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Hey! I'm Jo I'm 33 and based in London. I've commented on a few posts previously and intended to write my intro... so here I am (albeit a little late!) I love CrossFit; I was in the gym on a Thursday morning at 6 am in early January and we'd just finished doing pull-ups. All of a sudden I had this rush from the back of my neck over the top of my head to my forehead, my hearing went funny, I lost my balance, I felt nauseous and as if I was about to pass out. I tried to crouch low to the ground (thinking I was going to faint) but it didn't stop and I stumbled to the corner of the room where the coach came to help me. My body was shaking and my heart rate on my watch was at 128bpm and increasing. Lying on the floor seemed to help and someone in the gym gave me a few sweets, thinking I had low blood sugar (after all it was 6am in the morning) but after some time on the floor I tried to get up again, the colour drained from my face and I felt like I just needed to be horizontal. I wanted to go home and sleep it off, but my friends in the gym took me to A&E. The car journey was only 8 minutes, but it felt like the longest journey. I lay on the floor in the A&E waiting room and was eventually seen by a nurse - the rest is a bit of a blur, I had a CT scan that confirmed a bleed on the right side of my brain and I started vomiting. After a second CT scan (with dye) I convulsed whilst vomiting and came round with vomit all over me. I felt that this was my low point, but things seemed to get better after this - my body stopped shaking and I felt less pain with the intravenous morphine and anti-sickness. The CT scan came back clear of any bulges in my vessels, so I was told it was probably a weak blood vessel that burst, but I was transferred by ambulance to a specialist hospital for in-person review. I had no surgical intervention. I waited all day in A&E for a bed on the neurosurgery ward and had to wait for an angiogram the next day and in the meantime, I started taking Nipodomine. My friend from the gym stayed with me the whole day until my mum arrived - she had googled 'subarachnoid haemorrhage' without me knowing and refused to leave my side. I don't know what I'd have done without her! Friday morning I was woken up at 6am and told to 'prep for theatre.' This was a rather scary thought. I was nil by mouth, I hadn't eaten properly since Wednesday evening and it seemed that the thought of eating helped me to get through! I'd not long bought my first property (solo) and, with thoughts running through my head, I brain dumped everything to my mum in a text message (my poor mum.) The angiogram was around lunchtime. The nurses were so nice and the radiologist told me that he would let me know straight away if he could see anything, which he couldn't and the consultant confirmed this to me later in the evening. I found the angiogram to be the weirdest experience, not knowing if my head was attached to my body was definitely an extraordinary feeling! I slept most of the time that I was in hospital - the eye mask and ear plugs that my friend brought to me in my hospital bag were everything I needed. I was discharged on the Monday and left hospital armed with a brain injury leaflet and paracetamol. My mum stayed with me for two weeks following this. I'm not going to lie, I was SO apprehensive when leaving the hospital, I just couldn't comprehend what had happened. The sciatic pain, which everyone seems to encounter due to the blood following centre of gravity and irritating surrounding nerves, started immediately after leaving hospital but this only lasted for about a week or so along with what I can only describe as flashing head pain, which was mostly during the night. I onlnitus, y took paracetamol regularly for around a week. I started to feel more normal within 2 - 3 weeks, but I had lingering issues including: Fatigue Tinnitus in right ear Light sensitivity (I can't stand bright lights even to this day - it makes me feel unwell) Sound sensitivity (this has now passed) Feelings of 'brain freeze' (like when you eat icecream) Loss of short term visual memory Brain fog (weirdly, I can't do maths anymore??) Subconcious anxiety (I think I panic at the thought of feeling dizzy or unwell) Jaw clenching and teeth grinding Twitches in my right eye (this has now stopped) Fast forward to today, I am now four weeks in to a phased return to work. I have a busy job in the city of London and I am trying to slowly get back to normal life. I have given up drinking alcohol and I'm too scared to lift heavy weights yet (I was told by the consultant I could do this after 8 weeks..) but I'm using this as an opportunity to become the best version of myself. Although having said this (!) I think I have hit a bit of a brick wall this week. I have