Fatigue & tiredness 1 year after SAH

[Clare1]

Hi,

I am new to the site.  Had a SAH a year ago, had coil placed, 4 months off work and have now been back at full time work 8 months.  Have always suffered from fatigue and have to usually lie down for a couple of hours when I get home from work just to be able to get on with my evening chores at home.  

 

Headaches have never really been an issue until a couple of months ago.  I am finding that if I get in any type of even slightly stressful situation, my head becomes foggy and feels like there is pressure inside.  

 

I had a brain scan 4 months ago and my consultant is happy with my recovery.  Does anyone else get these “pressure” headaches and if so, do you have any tips on how to relief them?  Thank you.

[Winb143]

Welcome Clare,

 

Yes Clare I do,   especially when weather is stormy or overcast.  Think we call them barometer heads xxxx 

 

I had SAH and a shunt also and I cannot take others problems like before SAH,  so I have asked Family to talk happy talk only and it really is hard for them lol.

 

You will get used to the heavy head when weather changes but if it gets too bad always see Doc.

 

You went to work and I went back to bed, so it is part and parcel of our SAH,  but we are survivors always remember that. xx 

 

Sing, smile and keep happy when possible.  Never listen to doom and gloom talk as it brings you down I have found.

 

Keep drinking water as I was told when I first came on here xx  Also my Surgeon said keep away from stress xx 

 

Keep well and later I will give you all a song lol j/k  xxxx as my singing is stressful lol 

Regards

 

Winb143 xxxx Think happy thoughts when possible xxx

 

 

 

 

[weedrea]

My recovery sounds a lot like yours. I'm coming up in my 3 year anniversary. It took me well over a year to stop needing a snooze after work. In fact my husband still sends me to bed for a nap when I get grumpy... Makes me feel like a toddler!

 

Also headaches for me are a definite sign of doing too much or being stressed. Drinking enough, sleeping and getting out for a short walk are what I usually do when they strike. I have to go away with work a lot and the travel/early starts are a sure fire way of causing headaches for me.

 

I'm fortunate that I work at home and so I have the luxury of going and sitting outside for 5 and getting away from things that way. What about maybe getting up and making cups of tea, or finding an excuse to go for a walk in the office to speak to someone. Lots of breaks, give your brain time to relax!

[Clare1]

Thank you for taking the time to reply to me.  Your comments have really spurred me on.  Sometimes I get really down about being 47 but feeling like I’m 87.  Because I look normal and thankfully suffered with no residual damage, I feel that everyone in my life assumes I’m back to my old self.  For most of the time, I am but when fatigue or head fog strikes, I just want time out and be left to rest.

 

I have to keep reminding people that I have suffered a major incident and I’m not always feeling tickety boo!  Now that I’ve found this site I will come and talk to other people in the same boat who will have more of an insight into the aftermath issues of a SAH.  Thanks again.

[Daffodil]

Hey Clare

I think what everyone tiptoes around a little is the fact that whilst we survived a life threatening event it cannot have failed to have caused lasting damage. You cannot get a foreign object, in our case blood on the surface of the brain, and not have damage, equally the same can be said of surgery, it leaves scar tissue and that means we have to allow and consider that. 

 

I imagine that an injury to the brain is like any to any limb, it’s not as resilient and elastic afterwards in that specific action as it was previously And for us that manifests as brain fogs, dizziness, word loss, the list is long and as individual as a bleed but as in  many cases we can look as we did before especially once months and years have passed then people don’t know and if you are anything like me your ego wants to say “ I’m fine, I can still do all of this” 

 

My answer was to educate people. Explained why i still need breaks, ( still do) get tired, feel over stimulated and guess I’m saying is don’t shy away from saying  what you need to continue to heal which as weedra says is plenty of pauses and breaks in the day.

 

The thing is that if you do this now it will pay you dividends in the long run as then you adapt to your new cognitive energy and capacity levels. Build it up slowly , like training for any sport , I know that has made a huge difference to me in terms of what I could do in first year compared to where I am now. It’s  not as it was but nothing ever is but my dips are less and also less scary when they do come.

 

If you have a stressful moment you have to over compensate in rest terms, for instance I have just  had a family bereavement and so have had to drop back lots of my activity including coming on here to make allowance for the impact of the emotional hit on my damaged neurons, even so it takes a toll . 

 

My mantra as ever is be kind to your self. You’re here after an event that is often fatal  so take the time to find what works to bring you balance now in this moment , it’s probably not what you asked of yourself previously .

 

I wish you well. 

[Susan]

Hi Clare

 

Welcome to BTG.

 

I'm 2 and a half years post non-aneurysmal SAH and I still have to lie down straight after work. I have had periods where I might just rest rather than snooze but just lately I've been feeling more tired and headachy than usual and have been having a full on 2 hour snooze after work. 

 

You said that you had not had an issue with headaches until a couple of months ago so I wonder if something in life has changed for you lately?

