Daffodil

I wish I'd been told...well what i think what would have been most helpful is some case studies of real SAH recoveries so I could navigate how I was feeling. Maybe a reading list, I would recommend some now. I got a good level of support overall but the following would have helped.

That I'd probably suffer from panic and anxiety at some point after discharge and some information and techniques for me and my family on how to help if and when this shows itself.

Some information on What symptoms are pretty normal and what aren't. I for instance got told a headache would be normal so I put up with excruciating head pain thinking that'd what I should feel like when it was in fact hydrocephalus returning, (not uncommon)but it was my GP who picked it up and ended up having emergency LP and blue lighted back for another 3week stay.

That I should seek counselling ( idid anyway) that I should see GP regularly ( mines been fantastic ) and that I should speak to other people who understood ( I was fortunate that I had two friends who had TBIs who helped me understand the pattern of head injury and I found BTG after 5 months) . These last three I would say are the most crucial but no one suggested any of them to me, I had to find my own way and lucky that I could. I really feel for people who are suffering this in silence and isolation.

Oh yes, and I have had good support from Headway and calling the brain and spine organisation .

Hi. Good thread this and Definatly shows a need for some consistency in level of support on offer.

I have a good story to tell. I have two neuro specialist nurses and a hydrocephalus specialist nurse. They have been assigned with me since i was admitted and were amongst the first to speak to my family when I wAs most poorly and explained much to them. During my stay for the SAH which was for 6 weeks i saw one or more of them every day. On leaving they gave me a direct line number , on which have called them frequently , a mobile for more pressing questions and an email address from which questions are always answered. I have had 3month and then 6month clinics with them and whilst they can't answer my every question they have given me much reassurance. The support by this nurse specialists team since my discharge has been invaluable, in fact when I was readmitted requiring prompt attention for return of hydrocephalus in july We were struggling to get a problem with nursing on the ward sorted. I called my nurse team from my bed, dreadfully ill, and they came and took charge and basically made sure I got the medical attention I should have been receiving but wasn't. I know I get listened to and have a medical person who knows me and my history who can assess any symptoms and help me act. An example is Last week I was pretty grotty. I emailed them my symptoms and they called and said i should come and see them. They met me on arrival, checked my shunt setting, asked how I was, took bloods and then arranged for me to have scans. They spoke to me about my results,discussed what we did next and then called me the next day to follow up. I WISH all of you had access to this. It's not been perfect but I cant think what I would have done without this. I feel very blessed I was in London the day my head let go for the access to the care it gave me. That was my lottery number coming up.

Hi, I presume you've had follow up scans since June so hopefully you know that your brain is healing well, if you can hang onto this reassurance when your worry escalates into panic that will help you I hope. I tried meditation, it helps me to calm my mind.

I have a wacky theory on the noise in my ears. You know when radiators get air in them they make noise? Well my lovely closed system has been breached not once but a few times and I personally reckon that there's some air bubbles in mine now hence the strange hissing noises i can hear all the time. Absolutely nothing to back this up but it makes me feel better to offer myself some explanation for something that shows no sign of diminishing and that I never had prior.

Hi tony

Fantastic that you got such prompt attention as flying to hospitals is pretty dramatic I imagine. I hope your family is doing ok after the shock waves that seeing a family member unwell generates.

I had my SAH at the age of 39, I have two young children. Previously fit and well prior, just going about my normal business as we all were. 11mths on and I'm just planning my gradual return to work. My headaches subsided around the 9 month mark and now come back when I'm tired, over stimulated or any emotional situation but I also have a shunt managing CSF pressure so the docs aren't sure which causes what.

As Mary said the docs are amazing at treating the outcomes but not great at understanding our ongoing challenges. I saw my team this week for some checks and once again they expressed how little they know about the effect of blood leaks in the brain. I suppose from a learning point of view they can only work on donated brains which gives them the physiology of the damage but they can't ask how it feels in practice and us survivors are a rare bunch. So it's a learning curve.

So I will add the same advice, rest when you can, don't be tempted to go full throttle for a while yet and be kind to yourself. Take things more gently and ask your family to help you do that. One last thing, it's VERY ok to let the emotion out, bottling things up is one guaranteed headache for me! (im sure that you don't conform to an Aussie bloke stereotype though !lol)

So pleased you're with us

Daff

Great advice through this thread and Ive taken strength from it today as well as the last few days my dizziness and symptoms have been a bit crazy so my negative head won over my usually positive head and also have had CAT scan, X-rays and bloods today so feeling a bit pants. Thanks from me.

Donna , you say you've had a head cold. Look at people who suffer those who haven't had an SAH...my they do complain, so if you've had one last week then it's gonna make your dizziness worse, sorry to say but true. Give yourself a break here.

