Thank you for letting me join this forum- I am struggling to get my head around some of the post stroke symptoms, and wondered if those who have experienced similar could reassure me. Bear with me as I explain!
I am 52 and a Headteacher of a large primary school on the west coast of Scotland,as well as a Mum of 4 now grown up children. I initially approached my Gp at the beginning of June as I had an increase in migraines and was looking to get some medication for them. A check of blood pressure showed that it was very high and I was asked to monitor at home for three days- although it was less than measured in the surgery, it remained high and I commenced bp medication.
Two weeks in , when I was away with my husband I woke with a headache, took painkillers and we went for a walk ( we are keen walkers and used to doing a fair bit of exercise) I did not feel right and walking back felt what I can only describe as being out of myself. When we got back I was messaging my daughter and my right hand became extremely weak and it took all my effort to move my fingers. Strength returned a few minutes later. After the weekend I returned to work ( last week of term) and didn’t feel right- felt a real pressure ( almost like fluid filling up in the back of my head and neck) and I assumed I was having a side effect from the bp medication. Spoke to my Gp and when I explained she referred me to our local stroke clinic. I attended and was really very much dismissed by the physician who actually said I had a “psychogenic” headache but sent me for the tests anyway to give me “ the benefit of the doubt” Ten days later I received a letter to say that there was a small area of abnormality on the left side of my brain consistent with a stroke and indicating the medication I should take. I was able to see my Gp who gave me more information- the stroke was in my basal ganglia and was 8 mm. Initially they thought it an old stroke but further opinion from Glasgow stroke clinic say it may well have happened on the day that I had the hand weakness. From my previous symptoms there is also a suggestion that I have had tia’s which I did not recognise as such. Gp indicated that I have had a stroke and that what I experienced that weekend was not a tia.
Since that time I have felt pretty rough and I am struggling with the following issues:
A horrible, deeply uncomfortable feeling of pressure/ sense of my head and neck filling with fluid ( it won’t be filling with fluid, I know that, but that is the only way I can describe it) It is relieved by rest and lying flat. Stroke specialist does not feel that this is a post stroke symptom but I have only had it since that particular weekend.
Nausea which comes and goes- I have a kind of motion sickness- looking down at a phone or using a laptop, even ironing makes me feel nauseous. Has anyone else experienced this and will it eventually go?
Emotional- I am not sure if this is a physical or emotional effect of the stroke.
I really don’t know how to view this stroke- it seems that there are many many more so much worse off and I am finding it difficult to classify my stroke- I feel like I should view it as minor as I don’t have any physical weakness- but yet these after effects feel very difficult.
I have a sickline from my job for 3 months- am I likely to recover fully in that time? I am sometimes frightened that I won’t get fully better( even though I look fine) 6 weeks post stroke I don’t feel like I am moving forward. My Gp has said to think in months rather than weeks but I am worried. If there is anyone else out there who has experienced a basal ganglia stroke and has had similar symptoms, I would be grateful for your advice. Previous to this I was fit, active and well. Thank you for your patience in reading through this post.
@Caroline52 hi Caroline welcome to our stroke forum but really sorry you had a stroke.
The fatigue, nauseous and highly emotional is normal . We have all experienced it. Us SS all mend at different speeds .
I cannot reply on the stroke you had as mine was a cerebellum stroke.
Things do improve and ease but you must rest and let your brain rewire. Listen to your body.
Someone on here will be able to give you their experiences which may help to put your mind at rest.
I wish you a speedy recovery best wishes Loraine
@Caroline52 welcome to the forum but sorry to hear you’ve had cause to join this band of merry survivors.
I didn’t have the same type of stroke as you but some of the symptoms you describe are very familiar.
I had what the Dr’s classed as a minor stroke although I had left sided weakness, vision issues, balance issues amongst other things. Nausea, being emotional, fatigue are very common after stroke. 9 months on and I still get all of those although fatigue is probably my worst symptom now.
The stroke association have many publications on the different aspects of stroke. Have a look through them
I initially thought I’d be back to normal in a couple of weeks but soon realised that wouldn’t happen. Your GP is right to say think in terms of months not weeks.
The brain needs to repair & remap & it takes time to do this. You should pace yourself & rest when you need to. Listen to your body its very important.
I often get weird sensations in my head. Initially it was constant but now mainly when I’ve overdone things.
You will improve over time. Be patient & kind to yourself.
