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Stalled recovery from a NASAH that took sometime to diagnose


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I had my NASAH in December and from reading the stories on here I have been very relieved to know that much of what I am feeling is common to other people but as I have noticed my mental health suffering recently I thought I would take the plunge and join the forum and share my story.

 

At the start of December I needed emergency dental treatment and while the dental anaesthetic was being injected I started to feel very ill, excruciating headache, loss of hearing, nausea, racing pulse and then vomiting. The dentist was very calming and I stayed on the treatment chair for a few hours until the pain subsided and I could get home. I suffer from migraine and new this wasn’t a migraine but the dentist reassured me that she had seen this reaction before and it was all okay.

 

The next day I was washed out but generally fine. The next day out of absolutely nowhere another headache hit and my husband was so worried that he called the NHS 111 number and they immediately sent a paramedic. She was on a pushbike so on looking at me decided I needed to go to hospital and arranged for an ambulance.

 

Once in the hospital I was sent for a CT scan which came back normal. I was admitted to a general neurology ward overnight as a precaution. The next day (a Saturday) I saw the neurologist and he performed a lumbar puncture. This also came back clear and so I was discharged.

 

14 hours later I had another one of these headaches – the worst so far and ended up back in A&E. The same neurologist was on duty and came to see me, he thought at this stage it was nothing more than a run of thunderclap headaches (it had been a stressful time at work) and gave me stronger painkillers and an antiemetic.

 

A relative died from a brain haemorrhage in the 1980s and there is a history of high blood pressure in the family so ”just to make sure” I was booked in for an MRI. I had a fourth thunderclap 4 days after this.

 

The day after having this scan my neurologist called me in for an appointment that same day. The MRI had shown a large bleed on the front right side of my brain when nobody was really expecting to see anything. This was now over one month after the first symptoms.

 

I’ve now had 2 further MRIs and the good news is that the area affected is reducing and no other problems were noted so it does appear to have been a freak happening which either was caused by RVCS or that caused RVCS…however my recovery seems to have stalled.

 

I was known within my family for having a great memory which has now gone and worse still as part of my job is as a book reader and judge for certain book related initiatives and prizes I am still unable to concentrate on narrative fiction. My problems with reading improved greatly at first – in December/ early January I couldn’t read anything longer than a tweet and now I can read essays/diaries and short stories but nothing more.

 

This hasn’t really improved since February but isn’t being taken particularly seriously by my GP or neurologist. Before I fell ill I was reading 3 or four books a week, this is now 1 or 2 a month…

 

I was off work from December until mid-March and am now back at work on limited hours. I am lucky in that my work place & boss are so flexible and allowing me to recover at my own pace, but I sense that their patience is running out. I still have the same niggling headache I’ve had since the last major thunderclap (5 ½ months of pain is very tiring as I am sure many of you can relate).

 

I also have terrible fatigue, poor concentration and memory plus at times of stress/tiredness I have trouble finding the right words. These are all invisible symptoms and I think harder for people to understand, there have also been a few issues with sickness and protocols surrounding a phased return plus a reluctance to involve the in-house occupational health team.

 

Apologies that this first post is so long, it has taken me a long time to compose and type. I realise that in the grand scheme of things I am incredibly lucky – I didn’t need surgery, it is thought that I am only 2-5% more likely than the general population to have this happen again, and I am better than I was.

 

However I feel like I have stalled in recovery in the past few weeks, and even slipped backwards – the headaches have worsened, as have my concentration levels and fatigue. A balance between work/life/health just seems impossible at the moment.

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Hi Sarah,

 

I had an SAH4 and my Daughter found this site while I was in cuckoo land.  I am so happy to have made it back to reality !! 

 

My short term memory is bad but ask me what happened years ago well then all is well.   

 

We all have problems in getting better, I was told I'd never walk again but can walk a certain distance and some days are better than others.

 

We will get there just stop listening to others tales of woe as we need to surround ourselves with happiness while getting better.

 

Try not to stress as it does us no good and water helps us so keep drinking water, good luck on your recovery  xx

Regards

 

Win xx

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Hi Sarah

Welcome to BTG, glad you have found us and hope you are finding some support.

