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Still get weird painful heads and tiredness


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Hi All,

I know I haven't been here in a while. The last time was about Sept 2010 when I was asking advice regarding a compromise agreement with me employers. I'm glad to say I took the offer and am so pleased I did. I am now 20 mths post SAH, coiled (grade 2) which in my opinion is a mild anuerysm. My problem now is I am still getting bad heads, really weird feelings in there too, like *****ling, stabbing and head has started to feel itchy. I have a new GP who is great, but he just adjusts my painkillers. I also get regular bouts of tiredness, where I feel absolutely drained. My husband understands how I feel but my family don't see why I still get tired. They think I'm repaired so should be fully recovered. I've tried explaining to them, but it's like banging my head against a brick wall. Can someone please tell me they feel the same, I'm sure my GP must be sick of me by now. Also has anyone else got this problem with their family.

Thanks all for listening.

Jan :-D

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Hi Jan! I'm early days compared to you but I'm sure you will hear from others soon who can relate to what you are saying.

Were you feeling better before all this started up again or had it continued all the way through? Wondering if it's the meds.

Many members speak of fatigue but it seems to be a friend forever, not something that goes away for awhile and then returns later. More like a few days or weeks of relief and then bang, it comes back. That's my perspective from what I've read, not so much my experience. I don't get long relief periods yet because I'm still early in recovery.

Sandi K.

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Hi Sandi,

Thanks for your reply,yes I seem to have short periods of energy, but longer periods of fatigue. I know I should rest more, but I won't give in to having a rest every day. Don't want to get into a habit of having a lie down in the afternoons (silly I know). Hopefully I will get some replies saying this is normal. If anything can be normal again :lol:

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Jan I am 13 months post clipping & still get headaches although the itchiness & weird head feelings have virtually gone for me. I have done more things recently without feeling exhausted but then I will hit a wall of tiredness which tells me I have done too much & i jsut have to rest. I really do think our brains wo SAH work so much harder post SAH so some situations tire me more than others, I find noise a big one or busy environments so limit my time in them accordingly. Just the sheer effort of concentrating for long periods wear me out too. I am sure my family think 'I'm fixed' too but I know& I am not & still need to rest. Hope it helps to know you're not alone?

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Hi Jan

I was told those weird feelings were things healing - dont know if thats right or not:roll:

You are not alone in the bouts of energy followed bytiredness/fatigue, yep I have that husband who understands & people whojust don’t I was going to suggest talking to them but you’ve said you’ve donethat maybe have them look at this site.

All I can say is keep telling them don’t be put off bytheir lack of understanding, if you don’t explain to them then there nevergoing to know (take that from someone who knows)

My friend put this on her FB wall I thought it so apt: YOU DON'T LOOK SICK!!

No, I don't. It's hard to explain to someone when theyhave no clue. Its a daily struggle feeling sick on the inside while you lookfine on the outside.

Take care

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Hi Bagpuss & Louise, thanks for your support. I've put a couple of links on my Facebook. Hopefully some family will read them. My friends seem to understand more. The problem is I don't seem to have improved in about 6 months or more....

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Hi Jan,

Rest when needed...eat chocs when needed, Go shopping when needed...*** it spoil yourself rotten...oops sorry about language !!

I still get headaches also....I get the miserys...join the club and try not to worry and sing a song..cheer yourself up Jan.

Remember we are still here !! now smile xx

Regards

WinB143 x

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Hi Jan

Know what you mean with family and friends. Im always telling my family i dont feel great, when tey assume ican do everything. This is the one thing that really annoys me, the fact i look ok, but feel like inside. My daughter said the other day "i think your faking it" in a joke way but it really upsets me, as i would do anything to feel how i used to. Im only 13 months on and can feel ok allday some days but then all of a sudden terrible again.

Take care

Traci S xx

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hi jan,

I can 100% relate to what you are saying. I often feel that this would be so much easier if I had some kind of deficit, even something simple like a part of body didn't quite function properly but it was obvious to see. People would view me completely differently, the assumption is always that I had 'an accident' and was then 'lucky' and made a full recovery. As I go through this and realise how much the brain does, in the sense of doing everything, then I want to scream as it now seems so obvious to me that I am going to be totally messed up in soooo many ways after a brain injury but no one else sees it. Interestingly I had some acupuncture last week and the Chinese guy was saying that if you had an injury like a SAH in China it would be immediately understood by yourself and everyone else that you will be a real mess for a long time as your 'inner balance' will have been completely thrown off. Regardless of what you believe there is no question that it effects you in many ways that we don't understand regardless of your exterior appearance. My family are understanding slowly but its taken two years for them to begin to understand that this isn't a problem that can be dealt with with normal coping mechanisms that we apply in life. Show your family this site as this may help them realise that this thing effects people of all ages and walks of life in similar ways. Best of luck! xxx

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Neil have you thought of getting in touch with headway? They are a charity who help people with all sorts of brain injuries but suprisingly to me the common factors are much more than the differnces. It helped a great deal to understand' my brain injury, where it was & how it affected me in my day to day life. I did think \i didntneed any help as my injury was mainly caused by the surgery to clip my anni & the vasospasms during it (unruptured anni)so how could I be the same as someone who came off their bike & hit their head. I cancelled the first appointment at least 3 times before realising I wasn't coping with the new me & it's been fantastic to talk to other people face to face who don;t need the tiredness of wolly headed feeling explained as they know already!

I also asked to be referred to the neuro pysch for counselling but instead what I got was CBT, it did help but I had survived against huge odds & that was the most difficult thing to deal with (I was the very small % that walk in to the hospital with an anni, even more so when I was undiagnosed for 6 weeks too)

hope some of the waffle helps, am sleepy today & not making much sense (excuse typos too:oops:)

xxx

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I was just going to sugges Headway, because you dont really want

I often feel that this would be so much easier if I had some kind of deficit

My inner balance has never been restored I've just started afresh I guess....

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Oh gosh I can SO relate to this! I'm nearly 18 months post-op and I get some very bad heads/bouts of fatigue. I just posted about it in the Green room - check it out.... Keep smiling :)

Edited to add: to explain how it feels for us, check out the Spoon Theory here.

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