neil_f

Hi Sairah, At around 3 to 4 months I often had a sensation that my scalp was tight and it felt like a small army of metallic ants were scurrying around just below the surface of the skin. I often had a strange metallic smell/taste at the same time. Drinking lots of water helped a little and it stopped after a few weeks. After these sensations stopped I felt more clear headed afterward so I put it down to being part of a helpful process (though it freaked me out a bit at the time!). Hope it stops for you soon and helps in some way too.

I just edited my previous post because I had mixed up a few of the paragraphs when cutting and pasting. Sorry if it read a bit strangely in places, my attention to detail must have been a bit off last night. Thanks for the good wishes. Sarah, I already do wave every time I fly over the Hope Valley.

Well it’s been a year since my head blew a fuse. It’s been the most difficult year of my life but I have made a lot of progress. I struggle with fatigue and don’t have the strength and stamina I used to but I’m able to do most things and am very much enjoying life again. Every now and then I check on the forum and it is really helpful to read similar experiences. Thank you to anyone who takes the time to offer support and advice on here. My biggest improvements started around eight months after the SAH. My daily headaches stopped, my head became clearer and my mental stamina improved significantly. I could listen to music again without it sounding wrong (I think my brain processed high and low frequency sounds at different rates) and I no longer needed to use ear plugs and sunglasses. I started to enjoy reading books again and discovered I could beat my previous high scores on cognitive tests without even trying. The regular pain that developed behind my left eye, which turned into my problem headaches, started to occur less and less frequently, to the point where it only happens if I don’t get enough sleep or if I’m suffering from stress. I started to kayak again and was surprised how well I coped with serious white water and rescue type situations. I always feel a bit rough for a day or so afterward, so have to plan my days around my activities. I have dropped out at the last minute on a couple of sea kayak trips because it just didn’t feel right. It might be anxiety but it may just be a healthy respect for the sea and not wanting to cause a problem for me or my friends. I hope to get out on the sea later this summer and maybe a longer trip later in the year. I cycle occasionally and find I am a lot slower than I used to be and need to take rests but I’m working on it and enjoying what I can do. The biggest surprise has been my ability to fly my paraglider. It doesn’t seem that long ago when I thought I would never be able to do my main sport ever again. I tried a short flight earlier in the year and 20 minutes in the air put me in bed for a week. Four months later and I flew a 5 ½ hour flight all around the peak district. I had a special moment when I flew out to Sheffield and pulled a couple of victory loops over the Royal Hallamshire hospital. I struggle if I try to fly on two consecutive days and need to have a rest day afterward but for the first time since the SAH I feel truly lucky and recognise things could be a lot worse. This weekend I went camping with my eldest daughter and we went kayaking together. It’s been a difficult time for my family and I think we all appreciate each other a little more. My youngest is in the middle of her exams and we are looking forward to a family holiday later this summer. I’m doing some work but still very much taking it easy. It continues to be a worry but I don’t want to make any long term career decisions until I have a better understanding of what I will be capable of and if my stamina/fatigue will improve. I’m attempting some fairly ambitious DIY projects and using this as a measure for what I can do and what I can cope with. I seem to be ok as long as I don’t attempt too much, try to stick to timescales when I’m struggling with fatigue or allow myself to get stressed by my current limitations. I still enjoy walking but weirdly found my stamina level has dropped significantly in the last couple of months. The same thing happened at around the six month point, when I went through a significant cognitive improvement. It improved after a month or so and I hope to experience the same recovery of my stamina soon. It may be that I’m just doing more of everything else but fatigue seems to be my biggest on-going issue for now. Sorry if this is all a bit lengthy. Whilst our recovery stories are all different, I thought it may give hope to someone in a similar situation to me last year. Things are still a struggle but I’m able to do so much more than just a few months ago. I get frustrated from time to time and get taken by surprise with the odd day where I struggle to be able to think straight, remember a minor recent event or achieve anything useful but on the whole I’m surprising myself with how well I’m doing. My anxiety levels are now much lower, I feel more confident, much more capable and a bit more like my old self again. Wishing you all the best, Neil

Really great to hear of your progress, hope you had a wonderful day. Neil

Really good to hear of a full recovery. Thanks for posting your news.

