Slim

Hi Stephanie Sorry I can't really help. I think it is definitely worth mentioning to your g.p. What I do notice is that if I am exhausted which usually happens when I'm using both mental and physical energy e.g rummaging and sorting it will exacerbate my physical weaknesses e.g one of my legs will be weaker my co-ordination will be very poor. Good luck with things and take care you are not over exerting yourself.

I wish I was exciting enough to be not lifting weights while sitting on the toilet:lol: I was being exceedingly boring and had got up to do the dishes. It was the text book head explosion. Second one was a bit more exciting I was running late for a meeting (not so text book on the way up in the lift my neck pinged) But knew something really wrong, traumatised the folk I was meeting think they thought I was having a stroke. Thankfully the lady I was meeting used to be a nurse so she had the good sense to call an ambulance. (definitely a case of being in the right place at the right time). I'm a very lucky girl!

Hi Karen and Jim I've come to the thread very late. But just wanted to say good on the pair of you. Isn't it amazing the difference a day makes. you won't be believe the difference when you look back in a couple of years time. I haven't read the whole thread so ignore if this is a duplicate. But have you heard of the Princess Royal Trust for Carers? http://www.carers.org/ if the aren't in your area there may be a similar organisation. They should be able to help with advice, support, funding put you in touch with other carers. They can often be a lifeline. Good Luck and Look After yourself.

Hi Vanessa and to all the other Night Owls. This really takes me back. It was an awful time so I sympathise with you completely but on the plus side it was during this sleepless phase that I discovered "behindthegray". In the first year of recovery I could have slept round the clock and never felt refreshed. The insomnia wasn't simply that my sleeping patterns were mixed up. I needed rest during the day too. What helped me was firstly advice from me G.P to nap no longer than an hour at a time. even If I need to take several short naps. I did usually push this to the limit and set my alarm for 59mins. Get fresh air every day. Even if it is to sit by the window. (Obviously weather permitting). If you can manage a walk even better. Cut out caffeine and cut out or down on processed food. I don't answer the phone after 9pm at night or do anything mentally stimulating even exciting tv. (I discovered carrying on on the phone kept my brain hyper and will try to shut down my brain even earlier. (like a parent trying to get a child wound down before bed time). The biggest turning point was my G.P prescribed a sleeping tablet. I was quite scared of taking it as I was worried about getting addicted....... and I don't really like taking tablets. However best thing ever. (for me) I obviously was in some sort of cycle. I can't remember how far I was into recovery poss 6 months and it was a last resort. But it did help. Think i only took it for a couple of weeks. But I did have some for occasions when I knew I would need a sleep. e.g having to be up early for an appointment. (I haven't had them in several years) I still have problems sleeping if I'm somewhere new or exciting things have been happening. The reason I can't sleep tonight is because I've had a busy day been drinking coffee and a big pizza and finished it off with a bottle of wine. Boy do I need to take my own advice! I'm not sure if the above will work for you, I hope something will talk things over with your G.P and if it gets worse ask to be referred to the sleep clinic. But it could be just that your body is healing itself and this if your phase. Try not to get too worked up and find something that will relax your brain and help you sleep. (i love arran aromatics lavender or lavender and teatree) normally hate lavender. Take Care hope you are in the land of nod soon.

That's great news.

Hi Momo Sorry I haven't really much to add. I would have thought you would need to go through your G.P or go Private. I was discharged by my Consultant who then left that hospital. I hadn't had the follow up Scan which the NICE guidelines suggests. The G.P also said he had no reason to question the Consultants decison to discharge me. However undeterred and having the benefit of Private Insurance I persued things. I didn't feel I had been given the best care. My G.P referred me to a Neuro Surgeon in the Same hospital and fair dues to him me said it was an oversight and that I should have been seen. I was put back in the NHS System under that Consultant who I have to say was suberb. I'm v glad I pushed things and went for the second opinion. Good Luck Hope things get sorted for you

