Nasah- some advice and experience please

[DeniseV]

Hi,

I am very pleased to read the posts on here. Very helpful. I had nasah august 2022. Started with some headache, then really bad headache and spasm in the neck and back muscles. Was lucky to have had an ambulance come out pretty much straight away.

 

I was feeling very sick and lost consciousness whilst on my way to hospital. Was diagnosed in 2 days and spent two weeks in hospital. My main problems were light sensitivity ( unable to look at phones tvs and could not read or focus with my eyes) and was really bothered by noise. Pain was horrendous (head and back). Slowly slowly recovered from most symptoms and felt well enough to start work this January( phased return- complex job).

 

First I was coping well, but a month down the line it's starting to take an effect on me - headaches are back ( need meds) and so tired unable to do anything - just wanting to sleep. 
I guess my question is 5 month after the incident has anybody felt like their progress went backwards and after starting work again has anybody requested sick leave again.

 

 Also, I forgot I started to get brain fog again. Sometimes mid-sentence, I am unsure of what I was talking about. Which causes frustration and sometimes makes me emotional.

Hope you all have a good day.

 

with love,

Denise

[ClareM]

Hi Denise, welcome to BTG. Glad you found us and are finding some of the posts useful. I coming up for 8 years post bleed and have had a lot of changes since the event, mainly with work. Are you back to working your full time hours already? I phased back over several months building up really gradually as I could manage.

 

I have never been able to go back to full time hours, I reduced to 4 days (2, day off then 2) and now am only working 3 days a week. You say your job is complex, it may be that you need to cut hours if that's possible, and give yourself more rest time. I still take it easy on my days off, I know about it if I don't.

 

I think returning to work is often problematic and unless handled well can make you feel like your progress is stalling. Do you have the opportunity to reduce hours at all? Your brain has been injured and may not be able to cope with the complexity of your job for sustained periods of time. I could manage my old job but not the fatigue.

 

Re the brain fog, this still happens to me now if I am tired, it's usually a good indicator that I need to take a break. I do feel for you as you are still fairly early in your recovery and learning your new limitations. I hope you manage to find some ways to make things a bit better.

 

Take good care, 

Clare xx

[DeniseV]

Thank you Claire for your feedback. Yes, I started phased return. At the moment on 2 and a half days. Fatigue is the biggest issue and then comes the fuzzy brain.

 

It’s just I feel sometimes people judge and they say oh you look well like that means I am well when I am not. And I feel like there are expectations to fullfill as a mother, a wife and obviously at work.

 

I feel like a failure at the moment, especially as my recovery went well up until now. This why it is so good to read some of the feedbacks here and feel like I am not on my own. Although my family and work is supportive I sense that they don’t quite understand the everyday struggles.

 

I will try and see if I can manage, but felt a bit down today as I worked on wed and since Thursd. , Friday and even today can hardly do anything and suffer with headache which obviously affects my family and my ability to spend time with my son. 

And then also don’t want to sound like a drama queen. Even some doctors question me - oh you have headaches ? Still? Which makes me doubt myself even more.

Sorry for the rant.

 

Much love to you all xx 
 

[Susan]

Hi Denise

 

Don't doubt yourself. Go easy on yourself. No-one else can fully understand unless they have been through it, or are very close to someone who has been through it.  It is very common to have a setback when returning to work - all that extra stimulation has an impact on your brain and you will feel symptoms resurface. 

 

Talk to your HR and see if you can reduce or reorganize your hours. Don't add on any more hours until you feel comfortable with what you are doing.

 

My bleed was 7 years ago now but I still remember how hard it was returning to work - the noise and bright lights in an open plan office left me exhausted and fuzzy headed. 

 

I had originally been given a phased return plan to be back to full time hours by the end of 4 weeks. I knew this was not achievable and asked to see occupational health who advised I go back with an open ended plan to increase hours as I felt able.

 

My HR person was not happy with this - they said they would go along with it but it was important that I make progress every week. The first week I did 4 hours each on a Monday, Wednesday and Friday. The second week I upped it to 5 hours a day for the 3 days and the third week upped it to 6 hours a day for the 3 days.

