Good morning everyone this is my first post. I had a stroke over 4 years ago and continue to suffer daily, I really feel that I am existing and not living. After my stroke I had surgery for a pitituitary tumour and was also diagnosed with obstructive sleep apnea which I use a Cpap machine daily. I sleep about 8 hours per night then need a sleep around 3 hours after getting up and need to lie down mid afternoon. I dont always sleep but have so little energy, the smallest of things seems like such a marathon. If I try anything which uses energy (mentally or physically) I pay for it for days. The fatigue really effects my balance, speech at times and my memory is so poor its really worrying. I have to write everything down. If I turn a tap on I need to stay at sink otherwise I forget about it in seconds. Nerve pain is horrendous somedays on my right side which I take 600mg of pregabalin daily for. It sounds awful but somedays I just cant bear any noise, my grandchildren drive me crazy. It even feels wrong saying that ! I have anxiety still and embarrassingly urinary incontinence at times. I dont think things are going to get better at this stage. I have been very fortunate to get a housing association house with a through floor lift as I just cant manage stairs when fatigued, and spent over 2 years sleeping on sofa before moving here. Sorry for the long post, my question is am I alone this far into my post stroke journey, or do others feel the same. I want to speak to my GP to ask for any futher advice or help, but feel I am wasting my time and theres nothing they can do. I did contact my local community stroke team over a year ago and was told because my stroke was so long ago and my symptoms were the same they couldnt see me again. I am very grateful and understand I could have been left worse, but cant help the feeling of loss, that I will never be the person I was. I am 44 years of age and see others my age enjoying life. I really would welcome any similar stories, advice etc. I appreciate you taking the time to read.
Regards
Liam
@Ljb2801 Hi Liam & welcome to the community. Sorry to hear you are having so many issues 4 years after your stroke.
I’d start by saying that progress can still be made many years after a stroke but it might take muxh longer than in the early stages.
My advice would be to visit your GP and go through all your issues. There are people you could perhaps be referred to for some of your problems.
An OT referral might help with your cognitive issues, a urology referral for your incontinence, some pain meds for your neuro pain or a referral to a neurologist, ENT for the noise etc etc.
For my sensory overload I bought loop earplugs. Have you tried something like this?
For the fatigue you may need some blood tests to rule out anything else that might be cauaing it e.g. anaemia, low B12, Vit D etc. If it is purely stroke fatigue then you need to do the 3 Ps pace, prioritise & planning. This doesn’t cure it but helps manage it.
I don’t know if any of that helps but please do see your GP. They can and should help.
Best wishes
Ann
Hi @Ljb2801
Welcome to the community, I’m sorry to hear about your stroke and the difficulties you’re facing.
@Mrs5K has given some a great suggestion about seeing your GP, you’ll be able to get referrals for some of the issues you have been having.
I would also suggest calling our Stroke Support Helpline:0303 3033 100. They have a wealth of information that may be able to help you with some of the difficulties you’re going through. They can also just be a listening ear, if that’s what you need.
I’m sure there will be some more members along to offer more advice and support for you.
If you need anything whilst using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.
Anna
Hello Liam,
You’re right they cannot help. Let’s see if I can. Let’s see if you follow along ! Have you got inflammation ? I guess so, so next essential question… have you tried grounding / earthing ? This is the first thing to address ( then eventually getting off the pregabalin ). My stroke was horrendous too…
Hang in there ! Ciao, Roland
Thank you to all who has responded, theres some very helpful information which I will look into. I have made a doctors appointment for next Monday
Hello Liam. My stroke was over 2 years ago and like you I am continually shattered. Having said that I am a LOT older than you! I also suffer from nerve pain on my left side plus I have this very strange head that feels heavy and stuffed full of cotton wool. It’s like I have a goldfish bowl on my head! The stroke also affected my hearand I now wear hearing aids - when I remember to put them in! I tried Pregabalin and Amatripyline for the nerve pain but neither helped.
I am still hobbling around with a stick which I hate and still paying for private physio but quite honestly I’m not convinced that the physio helps.
None of this is much help to you I know but at least you know you are not on your own with the continual tiredness and strange aches and pains. Good luck and best wishes Janet
Hi Liam @Ljb2801 ,
Welcome to the community and looking forward to see if we can’t help you towards your goals.
I note you have had an excellent response from this community and you have made an appointment to see your doctor next Monday. I sincerely hope you have a good session with your doctor and come back with a plan to move you towards your goal of improving the quality of your life.
It would be nice if you would update us and share your plan.
Wishing you all the best.
Namaste
Hi Janet @Apple ,
I am sorry your physio appeard not to be helping.
Now I do have a question, which is about your physio. Is your physiotherapist a neuro physiotherapist?
It is my belief based on information and experience to date of trying to get suitable physiotherapy for a stroke survivor. Neuro physiotherapists are better equipped to help people with brain injuries which essentially is what a stroke is. They better understand neuroplasticity and rewiring of the brain etc.
It is just a thought and personally, if I was funding my own physio, or even if I was getting NHS treatment, I believe I would be looking to get this from a neuro physiotherapist.
Wishing you all the best.
Namaste|
Hi. Yes I’ve always been under the impression you should have a neurophysio. The first physio I had was a neuro physio and he was great. Unfortunately after 6 months he took a new job and was too far away to continue. It’s virtually impossible to find a neurophysio round here but I have now found a neuro occupational physio who has great references seems very competent and most importantly is very easy to talk to and listens! I am hoping to begin seeing her very shortly. Janet
OK - that’s great.
Wishing you success and an improved condition with help from your new neuro occupational physio.
Hi Liam 
My stroke was about 2 and a half years ago now and fatigue remains my biggest and most debilitating issue, though yours sounds worse - it honestly baffles me so much how differently it affects people. I am much better around the house now but still sleep at random times during the day, and I can’t walk very far before I get tired and s-l-o-w right down. I have to make myself take breaks otherwise I burn out, get run down and subsequently ill, which makes the fatigue much worse.
Sometimes I get anxious and wonder if I really can’t do as much as I feel I can’t, especially if I compare myself to others. I think the psychological impact is really taxing.
I am younger too (35 now) and it does feel like my life is on pause sometimes. I am hoping to attempt a return to work later this year, and still worry if I will be able to function well enough to sustain it.
I would echo as other people have to speak to your GP. It might be worth asking for a referral to neurology, as they are likely to have a better understanding of how brain injury affects people. Something that really helped me was neuropsychology - a trained person to speak to specifically about my worries caused by a neurological issue. Other than that, talking with other people with experience of stroke has been helpful for me too.
Wishing you all the best!