KelBel

Hi Issy I had my SAH 11th Dec 2009 and have suffered with noise sensitivity since then but to a much lesser degree now. It has got better over the years and I find I am able to tolerate a lot more now. If I am really tired it is worse but I try not to get to that point. I also find it can be worse around time of the month also, when I tend to be more tired anyway. Hopefully you will find in time that your sensitivity eases. Good luck Kel x

Hi all, A quick update; As of last friday it had been 3 weeks since I initially contacted the hospital with my concerns and I had not received any callback. On Monday it had been 3 weeks since I had chased it up and I was told they would get back to me as soon as they could, but they are busy. I sent an email on Monday evening entitled Complaint and on Tuesday morning I had a message left on my work phone, an email reply and a call on my mobile. The secretary could not believe I had not had a reply and was getting on it straightaway I recieved a further 5 missed calls today (whilst I was in an all-day meeting at work) plus an email to say they have booked an appointment with my Neuro consultant on Weds 20th August. He didn't want to send another letter to me as he would like to explain it all to me face-to-face I look forward to getting some answers this time! Kel x

Hello lovely ladies Tina! I am sure everything is fine, I am just annoyed that he did not explain it thoroughly whilst I was there at the hospital in March! Especially as I specifically asked about it x Penny - exactly! There didn't seem to be any thought about how this news might affect me x Karen - I am sure they are happy that it is being monitored and did not feel the need to tell me about it as it could cause me undue stress. The fact I noticed these details and questioned it should have made them explain it to me in laymans terms. It would have made it much easier for me!x Daffodil - I do keep trying to tell myself there is nothing to worry about... But I do need my Neuro consultant to put my mind at rest x Thank you all. I will update once I have further info Xxx

Hi everyone I felt the need to come back on here after receiving some news this week from the hospital I was coiled at 4.5 years ago. I had a follow up MRA on 8th March this year and then had a follow up appointment with a Neuro consultant 19th March. I have been waiting since then to hear when they might repeat the MRA. In my mind, as there has been no change to my coiled PCOM aneurysm I had assumed I might get scanned again in about 3 to 5 years time... When I was at my appointment on 19th March I happened to notice an email on the consultants PC that was about me (attention to detail or just nosey...) and it mentioned that the "ICA is less conspicuous now"... I naturally asked what that related to and the consultant calmly advised that it was nothing to worry about, it is just a very small 'blister' in my brain that they have been keeping an eye on (what the hell???) and that it cannot cause another SAH so it is nothing to worry about. I left feeling a little unsure about this explanation, as in my mind a 'blister' could also mean an aneurysm!? But I tried to trust the consultants judgement. On Weds this week (08/07/14) I finally received a follow up letter from my appointment in March! (It has never taken this long before...). It reads, and I quote; 1. "In Decemeber 2009 she suffered grade 1 subarachnoid hemorrhage and underwent coiling of a right PCOM. She is also known with a small cavernous ICA aneurysm" 2. "the patient has been well and has stopped smoking" 1. The spelling and grammar is atrocious! Also they are now telling me that this ICA is in fact an aneurysm!! I specifically asked at the appointment what that meant and he specifically called it a 'blister'. He could have actually explained then that it is another aneurysm. I would possibly not be quite so stressed about it now! 2. That sounds like I have recently been smoking but have recently given up. Fact is I have not smoked since January 2007, which is actually 3 years before I even had my SAH in December 2009! I have called the Neuro dept today and spoken to a secretary who was going to email my specific Neuro consultant (not the guy I saw in March as I tend to see whoever is available, I have seen my Neuro consultant once, 3 yrs ago). The secretary was really good and completely understood my concerns and she hoped to get an answer today for me but I did not hear anything so I am hoping to get an answer on Monday now. The letter does state that following their review they have decided to scan me again in 2 years, so I guess this 'small cavernous ICA aneurysm' is not a problem then... But I do need to have some questions answered. Like; how long have I had it? How small is it? What could it cause if it gets bigger, if not a SAH? Questions I now need answered! It's not devastating but it's not great is it?! Kel x

Hi, I just caught up quickly on some of your posts. So sorry to hear about your hubby but I am pleased that he is now making some progress. I do hope that empty yogurt pot appears soon! Take care of yourself Kel x