Great to hear you are doing so well in so many areas. Love the hill run comparison! Good luck for the next year, Neil.

Thanks for the welcome, the sound advice and a big hello to you too. Sorry for not responding sooner, I have been steadily working my way through the old threads in the NASAH forum. There are a lot of really helpful posts in there and I have been completely lost in it for several days. Since the New Year I have been out walking every day. Some days I have needed to push myself to do it and have accepted that I need to go slower and often sleep afterward. It’s steadily getting easier and I’m enjoying being out in the woods again. Physical activity helps me relax and think straight, so I’m glad to be getting out more. On Sunday I went kayaking with my local club and had a great time. I was careful not to overdo it, slept afterwards and was on a gentle endorphin high when I woke. It felt fantastic to be back on the river again and for the best part of 3 hours I almost forgot about my SAH. My plan is to take it steady, keep up with the walking and to occasionally try the more demanding stuff when I feel up to it. I’m not sure if I will ever be able to participate at the same level as before but it’s still early days and don’t want to give up on it just yet. I’m keen to start paragliding again but don’t trust my decision making and risk assessment abilities at the moment. Work is going to be a problem for a while yet and the stress of overseas travel can wait for a good while longer. I’m trying to keep a UK project moving, whilst being clueless about timescales, which is difficult, however, I’m learning to be more patient with myself and trying to stay realistic about my capabilities. I’m also a big fan of ear plugs. I took them when I went to a pub for the first time last week but didn’t need them. We found a quiet table and had a great evening. There is no way I could have done this, without leaving after just a short while, as recently as only last month. Best of all, despite having more to drink than I intended, didn’t suffer too badly the next day. All the best, Neil

Hi Win, I’m hugely impressed by how well you are coping and your ability to keep a positive attitude. I wish you all the best with your recovery and hope to have a fraction of your courage and strength. No one has said that I won’t be able to do my outdoor pursuits but they really don’t want me to push it just yet. It doesn’t help when they don’t understand why anyone would do what I do in the first place. If I start singing as well they will really start to worry! Have a great evening, Neil

Hello, Thank you so much for the incredibly friendly and warm welcome, I'm touched and grateful. It’s great to speak with people who understand. I look fit and healthy and appear to be absolutely fine to most people so, quite understandably, most people don’t see there is any problem at all. I was treated in the Royal Hallamshire too Sarah and agree the care received was very good. My friend is the senior training staff nurse on the neuro-HDU ward, so I was lucky to see a friendly face when I was in a bad way. I greatly appreciate all your support and advice and for being kind enough to share your experiences. It has really helped to hear of similar events and feelings and I don’t have the words to express my appreciation. It also helps give me some perspective, however, I do feel sad (and a little guilty) that many people have had a more difficult time and are still living with issues, that are worse than mine. After my first hang-over free New Year’s Day in over 30 years, I made a resolution to be more patient and to get back on track with my plan for physical recovery. Thanks once again, Neil

