Hi everyone, I’m new here. My husband had a stroke in January and has made really good progress but this last week he seems to be going backwards in his recovery. His headaches are more frequent and he is more easily tired. This afternoon his walking was very wobbly despite using his walking stick. Is this common? Is it something that will settle down or should I be worried?
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@Mamagill
Hello and welcome though I am sure this is a group you would rather not have cause to be part of.
My husband’s stroke was last July and at first he did amazingly well, since then I have realised that the road is bumpy and he has not just good and bad days but sometimes good or bad weeks.
I mentioned this at his review last week and the consultant just nodded and said that’s perfectly normal in stroke recovery. However I have occasionally been concerned incase he was having a Tia or minor episode so can only say if your instinct is to get him checked don’t hesitate.
I am aware how difficult making that judgement is but be assured that medics would rather reassure you that nothing new is happening than miss something.
There are some far more experienced survivors and carers on the forum who’s opinions I value greatly and I am sure you will get some replies tomorrow.
Most of the time if I am worried about my husband I stop and think about what he’s been doing, it’s usually fatigue that causes him to seem to be going backwards and after extra rest he’s on track again. It certainly is a rollercoaster though.
Best wishes, Ellie
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Oh yes, that is very much the norm in the first 6 months post stroke. It’s 2 steps forward 1 step back, 2 steps back if he’s been over doing it, brain fatigue is the bane of our lives.
The brain is processing and storing all that its relearnt. It’s also doing major clean up and repairs to the brain so it’s currently running a reduced service and will do for some time 
I don’t know how many times I fretted I was having another stroke or TIA over the first year, and I’m 4yrs post stroke now.
But if you are concerned he may be having another stroke or a TIA it would do no harm to get it checked out at the hospital. As @elljay1 has said, they would rather check him out and reassure you both that its normal for his condition than run the risk delaying any treatment necessary. I had to have several checks, blood tests, MRI for my headaches but they couldn’t find any cause. I now take magnesium glycinate for it and that seems to keep it at bay, though it’s not a cure. If I stop taking it, it comes back.
Welcome to the forum 
I’m sure there will be many other members on tomorrow too 
By the way, if search for the word “fatigue” using the magnifying glass above 
there is a lot to be learnt to enlighten you on the subject in many existing posts on here.
Also, if he’s been assigned to his local stroke team and you have their number then give them a call tomorrow to discuss your concerns. That’s what they are there for
Lorraine
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Hi @Mamagill
Welcome to the community, I’m sorry to hear about your husbands stroke and that his recovery seems to be going backwards at the moment.
We do hear often from stroke survivors that they sometimes feel that are going backwards, as has been mentioned this is sometimes down to fatigue which you can read more about on our webpage.
I hope some of the responses here will help to put your mind at ease and I’m sure more people will be along soon to offer their experiences with this too. As @EmeraldEyes has also mentioned you may find it helpful to read other peoples stories about fatigue or going backwards by using the to search for some topics.
If you need anything whilst you’re using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.
Anna
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Hi @Mamagill sorry to hear of your husband’s stroke but welcome to our community. Unfortunately stroke recovery is a long and difficult journey and he will have times when things are going well and the next minute you feel like you are back at the beginning and it’s very frustrating 
This is completely normal and is usually related to fatigue.
As others have said, it’s always worth getting him checked over if you are really concerned. Better to be safe than sorry.
I hope things will settle down soon and he can get his recovery back on track.
Best wishes and regards to both of you.
Sue
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My spouse and I have a key word, phase that indicates when I’ve hit issues that is I’ve gone 2d which mostly happens when I’ve not drunk enough water and not hydrated enough my face body feel rubbery, water really is brain food and in my first year a lack of water was very noticeable. Hence us adopting the phrase… it was for me the defining factor in my forward or reverse momentum, im not saying that is the same here but there might be a common denominator that helps readjustment to this new horrid norm… I hope you are able to find a way through the maze a stroke presents all of us.
Sending happy thoughts
Nicky 
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Hi @Mamagill and welcome to the community. Sorry you’ve had cause to join us but I hope you find it a friendly and useful place to be.
What you describe is fairly common in a stroke recovery journey. As people improve they tend to do a bit more without reakiaing it & for the brain that might just be a little too much. I always kept a diary so I could look back at what I had been doing. It helpede identify the fatigue trigger ao I could adjust for next time.
There is also a thing called syroke decompensation that can occur. Have a look at this link for more info.
As with everything if you are at all concerned that it may be something more then you should seek medical advice.
Best wishes
Ann x
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Thank you everyone for all your advice and kind thoughts. It certainly is a maze to be negotiated and renegotiated again and again. My over anxious brain has really been calmed by your responses. Best wishes to you all
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Good to hear everyone’s comments have helped to calm your mind a bit. You’ll get used to what is normal and what you need to be concerned about as time goes along.
Best wishes
Ann
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Hello /@Mamagill - Welcome to the community.
So glad joining this community has helped calm your over anxious brain.
Wishing you and your husband all the best,
Namaste|
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This post is very timely because that’s just how I feel about my husband. His speech has deteriorated after a good start and I have had two phone calls from the speech therapist about it this afternoon. She thinks it could be fatigue although he sleeps from approx 11pm to 8 am and has another two hours most afternoons.
He is also drinking less fluids which doesn’t help and last night he was so fed up he said he was going to stop taking all his medication (20 pills a day) and if he has another stroke or heart attack so be it. It took several hours to persuade him to take them.
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That’s incredibly huge weight for you big to carry is there any one who can help you both unpack what is going on and help find a solution.
Sending warmth and wishes
Nicky
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Hello @Trisha2 - I think Nicky @NckWhlr is right and this is a huge weight for you (both - you and your husband). Is there anyone else who can help out?
Also, I wonder if your husband’s medication should be reviewed. It seems to me that 20 pills a day is quite a lot and I wonder if they are all necessary.
I suggest you talk with the GP to see if anything can be done about this.
Is any of this new medication?
It may be that there is a conflict with these medications resulting in a side effect that leads to mood swings, depression or other things that would upset your husband.
Certainly, if it is fatigue then plenty of rest is recommended - don’t go by the 11pm to 8am sleep. It may be that his brain needs a lot more time to recover and so even if your husband sleeps longer that would likely benefit him.
Fluids - again, your husband should try to drink plenty of fluids.
You will have seen from other posts stroke recovery is a marathon and not a sprint. If I am not mistaken, it has not been that long since your husband had his stroke and depending on the severity, you might be at the start of the journey to recovery.
There is much to think about, but you both need to take some rest and I would definitely want a review of the medications if I was in your shoes.
Wishing you all the best.
Namaste|
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