Hi there Yes this seems to be a common thread for most of us. It could be linked to depression if you feel you r depressed. It used to really annoy me when people/Docs said I was depressed, because I really didn't feel depressed. The Tears/outburts would just arrive and disappear just as quick. I can't remember how I found out but discovered this does have a grand title it's called Emotional Lability. Info from headway below. This is how I felt and once it was identified that I wasn't losing the plot I was so much happier. Now 4.5 years on Things are massively different. There is no comparison. The Lability will still rear its head when I'm having a bad Fatigue day or I've been completely taken by surprise/overwhelmed. But for me it's always linked to the Fatigue. Even though i'm currently having a moan about my Fatigue there is no comparison to how I feel now and how I felt it the early days of recovery. So Hang in there. ps one of the things that really helped was an NHS Homeopathic appointment. They tried me with a couple of things and once sorted I found a huge improvement in the lability. Anything is worth a shot. Hope this has helped and not confused things. http://www.headway.org.uk/Emotional-and-Behavioural.aspx#emotionalLability Emotional Lability This describes a person's tendency to laugh and cry very easily and to move from one emotional state to another very quickly. Loss of control over emotions means the person has lost the ability to discriminate about when and how to express their feelings. This can be very tiring and embarrassing for family members to deal with, but in time a person can begin to re-learn emotional control

Hi John How you doing? I was very glad to read your post. I'm going through a similar thing. I'll be 4.5 years post SAH. About 2 years ago after my menigitis was picked up and sorted, I felt amazing, now like yourself I feel things are getting worse and worse again. So currently waiting on an appointment with my new G.P to see how to tackle things. On another note my loved ones proposed that possibly I'm not necessarily worse than before, but because things have been so much better when I push myself it does hit like a tonne of bricks. I think there is some merit in that but at this point I'm just so fed up with the whole thing. However I have found pacing myself and follow guidelines and advice for M.E sufferers to be the best thing, eating healthly and taking vitamins etc. Annnd of course drinking plenty of water. If I have anymore luck, I'll get back to you. Hope you r doing better. Hang in there Slim

Hi Vicky How you doing? welcome to the site Yes I've had a lot of ENT problems post SAH. I have always been prone to ear infections but never sinusitis. I also had meningitis post SAH so have put the recurrent issues down to poor immunity. Have tried to overhaul my general health in the last couple of years with vitamins/healthy eating etc I've had a few small flair ups but they have usually been nipped in the bud with rest and over the counter pills. Worth getting checked out with GP incase anything else going on, If I had had any more flare ups they were going to refer me to ENT but thankfully managed to avoid that. Hope you feeling better soon

I've said yes as I running (not Jogging/just late) when the Big One blew. But the previous bleed, I was feeling in bad form nothing particular (exhausted and cold) I had just got out of bed and it went. in retrospect I was very stressed around about that time.

Hi Di How you all doing? I can really only echo what the others have said, firstly the aim of this thread is to support carers so feel free to air your feelings. (its better out than in)! Have you talked to your hubbie? Its important that he knows how you are feeling the SAH affects all of the Family. Us SAH'ers can be a bit selfish its all me,me,me:redface: I was extremely fiery, (previously was a lamb). (Emotional Lability) I know every recovery is different but I genuinely couldn't help it. was made worse by people pressuring and judging me. Also My husband was the one person I didn't have to put on a front for, I could completely be myself with him unfortunately that meant he did have to take a lot of the flack. After that first year and subsequent years the difference is amazing. I am forever grateful for his patience and support. However no one should be expected to put of with abuse regardless of the circumstances. Whilst he/ you all come a very long way, one year is still early days in recovery terms. It is by no means a measure of how your Hubbie is going to be, recovery is a continous thing. Find out from your hubbie how you can help him? On another note I tend not to speak to my husband when he is doing DIY one of the rare times he is crabid. I just get on help him with whatever he wants or head out with pals away from the firing line! You take care and good luck with things x

Hi Mike, I use the same prompts as above, calendar, mobile phone etc. I also always carrying post it notes and a pen in my bag to remind me to do things. As my recover has progressed I find I need this prompts less and less. Although occasionally I get cocky and miss things. The Brain Trainer is a great puzzle book for getting the brain back in gear. I hated it at the start, still some I can't quite work out. But I saw some major improvements. Especially with the "spot the difference" puzzles. Good Luck and Congrats re the driving. Aine ps you may find you are exhausted after your first few drives.