 

I put my changes partly down to a change in my work environment. A couple of months ago my company moved premises to a big bright brand new shiny building. Whilst this was delightful for everyone else I've found it a bit overwhelming - I honestly felt quite tearful the first morning I sat at my new desk. I'm now smack bang in the middle of a big open plan office whereas I used to work in a little cubbyhole off the main office. There is just way too much noise and light distraction - I wear ear plugs/ear defenders most of the time now whereas I had been using them less and less, and I've also taken to occasionally wearing my sunglasses indoors too.

 

I agree with weedrea and Daff about the value of lots of small breaks. In my old building there was a wonderfully dark quiet windowless room that I used to escape to for regular 5 minute brain rests. I've done a recce of the new building but there seems to be nowhere similar to escape to - most of the rooms have automatic lighting that switches on when you enter with no switch to override it. I miss my dark quiet room! Replying to your post has made me realise I must speak to someone at work next week to try to sort somewhere out for taking breaks.

 

I know what you mean about the effects of stress - I very quickly start to feel disorientated, fuzzy and heavy headed when I am confronted with a stressful situation. I follow Win's advice and try to avoid stress at all costs, but as Daff says, with major unavoidable stress, I acknowledge that it will have an impact and allow myself extra time and space to get over it.

 

Another trigger for me for fatigue, headaches and fuzziness is overexertion in exercise. I'm only a very moderate exerciser since my bleed - mainly walking and a bit of swimming and pilates - but if I accidentally overexert even a little (it's very difficult to gauge at the time until it is too late) then it can take a couple of days for my head to recover.

 

You've done well to be working full time for 8 months - I still only work part time. Take it easy and look after yourself. Best wishes xx.

 

 

 

[Kathy]

Hi Clare. I am a Newbie too. In fact, this is my first response post.

 

I am almost five months out from SAH event and am so glad I found this site. It has been so helpful. I still have to sleep elevated to keep headache at bay.

 

Most people in my circle of friends and acquaintances don't have any idea about the unseen disabilities ~ mental deficits ~ and the change in my sensitivity to an overstimulating environment and noise. They all say, "You look great" ~ and assume all is well.

 

It is good to hear from others on this site that I need to be easier on myself and take time to rest. Best regards to everyone and thank you for your comments. 

[Clare1]

I’d once again like to thank every one of you who has taken the time to respond to my question.  

 

I have found it so helpful to receive advice from people who have actually been through this and can relate to how I am feeling.  

 

It can become frustrating when people assume that because you look fine, you must be OK.  Thankfully for most of the time I am but when that oh so familiar wall of fatigue hits, I struggle.  

 

If I’m at work when it happens, I sometimes wonder how I’ll make it to home time.  I feel like I’ve physically aged 10 years because of this!  

[Skippy]

15 hours ago, Kathy said:

They all say, "You look great" ~ and assume all is well.

 

Kathy, I used to get this too so I used to say them " I look well from afar, but I am far from well"

 

My family and friends all assumed the same thing too.  Even now, nearly 12 years on, I still don't feel 100% recovered, but I know I'm 99% there, though I'll never be who I was and do what I did before.

[Louise]

Keep well hydrated (and especially at the min in the heat) 

 

yep feeling older than you are I SO get that one...

 

 

[Swishy]

Reading what Skippy wrote hit me this morning.  "I will never be who I was and do what I did before"...I understand that feeling...I sometimes feel like I am pretending so I don't spoil a fun experience... Anyone feel this way?  I think some of my excitement for life was lost.  I still do things but I always have to push myself, I could easily say no thanks.  I am hoping this will lessen, I think it has a bit.  Never been like this before, always was up for fun. 

 

Clare I will say I run out of energy and just have to stop and rest.  Yes for tiredness, I feel like I am fighting it especially on work days. 

 

Having said that, I still am so glad to have this extra time in life to loved my loved ones and feel loved back. 

 

 

[trish1013]

hello Swishy,

 

I had a SAH will be 2 years this November I also have a shunt.  I  get slight headaches and feel like I am in a fog alot. 

When i have sinus issues like allergis my head  feels like a paper weight as it does today. I found that   somedays are harder then others, stress at work does not help. 

 

I think eventually I will stop working I feel much better when i take off a couple days and  I am not at work, something like this takes alot out of you. I know I am not the same person I was before so yes what you are feeling you are not alone.

 

 

[Swishy]

Hi Trish

 

My foggy head lessened with less meds and I continue to attempt to be med free.  If not for headaches I would be.  Stress is not good for us, not good for anyone. Working is difficult for me also as my job can be stressful.  I work 3 shifts a week and plan not to take on more.  

 

This is all tough Trish...it is good to get support through this group..thank you for your support..

 

Jean

[Macca]

Fatigue is an ongoing problem for many of us.  You're a Lamborghini on the outside but feel like a Fiat on the inside!  A cruise liner with a motor boat engine! 

