KelBel

Hello Maggie! And a belated "Happy Birthday" for yesterday! My bad daily headaches continued for about 6-7 weeks after the SAH and then started to ease off. I then suffered with a lot of neck pain, which I was told was caused by anxiety, and I was very anxious and stressed for many weeks. My main issue was having no information upon discharge from hospital, and having to search the internet and read through this site to gain an insight into what I'd had done, and what to expect. Also, a severe lack of aftercare hasn't made it easy, nor has the loss of money at work due to sickness and then reduced hours. I have now been referred for counselling via my Dr's surgery and have my first appointment next week! I started asking to be referred back in January but they wouldn't initially agree to it... The things we have to go through...it can only make us stronger! The others have said it already, but lots of rest, listening to your body when it is telling you to slow down, and lots of non-caffeine fluid (water being the best). Take care Kel x

Hi Anne, I am nearly 6 months post-SAH and suffering from being 'TATT' (tired all the time!). I spoke to my GP last week and he said my iron level looks a bit low, even though it is not showing I am anaemic , so I am having more tests and also having my thyroid checked too, as that can cause tiredness. I will let you know results when I get them (well...I will at least try to remember to let you know when I get them! ) Best to get all things checked I reckon Take care Kel x

Hi Blueday I hope you are well. I was thinking at the weekend we hadn't heard from you for a while... Thank you for sharing that! Looks like Nikki may be close to me, as she went to my local hospital (which I did not go to as their scanner was down at the time I needed it!...) and she was also coiled at Charing Cross like me... I will have to read it all later as there is a lot to read, but thank you for finding it and sharing it! It looks very interesting... I also hope I can find a way to get in contact with her... Take care Kel x

Hi Haydn I was never a massive fitness freak, and my curves would prove that! Sorry to hear you are feeling so low, I can imagine it must be torture for you after having been such a fitness fanatic. When your body doesn't seem willing or able to do what you want it to do, it is hard to come to terms with it. I am nearly 6 months post-sah and have not as yet found the courage to go back to the gym. My GP and the neuroconsultants' assistant have told me I am ok to go back but I have felt so tired returning to work over the past 9-10 weeks, that I haven't as yet found the energy/courage/time to get back to the gym. I had a short walk with my mum, sis and dog yesterday round a park then fell fast asleep when I got back for half an hour...which seems crazy to me. We only walked for about 15 minutes! I do hope you manage to find out why you are feeling so ill right now, and you get some help to get back to some level of fitness at least. Kel x

Hi Laura Sorry to hear you are feeling down at the mo. Sounds like a difficult time for you. I have not been allowed the pill for years due to my weight, the fact I used to smoke (a lot), and I had borderline high blood pressure for years... I was offered the mini pill but didn't like that idea. I am not able to help with regards to the coil, but big hugs for you. I hope you manage to get some answers to help your decision. Take care Kel x

Hi Jan I have had neck pain and stiffness in my neck, which scares me, but it's not really a vice-like sensation so at nearly 6months post-sah I hope I don't start getting something like that... I do hope it starts easing for you. I was told my neck pain was anxiety. Sorry to hear you have been hit with so many infections too. Not nice. I do hope you're able to go on holiday and you have a lovely relaxing time. Kel x

Hi Kate We definitely know how you feel...it is my biggest frustration, after the lack of medical support and after-care, that others just cannot (or will not even try to) understand what we have been through. It is definitely a case of ignorance is bliss sometimes, I think some people are too scared to want to hear about it. (Even my GP's have literally told me to get over it and that sometimes we just have to push through our barriers, i.e. tiredness, and get back to normal! If only it was that easy...) Take care and hope to hear more from you. Kel x

Laanka Good luck returning to work. Take it easy. A little nap after work will do the trick initially Kel x

Hi John Glad you're here too You have had a lot to put up with and work through, and you seem to be doing a brilliant job remaining positive! It is difficult wanting to piece together everything that happened, and wanting to know how, what & why, and wanting to return to pre-SAH 'normality'. It is hard to come to terms with the new post-SAH normality, but we will get there at some point. Good luck at your 6-month check-up. Take care Kel x