been trying to do some cardio classes at the gym, I'm a little stressed with modern day life and I tried to increase my days of work, but I have encountered debilitating anxiety, to the point where I felt like I was in a constant state of panic and I couldn't make it to the office - I just kept thinking I was about to pass out. I got myself checked out for piece of mind and I had confirmation that it is indeed anxiety. Perhaps I have mentally and physically exhausted myself. I'm feeling confused about whether this will last and that I have to accept a new normal, or, if I'm running before I can walk and it's just too soon? Who knows.. I've been trying to be so positive about what has happened, but as someone who was so active and can't sit still, I'm finding it difficult to sit back given that I'm 'physically fine.' Would be interesting to see if anyone else has experienced this. I'll leave it there for now. I've found this forum very helpful so far and hopefully I will continue to do so. Nice to meet you all 🙂 Jo x

Hi, I'm not sure if I should post here or in the avm section but here we are.... Three years ago I had a large avm removed and suffered an SAH during the 14 hour op. Because of the SAH I completely lost use of my left side and had to spend six months in a rehab hospital learning to use my left arm/hand/leg/foot etc again. A horrific time and one which still terrifies me today. Three years on I'm still suffering the after effects of such a huge ordeal. I can walk unaided (albeit a bit clumsily) but have v little use of my left hand and only some small use of my arm. I have many other problems due to the avm/SAH but I'm just detailing the physical problems here for purpose of this post. After the craniotomy the hospital did a follow up angio which they were surprised was clear (the prof thought there'd be some residual avm left). Then two years later, I had an MRI with contrast dye as another check to put my mind at rest. They told me the MRI doesn't show up small parts but they were 95% sure it was gone. He slso was satisfied an angio wasnt needed. I was happy enough with that and was discharged. However, when I saw my rehab consultant (6-9 monthly check up) I told her I had been having headaches lately and had noticed again a slight noise in my right ear. The avm was originally found because of a v audible and loud whooshing noise in that ear. Because of this she referred me back to the professor who discharged me last year just to be sure. I saw him today as a re-referral. As expected he said they would do an angio purely to put my mind at rest and also obviously to check there was no avm left. I explained I was literally terrified of an angio because of the risk of stroke but he just kind of said well its the only way you'll be satisfied. He's right in a way; obviously I'd like to know 100% but I absolutely don't want to have another angio and risk another stroke. I am so frightened that it'll cause a stroke. I know the risk is roughly 1 in 1000 but I also know my luck and that if one persons going to have one it'll be me. The thought of going back to square one - that terrible, dark place of losing mobility and working working working constantly to get tiny parts back is too much to bare. I just can't face even a slight chance of it happening again. The flip side is what if an angio does show up residual avm and basically it gets caught before it gets massive like the last one? Or, i don't have one and end up cap in hand back there again in ANOTHER years time? I have trouble making decisions as it is but this is even worse than usual. I feel like its a toss up between a rock and a hard place. Does anyone have any experience and/or advice on what the best route to take is? Or helpful stats? anything! Any help would be truly appreciated.

Hello everyone I've just had a phone call from a radiographer at Southampton General Hospital to say that he has a request card to do a cerebral angiogram and that it seems to have slipped through the net and is therefore overdue! I've been booked in for Friday at 1030. I also have to go to Southampton tomorrow (Tuesday) for pre-assessment, whatever that is. It's all a bit short notice really, but I guess it has to be done. I understood that the first follow up angiogram would be performed at between 1 and 3 months post SAH, and as I'm only 7 weeks post SAH, I was not unduly concerned that I had not heard anything. Does anyone know what the pre-assessment is all about? How long will I be at the hospital on Friday? I've been told to be there by 0800. Anyway, 7 weeks on... I'm having a bad week. After a week of quite rapid recovery, I seem to have gone back about 3 weeks. The headaches are worse and I am more tired than I was last week. Perhaps my brain is telling me to slow down. I hope you are all OK. Best regards Keith