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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

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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 

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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

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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. 

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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

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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

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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. 

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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

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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. 

 

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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

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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. 

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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.

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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.

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  • 4 weeks later...

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 

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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 ?

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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 

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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.

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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

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