Liz D

Momo caffeine raises your blood pressure, I was told it's something to do with your adrenals but can't remember what. I was told no caffeine. I was also told not to be around smokers. Smoking causes your arteries to clog with plaque, which in turns narrows them. I have never smoked but my dad did and for 20 years I breathed in his secondhand smoke and everyone elses in pubs. This could have been why I developed an aneurysm. One theory is that I was genetically programmed with a defect in my artery and breathing his and others smoke caused it to narrow. It's when the blood pushes past the defect that it starts to balloon out. I suppose I will never know but the good thing about these days is smokers go outside and therefore susceptible people are not being exposed to second hand smoking. But when you look at how many people smoke and how so few people have aneurysms that ruptures, there has to be numerous reasons that cause them rupture. Just like it says in the NHS article, thanks for the link JayKay.

Hi Damien Welcome to BTG. I had a brain stem stroke during my coiling procedure which has left me with mild left sided weakness. I'm left handed and was quite concerned that I would have to learn to write with right hand! On leaving hospital I was unable to walk downstairs, I could do about 2 and then would fall because my brain got confused as to what leg to move next. I couldn't grasp at door handles, my left hand would be all over the door, no where near the handle. My arm would flap about with a mind of it's own! My whole left side has sorte of dropped, my trouser leg on the left side hangs lower than the other and my left arm hangs lower than my right. I worked on a stroke ward in our local hospital at one point and I knew that you had to start rehab as soon as possible. I also know that you have to stay determined to get you through the tough days. If my arm had difficulty in doing something then I would keep trying day in day out until I saw the smallest improvement and then worked on improving that. I had to concentrate, look at my hand and will it to pick something up. I remember the one thing that almost had be beat was hanging out the washing, something I never had to think about! But it would take me an age, firstly getting a peg out of the basket but trying to hold the garment to the line (could take quite a few goes!) and then pegging the clothes to the line!!!! I drop things from my left hand and can take a couple of goes to pick it back up but back then it was a bit of a nightmare. But I can now hang it out with my hand getting to the line first time, even though I still drop the pegs and clothes! I found physio really helped me understand where the messages from my brain were getting lost. It's hard to describe but I knew the message was leaving my brain but was not getting to my hand. Their encouragement helped me too. If you have been given exercises to do then I would urge you to keep doing them. They're not being flipant in the things they are saying to you, they see all sorts of problems daily and when they say you have potential you really have to believe them. The brain heals at it's own pace but it's still healing. But I do understand that it can so be exhausting and understand that it may get you down at times. But all my hard work has paid off, I am now back at work. Although I find it much easier to type than write. I can no longer take minutes at meetings, my left hand is just not up to it anymore but that's ok, someone else does it! I can't walk for long distances as I get very severe back pains if I do, but again that's ok, I still get about. I also can't run, don't have co-ordination or strength but if I'm going to be late or miss the bus such is life! There are still so many things that I can do and I am so much more laid back about things now and I prefer it that way. It's also ok to run out of steam at times, just stop and take a breath, tomorrow is another day! If you are having a tough day then just tell yourself your having a day off and start the hard work again tomorrow!

Hi Craig Welcome to BTG. I have a family link of SAHs. My paternal grandfather died from a SAH and I have two cousins who have had SAHs. They are half sisters, one survived but sadly my other cousin died in June 2009 from a SAH. Their mother suffers with polycystic kidney disease but she has no aneurysms and last year celebrated her 84th birthday! My father suffered from kidney disease and had a kidney removed in his 20s. Sadly he died at 65 from smoking related illness and was never scanned for aneurysms. My cousin who survived her SAH lives in Canada and has one child, a daughter. The doctors there advised that she should be scanned and she had her first scan in 2008, 5 months after her mother's SAH. She was 39 and was given the all clear (she also smokes) and she has been told that she will be scanned every 5 years. My other cousin who died has 4 siblings and 3 children. Her siblings have been advised to be scanned but so far only one brother has taken this oportunity and he also has been given the all clear. He is 56 and has been told that there is no need for him to have another scan. I have 5 siblings and 3 children. My children have been advised to have a scan but they won't do this until they are 30. They are 24, 22 and 20. They want to be scanned (well that's how they feel at the moment) because they don't want to risk having a SAH they would rather if there is something there then have it treated. They are also aware that something could be found but wouldn't necessarily need to be treated. Only 1 of my sisters has been scanned. She was scanned last year by MRA and was given the all clear. She was 41 and has been told she needn't be scanned again. One of my other sisters who is 54 wants to be scanned and has been trying for the last 3 months to get her GP to refer her! She said she doesn't want to live with this nagging away at the back of her mind. My other siblings don't want to be scanned. Having suffered a ruptured aneurysm and a subsequent stroke if I were in my sbilings shoes I would absoluteyl want to be scanned and if anything that was found that required treatment I would want it treated. From hearing from people on here who have had aneurysms treated before they rupture, the recovery seems to be a lot quicker. This must be a very stressful time for you and such a big decision to have made. Well done you on making it. Be advised by your consultant on what he feels is the best scan for you to have, he's the expert and we are all different. If I were you I would concentrate on getting through this first and get the results. What ever decisions you have to make in the years to come can wait until then. Wishing you the very best, take care.