 

I felt absolutely dreadful after 3 weeks of working. I had a meeting with HR every Monday to review how things were going and on that fourth week told them I thought I had gone too quickly and needed to reduce back down to 5 hours a day for a while. I had also been asking from the beginning to move my desk to a quieter darker space but nothing had been done about it.

 

HR seemed exasperated with me and even commented that maybe I'd never be able to do my job. It was ridiculous and all so stressful - I just ended up taking sick leave for another 6 weeks. When I returned I made sure that I stuck to what was comfortable for me. Luckily they backed off and just let me get on with it. I still work successfully for the same company but I never got back to full time hours.

 

I hope your workplace do support you. Make sure you talk to them if you are struggling. Don't just try to soldier on.

 

Take care. X

 

[Swishy]

Hi DeniseV...Welcome to BTG..I think it is nearly impossible for others to understand  what a recovering brain feels like...While we all recover differently those of us here know the struggle in one fashion or another which is why reading what others have written is so helpful to us.  

 

I am 5 years out and went back to work, probably too early.  I worried if I was performing up to my old self, it was stressful.  I worked three 8 hour shifts but they were overnights which I think made it all worse.  That being said, go slowly, listen to your brain...I think our brain tells us when we over do it and need to sleep or rest or just slow the pace. 

 

I am sorry you have some doctors question you in a way that makes you feel badly.  You are not a drama queen, just a lady trying to heal and live life  

My thoughts are with you.

xx

Jean

 

[KJ_online]

Hi Denise, I hope you don't mind me commenting on your post but I'm having some of the same experiences as you this week and thought it might be better just to join in the conversation here rather than starting a new thread..

I've had some lovely support on here already, and reading back through this forum has been really helpful when I've felt alone in this whole experience. Thank you again so much to everyone who so thoughtfully responds to us. 

I won't repeat my whole experience as I wrote a long post on the Intro Yourself section but I had my NASAH on 19th Dec, so I'm just over 3 months out. I started going back to work about 3-4 weeks ago, on a phased return, starting on 2 days a week for the first month or so and then I plan on increasing to 3 days after Easter if things are going well.

 

It started off really well and I loved being back. Despite it being tiring it felt like a dose of structure and normality in my week after 3 months of not working (which I had found really weird as work had been pretty all-consuming before the bleed!).

However this past week I've taken a nose-dive. It could be a number of factors, including that my sleep is poor again, and I had one quite full-on day over the past weekend where I actually had to accompany a friend to the same hospital I had been admitted to, and sat with her in A&E til 3am with a complex but very different ongoing brain situation she is dealing with, very strange coincidental timing (it was all a bit triggering if I'm honest!). That whole experience may have knocked me a bit. 

 

Anyway the last 2 days I've been SO wiped out, I haven't been able to manage even my reduced hours and have spent all of today in bed. My already-constant tinnitus has become deafening at times despite just being at home quietly really, I am getting little sharp stabbing headaches and all the really odd 'stinging' /icy sensations all over my head inside my skull again.

 

I've been unable to concentrate or be productive at work even on fairly simple things, and I've not been able to handle barely anything stressful without getting teary -- including the fact that these weird head sensations are coming back when I've had a good few weeks without them. 

I'm torn between feeling so incredibly fortunate and grateful that I have recently had the clean bill of health after my follow-up MRIs and 3 month appointment discharged me from Neurosurgery, and feeling really adrift and alone not knowing how to deal with still feeling awful some days, and not having anyone officially to talk to anymore about my concerns .

 

My GP has been pretty unhelpful previously on this -- as some others have mentioned on here, they don't see many NASAHs! And not understanding why after several weeks where I really felt I was improving week on week and getting back to myself, this week feels like several steps back. 

I've mentioned elsewhere that I'm getting married in about 7 weeks time, and these past few days have made me so anxious about being up to it by then. I mean I'm sure I'll be able to get through it, but I want to do more than just 'get through it' -- I'd love to be at my best and enjoy such an important time in my life! I know my fiancé is worried about me too this week and doesn't really know how best to support - because I haven't really known what support I want either. 