Angela, Great photos! Glad you had a great hol and Mark had no ill effects from the flights. Mark is doing amazingly well, I definitely think positivity and determination are tremendous factors in aiding recovery. Long may it continue for us all, Take care Kel x

Hi Mark Welcome to the site! I hope you find some answers as well as friends on here. I am not able to answer re.critical illness cover as it is not something I have, nor had to contend with; although like others have said, do persist with it and base any information on worst-day-scenario to ensure maximum payout due. If the cover details stroke then I would think it includes haemorraghic stroke, which is what an SAH is classified as. It would depend on the insurance document definitions. Good luck with Annette's continued recovery and take care of yourself too, Kel x

Glad you're all done now! Wow - you're expensive! Rest up and take care x

Apologies for not posting before. I have not experienced AVM so was not able to offer any help. So glad to hear your mum has managed a whole day without sickness though! That is brilliant, and long may it continue. Hope she goes from strength to strength now. Take care Kel x

Hi Anne I am sure I have read that vasospasm is a kind of stroke also, but there is some contradictory info on the net. I have just checked it on wikipedia and it says that "Vasospasm refers to a condition in which blood vessels spasm, leading to vasoconstriction. This can lead to tissue ischemia and death (necrosis). Cerebral vasospasm may arise in the context of subarachnoid hemorrhage. Symptomatic vasospasm or delayed cerebral ischemia is a major contributor to post-operative stroke and death especially after aneurysmal subarachnoid hemorrhage" Sounds like it is not a stroke, but I am sure I have read something else that said it is... I had a severe vasospasm during my op, in the middle cerebral artery region, which caused initial left-sided weakness. I still get pins & needles in my left hand, altho an MRi didn't show any problems. kel x

Hi Louise Yep, I can confirm that a 2-week phased return is definitely not enough! It is just lucky that I had holiday left to take from last year... I try not to work too hard, but that's just not me... I need to find a new direction... Kel x

I was offered a 2-week phased return, 9-1 the 1st week and 9 til 3 the 2nd week. I had holiday from last year so took the Friday off both weeks. I was then back to 9 til 5.15 week 3 but took 2 days off, then a day each week off to ease myself back. I was also only able to be paid the hours I was 'physically able' to work, and if I needed to take a break during 9 til 1 that would have to be factored in to my pay...!!! My jaw must have been on the floor as I couldn't believe they actually said that!... I said no, cos I thought I will just wander off for a bit every hour or when needed anyway, liek everyone else does! To say I am disappointed & disgusted with their treatment of me would be an understatement. I sent a copy of the Brain & Spine Foundation SAH leaflet to my manager back in January who sent it to my team, and then I sent it on to the HR advisor following my appalling return to work meeting... it made no difference whatsoever. It has been extremely difficult coming back to work. Some people have the capacity to try to understand what I have been through, but others either do not care or just do not want to know. With some, it is as if I was off with a bad cold and I am all better now. I look okay so I must be okay now. I also feel like screaming! When I told my manager and HR that I would have to go back for an angiogram in December they asked how long I will be off for, and did I know that any sickness payment will not kick in again until 14th December this year!! My manager also commented on my timing - having been off at the busiest time of the year in our department... I think it was supposed to be a joke but I did not find it funny in the slightest! I am already back full-time, although I did mention to my manager last week that I may need to reduce my hours. She asked for how long...as HR would want to know, and advised that I will need a Dr's letter to confirm this is required...I am seeing a Dr again next Friday so will ask him to draft something then for a month. I find that when I am looking into complex queries I get a burning sensation in the top RHS of my head... I get a lot of neck pain when I am tired, and have felt like I could fall asleep at work some days. I hope you manage to sort out a 'proper' phased return. Kel x

I was thinking last night that we hadn't heard from Saffy, so am also hoping it all went well! xxx