Hi @Caroline52 , welcome to the forum that we all wish we didn’t need (but are glad we found). Really sorry you’ve had a stroke (but don’t down play it). Sometimes you may feel a fraud because you aren’t showing physical signs. I had a pretty major stroke that knocked out my left side but now a year later and back at work even though I limp when I walk, everyone keeps saying how well I look (if only they knew!).
The emotion rollercoaster seems to be very common and it certainly happened to me.
Likewise the fatigue is probably the most common symptom for all, and easily the hardest to deal with for me even a year on.
I’m sorry I can’t give any advice on your particular type of stroke but certainly the fatigue & emotional changes I can discuss.
You are early in your recovery and should definitely see improvement over the coming months.
You must also listen to your body and rest when you are tired. Your brain will need time and rest to repair. You will notice that some previously simple tasks now use up a lot more energy (brain battery power) so don’t ignore the need to rest
I wish you all the best with your recovery.
Please use this forum to ask anything and have a look at other posts, they will help a lot.
Shwmae @Caroline52, old strokes are usually quite faded on scans, so they should have an idea from the intensity of whiteness whether or not it was recent. TIAs show up as well but they fade in time as the brain heals. Sorry to hear you’ve been through this and welcome to the forum. @Loshy has made a good reply, so I will address “dizziness”. Your basal ganglia has motor control and executive function as part of its responsibility along with the cerebellum, so your vestibular system (balance) and oculomotor function (sight) will be affected somewhat, causing cognitive visual-spatial awareness issues, this will either be rectified by the brain over time depending on the severity. Hopefully in the first six months of neuroplasticity (brain repairing itself), it will recalibrate. After that, any residual issues need to be address through physiotherapy involving your eyes and movement. I had severe visual-spatial awareness symptoms, and after almost two years of constantly working on fixing it, I have finally turned a corner.
I had what was described as a mild stroke 3 weeks ago, but not because of high blood pressure but because of a bleed on my brain. It has affected my mouth on the left hand side. I’m also a Scottish teacher but secondary school. Had a bit of a rubbish holiday!! Covid then a stroke.
Seeing my GP tomorrow to ask to be signed off as we go back next week and I’m definitely not ready for that. I’m hoping to be signed off for a couple of months as I’m still very tired and a bit wobbly at times.
I’m sorry I don’t have any real helpful advice for you but just wanted to say hello and hope you are recovering well. I too was previously fit and a keen walker so it’s been a terrible shock to be told I’ve had a stroke. I had covid at the time and do wonder if this has caused the bleed but the consultant wasn’t able to say.
@Rups well described I can always relate to your theory and experience thanks .
First of all - ironing post stroke is definitely contraindicated! Seriously I think the vertigo and fatigue are entirely normal and really in terms of housework if it doesn’t need to be done don’t do it. If it does need to be done can someone else do it?
I’m also on the West Coast of Scotland although probably a bit more remote than you in that we don’t have a Stroke Unit in our local hospital just a surgical and a medical ward and a stroke nurse who was new in post when I had my stroke - they too have to refer to Glasgow if there are any queries. It’s beautiful here but the distances can be a problem.
I too have experienced few physical problems (my non dominant right hand is a bit slow but that’s about it and thought that I would recover in a few weeks - nearly a year on and I’m still what might be described as “nesh” - not weak, that’s too strong and too medical, but not quite right.
As Ann said, it will get better, but be patient and kind to yourself and I hope those around you, including the school authorities, are patient and kind to you too.
Thanks Ann- it doesn’t take much to overdo it- I can now understand why it is viewed as a brain injury as it does feel like the aftermath of a concussion!
Thank you for sharing your experience.
Many thanks for your reply- yes, like you not had a great summer and this has hit me harder than I expected. I think a sick line is the best option- the job we are in means we have to be 100% from the outset - there’s no way to make the job easier so my sensible head says to wait until I am up for it. Happy to stay in touch during your recovery.
Thanks for your response. Thankfully I am being well supported by the education authority. We don’t have a stroke specialist in Oban- it is a physician that runs it. I didn’t have a great experience but at the end of the day I was able to get the ct scan undertaken which at least gave an answer. Really appreciate everyone’s input - it’s good to know that others have been through the same experience.
Hi and welcome @Caroline52, though sorry about the stroke.
I didn’t have a stroke like the one you had, however it will take you a while for your brain to heal and for you to come to terms with the shock.
Be kind to yourself, don’t rush to get back to work, take the time to heal.
Wishing you all the very best.
@Caroline52 it seems as if we are closer geographically than I thought. I too have been treated in Oban and although everyone is lovely they are obviously a very small team.
