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.
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.
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,
Thank you Ann 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.
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.
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.
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,
I had a Subarachnoid Haemorrhage when I was aged 46. I was in intensive care in a coma for about a month. I was lucky to survive; the day after it happened my wife and two young children came into the hospital to say goodbye because I was not expected to survive. I was lucky because the damage caused was not more extensive; I have partial paralysis down my right side (I’m left handed / sided). I’m also lucky because there was no cognitive damage; I obtained several post-graduate qualifications afterwards and am still working full time at 71. Also, because of my age then, I was lucky to get a lot of rehabilitation. And, rehabilitation is the reason why some stroke survivors are able to make a reasonable recovery, while all too many, particularly older survivors, are written off.
Hoping you can get the rehabilitation you need and can make the best recovery you can.
Thanks @DavidHearnden - this is pretty much how we are seeing it. Patients are grouped by “real” age rather than biological age. My Mum did not get any re-hab or physio because she was nearly 90 when she had the stroke. It did not help the stroke was “massive” (the medical term escapes me) and a significant amount of her brain was damaged leaving her right side paralysed and with aphasia etc. It was a battle to get any sort of basic re-hab and physio support. She was pretty much “written” off and we were told to grieve for her and kept getting told our expectations are unrealistic when we tried to explain before the stroke she was living like a 50 year old - totally active, healthy, fit. Nobody believed she was nearly 90.
Well for what it’s worth and despite all the hurdles put in front of her, as I write this she is sitting out in her riser recliner chair and having her lunch.
I am sorry that I got carried away on the age discrimination element of your response
Thanks for sharing your post, [which did give me the opportunity to talk about age discrimination - something I care about very much] and it’s great what you achieved having been “written off” - again something that pretty much happened to my Mum - sorry here I go again, please forgive me
I just wanted to congratulate you on all you have achieved post stroke - it is truly impressive and I love the fact you are still working (through choice I expect) full time at the age of 71. Long may it continue
I wish all the very best and again thank you for giving me the opportunity to air some of my grievances
I have spent the greater part of my working life working with and for older people and continually challenging ageism. In my current role, I try to get NHS funding for older people’s continuing care.
However old you are and regarding stroke however dense the stroke is survivors can still benefit from rehabilitation, if only in small ways. Small benefits are better than no benefits at all. The NHS doesn’t spend enough on rehabilitation, which is why people have to pay for private therapy if they can afford to or go without. Better to ask for a referral for therapy than just accept being written off.
The age piece has always been an issue I think but even worse now that NHS funds & resources are toghter than ever. I really don’t envy the people having to make these difficult decisions around whete to target resources. We all want the best care for our loved ones irrespective & @ManjiB your lived experience is a reason why everyone shpuld be given the support they deserve. I am in awe of all you have achieved with your mum & I know it has been through sheer hard work & determination.
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.
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.