Hi Anne I can relate to this. As yet I haven't ventured flying further than to London or Birmingham but I know that I will have go to bed and sleep when I get there and do nothing the day after. We've used airmile points so that I can go into the business class lounge to wait which is much quieter but these are all used up now! We travelled to the south of England by car last Autumn and had orgnanised stop offs on the way there and on the way back. But I was still whacked! The fatigued grumbled on when I came back and it took a couple of weeks for me to recover. When I went back to work I was disorientated and it took a couple of days for things to settle back down again. My colleagues noticed that I was a bit out of sorts. So I know now that I have to allow more time for me to recover when I return from time away. I have no desire to travel abroad at the moment because of this. I know being in busy noisy airports will take too much out of me. It's a pity that they don't have a quiet area for people like us. a 10 hour flight is way beyond me at the moment, well done Anya! But I'm sure in time this will change and I will be more able to cope with these things. It's certainly on my list of things that I need to do, so maybe next year.

Nessie you are truly inspirational! Well done!

Hi Maureen I also had a dissecting aneurysm on my left vertebral artery. I was also told that it was very rare and that my neuroradiologist had only ever seen this kind of aneurysm in victims of road traffic accidents. I have never been in a road traffic accident and I hadn't had any kind of head trauma at all in the months (or years!) before my SAH. My artery had a bend in it, sort of like the U bend under a sink, when it should have been straight. The berry aneurysm was sitting on one of the bends. This is why they have coiled the left vertebral artery too. When I was taken to theatre it was full to bursting with people who wanted to observe my op. I was awake for the first 1 and 1/2 hours. They did a balloon occlusion first, aparently there were legal reasons for this, to check that my right artery could cope, which it did and has done since. It was during this time that I lost all feeling in my left arm and they had to move the balloon, reposition it and then cement (their words) it in place. They had to leave in place for 30 mins while they did a battery of tests on me. I was then given the GA and that's when 9 coils were put in. I was told that I was a miracle as I had not only survived 2 sentinal bleeds and the aneurysm rupture but also a sequential bleed. The professor of neurology told me that only 15% of people survive a sequential bleed and that almost all of these people have some sort severe disability. They were also very surprised that I remained coherent throughout my stay in hospital and that I have so relatively few problems now. But my bleed was at the back of my head and a lot of the blood went down my spine. I know I am very lucky and I'm very grateful that the aneurysm was at the back of my head. But I was going through a very stressful family time when I had my bleeds and believe that my blood pressure was spiking but this aneurysm was going to burst at some point.

Spot on Lin. I keep telling people that I'm every bit as intelligent as before but it just works in a different way and information has a longer route to travel in my brain than before! I also agree that it's quite flippant to suggest that we put it behind us. Every experience in life helps to define us and makes us who we are. We can't just hold on to the good ones and ignore the difficult ones! Once I came to terms with what had happened and embraced the 'new me' I feel I am a much better person for it! It is a greiving process and everyone grieves in their own way and at their own pace. But hopefully we will all reach the stage that gives us peace. I felt wonderful at work last week. The team secretary came to me and asked my advice on a matter because as she said ' you have a very logical way of looking at processes and are able to streamline them'! How's that for a sense of empowerment! Gill you have a very young child to run after. This will fatigue anyone, never mind someone recovering from a brain injury. My children are all independent and the last one left home last July. I found I started to get even better with only hubby and me at home now. I used to be exhausted on a Monday morning after a weekend of all the comings and goings. I find myself quite amazed at the mums of young children who are recovering from a SAH and just what they are able to cope with and how hard they push themselves! I hope you are all having a wonderful mother's day and are getting spoiled, you certainly deserve it!

