Daffodil

Tony, it's so lovely that you have found a gift in your SAH. Your children's comments must have warmed you and I'm glad that you are doing so much better. I'm the same as you in that I was so convinced initially that I'd bounce back so quick and then reality forced me to accept that wasn't possible. So I go at the pace that the day allows...(mostly) I imagine you now, stood surrounded by cattle, staring a the beautiful landscape in frontof you, your arms around the shoulders of your wife and family and smiling. A more peaceful man? Not in such a hurry? That's my image of you.

Hi Sally. Lovely you're there to help. Things that helped me early on. In a stereotypical way they may not appeal to a man so We may need some more male opinion on this subject! Some of these you may be able to sneak in without any comment of why's it's good, hopefully he will realise that it makes him feel a bit better. A friend coming over with their book, not to spend time talking but to sit and read whilst I slept and who then made me lunch so that I always ate. Quiet time. No TV, just gentle calming music. Now I have music playing always and I can take the loud stuff A hand massage. The chance to just cry it out and have a cuddle....( maybe not so good a plan with an ex ) Being made a fortifying milkshake in the afternoons. Not the most pleasing of drinks but helped with the dip in energy that always came. Family and friends helping me out when I did things on my own for the first time ...walking down the stairs, showering, then later for longer walks out etc. Earplugs. Still help me. Take them everywhere. Sunglasses. It takes the glare off the day. Everything is so bright. Extra pillows in bed. It helped to sit and sleep more upright. Warm socks. My feet were and are always freezing. Wheatie bags for unexplained pain everywhere. Heat helped me, but not to hot. If I think of any more ill come back and add more.

Actually you know what, I think you need to check this out. I started going backwards about three months post SAH. A lot of what you describe. My GP sent me to the A&E and phoned them so I was seen straight away to scan to make sure the ventricles weren't enlarged. Mine were. That is Not uncommon after an SAH. Many people just need to have have a lumber punctures to drain that fluid off. I guess I am not trying to scare you but to say you should check it out. Can you phone the Hospital who treated you initially and ask to speak to one of the registrars. I would. And did.

Karl The effects post SAH are many and curious, it's like the brain Spins a wheel at the beginning of the day and you get where it lands. If any have got worse suddenly or increased in any significance then please you must go and get checked out. Most gps dont realise The effects of a bleed can cause some issues later on so push to be rescanned. I'm not suggesting a rebleed but worth being sure nothing else is goin on as that can cause some of what you have described. I'm sorry you are having such worry in addition.This won't help as your poor brain won't have the reserves to use energy on it. As Louise said there is help but you have to shout for it. Do you have someone who can help you shout? Shouting not good for brain either! I was 39 when I had mine. My world turned upside down in a blink and it's not back the right way up yet but it feels more steady now. The early days are so unsettling and scary and long but you're not alone. You will get through this.

Pam. I'm so sorry. Your world has turned upside down and having to make all these decisions and changes must be agonising. I hope you have some comfort and support from family. . There's a lady on another stroke forum , Kate Allatt, who has written a book on her experiences, she shares openly that whilst she couldn't do anything in the early days but she could hear and understand everything. The brain definately shuts down the external channels like speech and movement where massive healing is required. My family were told no hope. Couldn't possibly survive the severity of the bleed. If i did then Most likely the hydrocephalus effect would have left me in a damaged state. I'm not who I was. I can't do what I did but I have made a huge journey as have many on here so I think there's always hope. But even when all seems hopeless the squeeze of the hand is still felt.

