I had a stroke 6 months ago. I made a good recovery with movement but I am having ongoing problems with what I call ‘whirry head’, sometimes also nausea. It is hard to describe - not a spinning feeling (a bit like having had a glass of wine) but I have to lie down, then it goes. I wake up feeling ‘normal’ and it comes on after about an hour. It often eases as the day goes on. The last few days have been quite debilitating and depressing - I have had to spend most of the day lying down. I have tried moving medication times but this makes no difference. I went to GP last week (they have not been helpful or supportive) and he suggested trying to drop some of meds just for a week to see if that was an issue. It hasn’t helped. I would like to see a doctor or physio who has experience of working with stroke patients. I felt in despair today - now at the end of the day it has lifted a bit. Any thoughts or similar experience?
I had terrible dizziness for many months after my stroke. I described it as like inside my head was dizzy and not the room spinning. Feeling like I was on a boat all the time. I still get it to a lesser extent but when I do it is horrid so you have my sympathy. It may be worth asking for an ENT referral so they can check whether there is anything else going on - something with your ears perhaps. I was given some meds to help but they gave me migraine like headaches so I stopped taking them. Overtime I have learnt to live with it although it is still the one thing that upsets me still from my stroke.
Hopefully yours will settle down as time moves forward.
Thank you - helpful to know others have had similar. I am thinking about looking for physio who specialises in vestibular/balance issues.
Your description is actually very clear and classic for something many stroke survivors experience. It’s not uncommon for this to be linked to one or more of the following:
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Vestibular (inner ear/balance) dysfunction caused by the stroke – this doesn’t always show up as spinning; it can be exactly that woozy, ‘had a glass of wine’ feeling.
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Delayed orthostatic hypotension – a drop in blood pressure that kicks in after you’ve been upright for a while (which fits with it coming on after an hour and easing later).
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Fatigue-related sensory overload – your brain is working harder than it used to, and after a period of being upright and processing the world, it simply says “enough” and forces you to lie down.
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Medication side effects – you’ve already sensibly tested this with your GP, so you can probably rule that out.
Thank you so much for this, very informative and sort of reassuring - ie this is stroke related and not another issue. I had a vestibular issue two years ago (pre stroke), I was unable to function for 4 -6 weeks - I wonder if the stroke has disturbed some previous damage. I will try to explore these ideas/issues with experienced professionals. Thank you again for your time.
PS I have just seen you are a professional violinist - I am a very amateur player of alto sax (only started a few years ago so still a beginner) and I count myself lucky that I have been able to return to it, though still a bit of weakness in one hand.
Just a PS to my post - I have just spoken to GP who has suggested post stroke autonomic dysfunction.
May I ask, do you know what kind of stroke you had?
Iscaemic lacuna - I’ve just looked at my discharge notes. It was very gradual, happened over a week and not found on first visit to A and E. One of doctors explained that it was in a section where lots of vessels meet (like a chicane) and the vessel had probably be widening and narrowing over the week. (I thought I had a virus) I was in good health before stroke, not overweight, non smoker and non drinker, healthy diet and taking moderate exercise. Slightly high cholesterol and slightly high blood pressure. Let me know if you want any more info, interested to hear any comments. Hope you’re doing ok
Oh, okay, I was seeing if I could rule out cerebellar stroke which has giddiness as a common acquired side-effect, but I am unfamiliar with lacuna strokes. I have almost constant giddiness, but as yours passes if you lie down and then returns, it could be vestibular, getting up and moving challenges the brain’s ability to message balance signals or it could be the meds. Sorry, not so helpful, pretty much echoing what has been previously said.
Hello @Elizabeth ,
I had a right sided ischaemic Lacunar stroke 3yrs ago. I can’t relate to anything like a ‘whirry head’ which I, too, would find debilitating and depressing. From what I’ve just read about post stroke autonomic dysfunction - it’s more likely to occur in large acute strokes with a high NIHSS score.
I do hope you can find someone or something to help. It’s horrible when recovery has been pretty good and then something like this comes along. I’m in a similar situation but with a different issue that has slowly become debilitating and depressing. The worst thing for me, and probably you, too, is whether it will improve or even better, go away completely, or will it be like this forever. And of course, the answer is that we don’t know until it happens.
Best wishes.
Trace
Hi Trace, thank you for this. Yes, it’s depressing when you think youre making progress and then it regresses or a new problem comes. Stroke recovery is not linear - I have to keep the hope that things will improve eventually. I’m not convinced that the GP was right but at least they are finally taking some notice - they have rather left me to get on with it. I wish you all the best with recovery - the current hot weather doesnt help, I seem to spend much of the day lying pathetically on the settee!