Hi Anne I can identify with a lot of what you say. I'm 2 years post SAH and whilst still improving, improvement is a slower pace. People who didn't know me before the SAH are very surprised when I tell them what I've been through. It makes me smile because I wonder what they make of my now little deficits! I'm sooo much more laid back now. I never get that 'Monday morning feeling', every day is just another day to be enjoyed. I can no longer multi task and my famiy are now used to me asking them to wait until I finish what I am doing. Even at work, I finish one task before going on to another. But I am told by colleagues (I'm in a new job post SAH) that I am very organised and can get through work very quickly. I know that prior to the SAH I could work at a furius rate! I walk away from any possible conflict but still can gently stick up for myself. My husband will now tell me that I'm getting tired, he can see the signs. I also keep telling people that I'm a bit dyslexic now and forget how to spell loads of words. Yet hubby was a bit surprised when he saw a draft of a letter I'd done a few weeks ago and the mistakes I'd made. I have gone through the grieving process and am now at peace with the 'new me'. I absolutely agree with you when you say "New me is a different me but better in some ways and has a simpler, less complicated life which I think in the long run is for the good." I worked in a dental practice for 11 years and we had a patient that had a severe stroke. He couldn't walk and lost the power of speech. Through a lot of hard work and support he learned to walk again but even after a lot of therapy still couldn't speak. 6 years after the stroke his speech started to come back, it took about a year for him to be understood clearly but he got there!

Hi Mary Welcome to BTG, so glad you've found us. You have been through such a lot from such a young age. Like the others have said maybe you need to speak to your GP. Have you ever been offered any counselling by your GP at anytime? SAH survivors can suffer with post traumatic stress and this will stay with you for years if you don't get some help. I am perimenopausal and was diagnosed with a blood test. I still have regular periods but they are becoming farther apart, 36days instead of my usual 28.They did a full hormone profile, including the hormones secreted by my pituitary gland. Looks like I may have a pituitary disorder. They think I may have a growth next to the gland and that this is squashing the part of the gland that secretes thyroid stimulating hormone (TSH). Again this has shown up in a blood test. I have very little TSH, very little T4 and normal T3. These are other thyroid hormones. As a result of the low TSH and T4 I am hypothyroid (underactive thyroid). The symptoms I have for this are some fatigue, rosacea, puffy eyes, swollen fingers and ankles, dry brittle hair, loss of body hair, loss of the outer third and part of the inner section of my eyebrows, cold all the time and I'm slowly gaining weight. The fatigue hits me about 9pm and I am in bed and fast asleep by 10pm. I now have to wear socks in bed and a long sleeve t-shirt under my PJs! I've been told these symptoms will slowly get worse without treatment. My thyroid meds no longer work and it looks like I may need some surgery. Since my SAH I don't get angry and have become one of the most laid back people I know! But I do suffer from anxiety. Again talk with your GP and get help with this. My memory can be rubbish at times, I write a lot of lists!! I'll say it again, you have been through a lot and are still dealing with such a lot. But also you have done amazingly well and you were only 23!! I was 49 when I had my SAH. But there is always someone here to listen, whether you need to rant or whatever! Take care.

Hi Vivien I hope it went well and you don't have to wait too long for the results.

Hi Michelle I'm finding this very interesting. When I came out of hospital I would have periods of confusion. I wouldn't know what had happened, why I was at home etc. I always knew who I was and where I was but for an hour or two I would just sit on the sofa and wait for it to pass. The first few times it happened it was quite scary but (having work in a stroke department) I knew to try and not get anxious as this makes it worse. My GP knew and was keeping an eye on it but as it was getting better it was put down to part of my healing process. But over the weeks it lessened to lasting for about minute. One example: coming back from pyshio on the bus I was looking out of the window and suddenly realised I didn't know where I'd been or why I was on the bus but I waited for that feeling to pass and after about a minute I remembered everything. Sally I thought it had something to do with daydreaming too and memory. I do think I sort of zone out for a bit and like you Michelle just accepted it. I'm now 2 years post SAH and it still happens and there is no pattern to it with me. So I shall be very interested to hear how you and Sally get on.

