Tony H

Thank you to all you lovely people for your generous and thoughtful posts. It wasn't until I joined BTG that I took what was a brave step for me - to post publicly about what is a very personal journey. Perhaps it is a man thing but it was a hurdle that I had to jump. Going public with thoughts and feelings is not natural for me and it made me feel vulnerable. This was at odds with the perception that I have of myself as the rock of the family. All of sudden I was the one needing help and I was putting that out there for all to see - on the internet of all places! But the rewards that came from that were amazing. The compassion, understanding and helpful advice were like nothing that I have experienced before. My anniversary posts force me to do a bit of reflection that I would otherwise not do. They give me a record to look back on but most of all they may help someone else who is suddenly wondering what the hell is going to happen to them. The generosity of the BTG community constantly amazes me. If there is anyone out there who is reading these posts and is reluctant to put pen to paper so to speak I would encourage them to tell their story. Best wishes, Tony.

Dear Sub Zero and Wife, After reading your posts I can see that you have gone through some very difficult years and we are so glad that you found BTG as there is so much help and support available here. On the 16th May 2012 our life changed. Tony had a SAH and I have never been so scared in my whole life. At the time of Tony's SAH we had been happily married for 25 years with 4 wonderful children. Tony was a fit, healthy 51 year old who also worked 60+ hours a week in a high level position. He had never been sick and was always reluctant to see a doctor. He spent 6 days in hospital and on discharge he was given a medical certificate for a week so naturally we thought recovery would be quick. (He had a non-aneurysmal SAH, and didn’t require surgery). He went back to work and tried to push through the headaches and fatigue. He wasn't sleeping well at night and was falling asleep during the day. It wasn't easy for him to admit he wasn't coping despite him having difficulty finding the right words, making mistakes and stumbling when he was tired. We went to see our GP who was surprised that he had returned to work at all and gave him more time off and recommended a phased return to work. The paracetamol wasn't working well enough so she prescribed other pain killers which also helped him sleep at night. SAH is a traumatic event for both of you. We too needed answers after Tony's haemorrhage and fortunately we found BTG. We initially just read posts and after some time Tony posted his story. The support we received was amazing. Even though Tony was the BTG member I spent just as much time on the site as him. It was what we learnt from BTG'ers that really helped us understand what was happening to us. We found the Patient Experiences of SAH Video sums up people's experiences very well. How did we cope? I can't say that I have really thought about this, initially our focus was getting Tony back to "normal". He was not used to being unwell and therefore tried to push through. Over time we came to the realisation that we had to accept that he may not recover 100%. We were thankful he did not die and that he continues to improve albeit at glacial speed. During the last 3 years we have learnt that we need to measure each day with activity, rest, sleep and medications. That you have good days and bad and if he does too much he pays. He is now working 4 days a week and is doing a less demanding job within the same organisation. He is happy with these hours and has no desire to go back to full time work. We are leading a slower paced life these days, we have accepted the hand we have been dealt and go about our lives in a more balanced and gentler way. When our children were asked how their dad's SAH affected them, they all answered independently that before the bleed he was always very busy and now has more time for them. One said that she no longer feels like she needs to make an appointment! J We have learnt to be patient as the recovery is slow but we are heading in the right direction. We feel for you both and hope you can move into happier times ahead. Regards Jenny

