Liz D

http://www.brainandspine.org.uk/information/neurological_conditions/subarachnoid_haemorrhage/index.html This link will take you the Brain & Spine Foundation booklet on SAH. Might be worth a look for ideas Riane. I was sent a letter from the Neuro Specialist Nurse after I returned home, which explained a bit of what to expect but really only covered the first 12 weeks. It also gave a list of support groups which she suggested would help me further. Only problem was, they were all in Edinburgh, an hour + drive away on a very winding A road! No way was I capable of doing that for a good many months after my SAH. I wish she had given me a note of this site, I did tell her all this last year, no idea if she now gives the address out. As for friends, I've lost a few. One 'friend' actually dives into a shop when she sees me coming! Needles to say we haven't spoken since I had my SAH in Feb '09! I don't need her or the others. But the friends that have stuck around are fab. My family are also very good. They see the changes in me (but also see the improvements too over the last 2 years) and my hubby notices my fatigue starting before I do and always asks me if I'm getting tired. He'll make our apologies and we leave. When I'm at family get togethers they don't blink an eye now when I disappear for a snooze or just go for a lie down. But I have told them that a SAH is a stroke and this seems to get through to them, that although I look very well my recovery is still on going! ps have just found Jen's link to article on fatigue, excellent!

Well done Michelle! I hope you're going to just chill tomorrow!

Hi Bay I was told initially that I would have follow up angios for 5 years after my SAH. After I left hospital I had a 3 month follow up consultation at the outpatient department and then an angio 12 months after my SAH. I saw my neuroradiologist 3 months after this angoi and he said that all was well and that I didn't need any more angios and I was discharged. My GP has a copy of this discharge letter in my medical records. Has your GP maybe got a copy of your discharge letter? Might be an idea to make an appointment to see your GP and ask about this and explain to him that you are anxious about not having had any follow up and maybe he could contact the surgeon on your behalf for an explanation. Try not to worry too much (I know that's not easy) but do push to get your questions answered. Take care.

Hi Sandi The therapist that attended to my little nephew was very gentle also. She would gently put her hands on his head and down his spine. His birth was quite troublesome, my sister was in labour for 3 days before it was decided he was stuck and she had an emergency C section. He was born with red/blue marks on his face (over his forehead and down the side of his nose) and it was the cranio therapist that explained these were caused by him being stuck and because of this his skull bones were out of alignment. She also advised my sister to give him a dummy (pasifier) as this would help re-align the bones on the base of his skull. He wouldn't take one so my sister used to let him suckle on her pinkie and at the same time she would massage his upper mouth. I saw my nephew being very grumbly and uncomfortable before a session and within 5 mins he was very relaxed, went to sleep and as I said before he would go on to sleep for about 4 hours! I'd never heard of this and was quite amazed by the results.

Hi Tracy I'm surprised at your dentist's reaction. I'm assuming that he's disregarded any misaligned crowns or fillings and not looked any other causes. I worked in a dental practice for 11 years and TMJ was a very common problem. The worst culprits for this is biting your nails and nightime teeth clenching (which can be caused by stress). When you bite your nails you're putting your jaw into positions that it's not designed for and therefore putting it out of alignment. This can also cause your jaw to click and sometimes get stuck. Night time teeth clenching (main culprit of this is stress) can also be the cause of headaches (even migraines) and all sorts of neck/head pain. You can have a soft mouth guard made that you wear at night. We used to get very good results with patients who wore these, at the same time asking them to look at the levels of stress in their lives. If this didn't work we then referred them to an Oral and Maxillofacial Surgeon in Edinburgh. I'm not sure what a prosthodonist is and whether it's the same as an O and M Surgeon in the UK. My sister had very good results, for her 4 month colicy baby who never slept!, with craniosacral therapy. Again it was the stress of the colic which in turn was causing him to tense his wee muscles. She took him once per week initially (and then fortnightly and then monthly) for this and after each session he would sleep very soundly for about 4 hours and for the next few days he would be much more relaxed. He was even getting constipated (he was fully breastfed) but again things would go back to normal after a session. It was quite amazing, pity this is not available on our NHS. Hope this helps a little.

Hi I was told it could take up to 3 months for the blood to be absorbed. I was told this when it was being explained to me why I needed to keep drinking fluids. The specialist nurse explained to me that the blood had to be processed by my kidneys and then expelled.

Hi Momo Here's a link giving information about getting a second opinion from NHS Scotland. http://www.nhs24.com/content/default.asp?page=s6_1&catID=68&articleID=910.

Hi Kelly Welcome to BTG. I have a cousin that lives in St Catherine's and she too had a SAH. look forward to hearing more from you.

