Jump to content

NASAH What's Normal 1 Year On?


Recommended Posts

Hi this is my first post. I suffered a NASAH on 31/10/15 so have reached my "Anniversary".

 

I find that most people seem to know so little about this. Some days I feel great and people say I am doing so well but sometimes I feel tired, sometimes a bit light headed, some times a sore head at the back of my head and sometimes sleep very badly.

 

I don't know if this is normal and related to a the NASAH or just normal life.  I used to work about a 45 hour week with 2 additional hours commuting each day but lost my job and now work from home and feel comfortable doing about 20 -25 hours per week.  

 

Is this a normal post NASAH experience or have I just got lazy?  Any comments or advice greatly appreciated.

  • Like 2
Link to comment
Share on other sites

Hi Graham,

 

Welcome to BTG!  What you describe is well within the experiences of a SAH. 

 

What you will learn is that your body has a way of telling you when it has had enough, at whatever time of day that may be.  Listen to it.  Your body has been through a terrible experience and you should never underestimate the severity of the battle it, and you, have been through.  The degree of recovery varies from person to person but it is often a long road to full recovery - or as near as you can get to it.  The latter may become your new 'normal.'

 

Learn to do what you can, albeit more slowly and differently,  depending on how you feel.  We can't answer medical questions because we are not doctors, so if you need that go back to the people who treated you.

 

However, you will find plenty of support here and people who have lived through the same experience, can relate to you their own experiences and how it affected them.  You will see that you are not alone.  Have a look through the various threads on here and you will see a vast array of topics unavailable elsewhere. 

 

Any time you want help or support we are here, just get on here and say what you want - there is usually someone who knows something - or in the words of a famous advert 'knows a man who can.'

 

As for your work, I would say so early in your recovery that 20 -25 hours is plenty and judging by others experience is very good indeed.  Just don't overdo it or your body will soon tell you it isn't on!

 

Once again, welcome to the group and let us know how you get on.

 

Good luck!

 

Macca

  • Like 4
Link to comment
Share on other sites

Hi Graham,

 

Welcome to BTG.

 

I had my SAH in 2009 and had complications ie Ventriculitis, UTI and Sepsis.  This site helped my Daughter and also has in turn helped me and any worries I had.

 

I was told I'd never walk again but up to date 100/150 yards before back goes.  I know I am getting well as not so much sympathy from hubs lol.

 

You keep doing what you feel comfortable with,  and I wish you all the best in your recovery

Win x

  • Like 1
Link to comment
Share on other sites

Hi Graham, 

 

Welcome to BTG. I am only a little ahead of you having my NASAH Jan 2015. What you describe is really quite normal, and bearing in mind that we are different, the fact you are working 20 to 25 hours a week is pretty good going. As Macca said you are early in your recovery,

 

I was advised by my OT not to try my return to work till 12 months after my NASAH, to maximise my chances of success, and the hours I am doing are far less then what you are achieving. So don't be too hard on yourself, your NASAH was a traumatic event for your brain, and neuro recovery takes TIME. Recovery is on a completely different timescale to almost anything else that could have happened to you. 

 

So as I have been told (correctly) repeatedly by folks here, patience is the key. The other thing that is so important in working with fatigue, is finding the right balance in how much you attempt. If you do too much you will know about it, knowing to listen to the signs your body gives and stop before you do too much.

 

The analogy that someone told me was that if you represent the energy we have do things both cognitive and physical as a battery, then post SAH, everything we do takes more energy to do and it takes longer to recharge that battery after use. 

 

Good luck, give it time, 

 

Regards

 

greg.

 

 

  • Like 5
Link to comment
Share on other sites

Greg you are so right,

 

This is a good visual of the battery analogy and it was shared by Brain Injury Awareness the other day on their FB page. Credit and visual rights for the picture is with them but I think it's helpful to explain to others and a battery pack is often used to explain the fatigue.

 

Graham, it's a big change for you but remember you aren't trying to prove what you can't do more it is you may have to work harder to do it now or it just takes longer so uses far more energy  Hopefully no one is trying to trip you up only to support that this where you are for now. 

 

I do 18 hours a week and it's taken me this long and a big effort to get to that...we all find our own rhythm and pace. 