It seems a long time ago when my brain sprung a leak but my memories from that day, the days in hospital afterwards, and at home recuperating, are still very strong. I had no concept at the time of a long term recovery. In fact I thought 'no problem, I'll push through this' and get back on with my life like nothing has happened. Wrong, very wrong. I don't think anyone told me that a long recovery was going to happen, or I wasn't listening if they did, but I certainly wasn't prepared for it. Here I am three years later and my life is definitely not the same as it was. But actually I think the positives now far outweigh the negatives. The bleed was an unwelcome circuit breaker for our lives but about a year or so down the track my attitude changed. I found it much better to focus on what I do have rather than what I don't. And I am much clearer about what is important in life and what isn't. One valuable asset that I didn't have pre-bleed was time because my life was so jam packed. Soon after the bleed I had time because my doctor told me to stop work. I wasn't coping due to the head pain and fatigue but was just pressing on. Bad move. However I don't think I knew what to do with the time at first. And that is understandable in the sense that I was still thinking that I was dealing with a short term problem and therefore I would be back to 'normal' in a few days or weeks. And maybe that is how it is for some but I would be surprised if that is the case. So if I had the opportunity to plan my recovery and do it again from scratch what would I change? I would teach myself to get to know my boundaries and remove all those things that have a negative impact on my recovery. And I would reflect more on who and what are most important in my life and put more energy into them. And I would more quickly accept the hand that I was dealt. And I would learn to say no. Yet again I can confirm that the wise counsel of our experienced BTG'ers is, perhaps unsurprisingly, spot on. Key for me are the messages to be kind to your brain, listen to your body, and pace yourself. I was slow to learn what these messages actually mean but the sooner one works that out the better. My recovery is a work in progress and I expect that there is more to come. But if this is as good as it gets then I am fine with that too. I figure that I have little to gain from stressing about it. Best wishes to all on BTG, especially to Karen and her band of wonderful helpers.

Thank you kindly for your messages Jess, Tina, Penny, Karen, WinB143 and Iola. You are right Karen that being able to share with others is so helpful - and without BTG that would be almost impossible for me because of where we live. Iola, you picked up on the pacing issue. It is something that I and others seem to struggle with. After 2 years I feel that I have experienced enough of the downsides of pushing on to know that on balance it is better to avoid going too hard. Sometimes when engrossed in the job, or whatever it is that I am doing, it is easy to not pay attention to how I am going. That is precisely when I should be focussing on the sometimes subtle and sometimes not so subtle signs (for me that is stumbling, having trouble concentrating, making mistakes, head pain etc). It all comes back to the advice that many wise folks on BTG give to new members about being kind to yourself. I was a bit slow working out what this really means. Best wishes Tony

Two years today since my out of the blue life changing event. Once again I am motivated to post on BTG just in case something I write is helpful to someone else. Like many on BTG I had unrelenting head pain and profound fatigue for a long time after my bleed. Other symptoms seemed important at the time but not now. The head pain is mostly at a low level these days such that I am only motivated to grab some analgesics when I have over done it. My head still does not feel normal, as best as I can remember normal, but how it feels is not dominating my day like it used to. I have not felt the need to sleep during the day for months. My capacity to work and just do the things that we do is probably at about 60% of my pre-bleed capacity. As many BTG'ers have said would happen, I continue to improve with time, albeit at a seemingly glacial pace. So what have I learned in the last 2 years? I have learned that it is ok to take life at a slower pace and not feel that every spare moment needs to be filled with doing something productive. And it is ok to just take some quiet time by myself with no music, radio, TV, computer or other noise or distraction to give my brain a rest. Also I have learned that pacing myself is better than trying to push on, and I am better now at spotting when I need to back off. If I overdo it I pay, sometimes for days, sometimes for weeks. And I have discovered that the medical profession is very caring and supportive but knows little about what to expect in recovery from SAH. Recovery is a long journey and one that requires careful listening to ones body, and brain. It is a unique life lesson for me to learn. And I have learned that there is nothing like BTG for people who want to find answers to the many questions that emerge at different stages of recovery from SAH. Most importantly I have learned that there are some wonderful, generous people on BTG who have a unique understanding of what we go through and I feel fortunate to have been able to join this community. I am so grateful for the support that I have received from BTG and for Karen's ongoing commitment to this website and all her friendly helpers who just keep giving. Best wishes to all.

Great post Iola, thank you. Getting used to the length of time that it is going to take to recover and having doubt about how well the recovery will go were really big issues for me. Also getting useful medical advice about what will happen has been a challenge. The advice that you received accords really well with my experience since my bleed in May last year. Best wishes Tony

Thank you for your thoughtful post Kris. Life post SAH is nothing like what I envisioned for myself pre-SAH and therefore it has been a totally new and unexpected journey. There are positives and negatives but I try to focus on the positives, and there are plenty of them. I find it truly remarkable that you have released your passions, but as a fellow SAH’er I can understand your reasons for doing so. Congratulations on reaching 2 years on your journey, and special thanks to you for sharing your experiences over the past 2 years, and for your willingness to support other BTG’ers. Best wishes Tony

