KelBel

Hi Dawn I may be wrong but I am sure you do not need a GP referral for Headway... give them a call in the week to confirm. I am sure someone else will come on here to let you know in the meantime though . Kel

I love this thread! I miss being carefree and doing what I want when I want without having to think too much about it… but I think I used to overdo it quite often pre-sah and the real positive now is that I weigh up what to do and when, and I make allowances for myself. I listen to my body more and do the things I really want to do rather than cramming everything in, and going along with stuff I didn't always feel comfortable with. I miss not having to worry too much about lots of noise. I do suffer from noise-sensitivity now, and have to beware in certain circumstances. The positive is that this has reduced over time (2 yrs), so whereas early post-sah (within first few months) I could not have the tv too loud or be in a room with more than 2 people talking, I can now cope with that, and more. If I listen to music in my car I can’t have it too loud for very long, although I do test that now and again! Some tracks just have to be a bit louder now and again – on a positive note I am more considerate for myself I occasionally miss getting roaring drunk but I know that more than a couple of drinks will bring on an almighty headache, and I am still not ready to cope with a hangover. I am happy to have a couple of drinks now and again, and then some water to balance it out and I feel good the next day It is so much better for me. Overall I am massively more considerate for myself, and I think I am more empathetic towards those who are in a less fortunate position than me. Kel

Amexdm – A great thread! I think I am about 80%+ a lot of the time now but that can dip, and like Carl I do get those down days when I wonder why I am here and what is the point of it all… but in the main I am doing really well. I am 2 years post-SAH now and work full-time (and have been back at work since 11 weeks post-op), and I do quite a demanding office job. I am the longest serving member in my team and everyone looks to me for help, guidance and training…this can at times get quite over-whelming! I also go to the gym 3 times a week, go shopping at the weekends and fit in time to see family and friends… Cleaning & ironing tends to take a back seat at home at times…although last weekend my plans fell through on Sat & Sun and I ended up having time to clean my flat properly and get some of my ironing done. It felt good. I must try not to cram too much into my weekends so that I can keep on top of cleaning, washing, cooking & ironing. I do tend to get in from work and have some quiet time; I lay on the bed or sofa, eyes closed and just rest for a while, before cooking etc… but quite often I do too much! Mary – I reckon at 14 weeks post-SAH I would have said I was about 40%. I was back at work doing a 2-week phased return at that point and it was tough, to say the least… I had just moved back to my flat on my own, and was able to drive too, but I was SOOOOOOO tired all the time. It was hard going but I got through it somehow. The Forest Gump analogy is a good one! Take care Kel

Hi Jo Welcome to BTG! It is a good start that you have now found us, and can get answers and support for the many questions you no doubt have. As others have said, lots of water and rest. Grab some quiet time as often as you can, shut your eyes and relax. Even now, 2 years on, I get in from work and have at least 10 mins quiet time, and driving home from work I usually have a calmer radio station on these days or nothing at all... It all helps to relax the brain and allow it some time to recharge. At the moment your brain is wanting the quiet time to heal itself, and that must be very difficult to fit in with your family. I also stopped drinking so much caffeine. I only have caffeine occassionally now and I believe that has helped reduce headaches. I take my own decaf teabags to work and round to friends, so that I can still enjoy a cuppa but not feel so dehyrated afterwards. I have read on here before that people have used the V-Pillow to help have a good nights sleep, and I never did buy one myself but apparently they are really good. I have a lavender pillow spray that I used a lot in the early days as I found it calming, and still use it now and again. It can also help to keep a notebook by your bed to write out the things that are troubling you, to help clear your mind for sleep - I have used that in the past too... Good luck with your continued recovery. Take care Kel x

HI Welcome to BTG. Sorry to hear about your mum. I do hope the anti-depressants start to help her, and that Headway will be able to offer some support for you all, and help her continue to recover. Do you or your stepdad keep a diary of how your mum is doing? Or can you? You can then read back and remind her of what she could or could not do straight after the stroke and what she can do today. This might help to reaffirm that she has moved on and is recovering, albeit very slowly. It is a long-slow recovery but there is almost always some recovery to be made over time, even if it is just acceptance, that in itself is a huge recovery. We all try to learn to compare ourselves to how we were when we came out of hospital to how we are now. Not compare ourselves now to how we were before we were ill. Let us know how she gets on. Take care Kel x

Hi Carl Welcome to the site! I was informed by my neuro-consultant that it can take up to 2 years for your body to recover, however I have since found out that it does not necessarily mean you will be exactly the same as you were pre-SAH. I am now just over 2 years post-SAH, and whilst I wouldn't say I am completely back to pre-SAH me, I am close. I used to have difficulty finding the right words I wanted to use, and my memory was poor - burning food and leaving the bath running a few times - but over time it has improved. Hopefully over the next year or so your memory will also improve. Getting sidetracked and easily distracted is still to some extent as issue, but that has also improved over time. Being listless and emotional still gets me at times, but nowhere near as much as it is used to. I am glad you managed to find this site by accident, as I am sure you find lots of answers, support and friendly advice here. Take care Kel

