lisac Posted March 2, 2012 Share Posted March 2, 2012 Hi there, I'm very glad I found this forum. I've been looking for support since I got home from the hospital. I had a SAH a month ago. I was cross country skiing with two friends (who luckily were nurse practitioners). I started feeling terrible pressure in my head and neck, then a headache with nausea. They contacted my spouse and brought me to the local ER. A CT Scan showed blood in the brain. Two ambulances and a plane later, I was at a large teaching hospital and had the aneurysm clipped the next morning. I spent 2 weeks in the brain surgery ICU and have been home for a little over two weeks now. My surgeon told me that I'm very lucky and will not likely have any long term neurological issues. I feel very fortunate for that. I am however, struggling a bit since I got home. I don't feel like the hospital prepared me for what to expect when I left. If any of you can help answer some of my questions with your own experience, I'd very much appreciate it. - Do you also have episodes of anxiety and sadness? I often do at night and have difficulty sleeping. My mind tends to go over and over what I can remember of the experience. - The area of the incision on my scalp feels tight and kind of mimics a headache. Sometimes I have a little swelling on my eye and forehead in the morning. Anyone else have this? - At what week or month did you start walking? How long? -Some days I feel achy, tired and emotional. Does that mean I overdid it with activity the day before? -Is there anything that helps with the fatigue (other than napping of course Thank you! Lisa 1 Quote Link to comment Share on other sites More sharing options...
Winb143 Posted March 2, 2012 Share Posted March 2, 2012 (edited) Hi Lisa, You have got over the major bit, the actual incident...time helps and try not to rush it ....you look back in 6 months then a year Then think back and see how well you have done!!! I find singing and thinking happpy thoughts makes me brighter....My singing is getting my husband and daughter down lol Try and go for a coffee decaff of course...and a hugh cake....No shhhh I am on a diet Good luck in your recovery Love WinB143 xx Edited March 2, 2012 by Winb143 Quote Link to comment Share on other sites More sharing options...
paul99 Posted March 2, 2012 Share Posted March 2, 2012 hi lisa welcome to btg you are doing so well for a month well done you the sadness and anxiety seems to be the norm after such a bleed the sleepless nights are also normal many people on here will tell you to have the odd nap everyday let your body be your guide and take note of it please dont try and remember what happened when your feeling stronger it will come naturally the suture area will be ichy for quite some time as the skin is healing and rebuilding the strenght so it will ich if it helps gently rub some body loition in providing the sutures have healed also make sure you drink plenty of water everyday this seems to help with the tiredness your body is trying to ajust to what has happened the emtional feeling is totally normal it pass's in time as many on here will tell you JUST listen to your body please you will have bruiseing around the scar area which maybe the cause of the swelling around your eye which i think will go down in time congratulations on your recovery so far and may it continue in leaps and bounds just listen to your body and do what it says lol take care Quote Link to comment Share on other sites More sharing options...
Kaz Posted March 2, 2012 Share Posted March 2, 2012 Hi Lisa You've come to the right place for support and answers- I am 5 months post SAH - like you, totally unprepared once leaving hospital - its been a real rollercoaster of emotions, the anxiety, loss of confidence, tears, fatique, frustration at not being able to cope .... the list goes on. It takes time, but you will come to realise and accept that this is all part of the recovery (I still struggle). Hopefully you have family and friends around you to help and support - and you must ask for help - something I am still coming to terms with - admitting I can't always cope and do need some extra help. The fatique - can be a sign you have done one thing too many ... I am still learning my limitations .... also learning that if you are tired, sleep - each week it does get easier but you have to be patient (if only I could take my own advice!!) I found this site a couple of months ago, I was at an all time low - just being able to read about other people's experiences and to be able to rant and moan really helped and to also realise that you are not alone Take it easy, be patient and drink lots of water (and cry if you want to, I've certainly done my fair share) Quote Link to comment Share on other sites More sharing options...
Sandi K Posted March 2, 2012 Share Posted March 2, 2012 Welcome Lisa. We tend to be cast adrift once we are discharged. You will find lots of support here, this site has been so helpful for me. Get lots of rest, your brain needs time to heal. Sandi K. Xoxooxxo Quote Link to comment Share on other sites More sharing options...