Hi. If yours is adjustable by magnets then prior to a MRI they can check the setting which they do with a special item of adjusting equipment unique for your model. Mine for instance is like a large pen. It presses quite hard against the shunt valve, uncomfortable but doesn't hurt, then reads the setting you are on. They then check this again after MRI. They can also read the setting on the valve through a CAT scan or X-ray like Penny says. That said there should be a record of what setting they put your shunt in at. Different shunts have different settings so worth knowing this for future reference and you can keep a record on your shunt card that SHINE send you. I've also had a medical keyring made up which is on my front door keys as figure that's a good way of alerting people to the fact I have a shunt if required. Hopefully it won't be

Hi Gary and partner. It's the most frustrating thing I've ever experienced in my life. The sudden shock of understanding that you can't do what you did. Might never do stuff again like you did and yet you so want to. Feeling youve rocked everyones ( and your own) world. The body and head is not willing to join in especially not early on. but over a year on and I'm doing things now that I though were out of reach but you've got to start small and slow. The only thing that helps in this equation is time and that's hard when when you want to kid yourself that's you're ok. Pushing through it like we all do with mnor illness is not an option. It's not the flu Gary's recovering from, he survived a major brain event and I really urge him to talk to someone about that. Only once you accept it fully can you reall begin to heal. Headway is good or find a counsellor. The medication will Have masked some symptoms from him. I think was on pain relief for longer than Gary after my SAH, i was in hospital initially longer though so thats the main reason but then after discharge I slowly extended the time between pills and cut out the opiate ones which was a process the pain clinic talked me through for reducing any reliance on my pain relief . I supplemented this approach With extra rest and sleep mode. Is Gary having much pain? It's worth asking the doctor if they can look at some other options to help him manage this. Best of luck. Its so hard for other halfs. Even now my husband looks at me with the ' I just don't know what to do for the best' look. The honest answer that I give him is that I don't know either so we just have to go with the wave and see where it takes us. Each day is an achievement though and brings with it a tiny progress but sometimes they are so tiny you can't tell which is why writing it down is a good plan.

Very warm welcome. The nausea feeling is horrible. I found that lemon barley water was quite good at quenching thirst and hiding the nausea a little in the early days. Send him best regards and get him to go really slow, the brain needs some gentle handling to heal. Good they are taking things slow. Best to make sure that he's headed in the right direction. Eye mask and ear plugs are a help I found.

This is like a game of symptom bingo Fatigue Losing words Irritability Shoulder and neck pain Dizziness Anxiety

If I press hard on my shunt valve then it actually empties , it's designed that way so I'm not sure pressing hard is a good thing in the early days. After the area has healed a bit like Penny says then sure that's fine. Dizziness is pretty common early on but if it's very bad then get back to your team as they may need to adjust the setting if it's an adjustable shunt. Mine was adjusted a few times before I got to the comfort level of where I am now. Win, if I get upset and cry then I find afterwards I feel very low pressure symptoms like it has over drained. I put this down to maybe we create more CSF when we're stressed and then of course our lovely contraptions drain it off. My top tip for that is to have a glass of coke, the caffeine whilst not great for other stuff , seems to help lift. I then lie down. That helps too.

Carl, your analogy of the feeling being like tides is useful. I had my first ' day ' back at work yesterday. Actually this was a few hours working from home which often did prior to SAH as I am very fortunate that Occ health and my colleagues are keen to ' do the right thing. ' I spent time reading documents for a project that I will be owning and had one half hour call. I then answered some email and wrote an article on something for internal use, not a lot really but a whole lot considering. I enjoyed it and it went well but. ...I Could feel my brain ache by the end of the planned time. And then today I can feel the effort. My neck aches. I look more like a panda again. The dizziness has come in waves since this morning and I feel faintly nauseous. I haven't driven more than 10 minutes today as figure I need to rest up. We are building up slowly from two ' mornings' work a week and I am aiming for three full days as my end goal. No more. They have agreed to that in principle. So I'm done now for the week. So on the plus side of things it's a hooray, on the other it's an , oh pants! Wish I didn't get the hangover from the effort. Am hoping based on your experiences that this impact and its effect will diminish if I can take things slow to get my brain used to it. What if it doesn't though? Hmmm:shock: Oh did I mention how irritable I am today?

