Karen

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I ended up having to be weaned off mine extremely slowly (over many months) as experienced pretty bad withdrawals symptoms and plus the anxiety of having a seizure whilst doing so ... I was slow but sure and all was eventually fine and my confidence was gradually rebuilt and the anxiety eased and then stopped. Takes time both mentally and physically. The very best of luck to you both. xx

Original posted in Your Story - http://web.behindthegray.net/index.php?/topic/538-your-story/page-10#entry39927

Good luck Joanna and hope all goes well on Thursday. xx

Daff, afraid to say that I haven't woken up feeling refreshed since the bleed and I don't have a shunt. In fact I sometimes feel more tired when I wake up than when I do before I go to bed. I can't remember now what it feels like to have a "good nights sleep", as this heavy feeling seems to be my new normal. It takes me a good couple of hours in the morning after waking up to actually feel human. In the early days I found sleeping with a V pillow and being more propped up helped the heavy morning head, rather than lying flat. I haven't used a V pillow for years but I'm thinking of buying another one to see if it helps again. This is yet another morning for me of getting up late ... Eric working away and he's normally my alarm clock for getting up. I also find that too much sleep can make me feel worse in the morning....however, I could sleep for England after 7am. I also look tired and this morning I've put in some moisturising eye drops, as it helps a little. I don't like having any appointments in my day before 10am, as I just don't feel "all there". I think that's what is great about sharing this sort of stuff, as you tend to think that it's just you experiencing it. xx

Hi Poppy, I too have an aneurysm that hasn't been fully coiled ... I'm due for my next scan in 2015, which will be 10 years from the initial coiling .... I've been monitored and scanned during those 10 years. I know how you're feeling .... however, if I need more surgery, I will take it and that's not to say that I won't feel scared. It's the fallout from the bleed that causes the problems to the brain. I would rather take the chance with the surgery, then leaving it and living with a ticking time bomb...don't think that I could live with that thought. My Mother in Law had an aneurysm coiled ... she never had the bleed ... had a couple of days in hospital and came through it okay. Take care lovely and wish you well. xx

You and me both Win with the back exercises! xx

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No worries Win, bless you... Where the heck are the temples? I'm going to have to look that one up! Just looked it up and have never heard of it ... you're a first for me Win! I'm going to have to do some research. Take care lovely and I'm sure that you won't break it! Will be thinking of you. xx

Win, I haven't heard of a CR scan ... did you mean CT scan? There's some info on CT scans on the following site http://www.netdoctor.co.uk/health_advice/examinations/ctgeneral.htm Wishing you all the very best for your scan and hope that you have good results. Is this just a follow up or have you been having problems ... sorry, I'm nosey and you don't have to answer! Hope that you're okay ...xxx

Hi Tony and congratulations on your 2nd anni-versary! I found the first couple of years post SAH the hardest and it was probably at this stage where I realised that I wouldn't perhaps get back to my old "normal". However, I became more accepting of my new "normal" and stopped pushing so hard and I think that the 2 year anni-versary is quite an important one. You sum it up nicely with It is a difficult journey but easier to bear when you have others around you that are walking the same path and know exactly how you're feeling and help make sense of it all. It's always great to see members return and post their progress on here and it gives hope. Thank you for your kind words about the site and I'm really glad that you've found it helpful. Keep well, xx

Paul, I'm so very sorry to hear that you're feeling so down. Penny has given you good practical advice, so I can't really add anything, but please go and see your Doctor, as many of us will know how you're feeling. xx

Hope that it works for you Chloe. Always swings and roundabouts with most medication. I managed to eventually half the dose and it seems to mainly keep the migraines at bay albeit it having the odd one, so am quite happy with it. Should also help a little with any anxiety that you're experiencing. Good luck and let us know how you get on. xx

Good advice and wishing your Mum well. I think that quite a lot of us were on some heavy medication during the hospital stay and that probably doesn't help with the state of confusion that you feel. I thought that Nurses were 1960's type Air Hostesses for a few days, so goodness only knows what the state of my brain was in .... completely weird! I would also say that the level of tiredness that you experience after a brain bleed and also the weakness that you feel is pretty horrendous and hard enough to keep your eyes open for a minute ... but I suppose that's the brains way of healing by shutting down to some extent for it to start repairing. One thing that I would say, is to make sure that your Mum is eating ... Because I found that there just wasn't the help in hospital and many a time I would nod off and my food would be cleared away .... not easy having to lie flat, cut your food up and try to feed yourself when you have little energy. xx

Hi Momo, I'm not sure whether you mean an Infundibulum rather than an Infundebella? I discovered a few years down the line that I also have an Infundibulum on the opposite artery to the bleed, but on the left hand side of the brain (post communicating artery), that may or may not turn into an aneurysm. The rubbish Neuro that I was seeing at my local hospital, just blabbed it out when he was in a fix because he couldn't remember who I was, or what I was there for ... so just read out my notes aloud and that's when I heard it. :shock:Therefore, I started searching when I got home! xx

Congratulations to you both! Lovely to hear your news. xx

That's lovely news Daff and well done...proud of you! xx

As far as I know, Propranolol doesn't thin the blood, as I wouldn't have taken it. xx

