goldfish.girl Posted December 31, 2010 Share Posted December 31, 2010 Hi, Has anyone else had after effects of SAH that seem to be getting worse? I am almost 2 and a half years on and although some things have improved a bit the headaches, diziness and balance haven't. I seem to be falling more often and am having lots of near misses on stairs. I'm also finding that when I see people I 'know' my brain is not registering that I know them even if they say my name (a big clue that I know them!) it's taking a while to understand who they are - I look when someone says my name but there seems to be a long delay before my brain understands that it's not just a face, it's a familiar face. I'm feeling quite worried by this as I thought things would improve or at least not get worse. Has anyone else found things getting worse after so long? M x Quote Link to comment Share on other sites More sharing options...
jess Posted January 1, 2011 Share Posted January 1, 2011 Hi there yes it did but then it started to get better again I still get dizzy now sometimes but I hve learnt to live with it. Try not to worry it will make it worse. Jess.xxx Quote Link to comment Share on other sites More sharing options...
Gill C Posted January 1, 2011 Share Posted January 1, 2011 most thigns in general have got better but someotimes the tiredness seems worse no matter how much I sleep. If I have a bad head day it also seems far worse (had one last week & started with one today). I also fell over tfor the first time post op the other week although I knew my sons' step stool was there I just couldn't disentangle myself. Quote Link to comment Share on other sites More sharing options...
Vivien Posted January 1, 2011 Share Posted January 1, 2011 Hi there, I am 3 and a half years from my SAH, and yes I sometimes feel that I am getting worse, staggering a bit today in fact I reckon that it is because I am actually doing more as time goes on, so have more stuff to remember ( or forget!) and also I probably don't listen to my body enough and rest when I am tired. If you are worried maybe go see your GP? Take Care Vivien x Quote Link to comment Share on other sites More sharing options...
rod123 Posted January 1, 2011 Share Posted January 1, 2011 Hi Yes Merrills been like that right the way through,sometimes she has good periods then something completly different and unexpected happens recently it was a blood clot behind her eye,which they dealt with and something thats been going on for a while is that Merrills emotions seems to get mixed up, one night we had an intruder and while i was trying to sort things out Merrill just giggled all the way through it, Merrill does not respond to a situation how you would expect, so they are doing more blood tests this wednesday as they think it might be to do with hormones. I hope you start to feel better soon Best wishes Rod Quote Link to comment Share on other sites More sharing options...
maggie Posted January 1, 2011 Share Posted January 1, 2011 Hi there, I can relate to what your saying but agree totally with Vivien.I think you are so right Vivien ....... ' reckon that it is because I am actually doing more as time goes on, so have more stuff to remember ( or forget!) and also I probably don't listen to my body enough and rest when I am tired.' I really do think that as time goes on we are so busy gettting on with our lives we forget to rest as much as we need.I know that I am the biggest culprit. Please go see your doc and get checked out though. Good luck and all the very best for a fab 2011. Quote Link to comment Share on other sites More sharing options...
Karen Posted January 1, 2011 Share Posted January 1, 2011 Hi, Go ask your GP to send you for a balance assessment at your local hospital (if you haven't already discussed it) .... Would always advise folk not to sit back and just presume that nothing can be done, as help is there, but you just have to ask. I was sent for a balance assessment and was referred for physio .... my aneurysm was near to the cerebellum, which affects balance + I had dodgy eyesight thrown in for good measure, but was given head exercises and to a certain degree, it has helped to re-train the brain. If you feel that you're suffering a degree of anxiety, which is quite common with this type of injury, then mention that as well, as the medics can help you .... Wishing you the best of luck and just wanted to let you know, that you're not alone. xx Quote Link to comment Share on other sites More sharing options...
goldfish.girl Posted January 2, 2011 Author Share Posted January 2, 2011 Thank you for all the replies. I think I will visit dr, because I keep worrying that if things are getting worse, something might've gone wrong again. It helps to know that this is something other people have found happening to them. Thank you M x Quote Link to comment Share on other sites More sharing options...
Leo Posted January 2, 2011 Share Posted January 2, 2011 Hi, I agree with all of the above ... I think as time has gone on I am doing more and forgetting to rest as much as I need to then the fatigue sets in plus headaches which go on for days. The fatigue leads to the jumbling up of words, forgetting words, repeating myself and so on. All very frustrating. And so I try harder. Sometimes it is hard to keep smiling because it feels like two steps forward, five steps back as am so exhausted most of the time. In 2011, I have to learn: MY BRAIN NEEDS TIME TO SWITCH OFF & REBOOT. Even Superwoman had a rest now and then! It's very hard to get the balance right (am not there yet) but just to be on the safe side, I think Karen is right, go and see your GP. Best Wishes for 2011, Leonie x Quote Link to comment Share on other sites More sharing options...
goldfish.girl Posted January 2, 2011 Author Share Posted January 2, 2011 Thank you Leo. I have been off work since the end of September so I don't think i'm doing more than before - if anything I have discovered how much I can sleep, any time, any where now that I have stopped forcing myself to keep going! Karen, I have been going to physio for a few months to try to help with my balance. Can you explain more about training your brain through physio please? (or was that a figure of speech lol) Rod, i'm sorry to hear about your intruder - that is the last thing you need to have to deal with, hope all is ok now? Happy, healthy New Year to you all xx Quote Link to comment Share on other sites More sharing options...