Hi Gary, A few months after my SAH I confess that I said to my husband, " I'm just going to drive down the road" . Now before anyone gets cross I live in an unadopted road and just I wanted to see how I was doing, at that point I was planning to reapply for my license at six months. Thing is , I drove a few hundred yards and stopped and said to my chap, " wow, I can't do that at all, it hurts too much" . Thing was for me the hydrocephalus was creeping back and that was a first sign that not all was well. Anyhow roll the clock onto now and I've got my license back and driving again, but I'm not driving every day as I know that wouldn't be a good plan. My first drive out I was followed by a friend and thereafter I have gone short distances, I haven't driven at night yet, I will build up to that. So take it slowly Gary. If they say you can then build it up in little stages, like Mary did. A little each Dayton get the brain used to it and see how you are doing. Good luck.

Hi Gaz, I hope your weekend away is a nice treat. I'm 15 months in now. Wow , and how much has changed in that time. My days on the whole are a lot better than they were a few months back and there is vast improvement on being unable to do anything or go anywhere that were my months immediately after SAH. Someone has suggested keeping a diary , I think that helps to track how you are doing , feelings and what you did. my suggestion though is always start the week with a list of small goals. They can be simple. Mine included brush my own hair early on. Then write every small achievement you make each day, and there will be one even if it's getting out of bed. Together they all add up to some great progress that you can look back on. Fact is that this recovery can't and won't be rushed. Your brain is so busy running the body mother ship and trying to heal that if you use too much energy doing other stuff you end up feeling rubbish. I have learnt a slowness in the last year and it has brought a peacefulness to me that I didn't have prior. I don't rush anywhere now and thats even with two young kids who will try and hassle me to go faster. take care.

As Wins says , anything that's changing or very strange then best to get checked over. I did had awful dizziness and nausea in the months after. Mu doctors prescribed me some tablets which are used for travel sickness , they did help( and do still as i still get it if im very tired or have overdone things) In the early days it would come on very very quickly and all I could do was lie down and keep my eyes shut and play some calm music. Yes also to neck and back pain. Some members have suggested this is due to the blood dispersing, that seems to make sense. I used a hot Wheatie bag to ease that pain. The main thing is that if you try and do too much, too fast, or just over stimulate the brain then it kinda shouts back at you and flicks the dizzy switch. Keep a check on what youre trying to do each day Iona. Chances are it might still be a bit too much over stimulant for the old grey matter. My youngest daughter was same age as yours is and I know how hard it is to achieve quiet and calm but truthfully it's what you need right now. Accept lots of offer of help so you can get the quiet rest time you need. Oh one last thing. I found sleeping with my head slightly elevated helped.

Welcome. As the others have said , take things slow, drink plenty of water and just be kind to yourself. Plenty of cuddles with your daughter is good healing medicine. Take care, ask anything if you get worried. Someone will have an experience to share.

Hi Karen, hi jim. Glad to hear things are moving forward albeit slow. The power chair incident made me giggle, I had visions of jim flying off in it. Good to have that independence even if the larder jumps out at him! I asked my nurse about circulation booster as I used to use one prior to my SAH as I have reynaulds which is a circulatory thing. Anyway, she was unsure as to whether the electrical pulsing would be a good thing so I gave mine away:shock: I have replaced it doing a with a quick shoulder or leg massage esch night. Now I am able to do it myself as I have the mobility and I don't want to add to your load but I think a good aromatherapist would be able to create a safe blend that may help with the water retention and circulation. Anyway it's just a thought. Take care and keep laughing together

Hi Tulip. Tough, sad and scary times. I'm so sorry Dad has taken a turn for the worse. I'm hoping that things take a turn for the better. Is he able to respond to written questions ? I think there are boards that are used with stroke patients that help to communicate. Might be worth a try. His tears are from pain and frustration and sadness seeing that you are all so worried but they're a good thing too, it always feels better in my head after a cry. It releases things. Just keep letting him know how much you love him. That's the biggest comfort there is. Take care x