IMG_1195.PNG

  • Like 9
Link to comment
Share on other sites

The battery analogy is a very good one .. I only managed 5 hours per day, in a paid working capacity post SAH... plus fitting in travelling to and from and housework/cooking, before and after ... and I know that I pushed myself to the absolute limit and I couldn't always remember the drive home ... which isn't good! x

  • Like 3
Link to comment
Share on other sites

Hi Graham,

 

I experienced my NASAH in October of 2015.  So am just over my first year anniversary.  I think it differs for everyone, but there are certainly commonalities.  Initial fatigue and anxiety.  Some fear at first.  I was actually on conference calls working while in the hospital with the EVD in my head.  Not smart, but I had nothing else to do.  Once out, fatigue was heavy for a while.  I also developed a nice case of the Shingles on my butt, so that slowed me down too. 

 

Now with a year gone by, the most residual effects are short-term memory loss, occasional sadness, and periodic sharp pains in my head that only last for a few seconds, but always concern me.  They started out just under the eyebrow, but now can happen in other parts.  I just keep telling myself it's normal pains, but for the few seconds they occur, they can be scary.

 

Over all I am back to my normal, or as we call it "new normal" self.  I don't think the experience will ever leave me.  I will always be different, in both good and bad ways.  But one good thing that came of it is my friendships I have on the BTG. 

 

I wish you continued improvements and acceptance of the new normal for you.

 

Chris

  • Like 3
Link to comment
Share on other sites

Hi Graham,

i have to say it has been good reading your post and the responses. I had my Non Aneurysm haemorrhage on the 9/9/2015 and although I am managing very well I have this niggling doubt of 'am I just being lazy'? I know I try very hard to do things in a day but then feel tired. 

 

Like you and others there are odd pains in the back of the head, forgetfulness and a terrible sleep pattern. I know I have improved greatly but wonder if I am 'normal'. 

 

I am am grateful to hear other stories of those just over the one year mark to see that we are all showing more or less the same issues.  I feel more at peace. Not a lot of information has been given to me by my hospital, most has been gleaned from this website. It has been a great help to read other people's stories and know I am not the only one who feels this way.

 

I hope you continue with recovery, but if the little disturbances are a vast improvement on the year previous I think you are doing marvellous.

 

Look after yourself,

Irene

 

 

 

 

  • Like 5
Link to comment
Share on other sites

Hi Graham 

 

I had an NASAH, with no complications, just over 10 months ago, so I'm just a little behind you. I still experience ongoing symptoms - fatigue, headaches, neck pain, sensitivity to noise and light, difficulty sleeping. One of my most annoying symptoms, although it sounds quite innocuous, is the persistent fuzzy feeling in the back of my head. I now really appreciate the times when I do have a completely clear head.

 

I've found the last 5 months much harder than the first 5 months. I experienced a lot of survivor's euphoria in the early months and was feeling relatively well by 5 months. I realize now this was because I was actively avoiding all the situations that exacerbated my symptoms and was yet to get back to work and 'real' life.

 

My job requires quite a lot of mental focus, and getting back to work has been a struggle - I still only manage 15 hours a week spread over a Monday, Wednesday and Friday.

 

I know it is easy to worry about being lazy, or being perceived as lazy. I have an agreed flexible late start at work, but after so many months was feeling a bit self conscious still coming in so late. It doesn't actually matter when I work my 5 hours, and no-one had complained, but I still started trying to get up earlier to get in for a more 'normal' time. It proved a bit of a disaster and I felt so much worse - so I quickly reverted back to my late starts and have stopped worrying what others might think.

 

You sound like you are doing ok - stick with what works for you for now, and don't entertain thoughts about whether you are lazy or not. We do still need to have some kind of life outside of work!

  • Like 7
Link to comment
Share on other sites

The best advice I had was there is no point putting all your energy into one place, if you do that you may find there is no space for all the other things we need and like to do and balance is I,portant in life and living. Susan it's good you are finding that. Pacing your levels is important but done across many things not just one thing to the exclusion of others. That builds stamina too.  

 

Finding out what is your new tipping points, your new tolerance and capacity, well it takes time and worry not about others opinions whilst you explore that. Opinions are like armpits, everyone has them, but let's just say some stink the place up ? Only you can do what you do, do that and hold your head high, most people are rooting  for you to be ok and the ones that aren't, well they are best left to their own devices. 