MaryB Posted March 2, 2012 Share Posted March 2, 2012 Lisa, I am 5 months post NASAH, I am finally doing my normal work week with a nap everyday at noon for a couple of hours. I cannot go without my naps and water. I had not a clue what to expect when I was in the hospital-or when I got home. I thought I would be back to work in a week or 2, it was close to 3 1/2 months. Each week gets a little better, I for some reason never got really depressed as some do. I have fibromylasia and take cymbalta so I do not know if that matters. I know I jsut recently was able to put my case all together, last week was my first appt where I could even think of a good list of questions to ask & felt I could go by myself without my husband. It takes time, much rest, do not rush it, drinks lots of water, stay healthy, and stay upbeat as best you can. I found this place just a couple of months go when googling how long will these headaches last. This place is the best medicine I could of ever been given. Good luck, MaryB Quote Link to comment Share on other sites More sharing options...
winter Posted March 3, 2012 Share Posted March 3, 2012 Hi Lisa! Welcome to BTG. This is the best place - lots of people who've gone through and are experiencing similar after effects! Lots of support and great information here. Seems all of us have been "fixed" and then let loose to deal with everything else on our own. As the others have already said, drink plenty of water! It really does help. And of course rest and sleep are also important. I'm a little over 2 years post SAH and the improvements are huge (as I look back) since the early days. It's normal for your mind to think of what's happened to you. You've had a major surgery and event in your life - it's a HUGE deal. Things will and do get better, it's a process that takes time and patience. The time frame is different for each of us - just know that what you're going through is "normal" for what you've been through. Of course consult with your doctors if things get worse or you feel something isn't right. There are great informational articles here, so much help from members. Don't know if you've read it yet, A Letter From Your Brain. It's very helpful to read and re-read. Hope to hear more from you. Glad you found BTG!!! Like Mary said, it's the best medicine ever. Big hugs to you, Carolyn Quote Link to comment Share on other sites More sharing options...
Jilly Posted March 4, 2012 Share Posted March 4, 2012 Welcome Lisa, I hope you find all the information and support you need here, I think we all feel a bit cast aside when we leave hospital, there seems to be very little information and support, I don't know if that is because everyones experience is slightly different or what! I am one year post SAH and coiling and I still have trouble with fatigue, I had some Cognitive behavioural Therapy which helped with the anxiety perhaps you could investigate that, but for now I wish you well and hope your recovery is speedy and calm, don't expect too much of yourself it is still early days for you yet, take care xxx Quote Link to comment Share on other sites More sharing options...
KelBel Posted March 4, 2012 Share Posted March 4, 2012 (edited) "- Do you also have episodes of anxiety and sadness? I often do at night and have difficulty sleeping. My mind tends to go over and over what I can remember of the experience. - The area of the incision on my scalp feels tight and kind of mimics a headache. Sometimes I have a little swelling on my eye and forehead in the morning. Anyone else have this? - At what week or month did you start walking? How long? -Some days I feel achy, tired and emotional. Does that mean I overdid it with activity the day before? -Is there anything that helps with the fatigue (other than napping of course)" Hi Lisa Welcome to this little group of lovely people - I am 26 months post SAH now (and I had 1 aneursym coiled), and I still have episodes of anxiety and sadness, although nowhere near as much as I had straight after the events... and I still to some extent relive the experience every now and again. - Others who have been clipped will be able to help with incision tightness and swelling. - Do you mean going out for walks? I started to try to go out with my mum and the dog some mornings within 3-4wks post op, and we would do 1-2 miles walking to the park and round it, depending on my energy level. About 4/5 weeks post op I agreed to walk round to a friends for lunch. She was only 5-10mins walk around the corner from my parents (who I was staying with). It was the 1st time I had been out on my own, and I hadn't even thought it could be a problem...I got to the end of the road and wasn't sure whether to turn back, as it was all so overwhelming. I was scared to be out on my own! The cars were whizzing past me at what felt like 90mph, but was possibly 20-30mph... I made it to my friends, but I was totally shattered when I got there, and found it really hard to have a conversation with her. From my experience, I would suggest going out with someone initially - maybe walking to the end of the street and back again, then around the block, and build it up gradually as you get used to what you can cope with. Ease yourself back into it. - Fatigue - try to ease yourself back into 'normal life' as much as you can, to find out your limitations. It can be difficult to work out what you can do without over-doing it. You will learn what will over-do it. It is all about pacing yourself and taking it easy. I know when I came out of hospital that is was enough on some days to get out of bed, have a shower and get dressed. I would usually go back to bed in the afternoon for a few hours, and I couldn't cope sat in a room with my parents and the tv on, with them trying to talk to me or each-other. It was all too much. I now know I cannot finish work (especially on a Friday after a full week of work) and go straight to do food-shopping. I have to come home and rest for an hour or so before I can contemplate that or that will do me in. But I am still learning I can't do everything...I am constantly being told by friends and family that I cram too much into my weeks... I try, as much as I can, to avoid busy, noisy, bright and/or smoky situations; I find these can take their toll on me and tire me out more. (Unfortunately I work in an open plan office with about 100 people on our floor alone, which has the brightest ceiling lights, impossibly thin blinds which are blinding when the sun shines through... and the noise level goes up and down constantly... I am trying to find some ways of making it easier for myself... I've ordered some earplugs to see if that will help, and work are looking into covering the windows with a film to block the light a little more...). I hope this helps, but I am sure others will come along with more answers and suggestions for you to try Take care Kel x Edited March 4, 2012 by KelBel Quote Link to comment Share on other sites More sharing options...
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