Sensitivity and dizziness

[Faith75]

Hey … my husband had a SAH due to an aneurysm 3 weeks ago ..it was coiled and he spent a week in icu due to low sodium .. he’s been home a week now and he says his head is very sensitive when touched and he is often very dizzy … can anyone else relate please xxxx

[Skippy]

Hi Faith

 

Yes, I can completely relate.  I was also coiled but my head felt very delicate.  The dizziness was horrendous and just bending down left me feeling like I was going to faint.  Three weeks is very early in his recovery and this, it would seem, is perfectly normal. 

 

Make sure he rests as much as possible, sleeps when his body tells him to and that he drinks at least 2 litres of water throughout the day.  This helps the brain to function - I learned very early on that not drinking enough water and doing too much too soon completely wiped me out for days and the fatigue that hit was like hitting a brick wall.

 

Please read through the site and take a look at the various posts - you may find that some relate more to your husband than others.  All of our experiences, symptoms and recoveries very greatly, so please don't worry if you read something and think "oh that might happen" or "oh that hasn't happened" - it's the same as every pregnancy is different  

 

Take care and make sure that you are looking after yourself too x

[Kathy]

Hello dear Faith,

Thankful your husband is home. Yes, dizzy and sensitive head as far as easily over stimulated by sounds, lights and movements around me were common those first few months after leaving the hospital.

 

I had to learn how to turn while walking without getting so dizzy. Rest and drinking lots of water daily and not pushing to do too much are important for recovery.

 

Later  PT, OT, and speech (more for mental deficits) rehabilitation helped me with movement, balance, thought process and relearning some math and comprehension skills.

 

I had to sleep with a large triangle elevation pillow for over a year. I would have headaches if I slept with my head more flat on a regular pillow. It is sort of a learn as you go recovery.

 

I found reading posts on BTG helped me so much to learn what to expect and provided encouragement and perspective from others who understand.

 

Take time for yourself as a caregiver and let others help. Meals provided from our local community of friends, family and place of worship were very helpful to our family. Keep us posted.

Blessings, Kathy (in Colorado) 

[Carmen]

Hi ! I’m Carmen , 50 yrs old from Lincolnshire , UK . 

I had an SAH this summer and a coil embolisation. There was evidence of a stroke during surgery but  I was lucky to avoid any disabilities as a result of this …. HOWEVER !…. The fatigue and the DIZZINESS is very real and when raising the dizziness with the neuro team I have been dismissed 🙈 

 

It was not until I read some posts on here that I realise it IS a thing !!! I’m so relieved 😅 

it is normally when I’m tired or extra run down … 

 

I’m not due to go back to work until the new year , on a phased return as my job is very demanding so I still have time for further recovery …..

 

I just wanted to say thank you for reassuring me that I’m not imagining my dizzy head !! 
xx

[Compostc]

Hi Carmen

 

Dizziness & fatigue definitely are very real I don’t know what you’re neuro team are thinking about.

 I couldn’t look up or down for any length of time or do hardly anything without feeling dizzy.

 I read on another site that you shouldn’t nap in the afternoon,I used to go to bed in the afternoon and stay until next morning.

 

Try to take it easy going back to work it won’t be easy. Keep us informed on your progress

 

Best of luck  Compostc.

[Carmen]

Thank you @Compostc … In general the neuro team have been brilliant and acknowledge the fatigue as being a big hurdle , however when I mentioned the dizziness, they suggested it was my hormones 🙄 as I had just had the all clear to go back onto my HRT. 

 

Work are being very supportive, I work at a local primary school, have done for 15 years. My phased return will be over a 6 week period in January although my husband isn’t keen for this to happen! Lol

 

Did you have a stroke ? Or a sudden SAH like myself ? I’m so glad I found this page 

thanks 😊 

[Compostc]

Hi Carmen

 

Like you I had a sudden SAH didn’t know anything until I woke up in hospital, that was 2012.

I certainly couldn’t have coped with a primary school class, I found it difficult to be with my grandchildren just for a short time.