Thanks Win - as much as I try not to stress, sometimes it just happens x Thanks Sandi - I will definitely keep asking for a referral. I might wait a week to make an appointment with my GP, as the Registrar I saw at Charing Cross did say he would write to my GP and suggest I get seen for the migraines. I have suffered with headaches of varying intensity since I was 11 yrs old. I used to get tension headaches, and my neck and right shoulder would always be really 'tight'. I then developed really bad headaches and a dislike of bright lights and strong perfumes at about the age of 20/21. The migraines started when I was 30, and continued fairly regularly right up to my SAH, and I did get some after the SAH, and I had only had a few over the past few years until the migraines I had the other week, which were the worst I've ever had. Thank you Gill & Paul - I knew I could come here and get some much-needed validation for how I feel. Thanks Mary - I guess annie or no annie we are all going to be somewhat wary of symptoms in the future. I am feeling head-achey most of the time, although I have not had another migraine since the other week. I get a lot of 'hot' pains on the top of my head and aching in the top-right-hand-side of my head too. (I don't know how many times I have had to scroll up and down to check again what you all have written! ) I need to try journaling, I think it would be useful. Thanks everyone I will keep you updated! Kel x

Prior to my recent follow-up I will provide a quick run through of what happened to me and when; I had my SAH 11th Dec 2009 I was admitted to hospital finally on 15th Dec 2009; at some point it was recorded that I had Chemical Meningitis, presumably following the 2nd CT scan with dye. I was coiled 18th Dec 2009; severe vasospasm during the op. I had an MRi/MRa Feb 2010 because of migraines & numbness in my left hand. I had a catheter angiogram to check my coil Dec 2010. I had a follow-up appointment Jan/Feb 2011 and everything was okay (didn't matter that I was having a lot of pain/burning sensation at the top of my head and in the top right hand side of my head, my annie was stable). I had an MRi/MRa Jan 2012 and then had a follow-up appointment Mar 2012 and everything was okay (despite the fact I was still having a lot of pain/burning sensation at the top of my head and in the top right hand side of my head, my annie was stable). I was informed at this appointment that I would be scanned again in a year and a follow-up appointment was made for Mar 2013. I received a letter 2 weeks later to inform me that I would not need to be scanned until Dec 2014 (which was a bit of shock going from 1 year to 3 years). 2 weeks ago I emailed the hospital to ask if I still needed to go for the follow-up appointment, seeing as I did not get scanned this year. I was told that yes I should go as otherwise I will just get discharged. I travelled up to London with my mum yesterday for this follow-up appointment. I checked in and waited 40 minutes to be called in (which is really quick!) to then be told that I need not have come for this appointment; despite that fact it was still booked in, and despite the fact that the letter last year did not mention this appointment would or should be cancelled () As I suffered a spate of 6 migraines in 3 days a few weeks ago, resulting in a CT scan at my local hospital and an overnight stay in hospital, I mentioned this and he wasn’t really bothered. He just said that it won’t be anything to do with my aneurysm as this has been stable for 3 years so I need to not worry about that, but I will need to be referred to a Neurologist to discuss the migraines. I asked how this will happen and he said I need to ask my GP to refer me. There isn’t a high chance of it just happening like that. My mum then asked if he would be able to write a letter with this recommendation so that it might happen. I feel like they cannot wait to get me off their books. He said that it is likely they will be discharging me in Mar 2015 at my next follow-up appointment. It is re-assuring in a way that they are convinced it is all okay, but as I have been suffering migraines and head pains, as well as trouble recalling the words I want to use, I am still a little worried. And I was checked for 2 years not 3 years, as I have not had an MRi check in the past year at that hospital. Hopefully I will get a referral to a Neurologist and they can check me over and put my mind at rest. Do you think I am being overly anxious or paranoid? Is it not in our nature to feel this way about sudden head pains / migraines / vomiting / problems thinking of the right words to say... Kel x

I know what you mean Mary! I think that is why I have been feeling low lately - because I haven't been doing enough of stuff I enjoy doing! Too much work and not enough play David - I have asked a few times about the lights in our office, and although they used to be able to remove bulbs they now can't do anything with the new light fittings we have (which have been in place for a year now). They are set to go lighter when it goes darker outside and they are all motion-sensored (?) too, so that when we have all gone home at the end of the day the lights turn off, so one light cannot be set different to another, apparently.. Kel x

