Does your head ever feel 'normal ' following NASAH

[Gillian99]

Hi, I had my bleed on 6th November last year. Went back to work in May but I've been signed off again as found it was just too much for me to cope with; noise, concentrating, lights, thinking etc.

 

Have been very up and down (mostly down) since November but have had the odd day where I've felt quite good. My question is really whether or not my head will ever feel back to normal?

 

Currently had a rubbish two weeks and I'm so fed up of feeling unwell! Still suffering from headaches and feelings of pressure ( bit like someone's got my head in a vice grip) amongst other things such as ongoing fatigue, nausea, light headed.

 

Any advice anyone can give would be most appreciated. I've found it so reassuring reading the posts on this sight, it's so good to know that your not alone!

[ClareM]

Hi Gillian

 

When I first came on this site I wondered the same thing, not just about my head but about everything. I am not as far down the line as you but have come to the conclusion that 'normal' is now 'new normal' and different.

 

My bleed was February, I started phasing back to work at the end of May and am still phasing.......  Like you I have good and bad days, the good days are getting more frequent but that makes the bad days even worse.

What type of work do you do and do you have family support?

 

Have you spoken to your GP regarding how you are feeling? I'm not sure if our heads will ever feel the same again. They have undergone a massive trauma which must take a lot to recover from. I would love to have a straw poll of everyone having an NASAH and know how many actually feel as they did before the event.

 

My only advice to you is to seek help. Other people on this site have found Headway helpful, or nurse specialists at the Neuro unit you were treated at. Don't give up, there are always all of us on this site that will reassure you that you are not alone!

 

Clare xx

[Gillian99]

Thanks Clare. Yes I have good support from family and friends. This last bad spell has really hit me quite hard, probably because it's made me realise that it may always be like this and sometimes it just feels like there's no escape from the after effects of this bleed.

 

It's the not knowing that I'm finding hard and I don't really know what to do with myself to make things better. My GP has referred me back to neurology, so just waiting on an appointment. I know I am very lucky to be here and this forum has really helped.

[subzero]

Hello Gillian

 

A warm welcome to BTG- one thing is sure-you have come to a great place to get support following your SAH- As you find posts which are similar to your own experience- you will be encouraged in knowing that you are not alone-and that others who have progressed with their SAH journey of recovery can give you hope for the future.

 

You already have discovered that the initial desire to get back to full-time work is tempered with the realisation that how quickly you want to return and how quickly your damaged brain wants to return -are two very different challenges-

Take care and be patient.

 

Perhaps you could mention more about the circumstances leading up to your SAH and your hospital care prior to discharge-

 

You will get comments from other SAH survivors to help you-

 

My view point is as a Carer- and I wish you strength and patience for your journey to better health

 

Subs

[Winb143]

Hi Gillian,

 

I thought I'd never get better, but we cannot let it beat us xx

 

After my hydrocephalus was noted, a shunt was fitted and the I woke up,  I still get weepy, but to be honest I was like that before my SAH. shhh

 

I got a few dizzy spells, like I have to get up slower I cannot rush up anymore and all is done at a more leisurely pace.

 

Try not to stress yourself out, when you feel stressed think of happy times or sing (That's what I do ) Drives my family potty ha xx

 

Try and be Happy when possible as we are the ones who made it xx

 

Good  luck and welcome to BTG xx

 

Win x You will get good days and some bad but eventually the good outweigh the bad now smile if possible xx Early Days yet xx

[Gillian99]

Hi folks, wee bit more info as requested. My bleed was a sudden explosion (best way I can describe it) at the base of my skull, the pain slowly travelled from there to my forehead within about half an hour. Stupidly I did nothing about it and eventually went to Dr six days later as realised headache wasn't shifting. Sent for CT scan which was negative, so had lumbar puncture which confirmed bleed.

 

Transferred to high dependency for five days then on ward for five days. Also had CT Angio and an Angiogram both negative and was advised it was a non aneurysmal bleed which had stopped itself. Was discharged with sick line for six weeks and advised to expect to be tired and have headaches. That was pretty much it!

