Sammy Anne

Thank you so much everyone for your time and care in writing these answers. I was very reticent to take the risk of drinking a glass of wine even on special occasions but, having read your thoughts on this, now I am doubly so. It does seem a bit of a luxury having a drink after all we have gone through. I suppose the further one moves away from the intial primary fear of not surviving, to surviving with discomfort, to finally starting to take life for granted again ... the more one begins to think about the frills of life rather than just its necessities. The last couple of weeks have been pretty uncomfortable headache-wise having said that, so I suppose I should be thinking less about the frills and spills and more about healthy living as a whole. Don't want to risk anything that can provoke a repetition of the SAH or even just provoke more headaches than I already have! It's been so good to be able to air the subject though with people who understand instantly the major and minor life changes one has to accept after an SAH. Michelle, Skippy ... the smoking thing is tricky. I smoked for over twenty years until 2007 .... you'll sleep so much better if you can give it up !! ... Isn't that so Win ??). Hope you're all having a good evening and a nice autumn (the conkers have fallen here in France so it's definitely begun!!) Take care, Sammy Anne

Crikey Mum of Five I know what you mean. I had a NASAH on June 2. Since then, many sounds seem amplified and have become unbearable, the worst being the sound of cutlery hitting plates - music is a killer, I find it at best irritating and at worst painful. Occasionally I too have to shout at my six year old to restore order; it feels like the worst thing to do, no reset in my case, just a bringer of headaches. But then I have only one to think about, I am full of respect for you, managing with five. Take care, Sammy Anne

Hi there, I was never an addict but I used to really appreciate a glass of red with my lentil curries. I was told by the neurologist before leaving hospital after my NASAH to never drink alcohol again under any circumstances. I have obeyed orders on this needless to say but could I ask you to say if you have had the same experience, if you have tried to drink a glass of wine (or a beer) since your haemorrhage and if so, how long after and with what (if any) effects. Really appreciate your ideas, advice, experience (to help me make decisions for Christmas which is coming !!). Sammy Anne

Wow you've been really brave. I can't believe you've managed to remain a silent member for so long! When I had my NASAH I couldn't wait to get involved in discussions for the reassurance that brought. Anyway, I hope your observations of the various posts brought you some comfort. Tell yourself that this Christmas and New Year will be much better, you're on the right road to recovery now and the only way is up !! All my best, Sammy Anne

Hi Paul, Believe me, once you start really feeling better physically you will be pulled (without even realising it) back into your life as it was and you'll realise there are moments, increasingly long ones, where you forget what's happened, you forget your fears, you start taking the future for granted again.... and this despite any ongoing pain and discomfort. Really really. It's all about survival, one has to believe in it to go on, survival is all consuming, normality will return, living won't have to feel like a struggle (unless one tries something crazy like bunjee jumping !!), one day all this will be a vague memory, time really does heal. I'm a great believer in positive mental attitude as a major part of recovery. PMA will be one of your greatest allies as soon as you start feeling physically well again ... you are not completely out of your SAH terrors probably because there is some pain lingering and the fear of the shunt failing, but once the pain has subsided or gone and the shunt is performing as it should, you'll forget it's there and you'll start living again without fear. Never forget, you're the boss and your body is listening!! Take care, Sam

Hi Paul, I just wanted to say that I'm thinking of you and sending you prayers and positive energy and thoughts for the weekend and for your appointment next week (though they'll probably be redundant and you'll be just fine, you sound very strong and resolute). I have just a couple of things to say as my NASAH seems pretty insignificant compared to much of what has been suffered by people on this site, except to say look after yourself in every way. Don't hesitate to get professional second opinions on whatever is possible if you have doubts. Once one has good communications with one's specialist / doctor, the main thing is to try to trust in them even if you have questions to ask. Take care Paul, keep in touch. I think most of us will be in that room with you in spirit at your appointment next week ... .. hope you're ok with crowds!! Sammy Anne

Thank you. I will try to get it checked out then.

Hi everyone, I had a NASAH on June 2. Six weeks hospitalisation. Four lumbar punctures. Have been home now for one month. My question is has anyone else experienced soreness in the back just to the side of the Lumbar Puncture injection site five weeks after the LP was performed ? I have various back pains from mid back to the coccyx but what is really beginning to worry me is the soreness I feel particularly if I bend forward, lean back against something like a back rest, am seated for too long. Anyone else been through this / have any idea what it could be ? Thanks, Sammy Anne xx

Thanks Win. Just started PhysioT but still feeling like I've been whacked in the back by a cricket bat. The pain's in the lower back right down to the coccyx (exactly the area the 4 LPs were performed on). It's often hard to sit up and very hard to bend over and even tougher to stand up straight again afterwards Not taking painkillers out of a sense of rebellion ... resenting still being reminded by these physical symptoms of the nightmare of June 2nd ... It's actually more painful now than when I left hospital ... maybe that's because I'm more active?? Just guessing. They have said I will need another L Puncture in September so we'll see then if it's blood in the spinal cord or just a result of almost two months of inactivity. Now I'm forcing myself to walk a little further. Today I'm taking my daughter for lunch. That's a good twenty minute walk. Definitely necessary to test. I hope to be able to do some cycling soon too. We both have velcro ID bracelets now (thank you Ebay) just in case I have a other funny "turns". I do a bit of singing as my little one is musical and she loves singing in English (though we're still working on the words!!) so taking your advice! Look after yourself too. I understand you have jumped through some seriously flaming hoops ... but you've come out the other side like a real "fire fighter". Keep believing .... Happy Thursday Xx

I meant to say a big thank you too to Laura, Win, Daffodil, Macca, Clare and Karen. Your advice is really invaluable, so is your support. It's such a relief to be in touch with people who understand. Thanks again, Sammy Anne

Laura, Oh I see it was May 14. Sorry. Still I can imagine him needing to minimise car trips and maximise rest. It's still early days.