Thanks Win Hi Teechur I've not had a migraine since, but it took me all last week to actually get over the 6 I had in 3 days I did move desk at work last week to see if that would help but it didn't seem to. It is SO BRIGHT in our office. It also caused an issue with the colleague (a temp) whom I swapped with, who apparenyly thinks I should stop going on about my migraines or work will stop listening?! He needs to be careful what he says... I decided to swap desks again this morning before he got in, as the other desk was marginally better in some ways, so he just had to deal with it when he arrived I have a follow-up at the hospital (which coiled me 3 yrs ago) this Weds so will discuss the migraines with them. And I have an eye test booked this Sat, to see if my sight has changed and to look into getting tinted glasses to see if that might help limit the risk of migraine too. Kel x

Hello Vi Sorry to hear about your hubby. It must be so hard to watch someone you love go through this. Having gone through SAH and coiling myself it is hard to come to terms with what happens to you. Fortunately I did not lose my abilitly to communicate, however I often found it difficult to think of the words I wanted to use. e.g. I might have thought 'green' instead of 'park', which used to frustrate me initially. I am 3 years post-SAH now and it can still happen now and again, but it is rare now. It can take many months for our brains to steadily recover from the onslaught of the SAH, but as Gill said do push for all the help you can get with physio and speech therapy. It is remarkable how well the brain can recover with the right assistance. You will find a wealth of advise and support here, Take care Kel x

Thanks everyone. I think I have been suffering stress almost without realising it. I have found it stressful not going to the gym for the past 6 weeks, bacause of my arm pain. I still have no answer for that just yet; I called the Dr's yesterday but they had not received my x-ray through as yet. I will try again today as I need to know now. Usually I do have a lot going on in my life and I think I have been suffering from not doing enough lately. Too much time for my brain to be thinking 'what if' is not always a good thing... thinking too much and clogging up my brain and not doing enough to clear it out! That's what I need to do, have a good mental clear-out! Take care all Kel x

Hello everyone I’ve not posted for a while again, but I thought I would let you know what happened to me last week; I’ve been having trouble with my right arm for about 5 weeks and finally went for an x-ray last Thursday morning. After that I headed to a local pub as my team were meeting for a colleagues leaving lunch. I got there quite early so sat and had a couple of cups of tea before the rest arrived for lunch. After lunch we headed back to work and I was having an interview at 1.30. The interview went quite well and I answered all questions, some could have been better answers but I done the best I could on the spot. About 4pm I was talking to a colleague and she went to show me a picture on her mobile, and at that moment a shaft of light hit off the phone and I started getting a migraine aura. This lasted for half an hour, getting bigger and bigger and then I started to feel sick. At 5pm I drove home (after the patterns had stopped) and I got into bed. I slept for an hour then woke up feeling a bit groggy but okay. On Friday morning I woke feeling a bit groggy still but went to work. At 1.30 I had a migraine starting again and felt really sick with it too. We had a team meeting and I tried to contribute but couldn’t think what I wanted to say. I just couldn’t get my words out. At 3pm I drove home, was violently sick and laid down in bed. I woke at 7pm still feeling rough, with sickness and bad headache. I made myself a cup of tea but couldn’t drink it, and tried to lay back down again but could not rest my head on the pillow because my head hurt too much. At this point I started to panic a little. I telephoned my mum and asked if they could take me to A&E to get checked over. Before I even left my flat I had to put sunglasses on as any light was too bright. I kept my sunglasses on the whole time at A&E and all I wanted to do was curl up on the floor and sleep (but I didn’t). I was asked numerous questions by the Triage nurse, most of which I just could not answer as my brain didn’t want to work and they took me through to one of the A&E beds. I sat there for some time with a sick bowl awaiting further assistance. As soon as they started to check me again I was violently sick again and I could not get comfortable on the bed. My mum left about midnight and they took me through to have a ct scan and then through to a ward for the night. I struggled to get my head comfortable on the bed but eventually got to sleep, only to be woken again for another round of questions, and then again for BP etc… and again… They said my ct scan looked okay and would monitor me until the morning. At 8am I was discharged, feeling a lot better than I had been, without the sickness but still some mild headache. I had another migraine when I got home, but I went off to bed and it relented. I haven’t had another migraine since, but have still been feeling sick on and off. It is quite strange that this should suddenly happen quite out of the blue, but I wonder if it was the stress of preparing for an interview and trying to find out what is wrong with my arm… It is a wonder?! Hopefully that is it for now though. I don’t want to feel like that again, ever! Kel x

