Daffodil

Hi Kel. What a lovely uplifting post . It brought a tear to my eye and made me happy to read how you are doing 3 years on from that mega event. Well done. It inspires me.

. I too have a smaller untreated anneurism which is being watched but also considered to be ' insignifcant', eg not worth coiling yet. Sometimes the choice of words could be better thought out. You asked what would we do? Me? Well I had no appreciable symptoms before I had my SAH , nothing to say that something would pop but then it did anyway. You on the other hand have had a vile headache for 3years but the neuros are happy that it's not being caused by anything visible on their scans and seem to be saying dont worry. It's worth asking yourself what would 'good 'look like? What are you hoping for and maybe focus your effort on acheving that. Is it a confirmation of what's happened? Are you ok that they might never know this long after the initial event? Is it getting a second opinion? Is it getting help for these headaches so they stop interfering with your life and bring you some relief.? That's what I would do, focus on the specific of what I want now. I really recommend Headway, they may be able to help you navigate the support thats out there and maybe get some alternative views and allow you to move onward with this, hopefully to a diagnosis but if not then to live with the effects of your brain change. Only you will know how to move forward. You hopefully feel reassured that there is nothing on the scans but this still leaves the headache mystery so I understand your misgivings.

Hi Lorraine. Glad you found BTG so quickly. As Jord says, headaches are normal, very common. If you think what our poor brains put up with then it's hardly surprising. Take it really slow, I can't recommend a better way to recover than at a tortoise pace but I just clocked up 9 months since my SAH at the weekend and am having some really nice days now as long as I remember to intersperse them with resting. The good news is that our brains are amazing but remember they use a massive amount of energy just to do everyday tasks so will need even more nourishment and care now they're healing. Eat frequently, drink even more and rest rest rest. Oh and smile be well. Wishing you all the best.

Lisa. Sorry it's a bad morning for you. Pretending you're ok only works for a while. I m sure the feelings you are having are the strange neurological healing process , I think you said you've been scanned recently and theres nothing untoward going on , so try and take each new day as it comes. iI'll share what I learned. Early on in my recovery I had days where I felt just like that. Every pain was exaggerated, every ache was magnified. I didn't think I was having another SAH but I did worry what was going on and wished it would stop. I felt awful. But this recovery isn't like others ive had where you battle through it, you have to accept the rubbish days, the feeling awful and accept that they are part of getting better. To deal with that thought I had to create ways to relax. I couldn't do what I normally did so i created New ways to wind down from my anxious state. I also explained to the kids that I couldn't do everything they or I wanted but that by doing little it should help me get better. Lisa it has. I am doing so much more these days and those dark days when I was intensively healing are less. Usual advice, cry lots, drink more, sleep and do little bit by bit. Your amazing brain is trying its best to fix the damage. Be kind to yourself. You can't rush it, it won't let you.

Brilliant. To return to what you love, the career you have fought hard for. I am sure there will be tolerance and compassion from your health colleagues as you start your slow ramp up, equally try not to be frustrated with yourself at the slower pace and see this as the gift it is to continue your steady recovery. George William Curtis said "Happiness lies, first of all, in health." you as a physician will help bring that happiness to other people whist regaining your own. I wish you well Dr Vanessa.

Hiya. To reassure you if you didn't have hydrocephalus at the time of SAH the I would guess it is pretty unlikely you would get it now. If you had it at the time and had an EVD and its returning then you would have a sensation of increasing pressure that reaches such an intensity that you can't lower your head . Trust me you would know As always though if you're worried get it checked, the hospitals will understand your concerns and should scan you. I had lots of backwards steps , the headaches arent easy. I mean how are we supposed to know if something is normal recovery or to be checked out? The answer is we don't know and you have to start trusting your instincts again. . This SAH journey is not easy. It's gonna hurt somedays. Sorry that we can't take your pain away. Wish we could . Keep resting as much as you can.

Emotional...yep. I only have to see a baby now and I sob! Me, who didn't cry at the birth of her own kids is now prone to bursting into tears at anyone's newborn,and kittens, and people in pain, and a lovely sunset....I could go on. This new found instant water works is quite nice really and it does help relieve a headache i find. Seriously though my emotions run a lot closer to the surface and I can't hide or manage to stop it like I probably used to. But that's ok.

Hi Jord Hopefully you are tucked up in your own bed at home having had a lovely cuddle with your little one tonight. I hope your head has eased in morning. My headaches when I came home were epic in proportions. My poor kids, the slightest noise made me shudder. Still ocassionally do , a doozy of a day today. I also had anxiety about the amount of sensations I felt , especially post shunt. Like Penny I have had scans to 'check up on things ' Some of my coping techniques in the early days were increasing the regularity of when I ate. I didn't wait to feel hungry. I figure the brain must use a massive amount of energy to heal so porridge became a close friend. I meditated and still try to do that even if I do often just end up falling asleep. A friend bought me a cd of crickets chirruping ...don't laugh everyone, it masks the hissing and high pitch buzzing great so I Can get off to sleep:lol: I try to achieve one thing each day but also accept that some days it's just about healing and that means nothing and that's ok. This was and still is VERY hard to accept. Shout your worries and we'll hear you. Oh and Win's right on with the tea and singing. Drink tea and hum. Sleep tight.

