Advice post brain heammorage

[Lisamj]

Hi there just hoping to find some support and answers I guess. 1st June last year I suffered a brain heammorage due to a aneurysm. I was one of the lucky few to survive and I thank god everyday for that. However despite the horrible disabilities we have following this injury I am now desperate to find some answers. Following the coiling which was successful,, I have suffered with nasty stabbing pains where the coils are. I have asked my neuro about these on three occasions but he never answered me as to what is causing them. Today they were so severe I ended up going to a&e where they were deciding on blood tests and another scan. After some discussion they decided not to this due to the radiation exposure as I had a clear MRI result in November. They were at a loss about these pains and suggested I see a neurologist to discuss future plans. The problem is that despite my clear scan last year the stabbing pains have been more frequent the past few days/weeks. I just need to know if it's normal, side effect of the metal coils on the brain, nerve damage or something else as it's really scaring me so much that o keep thinking is it bout to rupture again.... panic setting in and I just want some help right now x

[moo196]

Hi,

I'm not medically qualified nor have I suffered exactly the same as you,

However, I had a few " scares", including two further trips to a&e without any more investigating. I was reassured then that my pains were connected to my blood clot, but that they should subside. Luckily the reassurance was most helpful and I was able to say that to myself over the following weeks and pain settled.

If you are worried still could call nhs helpline ? Then try perhaps to occupy your time with some nice thoughts/little plans ☺

Good luck

[cat3]

Lisa, can you tell us where in your brain the bleed occured ? Cat x

[Lisamj in reply to cat3]

Hi cat, I don't know the medical term but it was on the right top side which also affected my optical nerve and caused a Palsy of my right eye xx

[cat3 in reply to Lisamj]

You need to see your GP, and if he/she can't help, get a referral back to the neurologist. The symptoms sound remarkably like neuralgia, which I know from personal experience can be breathtaking ; I used to virtually jump off my seat with the pains.

It's usually a trapped or inflamed nerve at the root of the pain which transmits shooting sharp pains (as you describe) to other areas.

Get yourself back to the doctor Lisa and insist on a proper diagnosis (neuralgia can be diagnosed with a nerve block injection pretty easily) and get the appropriate treatment.

Whatever is causing the pains, you can be sure your brain will still be sensitive after only 6 months ; I had a dreadful permanent headache after coiling, and still have them fairly frequently five years on. But with pain so severe as those you're having, you might need to stand your ground in getting it sorted.

You might want to phone Headway to see if they have any better ideas. The helpline no. is 0808 800 2244 Free calls--office hours.

Best wishes for getting help................... Cat x

[Lisamj in reply to cat3]

Many thanks for your advice lovely, I'm seeing my gp this week. X

[cat3 in reply to Lisamj]

xx

[Lisamj in reply to cat3]

Many thanks for your help and advice lovely, I feel so much better just knowing I have people who truly understand how it feels. People are so quick to say oh aren't you looking well!!!! When inside you feel so awful xxx

[cat3 in reply to Lisamj]

That's something which used to rankle with me when I was having a rough day. But then it occured to me that I'd be pretty offended if I was having a good day and someone told me I looked awful !! xx

[Lisamj in reply to cat3]

Haha yep guess you're right love, just get frustrated when I feel so exhausted and put a smile on my face so people think I'm fine I guess

[Elenor3]

Hi,

You made a good decision going back tomA&e. I have severe stabbing pains here and there which make me think of going to A&E , but I haven't done yet. I was told that this was 'normal' following severe head injury. It may be different for you, so always go to a&e if you're concerned. I've been offered a drug called gabapentin, but don't wish to start taking anything long term, rather hoping it'll even out. I wonder if the pains are worse the further from the event you get? I remember being in excruciating pain for a long time following my accident, and the stabbing pains were for a while on and off all day. It's now over a year for me, so they come less frequently - and I wondering if that's why infindnthem all the more upsetting or shocking? In other words, am I taking much more notice and becoming much more upset by them becusse they are more isolate? If I have to stopmandnsit down because of a pain, I count to see how long it lasts - this helps take my mind off the pain itself,mother incarryn on doing what I was doing. But I always tell someone (whoever I am with) when I get a really bad one) . Just in case I should collapse or anything. But that hasn't happened yet, so I tend to think the neurologist must be right....I'm just going to have these pains for life I presume? Hope that helps......it seems to come up a lot on this forum, so it's obviously a concern to many TBI sufferers. Hoping its temporary for you and that like mine it becomes less frequent. x

[Lisamj in reply to Elenor3]

Many thanks for your advice. I think we sometimes feel so alone. I'm finding that mine are more often at the moment but wondered if it's because like you said I may just notice them more now. It's just horrible when your trying to get on with life but in the back of your mind your waiting for the next pain to hit, I'm hoping that when I get to see the neurologist he will say the same thing that's it's normal and if it's long term then at least it won't scare me so much. Xxx