Subarachnoid Haemorrhage

Hello everyone. I’m new here :wave: 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! :flushed: 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 :blush:

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Hi @Bigmugoftea & welcome

Your tome will take quiet some reading¡ to reply properly

In the meantime you might find the welcome post useful
:slight_smile:
Caio
Simon

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Hi @Bigmugoftea & welcome to the community. You sure have been through it but sounds like you’re moving in the right direction.

I had a different type of stroke to you so have no advice soecific to your type of stroke. There do seem to be some common after effects of stroke so if you have any questions ask away.

Thank you for sharing your experience. It will help others I am sure.

I hope you’re receiving all the medical help you need & here’s to many more improvements for you yet.

Best wishes

Ann

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Hello Bigmug,

that’s a very rare form of stroke, Sub-arachnoid hemorrhage after CVST. I hope your recovery goes well (eyesight / mobility, etc). I would be interested to know what condition you are now after 5 months, and what you are doing to help your recovery. Obviously you went through a lot, but I wish you far better days ahead,

good luck, Roland

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Thank you Ann :blush: I am gradually getting better. Not really receiving any medical care. I don’t get a follow up until 12 months which seems ever such a long time when you’ just been through a traumatic event! I’m not sure if that’s normal or not.

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Thanks for your reply Roland. My mobility is mostly ok after 5 months. I have my balance and can walk well. I struggle with getting up and down off the floor but I think most people do anyway! My eyesight is still causing me some difficulty and I think this is where a lot of my headaches are coming from. I was due back to ophthalmology in May but when I was finally given an appointment, it’s not until the end of July! I’m currently undergoing therapy for PTSD related to the seizures I had. I suffer terrible flashbacks. However the therapy is good and I feel I am improving. I suffer with fatigue, which I believe is fairly standard, and short term memory loss. I’m not back at work yet but this is due to the nature of my work and the long hours.

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It is a long time but seems about standard. I’ve heard of some people not getting any follow up at all it doesn’t seem enough when going through something so large.

Glad you are slowly improving. Long may that continue.

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That’s great. In my case balance and walking are a work in progress. I too have problems with an eye, but I don’t suffer from fatigue (Shilajit is good for this), nor seizures. Terrible flashbacks, well certainly, but the more you go over it, the more it settles, especially (in my case) the more I learn about my condition; it’s empowering. Plus I now know the names of many bones, joints and nerves in the human body. I have basically had to learn to walk… but this time I know why a heel strike is the preferred method.

I think you’re right to want to learn more about your condition, and possibly meet someone who went through a similar ordeal,

wish you a great recovery, ciao, Roland

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Not in some areas of the country & it is in others.

There are published care pathways that health boards are expected to follow. They should be held to account and the government should be held to account to provide the resources needed. This is politically the time to make those demands too.

It’s a shame we have not held the stroke association to account for how they’re doing so far. As the largest organisation that they seem to have de facto claimed being our representative :frowning:

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My friend had a very similar stroke to me a few years ago and she had a check at 3, 6, 9 and 12 months! It really is a postcode lottery!

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