There's a saying that time spent worrying won't add even a second to your life. I'm not saying stop worrying , none of us can completely but you need to find ways to live with the worry and not let it consume you. We are the lucky ones, I always think that had I known 10 minutes before my SAH I still wouldn't have been able to do anything to stop it and there's someone out there in the next day who will have an SAH and won't make it so I need to get on with my life and weather the storms as best I can because I've got this chance of living. Maybe a long time, maybe not, but I'm alive.

My kids are young like yours and I have tried to do things bit by bit that bring back normal little by little. They get annoyed sometimes that "I'm always ill" but the first time i get to do something I haven't done in a while, like when i went swimming with them again, was amazing and they love you regardless. I think the longer you leave something the more fear can build up so set yourself challenges and tick them off one by one. Try new things.

I haven't flown yet so we are planning a trip to Scotland to test the water on that before going further afield and we will probably drive to Europe this summer in search of sun. Donna, try to find different ways of doing things rather than just stopping yourself doing it ,if you don't want to fly then don't but find a way of getting there which in itself may give you a lovely experience. Equally a paddling pool in the garden can give hours of fun so don't beat yourself up for not doing stuff.

Finally I'm sharing an apache blessing which I find very comforting. Hope it's not inappropriate.

May the sun

bring you new energy by day.

May the moon

softly restore you by night.

May the rain

wash away your worries.

May the breeze

blow new strength into your being.

May you walk gently through the world

and know its beauty all the days of your life.

Hope the virus gets on its bike very quickly so you can be back on your feet running soon. Teechur, your positive attitude has helped me as I approach my first year, your 'can do,will do' is very motivating. Thanks.

Fern. I can't offer any experience in what you're going through but just a note to welcome you and tell you we will all support you as best we can.

I am sure in your position I would make exactly the same decision to have the coiling but it's natural to be worried especially as you've done so well over the last six years. Keep strong. You've come so far.

My neurosurgeon when he asked me what I did said that pc work and analytical interaction were brain intensive activity and he advised me that I shouldn't even think about returning before the six month mark. The reality for me ,(and I know we are all different) is that only now do I feel I could cope with the brain demands on top of caring for my daughters and Ive just passed 10 months.

I sometimes feel like My head is like one of those snowstorm globes you shake. Sometimes it's does settle but it doesn't take Much of a jolt for a few flakes to start flyng about again. Work I think must gve it a real hard shake and it's not that you won't get there, you will, but I think it's going to get the snow flying a bit again.

See if they'll let you take it back to three days if that was manageable, it's worth taking really slow if you are able.

Hey Scooby Doo.

I don't remember taking anything slow at 18 so I'm sure it's doubly frustrating but the advice is sound. Take things slow, you can't jump back in at the level of activity you had prior to the bleed but in time I'm sure it will be fine. Pleased to hear you're getting scanned to be sure there's no side effects. In the meantime listen to your body and head and don't push it.

Hope you're nowhere near the fires.

Daff

I've struggled to answer this one. Think I'm not alone in that.

It's 10 months since I had my SAH, and 6 months since I had my shunt placed . I took a huge step backwards when I went back in for surgery for the shunt and expereinced my first ever anxiety attack shortly after that, plus numerous shunt adjustments and blue light ambulance visits until we got a good setting.

I can however track real progress I have made since last March but not one figure would cover it for me, (sorry David,)so here's how I'll try and rate myself to answer this.

Mobility 80% . On the whole I feel I have regained most of my coordination and movement but I have some serious shoulder issues and balance can be off

Emotions 70% . I am a glass half full girl and feel I have reached some acceptance of what's happened. I've still a lot to come to terms with but with you lot helping me I'll get there.

Health and Stamina.50% this is where feel low and am concentrating my energy right now, building up my stamina both physically and mentally. It's so far off what it was. I am tired ALL the time.

So using maths head that would put my average at about 63% ...not too shabby for 10 months after my worst near death experience to date but room for improvement which will hopefully still come.

Jen, you're right about the writing. I haven't explored my SAH experience too much so far in writing but have shared my feelings since I had my shunt put in, it's been a good way of letting people know some of what I'm really feeling. If anyone wants a read it's here.

http://popgoestifty.blogspot.co.uk/?m=1

Everybody in the BTG house with a VP shunt shout yeah!

Sorry , poor humour, I noticed with interest on this thread that Steph, Louise, Mikey, Win and I All have shunts. We have the majority view! , tee hee

Sorry ill get on subject Steph. Just to say I am thinking of you and get that you want to move on at the 12 month mark, im sure it will come for all of you but maybe at different pace. I think asking your family to reduce or limit the times they mention it and why you need them to would be good way to start.