Hi all I am extremely late finding this thread! I didn't really drink for the first 2 years post-SAH, however I have managed to enjoy a few more over the past year In fact I had rather a lot of vodka & diet coke at a friends party the other week but I then stopped drinking, made a cup of tea, then called a cab and got home and drank some water before bed. I did feel hungover the next day, but that was the first hangover for me in more than 3 years! In the early post-SAH months I felt like I had a hangover x100 so was too scared to have a drink! Kel x

Hi Caroline Sorry to hear about your accident I hope you are back walking your dogs again soon! Take care Kel x

Hi Tony Welcome to the site! It certainly sounds like you have had all the classic symptoms relating to a SAH!? I wonder if, like Mary, your bleed happened in an unusual location. It may be worth asking if someone can give a second opinion? I am not sure how you can go about that, but I know I would want to confirm that it was not a SAH.. I cannot recall when my headaches subsided a little... probably at about 9 months. I think I am so used to having headaches, having suffered daily headaches from about the age of 11 and then migraines for 8 years prior to my SAH. I went back to work 11 weeks post-op (which was way too soon really) and I was back to full-time hours within a few weeks. I was getting home after work and sleeping about 2 hours before I could even think about getting anything to eat before going back to bed. It was just so tiring and my work weren't really that helpful either. In fact, most people just expected that I would be 'back to normal' as I had been 'fixed' in hospital (I had an aneurysm that was coiled). I have been incredibly lucky that I have recovered so well. I am now 3 years post SAH; I work full-time, go to the gym 3 times a week when I can (although not able to at the moment due to unexplained arm pain) and also visit friends and family, go to cinema, out for meals and occassionally go to an art class at the weekend. I live alone so have all the cooking, cleaning etc to do myself and I kind-of keep on top of it. I do hope your headaches start to ease soon. The recovery in the first year was my hardest. It just seemed to take so long and I often felt as though I was swimming through treacle! Everything made me tired. I still get tired now, although I do cram a lot in to my waking moments!! I do find that busy places, plus lots of different noise (everyone talking at once, different conversations going on) and bright lights still tire me out massively. In fact one of the worst places I can be is a busy superstore, particularly Asda as they also have a radio station on too. Take care Kel x

Hi Donna Sorry to hear you are feeling so down at the moment. You look like such a lovely bubbly person It is so hard to feel positive when you are ill and suffering. I do hope this next round of counselling helps you. It can't all be put down to anxiety surely??.. You have been suffering dizziness all along, and you are not always feeling down like you are now, so surely there is something that can be done to ease this symptom. I do hope you start to feel better soon, and knowing there is always someone here to hear your worries and concerns is a help in itself. Take care

Hi RB-R Sorry to hear you are suffering so many debilitating symptoms. I hope you manage to get through to your GP to find something to help ease your fatigue. Maybe you could print some of the responses from this thread to take with you, to make them realise that others are suffering in the same manner? I have lately started to suffer fatigue again, but I do work full-time, I get to the gym 3 times a week usually, although not in the past few weeks due to pain in my arm. I think my fatigue is from trying to do too much all the time, so I have been trying to rest up more. I have also had some stressful news to take in over the past few weeks too, so that has drained me too. I do not know how I would manage if I had a family to look after too! It drains me if I spend more than a few hours with my 5 year old nephew... but I do love him! I really hope you manage to get something to help ease you pain. You've got some good ideas to work with from this thread already Take care Kel x

That's true Louise, I certainly don't think about it quite as much, but I don't think people realise how big a thing it is to have happened in your life. To most of us it is life changing in some way or in major ways. I think we just have to learn to deal with who we are now and focus on what we can do. Michelle - I will try to enjoy Friday to the max! we've already booked a cab for 1am... When the disco ends apparently?! Thanks sarah, this is a great group of like-minded/brain(ed) people Sorry I have not replied to all personally, I do appreciate all your comments x Love to all Kel x

Thanks everyone! No celebrations I'm afraid no-one around me seems to want to hear about it now! I need to forget about it and move on! (where have I heard that before...). Perhaps I will buy myself a little something Oh well, I am off to my xmas do this Friday (where it all originally started on 11/12/09) and this will be the first year since it all happened that I will be having a drink I have spent the past 2 years having water all night!! x