Hi Jude Warm welcome to the site. It's a very comforting place here as people just get it. They know the everyday struggle, the disjointed feeling, the spacy Dizzyness that just envelops you and sometimes that understanding is all you need. Here we receive acceptance and appreciation of the effort we put into the business of living. I guess we all got that gift of knowing the fragility and preciousness of this life, that's the gift it does bring right? I hope they have you on BP tablets to minimise the risk of the second anni as much as they can but as you say, live life to the full, that's got to be the best medicine. Daff x

Not sure if this is one of our members story but there is an excellent description of what having a SAH feels like and the shorter and longer term effects on the Brain and Spine Foundation site. I also found their booklets excellent post SAh and have called their helpline a number of times. Here's the link to it http://www.brainandspine.org.uk/subarachnoid-haemorrhage-short-term-and-long-term-effects-memory-concentration-irritability Thought it worth sharing.

Hi Stevie. Welcome and glad that in general you're doing alright. like everyone else has said i agree it may be worth chatting to someone. I had counselling just after I had my shunt put in and I am planning to go back for some more in a few weeks as I know that I have been retreating inwards again and need a bit of help to talk through that so it doesn't become create a problem. It's a strange thing I find that in many way I Am less fearful about so much in my life now, I realise there is no control over so many things but at the same time I hold back from placing myself into situations that I know will wipe me out and could potentially lead to pain or discomfort. Just this week i opted out of doing something that i wouldnt have thought twice about prior to SAH. It's Natural enough I suppose to avoid bumps in the road but I want to get out and enjoy life, not just spend time hiding with my cats and dog which it would be easier to do. I'm lucky in a way in that I have young children which means that they unknowingly force me to get involved and do things that otherwise I might opt out of.

I haven't read this one, I might take a peek. I've read two SAH books, one was rebooting my brain by Maria Ross and that was excellent for how she managed her reovery and also Falling and Laughing by Grace Collins which charts the singer Edwyn Collins efforts to recover post SAH. That has a lot of humour in it but was also useful for understanding the partner view. Actually think I'll go back and read Rebooting as it would be good to read again later.

Hi Liz It's the strangest thing isn't it. I don't remember anything past having a nice few drinks with friends , I woke up many days later with a brain drain and not knowing who or where I was and unable to walk or read. I use that as my starting point for progress when i Get frustrated that things aren't going as fast as I might wish they were. Then just as I felt I was making a little progress I blue lighted back to get my VP shunt. That's when I found BTG and thank goodness I have as the team here have helped me slow down, let go, worry less, feel a bit safer and less lonely in the strange symptoms that accompany this recovery. I can look back and see a great deal of achievement in the last year. It's been tough and I still have plenty of rubbish days but I also have plenty of lovely ones too. You will too Take care.

David, David, David. Your poor missus! Your poor head! I'm glad you are ok though, and speaking as someone with a permanent hole in the skull (leftovers from my EVD) I think youll find the increase of air circulation adds a new perspective! One of my daughters accidentally whacked me in the head just after I had the shunt placed. I saw the little birdies fly round , we all cried but it was nice to know that you can still bump your nonce and be ok. I suggest strapping a pillow to the bedside cabinet to avoid future altercations. Or wear a safety helmet in bed...not very romantic though:lol:

Yes me too, and also my taste buds changed a lot, I now like tomatoes so there's a positive side! It's lessened now and happens rarely.

Hi Liz, just to add I did get pain as the scar on my stomach healed and oddly enough I get nasty pain in my shoulder when i get a stomach which my team think is the piping aggravating the phrenic nerve occasionally , this is the nerve that is shared with your shoulder and neck and so that makes sense to me. My shunt is adjustable in settings with a magnetic valve to control it ! Is your adjustable? Shine are a good charity, I'm hoping to go to a session in London with them soon to learn about hydrocephalus a bit more, promised I'll post the results on here.