Hello, I’ve found this post very interesting. It’s my first time on here. I experienced a lacunar stroke around six weeks ago. Very small blood vessel clot deep within the brain. It happened in my sleep. I originally had left side weakness and was slowly recovering. Unfortunately less than two weeks later I suddenly awoke one morning with terrible vertigo and balance issues. It was so severe and I felt so poorly I ended up back on the acute stroke unit. Luckily another stroke was ruled out and I’m now referred to ENT. Tests done whilst in hospital ruled out an ear issue. It’s been very debilitating and other physical issues are evident now which weren’t originally. Luckily this last week it has slowly started to improve slightly. I too feel like I’m moving, not the room. Also similar to having wine without the enjoyment of it. My hearing distorts too. I felt very despondent due to recovery seemingly regressing. It’s not easy for anyone. Sharing information has made me realise we’re not alone. Thank you for your personal stories and advice, much appreciated. Thank you.
Hi, really interesting to hear your story. After I had been out of hospital about a week or two, I had a ‘panic’ return to A and E, feeling very unwell and similar to when I had had the stroke. I had scans etc and was sent home at the end of the day, reassured that it wasnt another stroke. (I had very good care and attention). After about 8 weeks, I woke one day very early feeling similar unwell - very weak in both arms and legs, very unsteady, nausea. Paramedic came and did thorough check, was reassuring it wasnt another stroke. It eased slightly at the end of the day. After that I made very slow progress, but a pattern of feeling worse in the morning and easing later in the day. I feel I have gone back a bit in the last few weeks (probably made worse by heat) and finding it depressing. I wake feeling ok, hope to get on with the day, then after an hour or two I have to lie down. I’m trying to find a professional who has specialist knowledge/experience and can help. It is a long and tough road. I hope the heat isnt causing you too much of an extra burden.
Hello and welcome to the forum @Redfox . Sorry to hear you’ve had a stroke. You’re a stroke baby at 6 weeks so the brain is in the very early stages of healing and recovery and weird things happening aren’t unusual. Lacunar strokes are quite unique from my understanding and it’s common to make lots of physical progress in the first few months. I know I did and I was grateful for that. But I wasn’t prepared for the ongoing sensory issues which are my bug bear. I’ve not experienced despondency until recently (It fluctuates between despondency and hope) and I think that’s ok after 3yrs ….but…..I know that at least some of what I’m experiencing is fixable and until/unless it’s proven otherwise, I shall keep searching for answers and solutions. I’ve recently learned to change tactics when seeking help from medics to help avoid my problems being entirely attributed to stroke and then dismissed. I think, in this current climate, most of us will have to fight for the help we need.
There’s still plenty of time for the vertigo and balance problems to improve and don’t be overly anxious if other unpleasant symptoms show up. It’s most likely your body adjusting as the brain heals. Hopefully, everything will settle down in time and life will become easier.
Take care
Trace
PS It might help to keep simple diary of symptoms. Just a few lines about levels of dizziness etc. I find it helpful to look back to the beginning and realise that I have made progress, even if it’s very slow.
Hi @Redfox & welcome to the community. Sorry to hear of your stroke.
I had a different type of stroke to you but dizziness & nausea were a massive part of my early days (¬ so early days). I too ended up back in hospital for a week a short while after being discharged originally. Another strkke was rules out - phew, but dizziness remained.
It’s good that you have a referral to ENT & really hope they can help as dizziness is miserable.
As others have said it is early days yet so plenty of time for improvements & keeping a diary is a great suggestion. I used to score me fatigue / dizziness out of 10 & when I looked back I could see i was improving although I wouldn’t think I had.
Best wishes
Ann
Thank you for the welcome and helpful responses Ann, Elizabeth and Trace. Yes it’s very early days now. I still get frustrated with myself. One day full of best intentions and the next pure fatigue once again. I wonder if I too become the me pre stroke, then the me now post stroke. I have had excellent support and help from the community stroke team and the Stroke Association. It has been invaluable. I’m currently in that stage of, “Will I get another one ?” It’s normal I’m sure but is always there in your mind. I also suffer from rare brain stem migraines. Many, many years ago my neurologist warned I was a higher risk for stroke due to its very nature. Every time my head hurts now, which is only on the same side as the stroke, I wonder. I now take each day as it comes. Trying to remain positive, even on the down and difficult days. It’s an elite club we belong to now. Not one anyone is eager to join. However sharing and caring with each other is very helpful. Thank you all once again. Enjoy the weekend and try to remain cool if possible.
Hi Redfox - yes, I had severe anxiety about having another one in the first few weeks. It’s receded now (a bit) but I think you just have to live with it. And all the other health worries. I thought I was making good but slow progress but the last two weeks have been tough and I get some desperate lows - I live on my own, which doesnt help. There aren’t any easy answers. It does help (a bit) to know that others are battling similar issues. Take care
Thanks Elizabeth. Sorry you’re struggling too. Can’t be easy alone either. I wish you well and hope the difficult days become more infrequent for you. Take care of yourself.