 

I can totally empathise with your situation and think you may have to take stock of your work and re-evaluate.

 

I returned to work on a slow phase approx 3 months after my Nasah. I worked in a pressured role as a pharmacy technician where I needed a high level of concentration. Despite reducing my hours and changing my work pattern so I had a midweek break I struggled.That together with poor management of my phasing led to me deciding to change my employer.

 

I went to work in the NHS in the same role but with a much larger staff base so there was not so much pressure and to begin with it was fine. However once again management failed me by allowing staffing levels to drop and therefore increasing the pressure on me. Despite Occ Health directives I was not supported and eventually cracked resulting in a period of sick leave for stress.

 

I then applied for and was successful in a totally different role within the NHS with even less hours. I now work 30 hours over 4 days with a day off on Wednesday each week. I still am floored most Fridays. I am lucky in my new role, I work in a team of 2, my boss is amazing and very supportive - she had a brain tumour as a child and we understand each other.

 

You say you were previously known for your memory - I was too, but now I am known for my lack of memory!  It's better than it was but I don't think it will ever be the same as pre bleed. Fatigue has got better but if I push it I still suffer and finding words is a good sign that I need to rest.

 

Reading; although I never read as much as you pre bleed, I was an avid reader. I now struggle to concentrate on what I am reading and then find I can't remember what I have read the next day. Not a problem for me as I am reading novels for pleasure but harder for you in your job role.

 

Not all what you probably want to hear but unfortunately a common theme post sah. Maybe you need to sit down with your employer and try and devise a plan. 5 months out is still early days, things should get better but it's going to take time.

 

Another thing that may be useful is a neuro-psychology evaluation. This will tell you where your deficits are and give you tools to help mitigate the effects. You should be able to get a referral through your GP or the neuro unit you were treated. I found mine very useful and still see her on a regular basis.

 

I feel for you and hope your problems can be resolved. Keep us posted and good luck!

 

Clare xx

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Hi,

 

I've read very similar stories like yours on this site and amazed they did not find anything the first three go rounds and the miracle that you survived.  I went back to work far too soon so please try to slow down.  The world does not see how you feel.

 

iola

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Thank you all for the welcome and reassurance. My immediate line manager is so pleased I'm back at all and is very supportive currently - although how long that will last if I stay at this level and don't improve I'm not sure.

My husband is also very supportive and really helps out around the house/with the cooking on my bad days.

 

Today however was a good day and I shall store the feeling up for the less good ones!

 

i hope everyone else is having a nice weekend.

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Welcome to the site. Im sorry that there was a delay in doing the MRI. I think they should have done it the first time you were right there in the hospital. I cannot give you med advice. Please read the threads on the website, they are very helpful. Good luck. Take one day at a time and don’t stress.

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  • 2 weeks later...

I thought I'd update a little on this as I finally got a referral to Occ Health today. She was really nice and is appalled that I've been back at work nearly 3 months before being sent to see them, then even more horrified that I had to demand the referral.

 

I am pleased that I have pushed for this despite the stress and worry about it making me feel really unwell the past couple of days.

 

The outcome seems to be all in my favour, now that everything is noted and on my HR file it will be very hard for them to suddenly stop me working reduced hours and reduced duties on a whim, which was what I was worried about. She is happy to say that I can have another 6 months on this before another review is due. Also having it all formalised means that if anything does happen to my job then I'd have a good case for unfair dismissal.

 

Another worry was that where I work is about to be restructured and while nothing about my health/hours/duties was recorded I'd have to follow a very prescriptive, cognitively challenging reapplication process (colleagues in the county went through this last year and it is horrible) with no allowances being made. Now I know what I have to ask my neurologist for in regards paperwork so that I can make it clear that I am still unwell and can't jump through every hoop.

 

It all feels better, I think. My husband was allowed in with me and he seems happy with what happened which is reassuring but to be honest I am now so tired that I can't remember everything (or anything like).

