Daffodil

Kris, that's such a helpful post. I had nerve damage in my elbow when I was younger and it took an age to to heal. It tingled, went numb, had pins and needles but gradually it got better. However If I overused it in sport etc, I paid for it. To view the brain damage in the same context really helps me understand the slow silent nature of recovery . Thanks for your scientific view. Vanessa so glad you're Having a better day.

Mary Mary lovely Mary. That's a great vent. And a justfied, bona fide one too! I get irritated when my one rather middle sized dog barks at the imagined squirrel at the door but you manage to spend a working week with that much noise and chaos. You're my hero! Don't be down on yourself, you're Doing amazin things with less than perfect merchandise. And Halloween is over rated!! you can take a year off. Save yourself for thanksgiving. Be kind to yourself lovely Mary, be proud of the good things, take the good days and enjoy the good company. yes it's a bag of gooey brown stuff to have all these crummy side effects but on the days when something feels just right isn't it just great? Few and far between I know but We get to enjoy and appreciate those days so much more than most. Daff x

Hey Vanessa Sorry to hear the dreaded headache fairy has returned to your house. I imagine her a bit like the tooth fairy but far more vindictive and she always calls at my place when I am over thinking things. I have observed that if I go to bed with any worry it is magnified in ways it never was before my SAH. I'm really sorry to hear about the pay situation and incredulous that the critical illness won't pay out, that doesn't seem right, can you question that? If an SAH isnt critical then not sure what would be. I know that money must be playing on your mind, thing is I believe that anxiety, fear, basically any emotion can get heightened post SAH so if you can find a way to reduce your level of worries it may help. It's a bit of a vicious circle, the worry creates the headache which in turn brings more worry. I don't have solutions, I'm working on it too. Meditating is helping me, and each night a very calming routine and trying to let go of the worries of the day. Having said all that if your headaches are increasing then you should get it checked out that there is no other cause. Without wanting to alarm anyone I had increasing head pain at four months out only to find the hydrocephalus I'd had with the SAH had returned gradually resulting in crazy levels of high CSF pressure. What I thought was normal head pain was in fact not! My advice ( and you're the doctor) is if your symptoms have changed recently you should investigate. I also know some people have had to have a couple of lumber punctures later in their recovery to drain excess fluid and that worked for them. Big hugs. You're doing so well. We all take backwards steps in our recovery but it's incredibly demoralising and hard when they occur but you WILL get past this. Wem. Welcome to BTG , youre a month ahead of me in recovery and it's good to hear about your work plans. Good luck with them and keep us posted. Well done on the walk today

Im sure there's more as well but here's the link http://www.behindthegray.net/vbulletin/showthread.php?8112-How-have-your-children-fared&highlight=Fared

Hi there. Welcome to the club and although it's not one I'm sure any of us would have sought out you have come to a good place where hopefully you will find some comfort nd reassurance. I'm sorry you've had to stop breast feeding but as penny says congratulations on doing that long, that's something to be proud of. I had my SAH and coiling back in march and seven months on the world looks a whole lot different. I wont tell you that I don't get scared about the future still but the worry and pain from immediately after has improved and I feel more confident now and energy I increasing slowly. I posted a thread a few weeks ago asking for advice as I have young children too, but not one as young as yours so I'll try and post the link here as I got some fabulous reassurance from that. It's so early for you, I know it's hard to rest and sit back with the kids but honestly it's the way to go. Please try and take baby steps, it will help you in the long run. They will be ok, If you're anything like me there was probably too much running around after them anyway. It sounds like you are getting some family help, thats good, take it all. Best wishes and feel free to pm me. Daff.x

Be really proud of yourself for having that meeting. Think through what you want fom the job and take it fom here. Well done!

Super news Karen. Enjoy those cuddles and make sure you get some rest too.

Steve, be gentle with yourself. , I am glad you are doing well but it will have been a scary time all round. I found using hot packs alternating with ice packs helped with my back pain. I had that and also got some wierd tingling feelings post bleed and still do to be honest, but as Vanessa said it was also explained to me as the blood dispersing. ( i had a lot!) Kinda makes sense being in a closed system means its going to irritate other bits as it disperses. I would definitely wor with your GP to understand a bit more about what the impact of this episode is and what support is available if you need it. Best wishes.