  • Like 7
Link to comment
Share on other sites

Susan, thanks for this, our situations seem very similar. It's particularly interesting you mention a fuzziness at the back of your head. I get that and never had it before my NASAH, it's not exactly a sore head just a weird "something's not right" feeling. Also very interesting what you say about the first five months feeling easier, I can echo that.

 

I lost my job three months after the NASAH and was able to do very little except relax, play golf and potter about. I have started working for myself and in the last two months I have had a steady stream of work, and despite only working for about 20 hours per week I definitely am aware of more symptoms now than I was aware of a few months ago. Which I guess confirm something has changed, or not recovered yet.

 

But isn't it helpful just to hear someone else's experience and say "me too!" Hey ho, we have a lot to be thankful for.... onwards and upwards.

  • Like 6
Link to comment
Share on other sites

Irene, it's interesting how so many of us share the same experiences. I could put it like this...."I'm fine" / "some things  feel different" / "I don't think anything is getting better" / " I'm fine" / "I'm a fraud"......and as I learn about others experience I'm shouting....I'm authentic!

 

its good to have the BTG community!

  • Like 3
Link to comment
Share on other sites

I think part of the problem is that NASAHers, especially PMSAHers, can feel like they should be doing much better than they actually are because there is so much medical literature out there regarding a PMSAH as a 'benign' haemorrhage. It therefore becomes even more important to have your experience validated by someone else.

  • Like 4
Link to comment
Share on other sites

Susan, you are so right about the Perimesencephalic haemorrhage.  The consultant writes up to my doctor that my neckache could be due to degeneration of the neck.  Never had neck pain before.  My headaches could be related to anxiety over me having to have further MRI scans due to an area  highlighted in my original scans, nothing to do with the bleed.  I asked him if he could name what was wrong with it and did it have a name, he said no, so I said well I am not worried.  He sent in his letters I was anxious.

 

 The other thing was my sleep pattern, he put that down to having an hours sleep during the day, when I would drop off around 4pm.  I really don't like to say anything, although he never asks how I am other that first greeting, and of course I am fine.  The only thing he said was he can't say if the pain in the back of the head is anything to do with the bleed, and if it is how long it will last.  He only mention that I should be aware of feeling lethargic, so I am conscious of that.  Not complaining, I am here and would rather be the way I am, just think no one is listening.

 

Tomorrow I go for my next MRI and see the consultant about 3 weeks after that, so that may be the last visit if the area has remained the same.  That will be a nice feeling.

 

It has been lovely seeing we are all experiencing the same things.  We have each other for support.

Must be off my laptop battery is close to shutting me down!

 

Good night all,

Irene 

  • Like 4
Link to comment
Share on other sites

Hi,  in my very limited experience the medical community have not demonstrated great understanding of what it is like to experience a NASAH.  For example, on my discharge from hospital I was obliged to visit my GP who decided I looked quite well and signed me off work for two weeks! Very many months later I am not fully functioning in work mode.  Meeting people on the forum who have experienced a NASAH has been a breath of fresh air for me. 

 

Regarding the wider views of the medical profession I have not read widely but I did find the attached article which did resonate with my experience.  You may have seen this before but I have uploaded it in case it is new and helpful to someone.

 

http://jnnp.bmj.com/content/69/1/127.full

 

 

Link to comment
Share on other sites

  • 3 weeks later...
On 11/18/2016 at 15:23, Graham Oxburgh said:

Hi,  in my very limited experience the medical community have not demonstrated great understanding of what it is like to experience a NASAH.  For example, on my discharge from hospital I was obliged to visit my GP who decided I looked quite well and signed me off work for two weeks! Very many months later I am not fully functioning in work mode.  Meeting people on the forum who have experienced a NASAH has been a breath of fresh air for me. 

 

Regarding the wider views of the medical profession I have not read widely but I did find the attached article which did resonate with my experience.  You may have seen this before but I have uploaded it in case it is new and helpful to someone.

 

http://jnnp.bmj.com/content/69/1/127.full

 

 

Thanks Graham.

 

Wendy.

Link to comment
Share on other sites

 Hope all is well with you Graham, and you are coming on well.

 

If you ever get on a downer pop into Green room for a chat and give vent, You also Wendy.

 

Keep Bright and chirpy it helps 

 

Win xxxx Green Room remember it !!  My Orders !! Over and Out xx

  • Like 1
Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...