Leo Posted January 2, 2011 Share Posted January 2, 2011 Thank you Leo.I have been off work since the end of September so I don't think i'm doing more than before - if anything I have discovered how much I can sleep, any time, any where now that I have stopped forcing myself to keep going! Karen, I have been going to physio for a few months to try to help with my balance. Can you explain more about training your brain through physio please? (or was that a figure of speech lol) Rod, i'm sorry to hear about your intruder - that is the last thing you need to have to deal with, hope all is ok now? Happy, healthy New Year to you all xx I understand about the new found ability to sleep, really I do. If you aren't doing more either physically or mentally (stress increases my headaches & fatigue) then it is probably best that you see your GP. Could be something totally unrelated like a virus (she says hopefully). Whatever the case, we all wish you well xoxox And as for your last comment, I second that, Happy Healthy New Year to everyone! Quote Link to comment Share on other sites More sharing options...
Karen Posted January 2, 2011 Share Posted January 2, 2011 Hi, The physio I had, kind of takes you out of your comfort zone for a little while (well it did for me .... lots of exaggerated head and eye movement, but in a controlled environment) and re-trains your brain not to freak out and to start to recognise it as being normal ... that also comes with re-building confidence and realising that nothing bad is going to happen to you. Not sure what type of physio you're having at the minute and it's probably completely different to what I received, as had a third nerve palsy to my right eye, which featured quite heavily with the the physio program that I was given. My aneurysm was also quite close to the cerebellum which does affect balance etc and they presumed that the damage caused by the bleed was the probable cause. Do you use a walking stick? I found that it helped when I was out and about and people gave me a wider berth ... it also helped with the rhythm of my walking and gave me something else to focus on. I haven't used it now for a long time, but it's still in my cupboard if I need it. Balance and sight problems are the absolute pits and I still have problems when I'm having an off day .... Hope this helps a little and good luck...xx Quote Link to comment Share on other sites More sharing options...
lawla Posted January 3, 2011 Share Posted January 3, 2011 im going on 15 months out and still get dizzy and i had a sobriety test for fun at the hospital and im legally drunk but sober, soo it comes with the territory. I still find myself waiting for a major breakthrough but i think i had it and dont know it. I need to face that im not gonna be 100% maybe 98 % and ill take it. Quote Link to comment Share on other sites More sharing options...
goldfish.girl Posted January 3, 2011 Author Share Posted January 3, 2011 Thank you Karen. That exaggerated head/eye movement is exactly what would have me flat on the ground!!! My physio has all been about improving core muscles. I did question this as I think my falling is caused by dizziness and turning my head too quickly and nothing to do with muscle tone so what you have said is very interesting, i'll ask about it. I don't have a stick but there are days when I think it would help (I find it embarrassing though, I had one in the early days and refused to use it and stayed home unless I had someone to come with me so I could hold their arm). Lawla, thank you for your reply. I went for petrol today, staggered getting out of my car, couldn't get the petrol nozzel into the hole, then staggered on my way in to pay. Sure the staff thought I was drink driving & felt I had to keep breathing over them as I paid just so they would know I had no alcohol fumes coming off me - sure I'd fail a sobriety test too but I think it would make me laugh trying!! On a different matter, I have just read that even Paracetamol causes rebound headaches? I knew codeine did & try to only take it very occasionally. I go through packets of Paracetamol though each week. Does any have more info on this causing rebound headaches please? Michelle x Quote Link to comment Share on other sites More sharing options...
Super Mario Posted January 3, 2011 Share Posted January 3, 2011 (edited) Paracetamol may cause rebound headaches, I have experienced them. You may need to try and cut them out and see what happens to your headaches. It is not instant though and may take a few days to disappear, while it is getting out of your system. Besides which paracetamol may cause liver damage so I would be concerned about the number you are taking. If after "drying out" from them you still have frequent headaches I would see your GP to look at alternative painkillers. As for the balance problems, I also get severe dizziness on turning my head rapidly left to right, I also go dizzy just by looking upwards. Falls are a frequent happening, crossing roads is a nightmare, for example. Don't be embarrassed to use a stick, I now buy them like you would a handbag or shoes, I treat them as a fashion accessory, but with a stick I have to hang on to someones arm, so I use a walking frame to go out on my own, and I am only 61 and have had the frame for 7 years now. Do not let pride take away your independance, freedom and safety, it is not worth it. Many on here know I travel abroad frequently on my own with my frame, without it I would be unable to achieve so much. Live life to the full and enjoy it by using whatever aids are neccessary. Edited January 3, 2011 by bogbrush Re-worded unqualified medical advice Quote Link to comment Share on other sites More sharing options...
kimmy Posted January 4, 2011 Share Posted January 4, 2011 hi i am 15 years down the line and suffer dizzy spells all the time, have been to see a neurologist and had lots of different drugs and as yet nothing has stopped the dizzyness Quote Link to comment Share on other sites More sharing options...
lawla Posted January 4, 2011 Share Posted January 4, 2011 (edited) it could be due to healing, and where the surgery was. i get headaches that may never go away, hang in it would get better. I walked with a broom stick the first few months refusing a cane, i even had physical therapy and still dizzy and balance issues which i think for me is a defecit. Edited January 4, 2011 by lawla Quote Link to comment Share on other sites More sharing options...
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