Hello everyone, I have been a member for 3months but not felt up to posting, until my head became clearer quite recently. I’m 47 and (was) very active, enjoying a number of extreme sports. I regularly pushed myself to the limits and suffered occasional migraines due to dehydration. I’m a driven person in all areas and my wife thinks the bleed was as a result of exhaustion. The SAH occurred after a very active weekend and I assumed it was a severe migraine and a trapped nerve. It felt like I had been hit on the back of the neck with a hammer. I fought off the tunnel vision and stupidly climbed up off my knees and clambered up to bed. My daughter had her last A-level exam the following morning and I tried my best not to disturb her. I spent the night in agony with some vomiting and high temperature and in the morning my wife rang the GP, who promptly called an ambulance. The A&E CT scan showed I had a significant bleed and they took me to a HDU at another hospital. I was ultra-photophobic, couldn’t cope with any noise and in constant pain for 3 weeks in hospital. At times communication was difficult because of the pain but I was aware of everything happening to me. I had 2 angiograms, 4 CT scans, 2 MRI scans and a lumbar puncture but no cause was found. When I first came home from hospital I had double vision, a couple of infections and had lost 8Kg in weight. I slept for almost a week before trying to get up and about. I couldn’t walk very well and could just manage 20ft to the end of my road and back. I slept after almost every meal and regularly left the meal table to go and collapse on the couch. Conversation was difficult, so it was hard to have visitors and I couldn’t cope with television or radio. A couple of weeks after being discharged I had a massive migraine and ended up back in A&E. This was probably the scariest experience because, although no one said it, we all thought it was another bleed and understood what that might mean. The migraine lasted 10 hours but there was no bleed and the lumbar puncture result was clear. It was difficult to speak with the doctors in hospital and I was really looking forward to meeting my neurosurgeon at the 2 month review. The meeting turned out to be a disappointing experience and I was taken aback when he told me he didn’t know the cause of the SAH or if it might happen again. He showed me images of my brain and pointed out the blood and told me not to do anything active for at least 6 months. This was the only information that I had received since having the SAH and I was shocked. I thought I was on the mend and would be up to full strength within a matter of weeks. I now know this was unrealistic but had no other information to base my expectations upon. This forum has been really helpful and I’m super grateful to those who have described similar experiences and coping mechanisms. I have tried to take it easy since the meeting and have been monitoring my physical activity, which has helped me to understand my limits. After 4 months I was walking up to 5 miles a day, except when I needed to rest. I now rarely sleep during the day unless I am recovering from overdoing it. The neuro psychologist was really good to talk with and helped my anxiety considerably. The cognitive tests gave me headaches, so I had to have breaks and reduce the length of the meetings. The results showed no indication of significant damage but there were issues with communication between different areas of the brain. Hopefully this will improve with time. Short term memory, loud noises, music and background noise are a problem for me and I struggle to concentrate for long. If I try too hard then I get a pain behind my left eye which develops into a bad headache. I still get headaches most days but some days aren’t too bad at all. The cotton wool type foggy sensation in my head has improved a lot in the last month and the world seems to be in sharper focus now. I also started dreaming again for the first time since the SAH. I used to wake up very abruptly, not knowing what time of day it was or where I was. Unfortunately the dreams became so vivid that they woke me and I wasn’t sleeping much. It was really bad for a couple of weeks but things seem to be settling down now. At the moment I am still suffering with fatigue and it seems that whilst I have taken a step forward with my cognitive ability, my fatigue level and physical stamina have taken 2 steps back. I guess there is a price to pay for being clearer headed and hope this will improve soon. I’m a self employed engineering consultant and my main clients are based in the Middle East. Working on-site and travelling can often be stressful so I’m taking a forced break from work. Having no income is a real worry but there is little I can do about it just yet. Christmas Eve marked 6 months from the SAH and I am still anxious and very concerned that I might not be able to work again or get back to doing the things I love. I’m a lot more hesitant and less confident than I used to be and sometimes it’s hard to stop thinking about what has happened to me and how different things are now. I hate not having any energy or stamina and really miss my sports and being out in the mountains, rivers and seas with my friends. It hasn’t been easy for my wife and children and it seems so unfair to them. We had so many plans for this summer, before my eldest daughter left for University this year. I’m trying to focus on how much I have improved but to be honest I just want my life back. I’m very fortunate to have a loving and understanding family, an awesome dog and many good friends. I’m determined and confident I will get there. Will let you know how I get on….. Wishing you a happy and healthy New Year, Neil