 

 But like most of us you won’t listen to your husband you’ll have to have a give it a go. It took me a long time to realise the more I pushed the worse I got.😵‍💫

 

 

[ClareM]

Hi Carmen welcome to BTG  

 

A SAH is classified as a type of stroke, it is a haemorrhagic stroke as opposed to the more common ischemic stroke.

 

I wonder if your dizziness is due to fatigue from doing too much. I remember I used to feel very wobbly and lightheaded if I was particularly fatigued. You are still fairly early in your recovery so need to make sure you get enough rest.

 

I wish you good luck with your phased return, I hope 6 weeks is enough. You may find the noise of primary age children very challenging; I still struggle with noise 7 years on - children and babies are a real problem. I'm glad to hear your work are being supportive though, it can make such a difference.

 

Hope your recovery goes well, come back and ask if you have any other questions, there is usually someone her to help  

 

Clare xx

 

 

[Carmen]

Hi @ClareM , thank you so much for your message … yes , I fear you are right 🙈 my husband took me away for my 50th birthday last weekend and I did too much . I’m my own worst enemy ! He wanted to cancel ( he booked it before my SAH ) but I was determined to go 🙄

 

I’m now paying the price as I was very poorly the day I travelled home , was sick , ached and felt like I had flu . The dizziness and fatigue is lingering today - hoping to feel better tomorrow . 

Some days I feel like myself which is amazing so I do more and then regret it . We have lots of pets and live rurally so I’m normally always on the go and testing does not come naturally to me ! 
Can I ask how long ago you had your SAH / stroke ? Were you a similar age to me ? 
Carmen x

[Carmen]

15 hours ago, Compostc said:

Hi Carmen

 

Like you I had a sudden SAH didn’t know anything until I woke up in hospital, that was 2012.

I certainly couldn’t have coped with a primary school class, I found it difficult to be with my grandchildren just for a short time.

 

 But like most of us you won’t listen to your husband you’ll have to have a give it a go. It took me a long time to realise the more I pushed the worse I got.😵‍💫

 

 

 

I am a pastoral and safeguarding lead with a small team , working directly with families and childrens services , so although I don’t have a class of children, I have a very demanding and often stressful job . 

You are right … I don’t listen to my husband and then I get told off when I’ve done too much 😂😬

 Im worried I’m going back to work too early but I cannot be without my salary , regardless of how many people say “ your health is more important” unfortunately , the stress of no income may be just as bad for me! 

It’s awful but it’s reality isn’t it …

[ClareM]

Hi Carmen, I travelled on holiday to Menorca approx 12 weeks after my bleed. Although I enjoyed it, I was very irritable whilst away and slept every afternoon (in bed not on the beach!)

 

My tips for travelling are: factor in rest time, if flying it's worthwhile booking an airport lounge as it's so much quieter - the busy airport environment was difficult for me. I also always have an extra day's holiday after return to recover. 

 

I was 55 when I had my bleed, it was 7 years ago. I was out running and collapsed. I'm back to running, started about 4 months after the bleed. Ran tonight 4.5 miles with a hill and a rain shower - loved it, it's great for my mental health and even after a busy workday it makes me feel much better. The girls I run with all say we run as much for our mental health as our physical health  

 

I too returned to work after 3 months, too early, because of salary, see if you can take some of the holiday you've accrued to stretch out the return. I'm sure your work would rather have you back well and able to manage than having to go sick within weeks. It must be in their benefit to have you with all your experience back and well than having to re -recruit.

 

But bear in mind you will possibly struggle to manage your pre bleed hours especially if it's a stressful job.

 

Clare xx

[Compostc]

Hi Carmen

Yes it is reality and you have to find a way to deal with it and it won’t be easy, I never got back to full time work if I did 4 hours the next day I would struggle to do 2, I’m 68 now and still do a little bit of work eventually I’ve learned not to over do it.

 

ClareM seems to be giving you a lot of good advice .

It won’t be be easy for your husband either don’t be to hard on him he’s just trying to help.

[Carmen]

20 hours ago, ClareM said:

Hi Carmen, I travelled on holiday to Menorca approx 12 weeks after my bleed. Although I enjoyed it, I was very irritable whilst away and slept every afternoon (in bed not on the beach!)