Hi Laura, I am sorry about your Dad. It is a dreadful experience as everyone here knows a SAH. I do hope he wasn’t alone when it happened. Great that you could be available and so present to take care of him. I know how much that counts. My husband has been both “Mummy” and “Daddy” since I got ill and has taken everything on himself so I can switch off, rest and listen to what my body’s saying every day about how it’s improving. The back and leg pain is a strange thing. I can’t really bend down and if I do then getting up again without something to hike me up again can be a problem. If your Dad has this, then he probably needs an arm to get up (out of an armchair for example). Having said that, I asked the consultant for a prescription for Physiotherapy on my neck and back. It’ll probably be mostly massage treatment (unfortunately I can’t be more precise as most of the physiotherapists here are away on summer vacation) but that would probably be helpful. Maybe your Dad could benefit from something similar ? I can’t stand being in a car for more than about fifteen minutes especially if I've done something else during the day like walk. It’s exhausting. Every little bump in the road seems to go straight into the brain and at the end of a trip I just need to lie down in a dark room and take some painkillers! I don’t know how long ago this happened to your Father but I suspect he may have been more than just mentally fatigued through virtual co-driving. You’re right Neuro can be a very intimidating environment. I remember seeing patients in a dreadful state. One particular “horror”, and I measure my words here, was unfortunately witnessed by my daughter on one of her rare visits. But I also met someone there who gave me courage, she had had some form of brain injury which left her (a phonetics and language teacher) at the age of 41 (she also has a five year old daughter) unable to speak because of a paralysis of the tongue. The Neuros despite much consultation and discussion were unable to understand why the paralysis persisted. She left the hospital without much treatment or support and no medication and no doubt many questions about the future. I wish your Father the very best for a quick and complete recovery and courage to you and your family in your support of his convalescence. Take heart, he does sound good and most particularly in a good state of mind which has I believe a tremendous influence on one’s physical health. Best, Sammy Anne

Hi Alison, I live in Paris France and have very recently emerged from a six week hospital stay following a NASAH. I just wanted to say that your doctor putting the cause down to a nasal spray (amongst others) reminded me of something one of the neurologists said to me here. He lined this kind of product up in haemorrhage risk terms with that of abuse of substances for example ... So I "heard" him even though I had not used this type of product recently. I think these products are not as inoffensive as they are portrayed. Just thought you might be interested in hearing the same information from someone else. How are you feeling ? Best, Sammy

Thank you so much for this very warm welcome and for your support and advice. Frankly I have been breathing easier since finding this site and reading about different people's experiences. It's helping me in some ways come to terms with the feelings of anger and "injustice" that had been raging through me alongside fear obviously over the first few weeks. This week I've had more examinations, a PET scan and an examination with a doctor from Internal medicine, as they have been looking at rare or inflammatory diseases as a cause having excluded pretty much a "neurological" cause. Yesterday I was relieved to learn that they had finally excluded Sarcoidosis as a possible cause (can't tell you the horrible invasive examinations I've had to undergo to get to that conclusion). I'll need to do another lumbar puncture (number five ) beginning September, cardiac exams as the bleed caused inflammation around the heart and lungs and hopefully by end October when I have another rdv with the Neuro consultant, I'll be given the all clear if that's possible. In the meantime I've cancelled the trip to Britain as I'm tired and just don't feel safe travelling (from France Clare). It's been a testing time for my five year old daughter who wasn't allowed to see me for the first sixteen days ... yes we counted every one of them ... partly because I was too ill and partly because in France children under 15 are not allowed to visit (except for "exceptions" which we managed later on). My daughter and I have never been separated so this was very hard and unnerving. She is feeling "unsafe" and asking what will happen to her if we both die while she is small. This comes from having seen her father in intensive care for three weeks with pneumonia and pleurisy and now her mother six weeks in intensive care for the NASAH (by the way, she very probably saved my life as we were alone at the time it happened, she couldn't wake me for several hours and then took the phone and called her father who was away at the time). I bless every day I wake up feeling in tact and alive and most of all bless my daughter for her courage and ability to recognise that something was wrong and do something about it. Thanks again to all who wrote back. Sammy Anne

Hello, I suffered an SAH on June 2. Spent five weeks in hospital most of that in intensive care neurology. Vasospasms, hideous head aches (morphine treated) and hallucinations beginning a few days after the SAH and lasting about two weeks, 4 lumbar punctures. No real diagnosis but ongoing examinations programmed over the next three months. Since leaving hospital on July 8, I've a lower back pain which is getting worse rather than better especially when I try to bend over, pick something up or if I am seated for any length of time. Same sort of pain in the back of my legs from the hips to the knees. I know most of you have had the same or similar experiences and I'd be grateful for any ideas on what this back and leg pain might be about.... I'm afraid to bring it up at the next consultation in case they hospitalise me again Still have head aches but thankfully slight compared to the intial "thunder clap" headache. Exhausted after the slightest effort. Only pain relief is lying down. Am also wondering if I dare chance a trip to the UK (car and ferry) on 1 August which has been planned for months (don't want to disappoint my little girl who adores coming back to England). But it's so close to the hemorrhage date I'm afraid to chance all that driving even though I'm only a passenger. What do you think ? Best regards. Sammy Anne