Hi Jan I would also say stay off until you have it all in writing...if I could go back in time I would not have returned to work when I did. I was offered a 2 -week phased return, and then back to full hours but I reduced my days by using up holidays... In the past 9 weeks I have only done one full 5-day week but am doing another full week this week. It is hard going. I am very tired. I wish I had gone to see a disability advisor or got some help from somewhere, but I didn't feel strong enough at the time to do things on my own, and have not exactly had an awful lot of support from either the medical profession or my employer. I imagined things would be very different. I am shocked by the lack of understanding, and the lack of support. Very frustrating. Hope you get your letter soon. They are certainly stalling. Actaully I didn't get a letter either from my work, which I would have thought they should have done... although I did put the info in an email to the HR advisor and my manager regarding our meeting...and the discussion around the phased return. Take care Kel x

Hi Zoe, I am so sorry to hear you are having such a stressful time. And no, you are definitely not being selfish. Not at all. As the others have said, you do need to gain some support from your GP, and hopefully you will be able to get hold of someone equally as helpful as Jen's council debt counsellor, who seems to have helped them out immensely. I can't imagine how difficult it must be for you. Good luck, and do keep posting to let us know how things are going, good or bad. We are all here for each other. Big virtual hugs for you Take care Kel x

Hi Leon! Welcome to the site. It is inspirational to know someone who is going strong after 20 years! Kel x

Hi Karen I did not know at first that the SAH was a type of stroke, as when I was in hospital being asked to sign the consent form to have the aneurysm coiled, I was told that; if I had the op I would have a 5% chance of having a stroke and without the op I would have a 95% chance of having a stroke – therefore I initially did not think that the SAH was a type of stroke! Having trawled the internet after discharge (when I was able to) I then read somewhere that an SAH is a haemorrhagic stroke. But it did not state that in all the information I read so I was still a little bit confused as to whether I had had a type or stroke or not; although I now know that I did. The FAST campaign is good for the well-known type of stroke but not for SAH. I agree with John, I have to know what is wrong, and why it has happened, and when, how, who or what may have caused it and what to do to prevent it. Knowledge is power and I also like to know. That is one of my biggest problems with my ‘story’, the lack of information provided, even when I have asked questions I have not always been given the information I needed. I apparently did not have any neurological deficit when admitted to hospital; however I had experienced classic symptoms of SAH in the 4 days prior to being admitted. It felt as if something had gone ‘pop’ in my head, then I felt pressure in my head, then felt nauseous. After about an hour I started to get a stiff neck and had trouble looking down and then needed to sleep. I woke up feeling sick again and was violently sick for some time, having to hold my head as it was difficult to bend my head forward to be sick. I then suffered with excruciating headache at varying degrees, for days; which at times felt as if someone had smacked me round the head with a baseball bat. I too suffered with migraine for years; they would start with me experiencing pins & needles and numbness in my fingers, nose and lips, a metallic taste in mouth, followed by an almighty headache with scythe shaped kaleidoscope patterns, and then nausea. I would have to lay down and sleep for at least an hour, and would then feel as if I had a hangover for at least 48 hours… I find it amazing that some people get loads of after-care and others, like myself get nothing! It's no wonder I am struggling with the emotional side of things right now. Kel x

Good luck Saffy! Fingers crossed for u xx

Wow, what a story! I had my eyes tested recently and I shall make sure I get checked each year now rather than every 2 years... better safe than sorry. Karen, Thanks for finding that story and sharing it with us. Kel x

Hi Lynz, sorry wasn't on to see the posts yesterday afternoon but am glad you are feeling better today. The ups and downs post-sah appear to be a difficult & rough ride at times... Take care Kel x

Hi Homer Welcome to the site. I managed to find this site within a few weeks of having SAH and coiling so it helped me realise what I was feeling, and helped form questions for when I had my initial follow-up appointment. 13 years is a heck of a long time to be alone...I am glad you have now found us all and look forward to hearing more from you Kel x