 

My tips for travelling are: factor in rest time, if flying it's worthwhile booking an airport lounge as it's so much quieter - the busy airport environment was difficult for me. I also always have an extra day's holiday after return to recover. 

 

I was 55 when I had my bleed, it was 7 years ago. I was out running and collapsed. I'm back to running, started about 4 months after the bleed. Ran tonight 4.5 miles with a hill and a rain shower - loved it, it's great for my mental health and even after a busy workday it makes me feel much better. The girls I run with all say we run as much for our mental health as our physical health  

 

I too returned to work after 3 months, too early, because of salary, see if you can take some of the holiday you've accrued to stretch out the return. I'm sure your work would rather have you back well and able to manage than having to go sick within weeks. It must be in their benefit to have you with all your experience back and well than having to re -recruit.

 

But bear in mind you will possibly struggle to manage your pre bleed hours especially if it's a stressful job.

 

Clare xx

Hi Clare , unfortunately I don’t accrue holiday as I work term time only . I went down to a 4 day week back in April as I have rheumatoid arthritis and 5 days was too much 

 

I’m being referred to occupational health who will support me with my return and if it doesn’t work , my boss will work with me ,hopefully , to extend my phased period 🙈 so many unknowns !! 

[Super Mario]

Carmen, it may be worth looking into early retirement through ill health if you can't manage returning to work and are in the pension scheme. If you are in a union they could possibly help you with an application.

[Carmen]

Hi , funny you should say that , my boss has asked if that’s something I would like to talk to occupational health about … I’m only 50 and if I took my lump sum pension now then surely I will leave myself short ? I have read up about it but I’m not sure I really understand it ….. 

[ClareM]

Hi Carmen, see how you get on first. It appears that you have a sympathetic boss and as it's presumably Local Gov they can't get rid of you that easily. Occupational Health should support you with any decisions you make, and you should have a pensions advisor you can ask too, but don't sell yourself short.

 

I could have retired when I realised I was struggling but I kept working and I am so glad I did. 50 is very young to be retired - unless you fancy it - and as you say it will affect your pension. I presume you enjoyed your work pre bleed, I loved my job and had intended to retire in it. Due to pressures I had to change and that was problematic in itself, but luckily, I found my dream job and am so glad I persevered.

 

Clare xx

[Carmen]

Thanks Clare , I’ve worked there for 15 years and my boss has been very supportive . 
I think I need to continue working as I miss it … although this dizziness is the worst it’s been and where as I normally only get it late evenings when Im tired , I’ve had it for the last 4 days straight and it’s when I’m like this I can’t imagine how I will ever cope with working again !! 

I have to ask … what is your dream job ? 
x

[Super Mario]

Carmen, I worked in a secondary school for years but because I lost my sense of balance and wouldn't have been able to continue with my job safely, I got early retirement, and I was only 53. My pension was enhanced by the number of years to my retirement age. I got the option of a large lump sum and a lower monthly pension or a lower lump sum and a higher monthly pension.

 

Taking the difference between the two lump sums, higher minus lower it would only take two years to make up the difference between the two with the higher monthly payments.

I took the lower lump sum and higher monthly payments, that was 18 years ago so I am quids in. Of course that was a gamble, I may not have lived for 2 years.

 

Once I felt able to actually do something, about a year after my SAH, I volunteered with my County Council and did Youth Mentoring and helped out in a local infant's school. That I could tailor to as and when I felt able and no commitment to hours. I did manage to fill my time. At first, I did wonder how to fill my days as I was used to never being still.

 

[ClareM]

 I work as a pharmacy technician with a small team of pharmacists and technicians. We support patients in the community with managing their medication. It's all about compliance and hospital avoidance. Many, particularly elderly people, are admitted to hospital as they are not taking their medication correctly. Our aim is to assess and rationalise medication regimes with the intention of making things more manageable. We see so many patients who just need a bit of help and it's so nice to be able to make a difference.

 

Maybe you should take some time out over the weekend and see if some rest helps the dizziness. It may be that this is your brains way of telling you that it needs a break.

 

Keep us posted as to how things go over the weekend xx.