One last thing, don't leave your phone at home if you go out....I did. I Panicked my entire family for an afternoon early on. I Got back home after feeling very pleased with myself for having an unaccompanied walk to be met by worried family members, one of whom had left work to come and check after I didn't pick up....oops We will not be the only ones worrying , that I promise you. I'll stop dishing out advice now!!

Have you ever been at the top of the stairs with a load of washing and missed the first step? Ever stepped back off a ladder and missed a rung? I know it's going to sound really patronising so i apologise but bad stuff can happen in the simplest of situations and in good health we normally don't worry or give it a thought ! We carry too much going down the stairs, we insist on climbing unstable ladders, we are invincible. Then it changes. My doctor said to me that I was safer than I had been in a long while. That was a comfort. Most people dont know whats in their heads. My ticking time bomb has gone off , they reset it and now I get to bumble along at a different pace not knowing what happens next. Like I always did, i just never thought about it before. Now Im trying not to think about it constantly. What I'm clumsily trying to say is that worrying about this happening again is stealing the time you've been given to enjoy with your little ones. I know none of us can stop worrying just like that, me included, but we can try and limit it being a thief of our joyful moments. Put some practical things in place for reassurance. A neighbour maybe who will check in on you each day unless you call them. Teach your son through play how he can dial an ambulance. Instigate some quiet times which give you chance to rest. Then take a deep breath and play. Watch Tv. Forget for a while. Those stolen moments of peace from our awful thoughts are rare in the early days but more precious than gold. And don't tempted to climb any ladders!

Hiya Steve. Hiking guide sounds like it would be a peaceful job , I think I'm envious. Glad you are doing well apart from the headaches. I have developed a theory on the headaches and it's just a theory ! I have no medical back up at all. Quite a few patients who have a bleed also have hydrocephalus, I'm one of those folks. Basically the ventricles go aaaaah! Blood! Shut down, shut down! Then the head starts over filling with CSF. It's quite common with SAH or head injury. Now in my case there was damage which meant my ventricles never rebooted enough to do their job properly so I ended up needing a shunt to manage the CSF pressure. Here comes my theory. That your lovely ventricles whilst they did a great job of dispersing all the blood over time they might not work as smartly as they used to. I think this might mean theyre slower to recycle the daily CSF level and more sensitive to pressure changes . My friend has a head injury and gets headaches and we think that could be a plausible reason for why she gets them. Also if my CSF pressure is too high or too low then my BP spikes as well. I learnt all this before I had the shunt placed and had an external drain and then a lumber puncture and became versed in spotting my own signs of pressure. I keep an eye on air pressure daily because I am learning that if it's very low or very high it affects my shunt pressure and creates worse headaches. I just think it possibly could do the same in someone's fully working yet ever so slightly contaminated ventricles. Like you I like to understand stuff; i drive my doctors nuts with all these questions. I hoping Kris or Vanessa read your question as they actually understand this stuff and will give a better answer. my theory is probably complete rubbish but thats ok Daff

Hi Lisa. Glad they checked you out for clots. That's good. And they're going to send you to see a specialist too , great you're getting attention and listened to. I had a lot of shoulder pain post my SAH. It made me breathless it hurt so much. Im sorry i don't have any answers for you to make it better, all I can say is just make sure you take your pain medication and i found alternating heat and ice packs eased some discomfort for me. Someone suggested it could have happened in the surgery , or how I slept in hospital but I dont know the reason, Now 8 months out I get it rarely so it has passed. Dealing with constant pain is awful, If you can try and find something that works for you to take your mind off it for short bursts. Your little one is too small to understand probably but needs to know mummy cant do the rough and tumble right now. I suggest for the time being Grandpa should take over the 'throwing about' and you do the less strenuous stuff, I'm thinking jigsaws, reading, colouring.. It wont be forever but if the shoulder is like mine was you probably find it easier if you rest it. Be kind to yourself Lisa.