I have spoken to the neuro nurse a few times and she has been helpful and reassuring. I think I just assumed I would be back to 'normal' in six weeks, never for a minute did I think I would still have so many issues and still be suffering such debilitating headaches this far down the line.

Thanks for your replies.

Gillian xx

[Skippy]

Hi Gillian

 

The problem with being told that in six weeks everything will be "normal", is that you believe what the so called experts tell you.

 

It took me a good year to stop needing to sleep during the day and for the pressure and headaches to subside.  The most important thing to remember is that we all recover at different rates and what is deemed normal for one person might not be what you consider to be so.  

 

I'm nearly 9 years post SAH and my family consider me to be "back to normal" as my memory is as good as theirs - what they fail to realise is that I know my memory is not as good as it was before.  Because I am working 35 hours a week, they think that I'm all fixed but I still need to have a cat nap when I get home - whereas I never used to - but to them I'm "normal" because I'm back at work.

 

We're all individuals so "normal" isn't a condusive outlook - being comfortable with who you now are and knowing your limitations is far more important than aiming for "normal".

 

Please seek professional advice regarding the headaches and fatigue - but rest, drinking plenty of water and trying not to get too stressed (i know that's easier said than done) will all help.

[Gillian99]

Thanks Skippy. Been drinking lots of water and taking it really easy. I am waiting for a neurology appointment, which hopefully won't be too long. I know I need to take things much slower than before but I was the queen of multitasking, so this new me is taking a bit of getting used to!

[Skippy]

I know the feeling well Gillian - I did everything at a million miles an hour and many things at once.  I've accepted that now I can only move at a hundred miles an hour and few things at once   Give yourself time - and please do not feel guilty or beat yourself up because you cannot do what you used to be able to.

[Winb143]

I agree with Sami also xx

 

If you are getting bad heads it's best to talk to Doc so it can go on records, at least.

 

Plus it will put your mind at ease and stop you stressing out.

 

Good Luck and lets know how you get on xx

 

Win xx Talk to Family also on how you feel xx

[janey]

Hi Gillian,

 

Welcome to BTG. Sorry to hear about your 'brain explosion' but you're in good company here as we've all been through the same thing. After such a major trauma, it does seem rather optimistic for the hospital to tell you that you'd be off work for only 6 weeks and I can understand how you are maybe feeling now that you're not doing as well as you should.

 

The big point to make here is that everyone recovers at their own pace and you need to give your body time to repair itself. Don't let anyone (including yourself!) rush you.

 

I had my SAH in February and I've been so lucky in that I've made a good recovery, although still get the dreaded fatigue and headaches. However I still have days when I wonder if I will ever get back to 'normal' and I think Clare made a very good point that we should let ourselves accept a 'new normal'.

 

That's not to say that we should stop striving to improve but we should give ourselves a pat on the back for what we've been able to do, rather than beat ourselves up over what we can't. Progress can seem very slow but if you look back to how you were a few months ago, I'm sure you'll see some improvements.

 

I'm sure you'll get lots of help and encouragement on this site - it's been a godsend to so many of us and it's great to be able to talk to others who totally understand what we're going through because they've been there too. So welcome to the site and good luck with your recovery.

 

Jane xx

[Carolynusa]

Hi Gillian.  I'm Carolyn.  Perfect timing for me as I have been talking to my surgeon (and anybody else that will listen to me) about how long it will be before I feel better.  I had my Sah June of last year.  It was a bleed so I have clips, coils, shunt, etc.  The whole enchilada!  (sorry - USA saying lol)

 

I have slowly felt better in some areas for instance I can now read as I couldn't follow books for several months after sah.  I can talk, talk, talk and make better sense than before.  lol.

My memory for old things (like Win - haha) is remarkable.  Not so much the new things.