Hi Jan Welcome to BTG. That was a difficult conversation to have with your daughters, well done in doing it. Now it's over to the doctors to look after them. I was about 8 months into my recovery when I found this site and it's been such a support. They are such a great group of people. Take care.

Hi Rog Have you spoken to your GP about your anxieties? If not then maybe it would be a good idea for you to have a word and maybe ask for some counselling. You have been through such a lot and it might be helpful to you to get some support. My youngest son came to pick me up when my aneurysm ruptured and found me slumped in the street unable to walk. This had a huge impact on him. When I came home from hospital he wouldn't stay in the house if it was just him and me. Later I discovered he was terrified that it might happen again. SAH survivors can suffer from post traumatic stress and so can their relatives. My son did and it can slowly get worse over the following months. He eventually started showing signs of depression and when we sought help for him we discovered that it was this incident that triggered everything off. He was 17 when I had my SAH. Counselling has helped him a great deal. My other two children coped with things really well but they weren't living at home at that time and have said that they found that a relief Your wife seems to be doing amazingly well for only being 7 weeks post SAH. However, is she noticing your anxiety and putting pressure on herself to be 'normal'? When I came out from hospital it took me 3 weeks to be able to stand in the shower, I had to come down stairs on my backside because my brain would get very confused and not know what leg to move next and I would fall over. I couldn't open doors with my left hand (I'm lefthanded) because my co-ordination was terrible! But 10 months post SAH I went back to work, as a secretary in our local general hospital. So the future is looking very bright for your wife. The chances of having another bleed are very very slim. Doctors don't keep things from us these days and if there were any reason for them to think that the operation was not a success then they would have told you. You will read posts from SAH survivors on here who have had coiling and either require more coils or have other aneurysms waiting to be coiled. You know after my SAH when people heard what had happened they would say that it must have been very scary for me. I tell them that it was by far more scary for my family. They had to watch me go through this. I hope this helps a little but do take care of youself.

Hi Nessie Welcome to the family. It's such a relief to know that you don't have to go through this on your own. Looking forward to hearing more form you when you're ready. Take care.

Well done Lin and good luck with the increase in hours. It makes such a difference getting support and also when employers realise that we are really pushing things when we return to work. It's having support that makes a return to work and increasing hours a success. You are an inspiration.

Louise I was also told that I'm not in the 'at risk' group. My understanding of this group is that catching flu is life threatening to them. I don't believe that if I were to catch flu it would be life threatening to me but I do think I that I would feel the effects a lot more keenly than most other people! My eldest son has asthma and gets the flu jab each year because the flu can be life threatening to asthmatics. My father had rheumatoid athritis and always got the fu jab for the same reasons. I get the flu jab every year because I work for the NHS and we are encouraged to have it so as not to put a strain on the service. Our occupational health service organise it for us and their advice is to try and have the jab by the end of September start of October in order to gain best immunity. Any later than that then there's every chance that your immunity hasn't kicked in and you may still get flu. Lin the flu vaccine isn't a 'live' vaccine and I would also guess that you had some sort of virus working on you when you got the jab. My friends daughter has Lupus. Vicky that's one of the most debilitating conditions I have ever come accross. Her dad gave her a kidney last year because the lupus had affected hers. She's going from strength to strength since the transplant.

Hi Chris I had a brain stem stroke during the coiling procedure which has left me with left sided weakness, more so in my left arm and I'm lefthanded. My left leg is now a bit shorter than my right, my trousers tend to drag the ground slightly. My left arm is still weak and I tend to drop things from my left hand. So I'm careful about what I carry in that hand! I had physio which helped a lot. The messages weren't getting from my brain to my arm and the repetition of the excercises helped with this. I just kept on using it and found over time that it got better and better. But you should should speak with your doc and see what he/she says but you may find improvements over time.

Great news Zoe. xx

Your in my thought and prayers. I'm so sorry.