Hi Laura, Hope things are getting sorted out with your Mums DLA. It might be worth getting in touch with your local "Princess Royal Trust for Carers" depending on what that particular project offers, they may have a benefits advisor. You could also find out what other services are available to you as your mums carer. e.g many projects offer complimentry therapy for carers counselling and support. http://www.carers.org/ Good Luck Aine xox

Hi Diane, Your Hubbies cold will have well passed by now, For colds etc. I've found I've responded best to all the old remedies. Have especially taking a shine to Echinacea. Since taking it regularly I've found my generally immunity to have massively improved. Previously the cold would have launched into a full blown attack of the flu (or so it seemed) now I can stop a cold in its tracks. Best of the Rest. Hot Water, Honey and Lemon. Vitamin C a good multivitamin. Fresh Air. Olbas oil steamed. Halved onion in the room overnight. (it does stink though) but good for a cough. There is also a remedy with Turmeric and hot milk for a cough but I can't remember it. Take Care Aine

Hi there, I've become a convert to Echincea, my immunity had been very low but since taking vitamins and especially Echincea(high strength) It seems to knock things on the head or speed recovery. Cough - place a halved onion in the room overnight. (it does stink though) Turmeric in hot milk although can't remind the quanities. Honey hot water and lemon, and of course the old favourite, steaming with olbas oil. Drink plenty of fluids, fresh air and keep cosy. Hope you've managed to nip things in the bud or it doesn't linger too long. Aine x

Hi Karen & Co What age were you when you had the SAH? I was 31. (3.5 years ago) Had SAH 6 weeks previously to the main event, but misdiagnosed as migraine. also suspected I had another 2 small bleeds. (amazing what the body can cope with) Never smoked, Occasionally elevated blood pressure, but not medicated. like a glass of wine or two. Otherwise healthy. I did have a couple of migraine attacks in the year and week up to the SAH, not something I suffered from previously. (Although my family do have a history of migraines.) Do you know what artery was affected? Left PICA, 1 Anuerysm. Some of the log in names are non-gender specific, so if it applies to you, are you male or female? I'm a Lady Were you coiled or clipped or non-aneurysm or other? Coiled. Sorry did get slightly sidetracked at the top there. Aine

Hi Rod and Merrill Hope you've had a good one today. I can only echo what everyone else says it is indeed very early days. Like Merrill I also had hydrocephalus. In the first few day I had a very limited memory (A bit like Dory in finding Nemo) My Husband is a gem, but in that first year particuarly the first few months he bore the brunt of my frustration. I feel awful about how I treated him but I genuinely couldn't help it. I can't explain it but he did really tick me off. If things went missing I was convinced he'd hid them on me for a laugh, in the hospital I told the nurses he'd stuck his finger in the drain in my skull to wake me up. bizzare things like that. I genuinely believed that, after all it could be the only reasonable explantion. I was happy for my mum to look after me, I found it really to hand over the reigns to my partner, sort of loss of control. made me less equal somehow. (Obviously I only see this in retrospect) The emotional outbursts where the hardest things to cope with for both of us. I thought I had lost the plot but then about 9 months into my recovery It was explained I was suffering from emotional lability an that it was an extremely natural part of recovery to have these outbursts. For me after that first year they had gone. Now it just feels like a very bad dream. Ask Merrill what you can do to help her, the book is a great idea. she will recognise her own hand writing and trust it. I found structure very helpful, meals at set times etc. (I personally completely flipped, I never had set meal times) found that I was reassured by knowing what was happening. Couldn't cope with anything sprung on me. Most important and best advice from this site is for Merrill to Listen to her body and rest when she needs to. You take care of yourself as well you've both had your world turned upside down. Take heart in the fact it is still very early days. Take Care Aine xox

Hi there My Sleep has been greatly disrupted by the SAH. Prior I had no problems and Dreamed quite frequently. I stopped dreaming for a long time after the SAH, when I awoke it would seem that I was only sleeping for minutes and I was as exhausted as ever. For me progress was when I had my first dream again and tried to get my sleeping patterns back into a routine. This was helped by sleeping tablets and I think time. Now my Insomnia is much less common and more likely to be attributed to the days activity and poor sleep pattern. Depending on my level of activity I will generally need at least 1hr nap in the day but i find that I am now able to power nap. I'm currently having Major Fatigue issues at the moment but before that Tiredness had started to balance out. For me once I got the first year over me things started to improve. Aine x

