 