Hi Mary I believe it could be related, simply because my neuro-consultant told me earlier in the year that the migraines I had been having for 8 years prior to the SAH were due to the aneurysm growing in that time, and he said it would have hurt with it growing so much over that time. (My annie is classed as a large one, 13mm x 8mm x 8mm I think it was...). I had a couple of occassions when my migraines first started which left me unable to string a sentence together or recall the words I wanted to use... I also now realise that I had suffered from fatigue for many years. I often feel tired after doing very little, but I can't recall what I used to put it down to. I think I just thought that was how I was. Where others could go days with little sleep and still function okay, I don't think I have ever been able to do that! And now you say about hot flashes - I have been having those for years too... I used to think I was going to suffer early menopause as I can suddenly get hot and then take ages to cool down again (but my mum and sis are like this too). I hope your appointment goes well today. Let us know Kel x

Hi Jai Welcome to BTG! I hope you find lots of advice, support and comfort here. Take care Kel x

Hi Juliette Well done for taking the bull by its horns and facing your 1yr annie-versary head-on (so to speak... ) I had my 2yr annie-versary last weekend, and last friday night was my works Christmas do...I had my SAH on that night 2 yrs ago... I faced it last year and had a great night dancing my cares away, and I faced it again this year and feel like I have got over my fear of it now. I have driven myself there both this year and last and have drunk water all night. Next year I have decided I will get a room and enjoy a couple of drinks. Not too much as I don't drink much now, but I will just take it easy but get into the spirit of it a bit more! Here's to many more annie-versarys and good times! Enjoy your skiing holiday, and a very Happy Christmas to you and your family! Kel x

Hi Michelle Wow, you've had some great replies! I think everything that I wanted to say has already been said. You are not insane. You just have too much to deal with all at once, which can make anyone's emotions spiral out of control. Belated Happy Birthday wishes to Dylan! I do hope you had a lovely day. Take care Kel x

Hi Bay So sorry to hear you are suffering so much right now. I can only suggest that you contact your Neuro consultant or your GP to discuss the pain you are in, and as your MRi/CT scans are up-to-date and indicate no problems then they will need to think about medication or therapy to help alieviate or eradicate your pain. The weird sensation of your veins feeling tight - is this on the side that would have been affected by your SAH? (i.e. if you had the SAH in the right-hand-side of your brain it would affect the left side of your body... It is always best to check out these sensations/pain with your GP/Neuro consultant. Take care and let us know how you get on. Kel x

Hi Rachel Good luck with your return to work. Quote “being around a lot of people and being very overwhelmed with it all. I knew i would find it hard but didn't realise just how hard it was. The noise I found difficult to cope with as everything seems a lot louder at the moment. I was glad in a way to be back amongst the living but in another way, I was glad to get out of there and get home. my head felt like it was going to pop with the pressure headache” Oh I can so relate to this! Even now, at times in our office, now that we’ve had it refurbished, it seems somehow louder. We actually have higher partitions between our desks, which filter out some noise when you are sat down, and make it difficult to have a conversation with the person next to you!... but if people are stood up around you and talking, that noise can seem almost deafening at times. I struggle to hear people on the phone if there are 2 or more people having a conversation around me. I still find too much noise, hustle and bustle very tiring. I actually provided my manager, HR and colleagues a copy of the Brain & Spine Foundation SAH leaflet before going back to work, but to be honest I don’t think most of them read it, or they read it and ignored it’s content!! Some of my colleagues were great, and allowed me space and time to recover at my pace. One in particular made my life difficult to say the least. I was (and still am) amazed at the lack of understanding from many people though. Physical scars are easier for people to deal with. Emotional and mental scars confuse some... I might have had the whooshing sound…but I can’t quite remember?! I used to get lots of different and strange sensations. A lot of burning sensation in my head… not the usual ‘trickling’ that is referred to in some publications. I would always either ask people on this site, or call the Brain & Spine Foundation helpline to get some answers or confirmation that I wasn't going mad, and that this is something that does happen. Good luck with your continued recovery. Take care Kel

Hi Vtxrider I can understand how anxious you will be about getting the angiogram done today. I had one last December as a 1-year check-up after my coiling. I was panicking the whole week beforehand, and it was actually not as bad as I had thought it would be. Good luck Kel

Hi Carole Welcome to the site! I am glad you have finally found us, and you are already receiving some great advice on your thread. It is awful that most of us leave hospital with little or no information given to us. I do hope you manage to follow up with your GP or the hospital and get some advice. Take care Kel x

Hi Vtxrider It really is early days for you after your SAH. In the coming months you will start to notice the changes in what you are able to do, but for now it will feel as though you are wading through treacle, just getting out of bed, showered and dressed. I do recall that time. I am nearly 2 yrs post-SAH and had one largish aneursym coiled a week after my initial SAH. It is hard to believe that things will get better, and you will be able to regain at least some of your previous life, if not all of it. It just takes time. How much time depends on individual circumstances, and how well you treat yourself early on. You have to allow your brain time to heal. Take care of yourself, be nice to your brain and it will reward you along your way to recovery. Kel x