Hello Folks I also have balance and depth perception problems. Things are always a lot worse when I'm tired. By chance the physio I was involved with (Ankle Sprain) was a specialist in Balance issues. He have me some exercises which I now know are called, VRT, Vestibular Rehabilation Therapy. I am finding them very helpful and my balance has improved massively. I do feel emotional and Nauseaus (you know what I mean) when I do the exercises but this has gradually got better. In the Experts words. This excerpt is in relation to Labyrinthitis Vestibular rehabilitation therapy If your symptoms are persistent, vestibular rehabilitation therapy (VRT) - a form of 'brain re-training' - may help. VRT is a special programme of exercises that encourage your brain to adapt to the abnormal messages sent from your ears. The therapy requires you to keep moving, despite feelings of dizziness and vertigo. (Nhs.uk) Hope this helps. Aine x

I only caught the end but must look and see if it on I-Player etc online. My tastes changed, used to hate Tea, Now love a cuppa. I Find my Energy Levels a lot better when sticking to foods that are natural. E.g Dinners like Granny used to make. Cutting out anything artifical/ preservatives, cutting down on Caffeine etc. Still save a bit for a glass of wine, but grapes are natural. Book I'm finding very helpful is "the diet doctors, Inside and Out." Aine

Hi Evelyn, Gosh its like hearing an echo, i don't know how many times I cried that into a pillow. Its tough to hear that, but good too that they can be open and honest with you. Like you I really missed for a long time the person that I was (or thought I was) pre SAH and was very bitter and I did grieve. I was angry that no one else seemed to noticed I had changed. A good pal then made me realise, we all change as we go through life, and our experiences undoubtly shape the people that we become. It just happens that our Change comes along quite abruptly and after and such a traumatic extent. It is like a giant slap. When you both are ready you will hopefully make peace with what has happened and embrace this brand you start! (at the end of the day, its been taken out of your hands and there's nothing you can do) Don't get me wrong, I resent that I've had an SAH, I'll quite happily bemoan Why Me?, but it has happened to me and here we are, I was so fed up Grieving for what I lost I nearly forgot to appreciate what I still had. (Thats a bit deep)! Hang in there. If you don't like what you see today, start fresh tomorrow. But remember be kind to yourself, you've all had a rough ride. Big Hugs Aine x

Hi Michael Thats very sad news, his family will be in our thoughts and Prayers. aine x

Hi Janet, Thanks for letting us know how you got on. Good to hear he's approachable, that means a lot. Hope the next 8 Weeks fly. What I did was email my questions so they had a chance to have proper answers prepared when you get there. Usually an email somewhere on the hospital letters. Hope eye pain settles. Aine xox

Hi there, I was 31 now feel like 60! Na only joking making my way back to 30. Aine

Hi Guys, Its Bizzare I've been ranting to my pal how services are up here and better down there! I liked the Wessex (I think) doing the Dvd and the Support Groups. Getting to see Mri Scan's etc although part isn't aftercare. For me Up here under Grampian This has been a fight the entire way. I was offered Horizons and excellent rehab services, but didn't really meet my needs, I was still having balance issues and it was only when I went to a Bupa Phyiso and they were able to help.(via Donald's work) I had obviously been addicted to Codiene as I was having the rebound headaches this never picked up. Until I researched it. Menigititis again has been likely going on for along time I'd been having loads of relapses apparently its quite common for us to pick up, Wouldn't it have been lovely if someone had the forsight to monitor our progress. Sorry for the rant, I feel the only relevant aftercare I got was via this website! If it wasn't for this I genuinely don't know where I'd be now. One Health Prof I will rant about was a Neuropsychologist. She was great, really empowered to build my confidence and get back out there. Actually I'll include her in the Credits. A crucial part in my recovery. It is rough that there still is this postcode lottery, But I still think generally there is very little understood about how we recover after a SAH. The Dr Death from Edinburgh seemed to be genuinely shocked by how well I'd recovered from when he saw me in Edinburgh. Prescription Charges are good though! Sorry Donald needing to get on Comp so haven't had a chance to re read my rant. Take Care and Keep Asking Aine