12 months after my stroke, my head still always feels very heavy and uncomfortable. Has anyone else found this and if so, have you found any ways of helping/improving this? The only way I have found to ease it, is to lie down, but as soon as I lift my head, the sensation returns. Any thoughts appreciated
I had my TIA in September 2017 and although it was only a small one I'm told, I am still suffering some residual effects such as tingling in my fingers, my left arm aches, particularly when I'm tired, which is a lot these days. I mentioned at my first follow up appointment that in the mornings it felt like I had a massive hangover where my head was heavy and it felt like it was floating in something when I got up. I was told not to worry about it, but I do. More recently, the last four days or so, I feel like I have pressure building up in my head and I have a stiff neck in the morning and feel nauseous and dizzy. Is this something I should worry about or is it normal post stroke? My eyes feel so heavy too.
Hi Jan
Although we are not medically trained at the Stroke Association, we do know that effects from a TIA should not last longer than 24 hours, so the effects you are struggling with are more closely linked to a stroke, rather than a TIA. I would suggest you speak to your GP again Jan, or stroke consultant at the TIA clinic, but if you do notice any different effects which concern you, specific to the FAST test then call 999 straightaway - https://www.stroke.org.uk/what-is-stroke/what-are-the-symptoms-of-stroke
You may want to contact the Stroke Helpline for more specific support with this on 0303 3033 100.
I hope this helps.
Take care
Vicki
Hi it is 7 months since my stroke my head and neck feel heavy and numb most of the time I have tingling in my arm, have spoken to doctors and consultant and physio and they all tell me it is “normal” . It is worse when I am tired or stressed - rest helps but as you say it always seems to be there I think it is something I will learn to live with - sorry that’s not much help but for me reading your post it has made me realise I am not alone xx
Hi Jan i had an Ischaemic stroke in May 2015 and then a very prounounced TIA 3.5 months later and a few subsequent milder TIAs since, the last being Dec 2016. The symptoms i had with the first TIA were more stroke like than with the original stroke. I would say the effects of TIA lasted about a week despite the 'norm' supposed to be 24 hrs. I did however feel more tired after the TIA for several weeks. With the subsequent TIAs the symptoms did pass within a day or two.
I had/have similar symptoms as you describe. Though most have improved significantly i do still have some of them. From personal experience i know that symptoms of TIA can last longer than 24 hrs but I would agree given yours happened in September then a visit to your GP might be necessary as a precaution.
Rachel x
Hi Sue I am 2.8 years post stroke and what you refer to as heavy head, to me is what i describe as being stroke fatigue. A pressure inside my head and sometimes a feeling that's akin to wearing an iron mask on my face and i can't think straight. I don't always feel like i can lie down when it happens but focusing on something that doesn't require a lot of concentration sometimes helps to relieve it.
Is this something you've had since the stroke? If so has it improved at all in the past 12 months? Or is it something that has started recently?
I found mine was brought on through mental and physical exertion. To begin with it was pretty constant but has improved significantly over time. I found that there were and are triggers that brought it on, so i learnt to pace myself and introduced lots of routine and repetition into daily life which helped.
I still have residual effects and limitations but i am working on improving them.
I don't know if any of what i've said has helped at all but wanted to reassure you that in my opinion the heavy head is a common side effect. However if you are at all worried then i suggest to speak with your GP.
Regards
Rachel x
After three years I would admit that I have similiar problems but they have reduced considerably. When I'm out walking on my own I still feel as though I am slightly intoxicated and have to take great care crossing roads and recognising possible problems. In my early days I would have to wait till a road was completely clear of moving traffic before crossing (You couldn't do that in UK!) but now I can judge when it is safe to cross comfortably without speeding up or stumbling.
Deigh
Hi it’s been 20 months since my stroke and I totally understand the heavy head, I experience this every morning and often throughout the day. I also doubt my judgement when crossing the roads as I’ve had a few near misses...
I’m 42 but feel so old in the mornings, bones are stiff head is fuzzy, takes me a while to get the body moving.
I have an awful feeling this is what I’m now left with as well as other issues post stroke.
Dr’s have also told me this normal
I have now had the letter back from the Geratology Clinic I attended and I can only say that I am not impressed. We spent a good deal of time talking about how I was feeling, but the letter says I have not expressed any concerns. So continuing to have numbness and tingling in my left arm which also aches when I'm tired, terrible fatigue (on some days, not all), being out of breath more, aching legs, headaches, don't count. If it was such a minor stroke, surely I shouldn't be feeling like this after 5 months.
I do now know that my stroke was an Occipital Acute Infarct according to the letter and I had two appointments set up for eye tests this month, but they have now been cancelled and moved to April.
I also mentioned at the appointment that I had now had two brain traumas, my SAH in 2001 and now the TIA in 2017 (caused by the cerebral angiogram I had done to check my 2001 coiling was still viable), but was told that I could hardly count my TIA as a "trauma". Sorry, but it was for me.
I also have new things to discuss at my next appointment including my inability to cope with crowds and noise. We recently did a 2 and half hour trip to see friends on the coast, and had a break at a service station to use the loo. The amount of people in there and the noise left me feeling very confused and panicky as the people became a blur and noise felt like an echo in my head. I was glad to get back to the safety of the car.
All this is making me feel more and more depressed, but I have lost confidence in doctors right now.