I had a TIA 4 YEARS AGO IN SEPTEMBER I was very lucky that I made a very good recovery but still have issues related to our TIA Tiredness is an ongoing problem it is something that is a sympton of the TIA and it helps if you do not do too much
Dizziness Nuusea another problem but mine was put down to balance issue due to severe hearing loss but still sometimes occurs given medication to help I have noticed if I get up quickly or move sharper than normal I get dizzy
Best of luck
Sorry to hear about this. From my perspective DON’T rush back to work. Recovery takes as long as it takes (18 months for me to return to work, albeit on fewer hours & slightly different job, with ). I had problems post-stroke with background noise & only when I messaged Headway (acquired brain injury charity) did I get the answer that it was a side effect of stroke. It affects everyone differently & the best thing I learned was NOT to push yourself too hard, difficult when you are in a work position such as yours, but work will carry on & you are more important than that. Good luck.
Hi Caroline welcome to the forum and sorry to hear you suffered a stroke.
I can relate to the ironing after my stroke it was rubbish and couldn’t fold wife had to re do.
As for the emotional part that was a new thing being emotional as when my boss asked me after the second one what caused it Af of the heart, he said oh you have one then.
Tiredness and my speech and handwriting and knocked my confidence.
But hopefully you will have a good recovery, all the best John
I hope your boss was joking.
I recently started ironing again. Last attempt didn’t go so well as I knocked ironing board over but will try again as my hubby’s ironing skills arent the best & I can’t wear my clothes after he’s ironed them
I love hoovering, it has been part of my physiotherapy as it requires certain movements like turning, looking down and up, crouching, bending, and focussing near and far. The sound also cuts out my tinnitus. I read about a stroke rehabilitation programme that incorporates cleaning and household chores as part of physiotherapy. I don’t do any ironing though, I’m not allowed in the laundry
I wouldn’t go so far as to say I love hoovering but it’s million times better than ironing. I find my tinnitus is less intrusive when I hoover too. Shame the sensitive hearing wipes out any benefit from that though
I use household chores as part of my ongoing therapy. I’m hoping that’s a good thing to be doing but figure it can’t do any harm.
I had a brain haemorrhage in Feb 2020, followed by open brain surgery to remove the AVM in Aug 2020. Unfortunately in June 2021 I suffered a cerebellar stroke during a routine cerebral angiogram to check that the fistula which caused the original haemorrhage had been removed. I’ve been slowly recovering ever since.
The first thing I’d say is that although I’ve had a different type of stroke, some of your symptoms sound very similar, especially the nausea. For the first two or three months after the cerebellar stroke I felt that I was in a force nine gale - the sickness, vertigo and dizziness was horrid. I’ve found it does subside and it does take time. However, bending down/ looking up/ turning my head/ even looking out of the window brings on the nausea. Certainly, ironing is out, I can just about hoover for 5 minutes and using a laptop/ i-pad or watching TV brings on symptoms. But I have ploughed on with physio and now see a great neuro physio privately as I only had 6 weeks worth of rehab physio. I find sunglasses a must for all weathers when going out as bright light/ motion brings on symptoms. So my advice to you would be not to push yourself and take time to recover.
I could not look down at my phone and had to shout out text messages rather than typing them for at least 3 months. Now I can look down, but I’ve slowly and steadily typed this message (with short breaks) and it’s took a couple of hours. So yes, motion and vertigo symptoms last. I’m no longer driving.
The tiredness is incredible - I can suddenly lose concentration mid conversation. So give yourself time to rest. I find I have to sleep during the day so rest, rest, rest. I also have reduced strength and unfortunately limp on my left side. I struggle walking up and down kerbs and steps/ rough surfaces. But I’ve bought myself a rollator and this helps me get my head up when I’m walking. My friends call it my ‘Red Ferrari’!
As for work, just focus on your recovery. I made a full recovery after my brain haemorrhage and was back at work after 9 months, but unfortunately, despite a lot of progress I have not made it back to work, following my cerebellar stroke. This was devastating for me, but I’ve accepted it and I’m retiring on ill health retirement on 31st August. I live in Peterborough and am a teacher (was a Headteacher for about 10 years but left Headship as the workload and stress was too much). I loved my teaching job but have had to accept my damage is permanent and have certainly been on a journey these last two years.
I have had some terrible days but I try and look at the positives. I take pride now on being a stroke survivor. My consultant said I should have been paralysed in all four limbs. I’m 51 next week - and the stroke has turned my life around - but I have to say to myself that I’ve been lucky. You mention your GP - are you under a consultant still? If so, I’d push for your GP to refer you back for an appointment.
Anyway, hope this helps. Good to hear from you.