Hi Sonia My aneurysm was at the back, on my left vertebral artery. I'm very lucky and have few problems and keep very well. At the time I found it quite traumatic being awake but then I didn't like being awake during the angiogram. When I was wheeled into theatre there was a lot of people in green gowns there at the time, because my case was so unusual everybody and their aunty wanted to watch! I kept my eyes shut the whole time and found it really hard trying to concentrate on answering the questions. At one point I remember saying that I didn't want to talk anymore but he told me that I had to! But in hindsight I'm glad I was awake because I was able to tell them that my left side had gone numb. There was a bit of a panic but at the time they couldn't see what was causing it, it was later they told me that I must have had a brain stem stroke. My surgeon told me that legally they had to do the balloon procedure first, he said otherwise they would have gone straight to coiling because to keep me alive my artery had to be blocked off. I've never asked what the legal reasons were or have I ever asked what size the annie was, I wasn't really interested but I'm assuming that when I get my notes all this information will be there. But I still am in awe of these surgeons and just how amazingly clever they are! Take care. xx

Congratulations to you both on reaching this milestone. As others have said, it's definately the hardest. Hopefully you'll find greater peace in your second year, I know I did.

This is very interesting. My surgeon explained to me that he was going to do a balloon occlusion, which would be glued with a sort of 'super glue'. He said that normally that would be the end of the procedure but for me that would be too dangerous (he felt that I was very high risk of having another bleed) and they would then go straight to coiling. I was awake for this and it took about an hour for them to do it, then they did some tests and just watched the monitors for another 1/2 hour, I was still awake. Then they gave me the GA to put the 9 coils in and this took another 7 hours. I think I now undestand a bit more of my procedure. But I keep forgetting that I also have this balloon thingy in there too! I'm waiting on a copy of my hospital notes and will look to see if they used Onyx or not!

Hi Christoffer Welcome to BTG. I'm 2 1/2 years post SAH and still have problems with my neck. I too felt it was too heavy to be supported on it's own for months after my SAH. In fact I found this site 8 months after my bleed, as it was only then I could sit at the computer for any length of time without the neck pains causing me a headache. I have to do excersises every day to keep the muscles from tensing up and also to strengthen them. But I still get very bad headaches that can last several days which comes from the neck pain. But my aneurysm was on my vertebral artery, so my bleed was at the back of my head. I also have 9 coils fitted and my left vertebral artery has been completey occluded and I get pressure from where the coils have settled, which also causes me neck pain and subsequently headaches. The headaches get quite bad and are quite similar to the SAH (in that my head feels like it's going to explode) but pain relief medication, a dark room and complete peace and quiet and they ease. My husband gets very anxious at times and keeps a very close eye on me when I get one of these. The excersises I do were given to me by my physiotherapist and certainly keep the intensity of the pain in check. As the others have said, any worries you have and the the first port of call should always be your doc. My doc knows me so well now that he can spot even the smallest changes me, even if I don't! It could be that you've stretched or twisted something but the only person that can tell you that for definite is your doc. Take care.

Hi Jen I completely agree with positive thinking. I'm such an optimist that I annoy my family at times but I've always been like that! I alway tell people that I'm a 'glass half full' type of person and I add that even if the glass was nearly empty at least I can have a little taste and if the glass was completely empty then it's ' a well that's not for me, there's something MUCH better around the corner!'. But after my SAH I did have very low days and couldn't understand why I was feeling like that but eventually I understood my problem. I was always a 'it won't kill you, so just get on with it,' when faced with life's difficulties and I was aware that I would stop myself from this saying this mantra and it took sometime for me to allow myself to start saying it again. Many years ago I remember watching Gloria Hunniford being interviewed about her life. She spoke about how she surrounds herself with postitive thinking people and how she slowly eased out anyone negative. She said that when you are with friends/family you should come away mostly feeling invigorated rather than mostly feeling exhausted. She then went on to say that that was one of the main reasons she divorced her first husband because he was such a negative thinking person. This switched on a little light bulb with me and I have always strived to surround myself with positive thinking people. Jen I don't think it's mumbo jumbo but it can be hard work rewiring your thought processes but the rewards are worth it!

Hi Gill I'm so sorry Theresa wasn't coiled, hopefully they'll come up with a solution for her. I hope she's recovering well. What a time you are all having. Jan hope all went well and you're lying there thinking of what you're going buy for your holiday!

Hi Gill I thought you couldn't be too far away when I read Border Reiver! The most important thing we need is support and understanding. What you did for your friend is just lovely. I'm sure she has had a great boost from her weekend. Your friend is still very early in her recovery. We all have different starting points in our recovery and our brain will improve at it's own pace. I had a brain stem stroke during my coiling procedure which left me with left sided weakness. I had quite a bad tremour in my left arm and had physio for this. But it was still about 15 months post SAH before this started to improve. I know a man who had a major stroke in his mid 40s. It left him in a wheelchair and unable to speak. It took him 2 years to be able to get around without the wheelchair. Then another 4 years later and his speech started to come back. I met him in the supermarket several weeks ago and we had a good chat. He's now in his mid 50s and living a full life. I asked him how he felt during the 6 years when most of his recovery took place and he said that he just never gave up. He had some very dark days but he also said that in the big scheme of his lifetime, 6 years recovery didn't seem that bad at all! A positive attitude is one of the biggest aids in our recovery too!