Only just joined as I have same symptoms post TIA too. It happened a month ago now and still waiting on tests and been off work too. I don’t feel ready to go back yet as still get so tired but hate actually asking for a note signing me off from GP.
I have another follow up this Thursday at the Geratology clinic and will be bringing this up again. I am having trouble concentrating and my memory seems to be deteriorating at a rapid rate too. Will be interesting to see what they say at my follow up.
This is exactly how I feel x
Regression: After initially recovering I'm told, in leaps and bounds, two months home and I plateaud. Now, one year on I feel I'm regressing. My walking is slow and laboured. Left leg feels heavy as concrete and tied tight with elastic. Left hand is dopey, tingling and drops everything, I cant throw small items 3 inches and even spill food down me. Dressing is difficult and I take two inch steps like they're a foot high! I have this manic laughing which I'm trying hard to control as it exhausts me , but I do wonder, if I didn't laugh, would I cry instead? I don't want to be a burden to my loving caring family. I'm 78 and adapted quite happily to my new altered lifestyle, grateful for each new day. I guess one must accept these things. Sorry to sound grumpy-I'm really not!
I have now had my second follow up appointment at Geratology and in some respects things could be moving forward, but in others not. I had to answer some questions from a short questionnaire and the results appears to be that I am suffering PTSD for which they wanted to send me to the Mental Health Team, but I have requested a neuropsychologist and they have said they will contact a "specialist". Now the waiting game. This, I am hopeful will sort out my low mood.
That's on the plus side, on the negative side, despite being told by my own surgery that I have COPD and am now on a daily inhaler, it is not improving my breathing and I am still convinced this is to do with the tablets I am now taking which they refuse to change. I am not asking to discontinue them, just look at them and suggest an alternative, but they insist I am "on the right medication for my condition". I have spoken to my GP, my local nurse at the surgery and the people at the stroke clinic, but no-one believes the tablets are the problem. The only way to find out is to give an alternative and see if it helps. If it doesn't then I will concede, but I've lived in my body for the last 61 years, I know when things aren't right, and things have definitely changed since I started the tablets. Why won't anyone take me seriously? Two people have now mentioned that I seem to be in touch with my body and feelings, but still no one will take me seriously.
Hi Barbara
You certainly don't sound grumpy, I think you sound perfectly fine considering the issues you're dealing with.
You have only been home two months, which is still early days so it is important to not be too hard on yourself. You say you feel you have regressed, maybe you need to change something or even add something to your week - have you looked into whether there is a stroke club in your local area which you can join? Here you can interact with other people affected by stroke, but also they often run exercise classes, communication groups etc. which would be of great benefit to you. They do not run in every part of the country, but you can search here by your postcode to see if there is one - https://www.stroke.org.uk/clubs%20
Alternatively, your doctor may be able to refer you for further physiotherapy for your mobility issues.
Take care
Vicki 
Hi I agree with you when you say you know when something is wrong, when I had my stroke, I was the one to say ring 999 this is serious, in effect I helped save my life by getting to the hospital quicker.
I am wondering whether you have asked for a Stroke councilor to come see you, they understand how you feel and can guide you to the way forward.
Hope you feel better soon.
Wendy
Hi Barbara - Could you get your GP to refer you for some extra physio? I had my first NHS appointment last week with the neurological physiotherapist. I've been waiting 7 months for this appointment! I went with an open mind and I was quite suprised. They checked me over from head to toe and it turns out my stroke has caused nerve damage in my left hip and lower spine. One thing that really spooked me out was when they aligned everything up so my back was straight and my left hip was level with the right hip, I was actually falling over to the left. They were holding me up so I didn't fall but it was quite scary. They did various moves with my arms and legs whilst one was prodding on the nerves and whatever it was they did, it has almost got rid of the awful spasms I was having in my stomach and legs. I was just like you describe, dropping things and not able to throw things in the wastebin without them dropping on the floor even if I was stood over it.
I know it's a pain waiting for NHS physio but neuro physio may help with the heaviness in your legs and walking. It's hard at times. I felt that I was constantly take one step forward and 10 steps back all the time and never getting any further on and it doesn't help that in my area, I have had to fight tooth and nail to get treatment.
One thing that might also help is if you ask your GP if you can see the Stroke Consultant again. I was seen just the once 6 weeks after my stroke but we should all be seen every 6 months because certain things develop over time and there's no-one to turn to really for advice as GP's aren't stroke specialists and, unless they've had a stroke,they don't understand what you're going through. Keep your chin up and take care x
I find it difficult to get to sleep after my stroke. My stroke was only 16 weeks ago.
I can feel tired but when I go to bed I might sleep for a few hours only does this get better?
Hi Kay, in the early days I found sleep very difficult and woke every hour on the hour. I think it was a fear of something dreadful happening in my slumbers. I was given a limited supply of sleeping tablets and then bought over the counter ones. A year and a half later, I decided to give these up and now sleep naturally for a good seven and a half hours a night. I also need an hour’s rest during the day.
I believe you're right. I find myself thinking I might extend my stroke or develop another complication if I sleep too long. It's only been 19 weeks since my stroke. I haven't needed to take a sleeping tablet and would like to try and avoid them. I'll take your advice and just give myself time to adjust.
Thank you for taking the time to reply and share your experience.