Interestingly I have the opposite problem in my house where no one wants to talk about it, which suits me fine , until I'm feeling rough and they've all moved on and are looking at me as if to say,"what's up with you?" and I'm like "hello, SAH"

Hey maybe we sould do an SAH wife swap special!

Hi all Looking through this there is only a couple of categories that would apply!personof courage and stroke group, but you guys know better? The full detail is in a PDF here which can be printed off and sent in by snail mail;-) thoughts?http://www.stroke.org.uk/sites/default/files/files/LASA_nomination_form2013_low%20res.pdf

The one I thought would make senses was for Stroke Group Award

Stroke Groups play a vital role in improving the lives of those affected by stroke in their local community.( I would argue we are a global local community!) This award is given in recognition and celebration of the essential support network they provide. This award is presented to a group that can demonstrate the difference it makes to the quality of life of stroke survivors in their local area through its varied and innovative activity programmes, delivered by dedicated organisers and volunteers.

The fine print I think shows that BTG is eligible as I think we are affiliated? Anyone know?

(Please note this award is for groups run by volunteers. Both independent affiliated and Stroke Association Support Groups are eligible. We regret that groups such as unaffiliated groups or those that are part of a Stroke Association service, are not eligible).

I wholeheartedly agree that BTG founders should be recognised for providing and maintaining this excellent forum , our place of comfort and refuge. maybe if we cant sort this one out then we can organise our own celebration of that?

I have a high buzzing sound all the time, at first I thought it was my shunt but that makes more of a whirring noise

It's so annoying.

My question is do you think the constant drone could affect the quality of sleep we are getting? is it like sleeping with the TV on? I'm so tired when I wake up in the morning even after a lengthy sleep. Thoughts?

Lastly is there anything anyone has found that eases it, is it a form of tinnitus ?

Hi Mariella, my best wishes to your mum. Hope you're coping ok, I'm sure it's been very hard.

I dont remember much about my SAH experience. I also developed hydrocephalus when i had the SAH, i had a drain placed which i was weaned off and then i was discharged after 6 weeks in hospital.

However my hydro returned and I had a VP ajustable shunt placed four months later.

In my experience Any change in spinal fluid levels can play havoc with a body so my best advice is gve it some time. Your mum will have had high pressure feeling for a while , for me that manifests by slowing everything down. My movement, walking, talking. i guess that makes sense when your brain is bascally getting squeezed.

After going very low pressure ( post Lumber puncture and again after shunt surgery ) I experienced dizziness, sickness, confusion, eye pain, my list goes on, the like of which I hope never to have again. Then you have the gradual adjustment to a new level. Also my shunt is adjustable and the 'factory' setting wasn't quite right for me. I can honestly say that it took at least three months post surgery before we reached a setting that worked for me that my brain was happy at. Its still early days for me and I have good and bad days depending on a variety of factors.

Please feel free to message me as I'm happy to share with you what I've learned about the shunt process and recovery with an SAH.

Hi mikey. Your daughter sounds great, and she obviously learnt that compassion somewhere. Father daughter relationships takes a lot of effort and you should be rightly proud that you have such a great one.

I think my first post on BTG was about my fear to be taking something for high BP. I mean here I am, 40, fit ( admittedly no longer fitting that description in a nightclub sense! Lol) , but how could that be true for me? But you know what ? Im now like wow how cool is it that we have help in the form of a small pill that lowers our BP, thank goodness they can.

If you can try to Be thankful for the gift this pill brings you .lowering your BP helps reduce risk from those other Annie's ( I have one stealth one as well) and it's not a judgement on you. We are all everyone of us built uniquely and differently and so our amazing bodies will all beat to a different drum. You can't change that, you learn to live with it.

One thing I would say is that if you have friends who have fallen away then reach out to those who haven't and ask them to do stuff with you. Don't wait for them to ask, take the lead and you make the suggestion. People In my experience like to be asked.

And is there ways you can help others maybe near you?,you mentioned you can cook, maybe volunteer to help with meals for homeless etc. sorry if that sounds a bit preachy but if you can find a purpose and maybe see how you can still help others , have more purpose, then it might just lift you.

Lastly, we all make our own choices and your daughter makes hers. She's old enough to have decided she wants to do this right now and help you. Just don't stop helping yourself as well.

Bev. Scary day for you but I hope one you can look back on as when you got some answers. Having an Angio is a nerve jangler anyway, don't underestimate what your body went through today, take some extra care of yourself with extra hugs, water and plenty of rest is in order over the next few days. You did well!

I know a little bit of how you feel I think. The euphoria and initial healing after my SAH was dashed when I had to return and have surgery to place a VP shunt.

Smething like that Is hard when you just want to move on and then something comes along and you get dragged a little backwards but its important they deal with your AVM just like I needed to have the shunt. Actually only then can you truly move forward. And you will. Sending you hugs.