Thank you for your warm and positive replies Mary, Karen, Momo, Win and Anne. I am constantly grateful for the time that people put into contributing to this site. And a special thanks to you Karen for your tireless efforts in keeping the site going - it provides a wonderful service that is so helpful to so many people. Best wishes Tony

Hi Sally It is really good that you have found this site so early in the recovery of your son's father as there is a wealth of information here that you will not get from elsewhere. Looking back to the time when I was 2 weeks after my bleed I was strongly of the view that I could and should just go back to normal everyday life but this was just not possible. My immediate thought for your situation is to seek out a good doctor to help with the issues that you mentioned in your post such as headache, sleeping problems and blood pressure. These things need to be sorted out otherwise recovery will be delayed and could lead to other problems if the are not controlled. If you can establish a good relationship with a doctor it will help greatly. This site will give you access to the experience of those who have worked through the multitude of issues that can emerge - and the people on here are always willing to help, you just need to ask. Best wishes Tony

I am motivated to post today, on the first anniversary of my bleed, not because it is a reason for celebration. I just want to let people know what has happened in the hope that my story is helpful to someone else. It is the stories and support of others on BTG that have been so helpful to me so I feel it is my turn to try to give back. The main reason that I went looking on the internet, and found BTG, was because my symptoms were persisting way beyond what the medical people told me and that is when I found out (thanks to BTG members) that what was happening to me is what happens. My search for information was at about 8 months and things were not going well for me and the frustration of not recovering as expected made me push harder which was, in hindsight, the wrong thing to do. My prognosis from the neurosurgeon was that I would be 100% recovered by 6 to 12 months. Well here I am at 12 months and I am probably at 50% but because I have learned from the experience of others I now find relatively little frustration about that. I now know that I need to manage my time better and look after myself more than I used to. In essence that means less time working and more time doing things that are really worthwhile and important, and that includes having more time with my wife and children. I still have my bad days, and quite frankly I am yet to have a day when I have felt great but there are many positives that have come from this experience and it is those positives that I prefer to reflect on. An example is one of our 4 children spontaneously said recently that she had never known me to spend the time with them like I do now. What a slap in the face I thought – but hey, I was a busy person, a very busy professional career with lots of travel, a cattle farm, an exercise fanatic etc. When I enquired further she said that I did make time for them but they always felt that they had to get on with whatever it was because I needed to go and do something else. So the bottom line is that I am improving more slowly than the medical profession advised but there are many changes that have occurred in my life that can only be described as good. I will just have to wait a little longer for some other things – or just move on without them. Best wishes to all Tony

Hi Bernie, Sorry that you and Ross are going through such a difficult time. SAH is a traumatic event for both of you. We too needed answers after Tony's haemorrhage and fortunately we found this site. (We found the Patient Experiences of SAH Video sums up people's experiences very well.) On the 16th May 2012 our life changed. Tony had a SAH and I have never been so scared in my whole life. We had at that time been happily married for 25 years with 4 wonderful children. Tony was a fit, healthy 51 year old and then the bleed. It was just a little bleed, they couldn't find it with all their tests. After 6 days in hospital he was given a medical certificate for a week so naturally we thought recovery would be quick. He went back to work and tried to push through the headaches and fatigue. He wasn't sleeping well at night and was falling asleep during the day. It wasn't easy for him to admit he wasn't coping although all around him could see. Finally we went to the GP. The GP was surprised that he had returned to work and gave him more time off and recommended a phased return to work. The panadol wasn't working well enough so she prescribed painkillers that could be used alongside the panadol and also help him sleep at night. She also warned us that depression was common after such an event and to let her know if we thought it was a problem. Over the last 10 months we have learnt that we need to measure each day with activity, rest, sleep and medications. That you have good days and bad and if you do too much you pay. He is now working 1 day a week and travelling 400km once a month for meetings. In January he had 4 days of meetings away and took some weeks to recover. The headache has never gone away but the intensity is less and the fatigue still stops him from doing too much. If he went back to work full time at this point his life would be miserable. We have learnt to be patient as the recovery is slow but we are heading in the right direction. We feel for you both and hope that this is of some help to you. Regards Jenny

Hi Gavin, welcome to the site. There is a wealth of SAH experience available via this site and lots of genuinely caring people who are willing to help. I'm glad you found BTG so soon after your bleed. There are lots of resources available as well and one that you may find worthwhile is a video of patient experiences which you can find in the forum 'Subarachnoid Haemorrhage Discussion', seventh thread down the list. And there is lots more that you can search for by entering key words for any issue that is on your mind. Best wishes Tony

Well the cold front has passed over last night and boy did my head pain fly up! Without having read about the effects of weather I would have been at a loss to explain the sudden change, and it was sudden. The pain escalated over about an hour to the highest it has been for weeks and is still with me this morning - is about 6.30 am here. Our brains really are very sensitive instruments!