I wonder how much is tied up with reduced confidence. That takes a beating doesn't it; things we can't do any longer, loss of our normal, tasks and actions we are maybe are fearful to do because we're not sure of the effect. The upshot for me is I've definatly lost some confidence so my assertiveness definatly is not what it was Dawn. It's interesting how it manifests though, I am still able to articulate what I want but emotion is much closer to the surface than previously. I had a scenario in hospital post shunt op where I had to be assertive about what needed to happen and whilst I made my point I also burst into tears straight afterward. I've repeatedly done this since in other situations, I've had to disappear and hide when I've stood firm with kids and then knew i was going to cry. Not sure where I'm going with this:lol: to sum up I'm just more of a cry baby now Dawn

Yes to what Sandi and Vanessa said. Sunglasses are great, I even watch tv in them sometimes. My pre discharge eye check showed the need for glasses or reading which was new post SAH but in general my 'windows on my world' are the first warning sign if I'm headache bound or overdoing it.

Vanessa I think we all turn into old moos Michelle. It's a learning curve for me to ask for help, not to be the self sufficient creature I like to think I am. I'm learning from it though. Most people , certainly some of my friends , are not confident enough to step in in case its seen as intruding or interfering. In a crisis it's like they're given permission to act how they would like to for that time but some revert back to their perceived polite distance as you heal. Me? I was always confident ( brash maybe?) to think I would have something to offer someone and always offering help, opinions, maybe when it wasn't needed, but i can see now that if I use my confidence to ask a friend for specific help it brings us both together which is something we both enjoy regardless of how it was brought about.

I've thought about this a bit too. When I was hearty, healthy and fabulously busy I saw friends at work, at the school gate, for nights out without much thought or care to be honest and it was always last minute and rush, rush, rush. Now to catch up I have to organise and plan ways to meet friends (most of whom work) plus i bring restrictions on what I can do. That's probably not much fun! for them nothing has changed, they're still busy, busy, busy and now the initial shock has worn off they are more secure I'm ok so I'm not a priority visit any longer, I get that. So I find my days are less visitor focussed and with less visits but I have become really good at asking friends for help and I've found that they really like that. and you know what, so do I? Asking for a lift here, a helping hand with the kids there has been liberating for me. I am so used to be the one to ' do stuff' that it's nice to be helped and it gives me company to do the things I want to do. So just sharing that I think it's normal that people get back to their routines but the ones who care and love you will still take time to smile, listen, and nod and open their arms if you ask them to help out. And that's what friends are for. That's my experience anyway.

It was explained to me that the stomach and shoulder share a nerve, apparently One can trigger the other off, I get this shoulder pain infrequently with my shunt tubing and it's horrible. I alternate hot and cold packs for relief and take a strong pain killer. Also massage like Win suggests works nicely. Definitely keep talking to your GP .

Hiya Debbie That's a lot of information for anyone to take in, hope your doing ok with the news. When I went in for my follow up angiogram the neuro radiographer explained to me that they were checking that the coiling was intact and hadn't compressed. (.like you i have another tiny one they are keeping an eye on as well) When the coiling compresses it creates a neck on the anneurism and that is where it is most weak. I asked what they would do if it was and they explained they would either stent ( basically run a pipe that bypasses the blown anneurism) or clip it. It sound like this may be the scenario that has occurred For you. I know plenty of people on site have had their anneurism clipped and tell your what it involve; it will mean another post surgery recovery I'm afraid. If you're at all unsure then you can always ask for a second opinion. You are strong. Ask family and friends to help you investigate about the mortgage, you may be entitled to some support. Same goes for sick pay, just because you've been off before doesn't mean you can't get it again, they may have insurance themselves that covers workers pay, many do. I recommend Headway, definitely phone and ask for their help on planning and getting you through the next stages. Best of luck. Daff x

Yep I'll defnately accept the panda eyes as my SAH badge of honour over the alternative teechur ! Thanks everybody for pointing out the positive which is that I do care now and I wouldn't even have a few months back. So far I think the lipstick works best as when I put lippy on people comment on how well I look: maybe I just looked a fright before and it takes their attention away! nice one Mary! Am trying the cucumbers, like that, thnk I'll gve the tea bags a miss for now. Sleep is the answer then, making sure I'm getting enough. I also think I have been letting the water intake slip so it's kicked me up the bum to up my levels again. I'm with you on the photos Michelle. I duck quickly.

Debbie. What a story of survival. Thank you for sharing with us. Mums are blooming amazing aren't they. I include us in that statement too! how's your daughter doing? My youngest came out with yesterday "I hate Wednesdays because I worry you wont be here again " . I basically went off to work one Weds morning in March and never phoned and didn't come home. I was so I'll when they were allowed to visit me 10 days in it just upset them and me so much and then when I came back home 31 days later I came back different. she's been worrying that might happen again. Not surprising really. No words to falsely promise a happy disney ending but plenty of cuddles yesterday and we've come so far. My mum like yours has been an absolute rock through this and I doubt I will ever know the anguish and pain she went through ,( and still probably does)to help us but i know that she eased my suffering on many occasion. Your mums biggest gift is having you with her still I'm sure; maybe you could write her a letter to let her know what it's meant to you. Like you I find this site a comfort and a place to ground myself. It's stops my fears becoming overwhelming as this reminder of our fragility is a scary business. I hope the return to work is going ok, glad they are being so good to you, that's nice to hear. I aim to start back in the new year so will be interested how you fare as it wil be similar timescales. Take each day as it comes and be thankful for it, that's what I try to do, some days more successfully than others Best wishes Daff