Hi I returned to work (NHS secretary)10 months post SAH. It was to be a phased return and the occupational health doc thought it could take up to 6 months to work up to my 35 hours. I was to start with 6 hours over 2 days and they were not to be consecutive, for the first 4 weeks. However, I was signed back off with work related stress 11 weeks later. Unfortunatley my office manager and supervisor put me under great pressure to return to 35 hours within 12 weeks of my return and ignored occupational health advice. It took me another 4 months to recover from this stress but I went straight back into my 35 hours. I didn't go back to this office and I managed these hours fine and didn't crash when I came home. But I was to be redeployed because of things that had gone on, I've written about this before. I'd been working temporarily within Psychological Services and when a permanent post came up here I jumped at it! The hours for this job are 18 3/4, over 4 days and I'm loving it! Working with a consultant clinical psychologist as your line manager is just wonderful. I feel I have the best of both worlds. I have a fab job, working with fab people and the hours give me lots of time off to do things I want. But I am aware that I am very luckly. My 3 children are now independent of us and I have never had any financial pressures on me to get back work. I agree we should get more information on recovery. I was told not to think about my ususal routine until after 12 weeks. I took this as meaning that after 12 weeks I should be back at work or at least 'normal'! I was a bit taken aback when after 4 months I still wasn't ready to go back work! It wasn't until I found this site (7 months post SAH) that I realised it would be nearer a year before I should be thinking about getting back to my usual routine.

Hi My stressful life hit a peak 4 months pre SAH and the bleed came after a very stressful weekend. My youngest son had been assaulted. So I think my blood pressure was spiking on and off regularly in the months leading up to it, although when I'd had it checked by my GP a few months before he said it was only just above normal and nothing to worry about. My aneurysm burst 1 hour after leaving a very stressful meeting at work and the sequential bleed happened 4 days later.

Hi Amelia I'm so sorry for your loss at such a young age. I was 49 when I had my SAH but I am one of the lucky that survived. My dad's father died from a cerebral haemorrhage. Two cousins on that side of the family have also had ruputred aneurysms. One cousin survived two aneurysms but sadly her sister died. She was 52 and left behind 3 children. I have 3 children who are 24, 22 and 19. They were very scared when it happend to me and discovered the family link. However, the cousin that survived has an only daughter and she has been scanned twice and is clear. They live in Canada and my cousin's daughter will be scanned every 5 years. But she's now 45 and clear and aneurysms can take many many years to develop so she doesn't worry about it anymore. My youngest sister has been scanned and she's clear. My children will be offered scans when they reach the age of 30. Can I also suggest that you contact Cruse Bereavement, they are a wonderful organisation. They helped my mother cope with my father's sudden death and my youngest sister got a lot of support from them at that time. It's really good that your GP has taken on board your concerns and have referred you to a neurologist. I'm sure he will give you all the information you need. Remember that you also inherit genes from your father's side and that brain aneurysms that rupture are very rare. Take care.

H When I was 37 I had a SAH, although it's only now I know what it was. They thinbk I'd suffered an artery dissection and then the aneurysm started to grow. A member of my family had been sexually assaulted and it was the shock of this I believe caused the SAH. I had 3 young children, my husband commuted 35 miles to his work and my family were 100 miles away and his live in Portsmouth. So I had a highly stressed life anyway. I've never smoked and drank a very little. I was always whizzing around. I was also going through a very stressful time at the time of my 2nd SAH. We now know I had a sentinel bleed in November 2008 when I experienced a highly stressful incident and another in December on our works night out when I was drinking and another in January at after another night out at a party. Then in February the SAH happened, on my way home from work, after I'd been at a very stressful meeting at work on the Tuesday and the sequential bleed on the Saturday. The day after my 49th birthday. So my aneurysm was going to burst. Prolonged stress is not good for anyone and can cause all sorts of medical complaints. I've not changed much in life, I did eat healthily (in fact had changed to organic then) and as I don't drive I've always walked everywhere. I made the decision not to learn to drive because walking was the only excercise I would get as I had no time to go the gym when my children were young. I had a lot of problems when I first returned to work (which is well documented) and got quite ill due to the stress being put on me but I won't let that happen to me again. Interesting thread.

Hi Pete It sounds like your follow up appointment at neuro outpatients. It does seem to differ from hospital to hospital. At Edinburgh Western Infirmary my first follow up wasto be 3 months after the op but it turned out to be 5 months because of a paper mix up. You may not see your surgeon it could be one of his team. Really good idea to write things down.

Hi Sandi Welcome to BTG. a comon thread with all of us is the lack of information about recovery. That's amazing your are back to work so soon. Might be an idea to pull back a little. Most of us go back to work on phased return because the fatigue can really hit in when you do. Listen to your body, all our recoveries are different. If the fatigue is getting too bad or your getting headhaches maybe your brain asking for a rest. Take care.