Hi Anne Happy 4th Annie-versary! That is great that you have regained another little piece of you May improvements continue to shine through Take care Kel x

Hi Mags Damage to the hypothalamus came to mind, which I have now googled...and I must have read something in the past as the hypothalamus, located in the middle of the brain, does control body temperature as well as a number of other functions for the body! It apparently also controls hunger, thirst, fatigue, sleep, and circadian cycles (body clock). I do believe I have read that SAH can cause damage to this area of the brain (although I need to do some more investigation now), which would make sense that we suffer from undue fatigue and difficulty sleeping... The more I read about it on Wikipedia the more intrigued I am... there is an area of the hypothalamus that controls food intake and 'stimulation of this area causes increased food intake' - well that explains it then. I think mine was massively over-stimulated! I wonder if there is a way the dr's/neuroconsultants can determine if the hypothalamus has been damaged? Kel x

Hi Shirls I do hope I haven't scared you too much by giving too much information. I actually watched a youtube video of the procedures so I knew what to expect!? Yep slightly crazy I suppose. I also watched a film of a coiling operation about a month or so after my op... I just have to do these things... Kel x

Hi Shirls You are definitely not alone in feeling scared about upcoming scans and angiograms. With regards to MRa I have had 2 of these which lasted about 15-20 minutes (although it depends what they have to check). I was more apprehensive on my first one, as I didn’t know what to expect, however I wasn’t so bad on the second one. The nurse was lovely both times though and really put me at ease. You are given ear-plugs to help drown out the noise inside the MRi machine. I believe that in some cases you may be injected with dye to show up the vessels in your brain for the MRa however I did not have to have that done (only when I had an initial CT scan prior to confirming SAH). You lay on a bench and go backwards/head first into the MRi machine, with your head in a cradle-type-thing with a mirror on it, so that you can see out of the ‘tunnel’. They give you a buzzer to hold, to press if you want to come out of the machine for any reason (and although I wanted to press it, I decided to just get on with it and get it over and done with!). I kept my eyes open and kept counting silently to 60, in an attempt to wile away the time I was in there. It is quite noisy inside the machine, as all the magnets are moving around to get the images, and I did come out both times with a moderate headache. With regards to an Angiogram I started a thread for my 1st angiogram check-up . I hope this might help you to understand what to expect. Please send me a private message if you have any queries. Take care Kel x

Hi Rachel Welcome to the site! I had an aneurysm SAH so as Bill says we had a cause and were operated. I cannot imagine not having a reason why SAH happened. To me it has been difficult enough knowing what caused it. Although I have still suffered from a lack of information from both hospitals that dealt with me, and also from GP's. Blank looks are quite normal now, and I tell them more than they have ever told me!... but it is quite rare for a GP to see an SAH case, although when they do it would be great if they could do a little research...it would be more reassuring! I hope you manage to contact Headway and get some advice from them if they are in your area. I have not used them personally but others on here have done so and made great friends there. You can also try the Brain & Spine Foundation who have a wonderful helpline staffed by Neuro nurses if you have any queries/worries. Good luck in your continued recovery Take care Kel x

What a great idea Jod-dee! I love it, I have sent a link to my sis as she is suffering hot flashes at the mo...and I think I will get myself one too for when I go on hols to keep me cool Kel x

Hi Mike Welcome to the site! Great account of your SAH. You were also lucky to be out of hospital after a week. It is good they located your SAH so quickly. The emotional side of things does take time. I am nearly 2 years post-Sah and most of the time I am okay but occassionally I feel very emotional about it all. It has got a lot better though and I did have some counselling initially. Take care of yourself and try to allow yourself to rest and heal. Kel

I think the old deep breaths are the best option; breath in for a count of 6 and out for a count of 11' is the best one, as the more you get frustrated, the more you can't find the right words and get yourself in a state, ready to blow... It is so hard when others are getting impatient... you just have to remember that you have been through so much and they can't even begin to fully understand the enormity of it all (even we struggle with understanding it ourselves!). Take care Kel x

Louise – Congratulations on your 12th Annie-versary!!! That must have felt fan-blooming-tastic for you to have climbed half-way up Arthur Seat! Recognising and knowing that you could not have done so 5-6 yrs ago proves you are still able to improve and recover many years after such a traumatic event. You are an inspiration for others! Do you keep a diary? Have you ever thought about getting a Polaroid camera to be able to take automatic photos to put straight into a diary to aid your memory? I think Polaroid cameras are quite expensive though, and getting hold of the right quality photo paper can be difficult, but it is an idea… Here's to many more years of recovery for you! Take care Kel x

Hi John, Thanks for highlighting this piece of literature, which sounds like it has been made up or misunderstood. Well said Bill! :thumsbup: Having been coiled 7 days post-SAH I can confirm that I do not feel I have 'recovered' 20months later... but I do look okay - so I am told by many - so therefore I must be okay If only they knew... Kel x