Subarachnoid haemorrage

[masonk]

Hi I am 37 and a year ago I suffered from a suspected subarachnoid haemorrhage. They never found the cause of the bleed. I am interested in any support from anyone who has experienced a haemorrhage. I suffer terrible head pain, fatigue, sensitivity to light and poor concentration. I really hoped I would feel better by now and although I am improving it feels like it is taking forever. Any advice you can give me I would really appreciate it

[JD1983]

Hi, I'm 34 and I had a subarachnoid haemorrhage almost 3 years ago. I had a seizure which was followed by a blinding headache with sickness, pain, weakness etc. After various scans at the neurology unit in Oxford it turns out I had a ruptured blood vessel near the base of my head, caused by an AVM (arteriovenous malformation). Recovery took a few weeks although it was a good couple of months before I was feeling well enough to go back to work. I still have the AVM but I'm working with some wonderful neurosurgeons in Liverpool and we've just completed a series of embolisation treatments to stabilise it. How long have you been having these symptoms? Are you due to have any scans to try and find the cause? My advice right now is take your time... stress and worry certainly won't help :o)

[masonk in reply to JD1983]

Thanks for replying it's been a year now. I have been discharged from neurosurgery because all my scans showed no abnormality it was only through a lumbar puncture that they found a bleed. I know I have been lucky I just can't believe it's taking so long to sort itself out

[JD1983 in reply to masonk]

If you can, it may be worth going back to see a specialist. The Walton Centre in Liverpool is excellent (thewaltoncentre.nhs.uk/), they specialise in neurosurgery and treat all sorts of different complications. It sounds like you're still in a lot of pain. Could you request a referral from your GP or your previous surgeon?

[masonk in reply to JD1983]

Thanks for getting back to me I have just been referred to a pain clinic so I am going to give that ago next

[mel-21 in reply to JD1983]

Hi

Would please tell me what's AVM stands for? And what scan could help you to diagnoses.

[JD1983 in reply to mel-21]

Hi, it stands for "arterio-venous malformation". This page gives a good summary: gosh.nhs.uk/medical-informa...

They vary between people, very often they are found in the brain although they can appear anywhere in the body (mine is in my neck). My AVM was diagnosed after a CT scan and MRI scan. I had no idea it was there until it ruptured. Have you been having symptoms?

[Tallywhistler]

I had my subacchnoid December 2014, with complications I was in and out of hospital for six month. Never found my bleed either but it was brought on by a heavy sneeze. Apart from initial bleed I was fortunate that it's been pain free although head colds still make me feel uncomfortable. Still troubled by fatigue despite retiring from work and able to sleep every afternoon. It helps being 58 now that I could draw down on my pension, I do feel for you. I was told 12 to 18 months for recovery so you are still course, good luck to you.

[masonk in reply to Tallywhistler]

Thank you very much and good luck to you as it's a challenge to live with

[Jan001]

My SAH was 10 years ago and happy & lucky to have survived but still fatigued and brain fog. Still struggle with brain recall and concentration. It was a good 12 months before I felt like myself again. No prior knowledge of my aneurism. It just burst as I was driving my car one day. Sudden massive pain in base of skull. Endovascular embolisation at Oxford. Scans now every 5 years.

[masonk in reply to Jan001]

Thanks for sharing and I hope you keep improving