I've never had high blood pressure either and my BP is pretty perfect and always has been, but Propranolol can be used for the prevention of migraines .... as with all things "head wise" they're not quite sure how it works ... it's a preventative rather than a pain killer. Codeine, can cause rebound headaches as a side effect, as some of us have learnt ... even with a full on migraine, I still only take Paracetamol. It's very hard to know what to do for the best .... bless you, it's kind of experimental and what will suit one person, won't always suit another. So very difficult. Hope that you find some release from the pain. xx

Hi, I developed migraines in my early teens and then went on to have the classic type with an aura after the birth of my 2nd child. For me personally, I find that coca cola can set them off, but not always. Stress seems to be a big factor for me and then I can have one. I was put on a beta blocker called Propranolol after the SAH to limit the amount that I have and I can go for months now without having one .... it seems to work for me, but isn't the cure all....it also helps a little with anxiety. I'm only on a low dose, just one a day ... I was changed from the normal Propranolol tablet, to a slow release one and I found it hideous ... don't know why, but had side effects from it, even though it was the same brand. There's a little bit of info on the following link ... might be worth talking to your GP about it. http://www.patient.co.uk/medicine/propranolol

Bless you Sarah Lou and think that you've probably described social events pretty accurately for a lot of us. I must admit that I still find social events a bit like going on a mission....where as before the SAH, you don't have to think about it, as it would just be an enjoyable experience. I'm much better at dealing with it now and some social events have gone okay and others not so good ... all depends on how I'm feeling on the day. The social events that I really don't enjoy at all now, are the business dinners for clients that I have to attend for the firm that Eric works for... I find it absolutely hard work making small talk and the last one that was organised had 40 guests which was too large for the Restaurant to cope with, wasn't at all organised and totally chaotic, so I found myself running about like a Waitress ... in fact, one of the clients actually thought that I was a Waitress and asked me for a plate... We're both one of the "oldies" now at his Company, so you just muck in and plus I worked for them pre-SAH, so I know the business. I will do my best to get out of attending any of these now...but it doesn't normally work! Unfortunately I still experience my brain shutting off when it's got too much and for me, it's a warning sign to get home and get some quiet time or sleep. This really hasn't changed for me, but like I say, some events have gone better than others and I've definitely improved, but it's still there. xx

Good luck Daff, it's all so very difficult to manage and I'm still trying different ways. It would be great to see some research carried out, as we all seem to be singing from the same hymn sheet on here and not getting the help that we need ... very frustrating. xx

Daff, you have to do, what's good for you ... I think that probably all of us have experienced PTSD, which is post traumatic stress disorder and very few of us have had it diagnosed and have had the help with counselling and have struggled to deal with our lives being turned around ... it's a post code lottery as to the help that you get and also down to your GP and their knowledge, which in most cases doesn't seem to be good. I recognise now, that I had it and didn't get any help and just didn't know about it ... I just thought that I was weird and not coping ... hence this site and I can often see many members that join us, who are suffering the same. I think that Anxiety, is the major key and perhaps not always depression, well not in my case and I can only speak for myself... but the anxiety is a huge key player in my life since the SAH's. Again, it's only my opinion and you have to be honest with yourself .... but if your "mood" is good and I'm not a Doc and can't advise you, as you know, but would say that it sounds as though your anxiety level is higher .... did you do the test re: Anxiety v Depression at your Doc's? For some people on here, anti-depressants have improved their lives as it's helped them to remain on an even keel ... for me, I tried them and experienced side effects, so it wasn't the answer for me personally and I found that it increased my "sleepiness" and didn't increase my energy in any way at all and found it to be the complete reverse in my case and I stopped taking them. I'm not sure if any of the medics have ever tackled the subject of fatigue, low energy and lack of motivation when you have fatigue to deal with .... which is a complete vicious circle. I don't have any experience on shunts, as I don't have one, but don't think that you're experiencing anything more with having the shunt, then some of us and I can certainly empathise with you and what you're going through. I'm on a low dose Beta Blocker to help with anxiety and it also helps to keep my migraines at bay ... it's not the cure all, but it has helped. I also make sure that my diet/food includes the B vitamins especially (worth doing the research) and that I have plenty of Iron in my diet to help reduce fatigue and anxiety ... I also take a daily supplement B12 in the form of Feroglobin B12, which comes in liquid form and includes Vitamin B Complex, Zinc, Iron and folate, it's made by Vitabiotics and I find that it helps me with the fatigue. It can be purchased from a Supermarket, but you need to check with your GP that you can take/tolerate Iron etc. Take care lovely and many of us will know how you're feeling. xxx

If you're worried, go and see your Doctor and get your blood pressure checked etc. Headaches seem to be pretty normal post SAH and can often go on for quite a while and anxiety of "is it happening again" doesn't help and we've all been through it, so we know how you're feeling Keep yourself hydrated with some water, take some rest and give your Doctor a call ... it will give you peace of mind. I was told that it takes about 3 months for the blood to fully dissipate down the spinal cord and the early days/months post SAH are always very worrying ... We can't as a site, ever offer anyone medical advice, as no one on this site is qualified to do so. Go and make a call to your Doctor. xx