I cannot believe I have got to this point... It seems like it has flown by now, but at the time it felt like it was going so s-l-o-w-l-y... To think I started off barely being able to shower and get dressed again in a day, and now I am at work full time, and at the gym 3 times a week usually for 1 or 2 hours at a time! (although not this week as I have been full of a cold! :/ ) I was back at work 11 weeks post SAH doing a phased return over 2 weeks (yep 2 whole weeks for a phased return...?! I guess they didn't quite understand the concept of brain injury), which turned out to be a little too early but I stuck with it, even though I had some major issues with a colleague and my manager wasn't too understanding either at that time. But I got through it and I think I am much stronger for it all. What doesn't kill you makes you stronger right?! I was having yearly MRi's, but after my MRi in january this year I was informed that I do not need a follow-up until Dec 2014!! I do occasionally hit a wall of fatigue, possibly because I try to do so much all the time.. And I actually hit a wall at 6pm tonight whilst walking round Asda doing food shopping after work! That place gets me nearly every time. I think it is the combination of a full days work, then they have a radio on in there, plus all the people, the chatter, the checkout noise, the lights... Etc etc, it all adds up and tires me out! The light and noise sensitivity has got so much better over time, but too much noise and too much bright lights can overwhelm me still. I thought I would just add a little update seeing as I am quite often missing in action lately And I thought I would just add a huge thank you to Karen and all BTGers who made my recovery so much easier than it would have been had I not found you all after coming out of hospital. When I felt so alone, and no one else around me could understand, I had all you guys and gals here to help understand what had happened to me and why I felt the way I did. You made the hell that was recovery so much easier to work through! :thumbs up: Thank you! Xxx

Hi Karen I haven't been on here for a little while but what wonderful news to read that Jim is now home with you! I am sure with all your love, understanding, and patience his recovery will be visibly noticeable now he is out of the hospital! Good luck Kel x

Hello Karen I had not seen this thread before, so welcome to BTG You have already seen how wonderful everyone's comments and advice can be here, like a great big cyber hug You have done incredibly well to get to the point you are at now, having sorted everything out for Jim's return home. I hope you can take time out now and again to make sure you keep yourself well enough. It is wonderful that you have such caring neighbours who have looked after you these past 3 months. It brought a tear to my eyes reading about Jim's phone call with his friend. That was amazing It is great news that Jim is finally coming home this Friday, good luck for you and your family. I hope Jim carries on recovering well in your safe hands Much love and luck for you all Take care Kel x

Hi Steph It is really insensitive of people, especially family, to say something like this. However it is common for people to look at us, see that we look okay and assume that we are okay. Within the first month or so post-sah my dad would regularly go on at me about 'lazing around all day' and that I needed to get back to work!! Yeah right... getting up, having a shower and getting dressed wiped me out for half the day! I did get back to work [too early] on the advice of family (my dad mainly) and my GP... it was seriously hard work, but I made it through. It is not something I would ever want to repeat though. It felt like I was trying to swim through treacle every day, just to get through the day and home to sleep for a few hours to recharge my brain a little, to make dinner, eat and then go back to bed again... a lonely tiresome treadmill. I lived alone, and flat-cleaning, washing & ironing just piled up! You have a family to look after, so it must be even more tiring for you. You cannot be expected to be okay already. We don't just 'get over it', it takes time to come to terms with what has happened and adjust to the new you that has been created. I hope you manage to find something (spoon theory or Brain & Spine Foundation leaflet maybe) that your son and family & friends can read to help understand what you have gone through, are going through, and can expect to go through for some time yet. Good luck and hugs to you Kel x

Hi Patsy I hope you manage to get somewhere with the nurse specialist. It is unbelievably frustrating trying to get your licence back, on top of just trying to get on with life as you now know it. Being passed from pillar to post is stressful. I wish you luck. Fingers crossed you will get back behind the wheel very soon Kel x

Hi Daff I was really nervous before my 1st angiogram follow-up appointment. You can have a read of my thread re.my 1st Angiogram I had a follow-up MRi in January this year and have now been advised that my next follow-up MRi will be Dec 2014 because everything still looks good. Good luck Kel x