 

Anyway...I had an angiogram last week and my doctor was so excited.  He says it usually takes about 2 years before you start feeling comfortable with yourself and you will not be so upset about your head and some of the symptoms and irritations you feel now.  I believe him as he has never let me down yet.

 

Keep taking one step at a time.  Try not to get angry or depressed as, day by day you will begin to feel better.  Any symptoms that frighten you should be taken to doctor.  Keep posting here.  Try not to be scared.

Lots of people here and we have made it through.  

 

Best of luck to you!  Keep your chin up and hope to see you continue to post here.  We all care for you.

Love, Carolyn

[Gillian99]

Thanks Jane and Carolyn for your kind words. Definitely feeling better today, so hopefully entering an improved phase. !

Thanks to everyone for replying, your support and advice is very much appreciated.

Gillian xx

[kpaggett]

You do find a new way and/or things get back to normal.  Either way, both are just as good as the other.  I still have improvements after 4 years, so the 6 week thing is really strange to me.  It just goes to show you that you should never speculate on what you haven't researched or experienced.  Recovery time is so poorly studied in our population AND everyone has such a different experience since every bleed happens in slightly different areas of the brain.

 

~Kris

[codewarrior_777]

Hello Gillian,

 

I too had a bleed at the base of my brain. A NASAH, so no coils or clips. 

 

I did have headaches and pain for the first few months, but almost 4 months on I don't feel anything anymore. Except my shunt. I feel that. I feel blessed that I don't, but it does seem that many people here are experiencing headaches years after the episode so I don't think it is uncommon. 

 

If you feel the need to rest, then allow yourself to. 

 

I wish you well and maybe you should speak with your docs about the headaches. Maybe they can prescribe some medication?

[Alison2015]

Hi Gillian, 

 

I'm almost 6 months into my recovery. I had a NASAH on March 28, 2015. 

I was told I would be back to normal after 6 weeks. 

They were partially right. 

The first 4 weeks were awful but then I turned a corner and returned to work 6 weeks post bleed.

 

I felt good. I take micro breaks away from the computer and turned off the lights above me. 

But I know what you mean, we don't quite feel back to normal. 

Random headaches, fogginess and inability to concentrate still occur for me.  

I don't know if this is my new normal or if over more time, things will get even better. 

I just take it one day at a time, honour my body and if I need to, I go home early from work. 

I'm not sure we'll ever know what the future will hold, it's not like we knew before our bleeds

 

Alison

[Ponigirl]

I too had NASAH and now my life is different. I describe it as before and after. I explain it as my brain just exploded. This is my "new" normal. I would suggest getting a neuro-physc evaluation (sorry lost my ability to spell). It helped me and it was not suggested by y neurosurgeron until I kept complaining about my memory and just not feeling right.

This is the BEST sight for ideas, help and support!!! You can ask anything and usually someone here has been through it or has suggestions. 

Have you been to see your neuro yet? 

I wish you the best of luck.

[Gemma B-B]

Dear Gillian,

 

I too had a NASAH in January this year. You have my sympathy with the return to work - it is very tough! I was a secondary school teacher prior to my SAH and have started to make my return to work this September. I am currently undergoing a rehab programme and am going into work once a week to undertake different tasks with an occupational therapist, which has been useful.

 

I do still get headaches - especially if I have overdone it, but I am trying to learn the right amount of activity to minimise them. Hopefully seeing your neuro-surgeon will help give you some answers. If they could refer you onto some form of rehab that might be useful to aid with the return to work? Mine has definitely helped me with things such as the dealing with noise/stimulation and my new inability to multi-task.

 

Good luck with everything and take care.

Gemma

[Gillian99]

Hi, everyone. Thanks for sharing your experiences. I'm still waiting for hospital appointment, my GP is chasing it up. However, I have had a good couple of weeks and definitely feeling better. I'm going back to work mid October on a phased return, and feeling pretty positive about it. Still get really tired but head's not been as sore. My GP prescribed beta blockers which really seem to have helped.

Thanks again for all your responses, they've really helped.