Ladies I direct my post mainly at you but gentlemen feel free to join in the discussion. Since my SAH I have noticed that I have developed very pronounced dark circles under my eyes. As per the title of the post on most days I resemble a panda. It hasn't really bothered me til now, my appearance has not been a priority at all but the last few days I've gone to the effort of putting on some concealor because I look so dreadful and lets face it Halloween is well past Does anyone have tips they can share to reduce dark circles ? . Is it a vitamin deficiency or just evidence of the tiredness? I know there are far worse things to worry about and i should not be so vain but , hands up, I confess, I don't like the panda look. Having felt like I've survived by the skin of my teeth is one thing, to actually look like it is rather a bad reminder. I figure someone will have some ideas.

Hi you Gosh it's horrible isnt it. And your trying to be mum too whist getting better. Hang in there. Big hug. Wierd sensations are not uncommon , at least not for me. One of the other members Kris I think, could probably explain why the brain healing creates such wierd sensations. Does it feel a bit like banging your funny bone but with different parts of your body getting the tingling impact?. Not pleasant at all. Headway offer a helpline which I've used staffed by nurses . It's not open today but strongly suggest you speak to them. Tel. 08088002244 . They can offer some really solid support and reassurance when you are feeling worried and unsure. But get checked out if youre concerned Keep talking and letting out the worry. That will help. Daff x

This made me smile with familiarity. I've been keeping an infrequent blog and my last update was about air pressure. I definitely get affected by the weather, mind you the shunt probably acts like a barometer! http://popgoestifty.blogspot.co.uk/

I've been pondering this morning about work ...and just sharing my ponder. I'm not back working yet and reading and learning from your experience on this thread and others is hopefully helping me make sensible decisions about when to go back but also realism of what to expect when I do. You have all taught me something. I'm not sure I'm going to be able to do what I used to. I don't just mean in terms of concentration and ability but in terms of energy and commitment. That's a scary thought but one I'm trying to adjust to now before I go back. For me that's a hard thing, knowing I can't be who I used to be, work how I used to work, achieve what i used to. So much of my work fulfillment was tied up in those things and now its going to change. Sure I could say I'm excited to learn new ways of doing things but I'd be lying. Recognition of my capability by coworkers was something I was confident of, now they're going to discover I'm not the self sufficient, able person I once was and I'm not even reconciled to that yet. How will I manage their expectations?. Wow, that's a big change and adjustment to get used to . A reminder of the fragility of our ability and how it is based on the equally fragile support from a healthy body. but forewarned is forearmed and already I've been able to have a frank and honest conversation with work in readiness for return so that they know they're not getting back the worker that left. I'll let you know how i fare as my back to work story unfolds.

Hi John, I'm one of the new recruits so we haven't chatted before. Nice to meet you virtually. Sorry to hear about your challenges , that doesn't sound a healthy situation for you right now and i hope you can get it resolved quickly so you dont suffer. Belonging to a union is a good thing, they will be able to draw on a wealth of experience and offer support to help you hopefully reach a workable solution. Typically you will find the that whilst occ. health can make recommendations for what needs doing for someones initial return the workable application of this must be agreed with HR and line management. Its sounds like that bit got missed out for you here and its worth going back a step and asking the right people to regroup and explain why you need adjustment and what it looks like. Some advice for all is that when you are making new arrangements at work it's always worth asking for confirmation in writing or doing it yourself with email after agreement is reached just so you have a record. Memories are short...well mine is now The disability act covers their responsibility to make reasonable adjustments but when it changes the nature of how you do your job or in their belief limits the success of that role they can ask you to take a new position. Im not sure wherher they are saying this job must have flexibility to travel, it sounds like they are. As for getting you to take a pay cut, if they are proposing changing your work role and remit then they are able to offer a pay cut this under you signing and agreeing new terms of contract, but if it's the same role then take advice. By the way it is for them to prove you can't do your role based from campus before they can insist on a role change not for you to prove you can, the onus is on them. My best advice though John is to talk to them. Get talking and understand their concerns but also for them to hear your current challenges. Reasonable adjustments are a great thing if they are done with the consultation and involvement of all, then they tend to stick and work because everyone understands and has a stake in it. Please don't get too upset over this, there will be people there who know how good you are, want you to continue to be successful and to find a solution that will work. I truly believe that, maybe I'm naive but I think most people like to help and not see others fail. Happy if you want to pm me some specific questions. Daff