Hope you've had some chocolate!

Hey

Great news to hear you are doing those 'normal' trips, you should find these will get easier and I find at 10 months Those sharp and eye watering gritty pains are less and less frequent and more importantly I am better able to manage the fear that comes. I wish that for you too.

Your lad will be ok. He will be ,and you have and will continue to grow in confidence I know I have and still am. The great thing about kids is their antics and naturally selfish demand for attention does bring 'normality' back where possible pretty quick . They work out what mum can't or can do and adjust, equally just being able to be mum helps you with the healing.

Wel done you.

I had just started learning about Mindfulness before my SAH and have found that its practice has helped me find some peace since then at my most anxious times; in hospital, recovering from my shunt operation or just when I am in pain and need to rest my brain.

There is some good free short mindfulness meditation downloads on this site which I have used.

I use them to take a few minutes in the day to be completely still and quiet so I wanted to share . Hope that is ok

http://www.freemindfulness.org/home

I had to giggle as yes, been there, done that. my personal Achilles emotional heel is babies. Only need to waft one near me and I cry, like a baby in fact. As Cats are indeed cuter than some babies they're worth a sob or two. Tears are healing , so if a sad cat story makes you feel like you want to cry then my advice is let them flow.

Pleased to meet you. Glad you're doing well.

scorpio , you may think that a rule is set in stone or that a limitation is non-negotiable. Somewhere in your world now, a distinction is not as clear-cut as you may fear

David, i love the thought of you being a night benefactor to the poor and needy on Chicagos streets. That's a nice thing you did. Just keep Paying it Forward. It will all come good.

You think you couldn't focus on a meditation? i know the feeling...on the one I listen to the disembodied voice actually tells me that it knows that I'll wander off on different thoughts ,' ! Which I do.

SQUIRREL

My friendly voice tells me that it's ok. So I guess that accepting your brain wandering is part of learning how to do it. Give it a try and embrace your squirrel moments as part of it and get some quiet time for your head.

Hugs. Glad you're feeling more upbeat.

Alison, welcome to BTG. It's so very good to talk and family and friends, whilst they love you and support you just can't understand.

People on here will understand so chat anytime. My journey so far mirrors yours slightly as my head pop was 6 days after so I have been treading a similar , albeit different path over the last 9 months. Days are better now for you too I hope.

I'm glad you are doing ok. What a clever and calm husband by the way to drive you to hospital.

I too have developed a greater faith through this experience. It comforts me, I'm glad you found similar and I enjoyed that verse. I found counselling a help, did you?

My very best wishes to you and yours.

Daffodil x

David

You were so good at cheering me up when I had the blues. Sending hugs.

It's hard to feel anything but blah at times when you've been through so much and its natural to miss the bouyancy and optimism of your old self. I think theres even something in the good book about how futile it is to worry and fret about the future; but Blimey it's hard not too.

I think it's hard to get excited about future events like holidays when you know the fragility of it all. But here's the pay off, becuase we do know that fact the smaller things can be sweeter if we let them. So I'm talking about the walks on the beach, the poker wins, the hug from the wife, the call from a friend. This is all sweet stuff that can fill up your happy tank. Take moments to appreciate these each day and you may find some of your zest bubbling back up. Yes, sweat the small stuff in a good way!

I am learning that It doesn't matter how much time we spend worrying about big stuff that it wont even add an extra hour of life when it comes down to it. What will be will be. I think your mum would have told you that, my mum does me!

Have you tried any Mindfulness meditation? I try to do some most days ( i have a cd) and it let's me come back to the here and now and be a little less worrisome and more grounded. Even with all the stuff going on with my Nan it's helping me not to get too down.

Youre not alone on this journey. 1 in 4 adults will have some form of mental health challenge in their lives with depression being the most common. Having a SAH is certainly something that upsets any balance. Your takin meds, that's good and will help but maybe find something that works alongside that which helps you let go of some of the pain that feeds your black dog! and I don't mean working!!

Itll be ok double D!

Lisa, enjoy your glass of water tonite and hopefully next year we can have a bit of fizzy stuff! also well done for relaxing more over the last few weeks.

Headaches that i had in the first few months were awful, real hum dingers which felt very strange and scary. Also my first cold was horrible! My doctor was very patient and kind and now when I get one I'm able to have more tolerance about it even if to be honest it still scares me a bit.

Kris says it right. Relax when you can, hard with the kids I know, and expect to get some horrid healing pain ....but anything odd get it checked, you know your body best.

So good to hear this dawn. I'm so glad the new arrangement is working and this means you are free to enjoy the job especially as you get to know the ins and outs a bit more. Congratulations for weathering the storm. Onwards and upwards!