Hi Teechur, the most significant cause of head pain and fatigue is when I do too much. The challenge can be knowing when to stop, and I am not good at that as my wife constantly reminds me:-D. As for weather changes, I can't say that I have noticed anything with that but then again our weather is pretty consistent here with relatively slow changes in barometric pressure. A strong cold front is due to cross over us tonight, the first one in many months, so it will be interesting to see what happens. Best wishes Tony

Hi Wade I could have written the same story about myself. I tried to go back to full time work a few weeks after my bleed which was way too soon. I was unable to do a full day without falling asleep and my head pain escalating significantly so I took the doctor's advice and stopped work for a few months. The pressure, fuzziness, hangover feeling is exactly how I try to describe what is happening, and the constant ringing in one ear is also the same for me. I have tried to get back into my fitness training but it is a slow road. I managed 4 days in a row a few weeks back but crashed and had to take 3 days off. The message for me has been listen to my body and don't push too hard because it does not work, i always end up paying. My advice is be kind to yourself and be patient, and try to enjoy the good things that come from your current circumstance. Best wishes Tony

Happy to try anything. Having said that I am not keen on taking more pills so this is a good option. Thanks for your suggestion Kris.

Thanks for your suggestion Mary, I will check it out.

Hi Wade It is good to see your post as I was concerned that you may have been spooked by the stories of our experiences. One important thing that I have learnt on this site is that everyone's journey is different and changes for the better can happen quickly. This has not been my experience as yet but I am hopeful. It appears from your post that you are back at work which is very encouraging in itself given how recently your bleed happened. Best wishes Tony

Like many people who post on this site I have a constant headache that varies in intensity each day and from day to day depending on my activity and the general stresses of life. Analgesics only ever provide some relief, never have they stopped the pain. However there is one thing that I have found to provide sudden and profound relief and that is hot water from a shower running on the centre of the top of my head. The relief is almost instantaneous and continues while the water is running but stops within seconds of removing my head from the water. Has anyone else experienced this? Has anyone got an explanation as to why this happens? Best wishes to all on BTG. Tony

I was skipping as part of a usual exercise routine, had been going for about 5 minutes when the feeling of a whack with a cricket bat hit me. That was the end of my exercise session, which was 16 May 2012, and the start of my current journey which seems to have some distance to play out.

Hi Wade Welcome to the BTG site. Your story has some remarkable similarities to my own (see the introducing yourself thread for my background). Like you sport is and always has been a big part of my life. In more recent times I have been doing the things that are less taxing on my body - like swimming and cycling. Also like you my brain explosion happened while exercising in my shed (which has some gym equipment in it). I often use the shed around winter time because of the weather and darkness (we live on a farm so no artificial lights on the roads around us). My training routine included swimming up to 35km per week in the ocean plus cycling and running up and down flights of 200 steps - very much a no pain no gain type of routine. At the time this was in preparation for a 20 km ocean swim which I did not long before my brain event that happened 9 months ago. I was given an excellent prognosis for a full recovery which was predicted to be in 6 to 12 months. As a rough estimate I am about 25 to 50% back to where I was and because I wasn't getting better as quickly as the prediction indicated I went searching for some clues on the Internet and found this site - which has been great for getting some insights from people who really know what it is like. The answer to your question about how much exercise to do was, in my case, as much as you want. I do wonder about the risk of another blow out but the neurosurgeon laughed at me when I asked saying that I would have already blown everything that was going to blow. I hope he is right. As for the recovery time, you may have seen already from posts on this site that it is an individual thing and that predictions for recovery time should not be relied on too much. Some people seem to get better really quickly and suddenly while others take longer. I don't know if this information is of any use to you but on the off chance that it is I thought I would post anyway. Things could have been much worse for me so I am very grateful for how it has turned out. However it is a real challenge to deal with the dramatic effect that such a little bleed can have on ones life. Best wishes TonyH

