CharlieD Posted June 21, 2018 Share Posted June 21, 2018 Hi All I have had a very bad day today. And have felt like I did when I was in hospital. I had my SAH 6 wks ago on Sunday. There was no aneurysm found on 2 angiograms. I felt like while it has been very hard I have improved. However today I had a funny turn which felt like when I had the bleed. All day I have felt the pain in my head and spine. My family worry and tell me to go to a and e when it is bad but I would be there all the time. I have been told I am not likely to have a rebleed so keep telling myself it can't be that. Did anyone else here have these experiences? I am not sure if I should be worried. When I had the bleed after a while I slurred my words and lots use of my right leg briefly. There has been no other symptoms. I hate this not knowing what to do for the best. Thanks Link to comment Share on other sites More sharing options...
Skippy Posted June 21, 2018 Share Posted June 21, 2018 Hi there Sorry, but I have to agree with your family - if its bad enough to scare you and make you panic - get to A&E. I was taken back in 3 weeks after with a scare of another bleed - it turned out to be an analgesic headache caused by the codeine I had to take. Get it checked out - don't take chances Link to comment Share on other sites More sharing options...
CharlieD Posted June 21, 2018 Author Share Posted June 21, 2018 Thank you. The problem is I am always scared and in a panic it seems. It feels a bit more under control now. I have decided to keep taking pain killers and if it gets any worse I will go and get checked. Link to comment Share on other sites More sharing options...
ClareM Posted June 21, 2018 Share Posted June 21, 2018 Hi Charlie Is there a nurse specialist at the unit you were treated that you could get in touch with? Hopefully it is just nothing, possibly some stress but you should go and get it checked out. If all else fails go to A&E. Hope you get get things sorted Clare xx Link to comment Share on other sites More sharing options...
CharlieD Posted June 21, 2018 Author Share Posted June 21, 2018 There was and she was great. I was not sure how long after I was discharged i am allowed to call her for? Do you think it is still ok? My sister thought it might be due me getting my time of the month. I had not had one since the SAH and so wondered if its hormones gone crazy. I will ask the nurse that too if not I might call GP tomorrow if the pain is not under control. Link to comment Share on other sites More sharing options...
Super Mario Posted June 21, 2018 Share Posted June 21, 2018 Charlie, there is not a time limit of when you can call the nurse specialist. 6 weeks is still very early in terms of a recovery from a SAH. Ring her, if only to put your mind at ease. She would be a better option than your GP as she will be experienced in SAH survival Link to comment Share on other sites More sharing options...
ClareM Posted June 21, 2018 Share Posted June 21, 2018 Yes Charlie, definitely give her a call tomorrow, you don't want to go into the weekend with the worry. I work with a nurse specialist in another medical field and we welcome calls from patients if that keep them out of hospital. Good luck xx Link to comment Share on other sites More sharing options...
CharlieD Posted June 21, 2018 Author Share Posted June 21, 2018 Great I will do that first thing, I found her to be a huge support and other than the neuro surgeon the person i trusted most in the hospital. I was worried to call so I am glad i posted here. I don't want to be a burden or be the crazy person who is making too much fuss. Link to comment Share on other sites More sharing options...
ClareM Posted June 21, 2018 Share Posted June 21, 2018 Just remember you aren't a burden or a crazy person, you are a survivor! The nurse specialist's role is to support so hopefully she will do that. I know mine was really helpful and didn't make me feel a pain at all. Good luck let us know how you get on Clare Link to comment Share on other sites More sharing options...
Daffodil Posted June 21, 2018 Share Posted June 21, 2018 Charile, I still contact my nurse specialist on occasion.if I have a question re my shunt or other so it’s fine and they are happy to help if it means you can move forward. Periods can cause some extra hormonal unbalance and in turn the disruption post bleed mans we get strange effects and maybe don’t cope so well. Try and Look at your diet in the run up to your period, maybe consider taking some extra vitamins supplements for women , b etc and also including things like bananas etc 5hat have magnesium etc in it but take advice and maybe ask your nurse if they advise anything, yes main thing is If things get worse then get checked. Link to comment Share on other sites More sharing options...
CharlieD Posted June 21, 2018 Author Share Posted June 21, 2018 Thanks I will give some thought to my diet and supplements and talk it through with the nurse tomorrow, I hope she is happy to stay in touch as yours is, it would be a real relief to have someone to call. Link to comment Share on other sites More sharing options...
Winb143 Posted June 22, 2018 Share Posted June 22, 2018 Good luck Charlie and I hope you get to talk to someone as a trouble shared etc. My Daughter always asks me when I get a bad head "Any blood tastes Mum?" I say "No Sa just a bad head" Good luck Charlie lets hope it is nothing xxxxx Nothing like peace of mind though xxxx Link to comment Share on other sites More sharing options...