 

You have to adapt your ways to cope and educate the people you come into contact with if the need arises.

 

To carry on with the engine analogy, how many cars do you see broken down at the side of the road and there is no visible reason as to what is wrong with it.  It's only when you explain to the mechanic (your medical team) that they know what to do to make it right.

 

Rest when you need to and do it well.  Your body will tell you when, and it has its own inimitable way of doing so, as you have already noticed.

 

Keep on explaining until they get the message - it's the only way!

 

Good luck!

[Swishy]

Thanks Macca,

 

As always you seem to have a way with explaining all this.  I think one problem for me personally is sometimes I hesitate as I am not sure, am I explaining or complaining.  I have on more than one occasion said to myself, I am not going to talk anymore about it, about how I feel, about how I am exhausted and need to stop for a while, about how I feel swishy especially when tired.

 

I am learning, oh so slowly, that those people who love me want to understand.   I am still working on co-workers.  

Thanks for you insight

 

Jean

[Macca]

Jean,

 

You're welcome.

 

Don't try to over analyse it.  You are just telling it like it is. Let others decide if you are explaining or moaning.

 

All that matters is that they get the message, one way or the other.

 

From your own perspective, you are doing what you need to do to get along.  Don't try and cater for them. Cater for yourself. You have enough to deal with in your own problems without trying to second guess someone else's.

 

If they take it the wrong way that's their problem, not yours.  Just keep the communications going and be open to their receptiveness and closed to their criticism.  They usually do that when they are trying to hide their own incompetence or insecurities.

 

Just do what you can and to the best of your abilities, nobody can criticise that.  Learn to say 'No.'  That also helps and is a sign of strength of character, not a weakness.

 

Good luck,

 

Macca

[ClareM]

Well said Macca - I'm still learning to say no too Jean  xx

 

Clare xx

[JanetY]

I found this thread to be very comforting. It is 2 months since my bleed and I am still adjusting to life as a recovering person. I’ve always been full of energy and purpose- often with plans to accomplish numerous tasks or fun during the day.

 

I’ve always felt the need to “live life to its fullest!” Now, suffering from dizziness and fatigue, I plan only one or two things (if any). I feel so guilty if my son comes home from school and I’m in bed (which I call “my nest”) resting.

 

I am very fortunate that I am able to reduce my working hours to just one day a week. I love my job, but I have to be realistic about the exhaustion and lack of energy. People look at me and say I look great. They say "how are you doing?", and I know they are expecting me to say “I’m fine, feeling great!” Instead, my honest answer is “I’m hanging in there.

 

The recovery is slow.” I wonder if I should just change my answer to “I’m fine.” The problem is, I’m not fine. I am grateful to be alive. But I’m not the energetic person that I once was. I consider myself an optimist, but sometimes I get very sad about this. 

[subzero]

 

Hello Janet, and thanks for your positive comments about the content on this thread which have given you so much comfort about your recovery.

 

It is human nature to try and get back to normal following a major trauma, however as you now realise.... with SAH … pressing on in these early days can be even more detrimental to `getting there` .

 

So glad you have accepted that a much reduced working week is your way ahead. It may well be the case that in time you will be able to gradually increase your time at work.  Keep taking that long term approach …. you are early days at 2 months. Work and family life do require to fall into pace with you ….  and share your feelings with your son and husband  who are also still adapting their thoughts and lives as they see what is happening to mum. So glad your employer is accommodating too.

 

None of us, sufferers and Carers alike probably knew anything about `SAH` before it hit us so dramatically... and perhaps even cruelly  …. those you meet need you to share what it is like with them and if they are genuine in their concern... they will be there for you.

 

Take care … and keep positive through these early months

 

 

Subs

 

 

 

[Daffodil]

Hi, 

 

you are hanging in there there and I think it’s ok to say that. if you are not feeling fine then say you are not feeling fine. If you are feeling tired, say that, I am all for saying what is true and whilst we try to protect people around us it’s also important to be true to the reality as that helps them help us which is a good thing. 

 

You don’t have to scare them , phrases like, ‘taking each day as they come’ and ‘ aiming mostly at steady’ are some of my favourites but I would honestly just say to people this if I was back at your early stage. 

 

‘Thanks for asking, it means a lot, actually still feeling pretty rubbish most days as lots of healing going on invisbily which makes me super fatigued  as what happened Has really given my brain a knocking  but I’ll get there , just got To give it time and care’

 

I wish you well.’ Take each day as they come ‘ 🙂

[ClareM]

Hi 

I echo what Daffs and Subs say. You are in such early days and seem to be doing so well back at work. Take it slow and don't try to increase your hours too soon, your brain won't thank you and you may regret it.

 

Outward appearances are always deceiving and it is difficult to explain to people how you can look so well but feel so ill inside. I used to find it very difficult telling people that I couldn't so lots of things I had done previously. However with time you will hopefully regain more energy and get back some normality - it will just be a new normality.

 

Good luck, take it slow xx