Hi Tracy Welcome to BTG. You're doing really well. I can relate to having problems with peoples names, I really struggle with that. I was told that it's a concentration/memory thing. My brain has to concentrate on taking in the name at the same time trying to remember facial features and then have to put the two together! I now just tell people that I'm rubbish at remembering names! look forward to hearin gmore form you.

Hi Gill Welcome to BTG. Border Reiver?!! Which side of the Border are you from? You're a good friend to stick by her, some people can't deal with this and stay away. Is she at home or still in rehab?

Hi Kate Welcome to BTG. Your recovery seems to be going really well and that's great news. I used to get panic attacks. They started when I came home. At first they happened when I was sleeping and I would waken up whilst having one. They slowly got worse. I had my SAH in a very cold and icy February and was very frightened to go out in the cold. I waited until the weather got a bit milder and then started to go out. My GP gave me beta blockers. These helped reduce the sweating, pounding heart etc which meant I could concentrate on mentally counselling myself, telling myself that all was well and nothing bad was going to happen! I also found that my first visit back to the hospital brought on anxiety. It brought back a lot of memories of my time in hospital. My blood pressure shot up and I was shaking. My husband was really taken aback at my reaction. When I was going in for my follow up angio I was a trembling mess! I told them that it was bringing it all back to me. I was told to take my beta blocker and they also took me first. I arrived at the hospital at 7.30am and was on my way to theatre at 8am. The staff were wonderful and worked hard at keeping me distracted. Tell them you are anxious and if you can see your GP before Wednesday all the better. But if you are unable to see him before, go and speak with him after the angio and tell him about your panic attacks and ask for help. I found this site 9 months post SAH and really wish I found it earlier. The people on this site helped me find my way through the emotional turmoil. I also found counselling helped me understand that what I was feeling was completely normal for what I'd been through and that I wasn't having some sort of nervous breakdown. Good luck for Wednesday.

Hi Sandi What a great post and I'm so glad you continue to improve and really impressed with what you've achieved. Well done.

Hi Carolyn Welcome to BTG. I had a ruptured aneurysm which caused my SAH and subsequently a brain stem stroke. It took me 10 months to get back to work, on a phased return, that was expected to take 6 months for me to work up to my 35 hours per week. But I only lasted 11 weeks and had only just worked up to 12 hours per week. But I had a very unsympathetic manager and office supervisor who put me under a lot pressure to return to my full hours within 12 weeks of returning. As a result I was signed off agin for a further 4 months with sork related stress. There is no fixed time on our recoveries, we are all different. If you do not feel that you are ready to return to work on the 24th (I'm still a bit gobsmacked by this!!)then you must say to your docs. I too was told, by the professor of neurology who attended me, that I was not to attempt my normal routine for 12 weeks, I took this at meaning I should be back at work by then until my GP told me otherwise! It can take up to 12 weeks for your body to absorb the blood and drinking lots of fluid will aid this. Your kidneys have to process the blood, so the more you drink the better. I was told 2 litres of fluid a day. My gosh you are in no way a wimp, it's only been 15 days since your bleed! I think you are doing really well. But you must listen to your body and if it's telling you to rest then you should rest. You have certainly come to the right place for support, this is a wonderful site full of wonderfully supportive people. Take care.

Hi Damien I can't beleive you were told that by a counsellor, that's shocking! Did you give feedback to their supervisor? No way should they be counselling someone who's been through such an event. I had counselling and it helped me tremendously but if I'd been told that by someone I would have felt crushed and it certainly would have affected my recovery. Louise is spot on. You have to think positive and you will get positive results. I also remember coming home and thinking "is this it"? It took me 3 weeks to just be able to get the co-ordination/balance right to be able to stand up in shower and washing my long hair one handed was such a chore! That was me for the whole day, the rest of the time I slept. Our problem is also our best friend and that is time. It all takes time and each of us will have our own timelines in which we see our recovery moving on.

Hi Polyanna Welcome to BTG. Great to hear how positive you still are after such a long hard fight. I agree, where would most of us be without the support of family!

Hi Maggie Chronic pain is just the worse thing to try and live with. Is there such a thing as a Pain Clinic in your local hospital? We have one in our local General Hospital and one of the clinicians in this team is a consultant clinical psychologist. She has a number of coping techniques that she teaches her patients and each year she runs Mindfulness courses. Although Mindfulness is not for everyone, the people that are suitable find it makes a huge difference. She gets great results and her patients find they can cope with their pain and get on with life. If there is no Pain Clinic might be an idea to ask your GP to refer you to a clinical psychologist who should be able to help you with coping techniques, sometimes there are other answers rather than just a pill. I hope this helps a little, take care.

Hi simon Welcome to BTG and I hope you find all the help you need. You've made a good recovery and well done on getting back to work so soon. But do take care and try and get as much rest as you can. Keeping up the fluids should help with some of the headaches as dehydration can cause them. There ar some people on here who have made a claim on their insurance and hopefully they'll be able to give you some information.

Hi Jan I was also told it was fine to fly when I felt up to it but check with your docs anyway. Will be thinking of you on 31st, I hope all goes well and that your more than well enough to enjoy your holiday.