 

The Occ Health person did seem  to take on board how much I had changed since December in terms of memory/concentration/cognitive ability while saying that I presented as a very well-together person. My husband was quick to stress how much I had changed but there was the - oh you can expect to lose your memory and be more tired as you get older...that's fine but I changed over night.  I get the feeling that this is a common complaint for people who've had SAHs however.

 

Sorry for the brain dump again - hopefully this positive meeting will set my subconscious to rest a bit more and I will start to improve again.

 

Hope that other people are having a good day - or at least a tolerable one.

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Hi Sarah 

 

glad you you got to see your occ health rep and got some plans in place. Just ensure your management keep to the plan as it is all too easy for them to change the rules and not stick to the guidelines. 

 

I think one of the most common comments heard  after a sah by sufferers is “you look so well wouldn’t have believed anything happened. “ shortly followed by “ it’s probably your age - memory goes with time”. 

 

Yes but as you point out - not overnight!  

Have you found out about a Neuro-psych assessment? They are really helpful and would support your occ health report 

 

Hope things go well for you, keep us posted 

 

Clare xx

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  • 3 months later...

I'm struggling again at the moment and thought I'd post here as well as just reading all the posts and trying to absorb the good advice.

 

I saw my GP in late June and she signed me off on restricted hours for a further 3 months which was a great relief over the summer, especially with the heat. I also saw my neurologist, he seemed pleased with me and won't be seeing me again until the New Year. He explained more about my initial heamorrhage and defined it as a catastrophic brain injury, which was a little scary.

 

My work place is undergoing a restructure this Autumn and the neurologist kindly wrote a letter for me explaining that I was to be treated as a disabled candidate when it came to reapplying for jobs and listing what has happened to me in clear terms.

 

All of this should be reassuring but my current fit to work note runs out on Sunday and I was called into the manager office and pointedly reminded of this earlier in the week as well as  warned that if it got extended again more serious meetings with Occ Health will have to happen. The passive aggressive stance and implication that I am burden or shirking are getting me down. I have tried to work my contracted amount of hours but I still physically can't, and when I've left meetings for air/space/quiet I have been reprimanded afterwards.

 

I had already made an appointment with my GP for Friday and have a list of questionsto ask, and I'm hopeful that she will extend my sick note. I will also try to ask for a mental health referral too but I've been fortunate in the past and never had to ask for this sort of health help - how do you broach this? I'm so used to trying to show my family that I'm coping that I don't know how to express how muddled I am. I can't say exactly what is wrong - most of the time I can cope but I know I need some help to untangle myself.

 

Also does anyone have any ideas how to get across to my boss and colleagues just what has happened, how it affects me and just how poorly I often still feel?

i've printed out and shared the Headway sheets but there seems to be no understanding that it isn't like I had a broken arm and it is now fixed.

 

Thanks for listening, and for the great support and advice you give from your own personal experiences,

 

Sarah

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What if you print out a letter from your brain which is on here Sarah and let them read it.

 

 

Tell them you are struggling and it isn't your fault and can they lower hours and look at it after a month ? 

 

 

Whatever you do I wish you all the best xxxx 

Regards

Win xx xx 

 

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Hi,

 

Unfortunately, no one that has not had a brain injury can understand how you feel.  It's impossible and I'm finally in a place where I don't expect others to understand. It's such a long hard haul and even after five years I have more days than not heavy headed and feeling weird.  I never go a day without the awareness of my brain.

 

I miss not worrying about my health and getting up and just living my day without that knowing.  But, I move forward.  I do joke about it at work now but it took a long time before I could.  When I do something stupid I tell them I can't help it because have brain damage and yes I'm gonna use it as my excuse because I earned it!

 

iola

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What a crazy story! i will pray for you.

 

A good point about people in yours-my situation is that we look normal. So it is easy to be surprised when the person has memory-personality problems.

 

When you break a bone, you are in a cast. And everyone sees the cast and expects you to be disabled. But when you have brain damage, you look normal from the outside and you surprise people with your deficits.

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Sarah, I'm so sorry you had to experience all of that.  I know you will find here a place for understanding. (It has been invaluable for me) And I pray everything works out well for you. 

 

Blessings!

 

Also, Iola so much of what you said resonated with me. Thank you for sharing.

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