Denise, I wanted to ask how you're feeling now? What did you decide about work, did you remain on reduced hours, how have you been coping? 

Thanks to anyone who reads this.... Hope you are all having a good week. xx 

 

[Jo S]

Hi,

 

I hope you don't mind me commenting on your post too! 

I just wanted to say how useful it is to hear all your experiences. Although it is hard hearing that getting back to work is not going to be easy and that you have all found it challenging, it is making me accept that a return to work will need to be phased. 

 

I'm a primary school teacher and my plan was to return to work after the Easter holidays . I was so sure of this a week ago that I actually popped into school just to say hello to my class and my work colleagues!  I was positive that my recovery was going so well that by the end of the Easter holidays I would be fine to go back to work but now I am so unsure.

 

 I am still very grateful for the good recovery I have made as it is only 6 weeks since I was discharged from hospital. I continue to walk a lot, don't need pain killers and have slight tinnitus but still some noise sensitivity. However, I am very aware that other than walking my brain is not doing much else.

 

The thought of all the multitasking, decision making and communicating that I will have to do when I go back to a class of 6 year olds just feels me with dread! What happens when I speak to a parent and the brain fog and words go missing?!  When I return to work if I show any signs of not being back to my normal self,  will parents question if I am able to do my job?!

 

Having been so fit and healthy before the NASAH and someone that normally bounces back very quickly, I am finding recovery very frustrating. There is definitely no nice gradual recovery curve whereby you feel a little better each day ......it just seems like 'two steps forward one step back' or 'even one step forward and two steps back' some days! I think this also makes it so difficult for other people to understand too.  

 

Thank you for sharing your experiences.

 

Take care

 

Jo 

 

 

 

 

 

 

 

[DeniseV]

Hi Everyone,

 

Thank you for all your responses.

Just wanted to let you know I am fine, although I do have some difficulties.

 

I definitely think I went back too early. I did have the opportunity to stay home for two more months on paid leave. I was just eager to get back to normality.

Take your time is my advice!!! At least 4 months. Especially if your job is mentally demanding. As a teacher also I think you have to consider the sensory overload( kids being loud). 

Not all the time but till this date I have difficulties-shopping for example. I find it too hard to focus if I have too much choice and feel lost when picking cereal for example. Sometimes I find myself wondering about not knowing what I wanted, when I clearly had plan in place.
I tried to go back to my normal hours too soon.

 

I have acknowledged that now and will be doing 3 days . If you can try to work a day and have a day off and back to work again to allow time for recovery.  
I never had any issues with depression to begin with, but I seem to have a delayed response. I am very emotional and lethargic lately. An appointment is coming up with my gp regarding that. 

 

So my mind is my biggest challenge at the moment. Not sure if depression, anxiety or ptsd, but something is not right.

It is a big shock as I was always so positive and active and just loved life, loved being. 

Quite the opposite now, which feels odd. Especially after such a traumatic experience with a good outcome( being alive as at one point was under the impression the end is near) I should be so happy and value every minute of existence. 
Anyway one step at a time I just hope it will all get better.

Wishing you all a better and speedier recovery.

 

love,

 

Denise

Edited April 1 by ClareM
spacing

[ClareM]

Awww Denise you sound so like me. Yes one step at a time and it will get better - but you need to give it time. I'm 7 years out and still struggle with the cereal dilemma 😂

 

Clothes shopping is a nightmare, I lose interest very quickly and struggle to focus. Hence online shopping is much easier - not so much sensory overload and I can take my time.

 

I too went back to work too soon but that was due to financial reasons - I was only paid for 3 months. After lots of changes with hours and employees I now work 3 days a week, Tues, Thurs & Fri. Giving me plenty of recovery time, but I will say I'm floored on a Friday after 2 days solid.

 

Things do get better with time but also it's then easy to forget your limitations. Try and accept the new normal and work with that - something I am STILL dealing with.

 

Take good care

Clare xx