Hi Mary The holiday drinks thread is very interesting. I probably need to go with what I feel - which at the moment is to continue to avoid the drinks for a while longer. The fishing was more of a 4WD expedition but was good fun. It was nice to be in the passenger seat for a change. Regards Tony

Hi everyone I must say that I felt a great sense of relief when I got feedback from people on this site that clarified the range of recovery paths that can happen. And the more I read on this site the better I understand - so thank you again for your contributions. There is a down side though because I have been hanging on the 6 to 12 month recovery period as the duration of my sentence. I now realise that my recovery is not that unusual and it could go on for quite some time. That realisation has prompted some further effort on better looking after myself (and my brain). I guess that can't be all that bad but it probably means that I will have to reset my expectations. Some months ago I had thought that I would be able to get back into swimming training again for another big ocean swim (20km) but I am finding that a couple of kms a few times a week is my limit for now. I should be grateful though as I still feel confident that I will get there - just some more patience is needed. As for having a stubby Louise - alcohol has been off the agenda since May, firstly because I just did not feel like any, but when I had one nip of whisky to celebrate our 26th wedding anniversary I had an escalated headache for 2 days. So not keen to go there again for a while. Bye for now. Tony

Thank you Paul, Sandi and Mary for taking the time to read my tome and for replying so quickly. It is really helpful to read your responses which are unlike anything that i have been able to get from our medical profession. In saying this i don't mean to be critical of our medical people, i have nothing but praise for them, but they don't understand like people who have been there. Thanks again and thank you to those who make BTG happen.

Hi everyone, my name is Tony, I am a 52 yo father of 4 with a previously busy working life mixed with lots of fitness training and a history of not having any medical problems for my adult life. On 16 May 2012, I was doing a pretty usual training session in my shed, skipping at the time, when I felt a sudden whack as if someone hit me over the head with a cricket bat. This was quickly followed by a global headache like nothing I had ever experienced before. Initially I thought it would all go away but soon realised it was time to go back to the house. At this stage I was stunned more than anything but soon after I became very sensitive to light and particularly sound. Fortunately my dear wife recognised that this was something potentially pretty serious so we called an emergency number and I was advised to go straight to hospital – which we did. The emergency doctor at our local country hospital was quick to put SAH on the list of possibilities, did a CT scan (which was negative) took lumbar CSF (which had blood in it) and then put me on the Royal Flying Doctor Service (RFDS) plane to Perth which is about 400km away. Whilst in the Perth hospital I had more CT scans, an MRI scan and a cerebral angiogram. These tests ruled out brain tumour, aneurysm and structural abnormalities of the cerebral vessels but no bleed site was identified. After 5 days in hospital, the medical staff considered the emergency period was over, that they had pretty much ruled out the nasties and I was allowed to go home (although I wasn’t allowed to drive for a few days). I was advised that I could go back to work but I would have headaches for a little while. So off I went to work a few days later thinking that was an interesting and totally unexpected experience and all would be well. Not so. The headache that started on 16 May 2012 persisted – it is there all the time in varying intensity. I wasn’t sleeping properly at night, I was falling asleep during the day and I was getting fatigued very quickly. Analgesics had only limited effect. After continuing at work for a couple of weeks I reached a point of desperation and went to a local general practitioner for advice. The GP was quick to ask why I was at work at all and put me on various drugs to help me sleep and control the pain. In August the neurosurgeon advised that he considered that I had had a small SAH and that I should be 100% recovered in 6 to 12 months. Good news I thought, and perhaps he will prove to be right but it is now 8 and a half months and my headache is still there all the time, I still get fatigued really easily, I have a constant ringing in my left ear, my balance has been compromised and my memory is not what it used to be. My wife and I estimate that I am working at about 25% capacity at the moment and even at that level I need to rest every day. So off I went to the internet to see if I could find out what is going on with my head – and I found BTG. I would be grateful to hear from anyone with a similar experience who may be able to give me some advice on what I should do or what I should expect for the future. Many thanks.