[Carmen]

12 hours ago, Super Mario said:

Carmen, I worked in a secondary school for years but because I lost my sense of balance and wouldn't have been able to continue with my job safely, I got early retirement, and I was only 53. My pension was enhanced by the number of years to my retirement age.I got the option of a large lump sum and a lower monthly pension or a lower lump sum and a higher monthly pension.

 

Taking the difference between the two lump sums, higher minus lower it would only take two years to make up the difference between the two with the higher monthly payments.

I took the lower lump sum and higher monthly payments, that was 18 years ago so I am quids in. Of course that was a gamble, I may not have lived for 2 years.

 

Once I felt able to actually do something, about a year after my SAH, I volunteered with my County Council and did Youth Mentoring and helped out in a local infant's school. That I could tailor to as and when I felt able and no commitment to hours. I did manage to fill my time. At first, I did wonder how to fill my days as I was used to never being still.

 

 

Oh wow , that was a lot to process 😂 - I think maybe I should speak to my school pension advisor and see what my options are … my boss said she has known people take the early retirement temporarily ? Then return to a smaller role a couple of years later ? I think I just need to know all my options just in case it all goes horribly wrong 🙈 

 

You and Clare are such a great support .. thank you 😊 

[Carmen]

12 hours ago, ClareM said:

 I work as a pharmacy technician with a small team of pharmacists and technicians. We support patients in the community with managing their medication. It's all about compliance and hospital avoidance. Many, particularly elderly people, are admitted to hospital as they are not taking their medication correctly. Our aim is to assess and rationalise medication regimes with the intention of making things more manageable. We see so many patients who just need a bit of help and it's so nice to be able to make a difference.

 

Maybe you should take some time out over the weekend and see if some rest helps the dizziness. It may be that this is your brains way of telling you that it needs a break.

 

Keep us posted as to how things go over the weekend xx.

 

Your job sounds lovely … very rewarding 

I’ve been resting loads but today I might literally stay in bed and drink nothing but water ! ( no decaf coffee ) and see how it goes …

 

Thank you x

[Charlotte]

Hi, I had my SAH in May and work as a nurse in insurance. I returned to work in September and found it very hard on 15hrs per week. I’m now on 20hrs with a view to doing 25 hrs in January 2023. From my experience I would say a return to work over 6 months is far more realistic and even then I’m not sure I’ll make full time.

 

I’m 52 and need to work as single parent so very motivated to do as much as I can but I’ve found it very difficult. Tasks such as reading, talking in groups, being in meetings and doing higher cognitive tasks just wipe me out. Varying my tasks throughout the morning help and doing the hardest things first thing also help. Good 👍 luck!

[Arly1]

Hi Carmen,

I had a SAH aged 48 and went back to teaching after 3 months with occupational therapy support. They were all very supportive at first, but as time goes on, it gets more difficult. Occupational therapy advised that I only work afternoons (as I was sleeping 12+ hours a day and couldn't get out of bed until 12pm) but that I should then be phased back to a normal timetable. It has never happened.

 

When they first gave me one morning, I suffered, but managed (just). When they gave me 2 mornings, I woke up deaf soon after. I quickly realised it was probably the strain causing it and contacted occupational therapy for help, but they refused to get involved again unless I had a physical disability (it felt like I did, but the answer was a very clear no).

 

Work rearranged things a little, but I still lose my hearing regularly and have to guess what students are saying to me (I often guess wrong). 

The following year, they gave me 2 mornings again. This time, I developed vertigo (3 types, one where I can feel like I am in a ship when moving around, another where I feel like I am tipping upside down when sat still and another where my field of view rotates, especially if looking at a screen.

 

I also developed muscle twitches and jerks, I often get very shaky and recently my vision has started to flicker when my brain is strained (with exercise or too much work). 

The hearing loss started 2 years ago and I'm still waiting to see neurology (I was with ENT for the first year but they found no cause, I've been on the neurology waiting list for 15 months).

 

Be careful in the early stages to avoid rushing back. Recovery can take a long time and all the support and sympathy slowly ebbs away. I feel a bit abandoned by the NHS, but I guess a lot of people are in the same position.