Dawn, my gut feelings on this are that yes you should maintain a diary of conversations that are happening but I also think that the daily reviews are not helping you or your employer, weekly should suffice, it's making it all too front of mind for everyone. Also the Trivial level of some of the comments coming into these work assessments seem to be ill judged. Their duty in this to you and in the law is to make reasonable adjustments to help you return to work. determining what these adjustments are needs to be done and agreed together but it seems to me that the adjustments you require are not clearly understood where you work and they need to be. They cannot deny you reasonable adjustments unless they are too costly or impractical to working practices. Taking paracetamol , being flustered are non issues, a fully fit person would be in that situation from time to time. The worse thing for someone returning is to feel they are waiting to fail, so let's turn it around and focus on what is going well, what success you are having, wow you are doing an 8 hr shift, that is brilliant. Then you look at The areas where you need support at the end of each week and how that can be done. I would be happy to help you draft something here to help you have the conversations, hell I'll come into work with you:devil: i think you would benefit from having a colleague act as an advocate or who would be prepared to be present when you have these 'review' meetings just in the short term to ensure they are ALWAYS productive and constructive . Also i think it would be ok to tell hr that you are feeling insecure and slightly harassed right now by all the continuous monitoring and you need their help to get to a solution , then offer the approach above. Assessment of work when it is used to help support and improve during return is good, when It is used as a negative or intimidation tactic then it's time to stay stop. Just give me a shout.

Hey Karen, Win says it well. On the crying that's just part of what strokes do to us... I don't mind telling you that picture of jim and your gorgeous baby granddaughter moved me to tears. How special! (Only have to waft a baby near me and I cry! ) its called emotional lability i think so don't worry About jim letting the tears flow, either of you, it's normal. I am sure the last few weeks will have been a real trial but in amongst all the tears and pain there is usually something sweet to savour. Looking forward to Having lots of grandchildren cuddles in the comfort of his own home in the coming weeks will be sweet medicine. Keep the faith. Oh on help with the forms, there is a charity called Different Strokes, they focus on helping people under the age of 65 who've had ischemic or hemorrhage strokes, I am pretty sure they can offer some advice and help. Worth a call to their helpline maybe. I've found them useful on other things.

Hi dave, so sorry to hear the head is hurting so much. there is a lot of press here at the moment that too much pain relief can increase head pain but it sounds like you haven't had any relief at all. I was lucky that when I needed it I got to work with a fantastic Dr who headed up the pain clinic at the hospital just before I had my shunt fitted. At the time They couldn't get my head pain manageable so they trialled a 48 hr slow release mix of pain med and sickness control by sub cutting under the skin. It worked to break the cycle. It is often used as an approach for cancer patients but not often in our circumstances. They explained that by giving the body help to slowly manage the pain over time can help cut the automatic stress reflex which often heightens and extends the pain. I don't get headaches as often or at the same intensity as I was then but when I do I find that I need to drink lots, do my pressure points, take a pill and usually have a long good cry, the combination of all these things often seems to ease it...especially the crying:roll:. I hope you get it sorted.

Great question about visits. It's tricky because they do help. As I was in London where I worked people were tempted to pop in so My family Took charge, they posted on my Facebook page that if anyone wanted to visit then to contact my sister first and then she coordinated it. Friends and family were asked to bring specific things which they liked being asked to do but also not to stay to long. I found it really difficult to judge how tired I got in the early days post the HDU so having visitors who could see I was getting tired , and who then left or were quiet really helped me. I watched a fellow patient when I was back in a few months ago receive visit after visit and lots of people around her bed. After they left she was very poorly indeed as all the effort to receive them drained her. Getting a balance is important and its ok to ask people t be considerate, they all love and care for her and thats the most important thing right now. Is there someone who can coordinate it for you Andy? explain you want to make sure that she has someone each visit and not overload her. Knowing someone is coming each time is great, also my husband took most of the late visits, that way he was able to get to work some days in the later weeks and then spend the time in the evening with me. hope that helps.

Karen, I hope that yesterday went off alright and that you have your chap home.

Morning Andy. I am glad to hear your wife is responding well, it's early days but the fact she has been coiled so quickly is good news. She will probably be taking nimodopene for the vasospasm risk but only need to do that for a few weeks. We had high fives around my ward the day I took my last one of those. I imagine you've been through a scary time the last few days. The first time I got off ward post my SAH in march my husband showed me all the places he had had a little cry! We did laugh later at his water tour later. Seriously though I just asked him what helped him cope 5 days in. He said to focus on the uniqueness of your wife and the situation, not to listen to stats, and take comfort in each small progress. Oh and to laugh when you can. He sends his very best wishes to you both. Have you got family support? That will be very important , 7 months on from mine I know how much I rely on my family. How is your wife reacting, I know the drugs mask some reactions but I actually was pretty peaceful after mine and that inner peace is with me still, I hope she has the same. Please ask any questions on here and people will try and help. it's a site I am grateful for every day. I hope today is a good day. Daff x

Karen, the best of news for you both. There will be some new challenges to face but the comforting feeling of being home is so healing. I'm sure you will quickly work out signals and routines and wish you all the best, hey and if he wants to strip off now he can do so in the warm surroundings of his own four walls, just warn the neighbours first . Well done.

Mary I too have been taking hot baths to warm up. Sandi if only you were closer I could sneak in your hot tub, hang on though you get LOTS of snow so maybe not :lol:Win. I chuckled at the picture you drew for us! Thanks all.