CharlieD Posted June 22, 2018 Author Share Posted June 22, 2018 I spoke to the specialist nurse. She was very nice she does not think it is anything to worry about as I had numerous scans showing all ok. She said as there is no weakness or aneurysm the headache is either an after effect or hormonal. She said the best thing is to get a new pain 0lan with neurologist. Thanks for advice. Link to comment Share on other sites More sharing options...
Super Mario Posted June 23, 2018 Share Posted June 23, 2018 I hope that your chat has put your mind at rest somewhat. Link to comment Share on other sites More sharing options...
frmertd Posted June 23, 2018 Share Posted June 23, 2018 Charlie, I had some weird scary feelings at 6 weeks too. One night , had a strange headache that woke me up at 3 am!! i raced in, had a negative ct scan and have been fine. 6 weeks is so early!!!! you are still in the "it just happened"phase. Expect all sorts of problems. 6 weeks is so early!! I gave this long anatomic explanation on another post to another poster you should read because you are right there. (Im a doctor by the way). You are so early in your recovery. Unfortunately people will look at you and not understand that. Other people (family,coworkers, etc.) Will expect you to be normal now because you aren't wearing a caste or bandage somewhere, but you are not normal. You will have problems for months. This is completely expected and normal. There are many more articulate people on this site that helped me so much. Dont be afraid to post or talk. I would love to hear about everything you are going through. 6 weeks was a very tough time for me. I had a lot of problems at your stage. Link to comment Share on other sites More sharing options...
Catwoman23 Posted June 24, 2018 Share Posted June 24, 2018 Charlie I saw your post earlier but I was away for the weekend for meditation retreat. Make sure you get plenty of rest, lots of hydration, not much stimuli to the brain, see neuro if you need to. I would go back to the er if you suspect something is wrong such as severe headache, fevers, non stop vomiting etc. The thing with SAH is everyone is different and recover differently. I think you need 3-4 months or more to recover. Too much anxiety is not good but I want you to be mindful about what kind of symptoms to look for if you need to go back to the er. Goodluck. Link to comment Share on other sites More sharing options...
Kiwi Grunter Posted July 17, 2018 Share Posted July 17, 2018 Hi Charlie, I know what you mean by nasty close to actual bleed headaches. I’m 15 months (April ‘17) in after a non aneurysmal CT and MRI cleared bleed . I still occasionally get a serious headache and it is always 36 hours after overdoing it, especially after going to work to sort stuff out. They are becoming less frequent and I am feeling better but it’s an incredibly slow process. If in doubt get it checked it out but I wonder if you’re doing too much. Unfortunately I don’t think you can actually try to get better from an injury like this , you have to relax and let yourself get better and not do too much when you feel well. I’ve been there too many times. Even still a 2 hr car trip as a passenger can leave me with a headache and in need of a hours sleep even though I could drive myself for an hour as far back as September. Good luck, drink plenty of water, don’t let yourself get too hot, relax and switch your eyes and brain off whenever you can. Check out VanessaW’s post Aug 2014 too Grunter in Kiwiland Link to comment Share on other sites More sharing options...
CharlieD Posted July 21, 2018 Author Share Posted July 21, 2018 Just an update on this. My doctor ended up sending me for a CT scan and after a very inexperienced doctor telling me I had a second bleed, the Neuro specialist hospital checked it and said no I hadn't. The young doctor was more traumatised than me in the end which was quite an achievement as I was bordering on hysterical at being told that. Anyway luckily I was seeing my Neuro surgeon a week later who went through every scan with me including the recent one. He gave me reassurance that it all looks really good and he will do an MRA in a year but I am still stuck with daily headaches in the back of my head that make me feel sick at times and the strange turns likes waves. I wonder did others have headaches this regular at 10 weeks ? Link to comment Share on other sites More sharing options...
jess Posted July 21, 2018 Share Posted July 21, 2018 I still get headaches like that and my bleed was 16 years ago. I know it's hard when people tell you not to worry but it looks like they are taking good care of you. Just drink plenty of water rest and relax try not to worry it's still early days for you it will get better xxx Link to comment Share on other sites More sharing options...
Skippy Posted July 22, 2018 Share Posted July 22, 2018 I had headaches for at least a year after - still get them occasionally but usually due to lack of fluid. Link to comment Share on other sites More sharing options...
Catwoman23 Posted July 22, 2018 Share Posted July 22, 2018 I wonder who told you that there was the second bleed? Because radiologist reads it first and then put in the report. I m sure neurologist and neurosurgeon can read too but they also wait till report comes back from radiologist. sorry about that. drink lots of water. Not sure if you are back to work. Take it easy . No stress. Link to comment Share on other sites More sharing options...
Xmartz Posted July 22, 2018 Share Posted July 22, 2018 So true about everyone looking at you like you should be back to your normal just weeks after such an event! Please trust your instincts though. Just three months after my SAH I had a subdue all bleed. Although I had a headache, something about that one just seemed off and I'm so glad I went. Luckily this one was MUCH smaller than my SAH was. Please keep us updated! Mandie Link to comment Share on other sites More sharing options...
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