I think I have mentioned before that i am really feeling the cold post SAH. I was a chilly thing before it occurred and now I'm like a little block of ice. A friend suggested a trip for a sauna or hot tub might help and I wondered if any members have any experience using them post SAH. I used to enjoy a sauna pre head pop but confess to being a little unsure as to whether it's a good idea now. I can't see any contra indications and will of course check with my neuro nurses and GP but do any of you dip your chilly feet in a hot tub? Does it help?

Sally. I hope your sister is doing well. I had my SAH back in march and have noticed my sense of taste has changed. It is stronger and more vivid and things I used to love, cheese and onion crisps , are now off my menu. Interestingly things I could never eat, tomatoes for instance, I now love. Immediately Post SAH I found it quite strange, my tip is just to keep trying a little of anything she fancies. Savoury crackers are good, biscuits, i found the more i ate the less i noticed it. I also found some medication suppressed my appetite, morphine especially. Changes in the pressure of your head can causes sickness, so as the blood finds it way out there is a adjustment each time, some people are more sensitive to this than others. When I was bad like this I drank lots of protein drinks to keep my weight and strength up.

In hospital I was either away with the fairies, drugged to eyeballs or in a euphoric state of 'I'm alive'. I'm not sure I would have wanted to talk to someone at that point or welcomed it. Move the clock a few months and I NEEDED to talk to someone like me. someone who could explain these feelings, sensations, the uncertainty, the anxiety, who could reassure and listen. Then I found you all. And not just in recent posts Sally, but in older posts going back years. (I know for instance about Bogbrush being Morph, back in 98 I think) I read old posts when I am unsure of things with me and they lift me up , inform me, and sometimes make me smile. I bet you all have reached so many people in the same way. The Words from people who have shared this experience are the blanket of hope and comfort to people just arriving. Just because you are not sat in the hospital Sally does not mean you have not been sat at my bedside on many nights. I'm sure other across the world would agree. Do what you can because you want to. I send my thanks to all bTGers past and present for the help on this journey.

Hallelujah! Karen that is good to hear that they are listening, responding and that your lovely man is getting some better care as he deserves. You've done great!

Headphones are a great idea , I couldnt sleep without those or ear plugs whilst in hospital. That's a caring nurse to think of that. There are always more good eggs than bad. Sleep well.

Hi Jimble. I had my SAH in march but still often experience pain in my lower back . The explanation offered to me is that any trace of blood in the spinal fluid aggravates the nerve endings there . Not sure if that's the case , someone else may have a different view. I find alternating an ice pack then a heat pack helps my pain. Someone rubbing it better is nice too but it usually means I've been upright for too long and I need to rest. It's very early days for you so if youre worried you should check in with your neuro team to be safe. Stay well. Daff

Karen. Poor you. Poor jimmy. This is shocking and cant go on. There's good advic here already from Paul, Michelle and penny. Definatly try PALs they should Be able to help here. In the NHS standards http://www.nhs.uk/NHSEngland/NSF/Pages/Nationalstrokestrategy.aspx for stroke care it says 'people with stroke need to be treated by a skilled and competent workforce.' ....hmmm I think you must go back to the sister and detail your experiences and justified concern. Write it all down before you go as its easy to forget when you are there or be intimidated. make it clear you are not someone who will tolerate this any longer.You will need to badger them, shame them if needed, remind them of their duty of care and I, like paul would report it to the director of nursing. A call to the press office to talk of a "friend at the daily mail " interested in pictures of this care might seem underhand but willmake them pay attention... I had times when I had parents and in laws all battling against shoddy nursing. Some are amazing, some are not. I know Its the last thing you want to do right now but take heart, you are not alone and this is a battle worth fighting. the phrase "in a minute" sends shivers down my spine , it often never came, so you wait, and wait, and I was lucky that most times I could rally against the system myself, hard though that was. For Jimmy he can't right now , no wnder the poor chap takes his clothes off. Its his way of saying will someone please pay attention. so keep on telling them you expect, no demand, of their care standards. He can't tell them and they're obviously not watching to see what he's trying to communicate in actions. Huge hug. Good luck

Vanessa, nausea, vertigo, headaches comes for me when my brain is experiencing low pressure within the ventricles. (I know this because of my experience with setting shunt controls and LP s and going lowpressure which reminded me of when I had it post SAH ) i believe it's quite common to get this low pressure feeling post SAH as the ventricles are over draining because of the blood in them and the changes in their size as they adjust but you probably understand the biology better than me. Anyhow I digress. My super duper pressure doctor says drink coffee...yes coffee, my shunt team says drink coke whenever i have had lowpressure. Not sure if anyon else has been told this but it was common practice at my hospital , in fact you could tell who was having low pressure by the drinks on their side table :lol:Either way I know this does help me. Obviously I'm not recommending caffeine if you have high BP. Ive also had cyclazine for extreme nausea.

That's a good thing to hear Karen. Enjoy your day with jimmy, hope he catches your positive vibe and teases you some more. best wishes for a good day.