Hi. I’m 54 and had a bleed on the right side of the brain end of jan and paralysed down my left
By mid may my recovery was going well, really well considering it was a major stroke. There was a little bit of stroke, what stroke, improving every day,I can beat you.
Movement was good all round, mentally ok and walking felt close to normal on occasions. Skin sensation for an area often came back after an itch. Then sensations started to go wonky around mid may. Lost regained skin sensation on left side but CT scan said nothing bad had happened.
I don’t think I was ever prepared mentally to go backwards as seems to be the case especially this month and less so in previous two. had read improvements would slow but no one seems to mention deterioration. I’m only 6 months since the stroke and I feel I am in a worse position than 2 months ago.
Now I have quite severe burning tingling in face, muscles in leg,arm, neck etc often feel really tight,can almost feel that tightening happening and may be give just a couple of hours in evening when more relaxed. Recently had some days when bit short of breath. Often dizzy,lifting weaker leg seems to be getting harder. GP cannot find anything obvious wrong.
Number of people have said the journey would have ups and downs but for last 3 or 4 weeks Ups been in very short supply. I am starting to ask myself where this journey is going.
Has anyone else had a journey like this ? Any tips you could share on solutions? Do these sensations ever fade away ?
@Nigelglos welcome to the forum. Sorry you’ve had a stroke. Sounds like you are making great progress despite your setback. I think a stroke recovery path does have many ups & downs & it could be that you are having one of those downs but it is taking a while to get passed. Uts encouraging that the medical professionals haven’t found anything obvious but if you feel like it’s not improving you should go back to them again. Did they say it is a normal part of stroke recovery?
One of the things that has been mentioned to me because I’m not improving as quick as they think I should be is a condition called FND (Functional Neurological Disorder). It has many & varied symptoms & they think mine has been triggered by my stroke. I’m not saying this is what you have but possibly worth a look if they’ve found no other cause.
Hope you get some answers soon.
Best wishes
Shwmae @Nigelglos, yes, my journey has been almost identical. After six months neuroplasticity slows down. I can’t medically explain why in the first six months, sometimes, like you, I almost felt “normal”. But I suspect this is a result of the brain being in high repair mode and the adjustments it is making with the mess it needs to unravel. After six months the residual issues are left for review and rehabilitation as the brain spends less time repairing itself and more time concentrating on everyday life.
Hello @Nigelglos. I would push your GP for a further referral as others have suggested possibly a neurologist. This is something clearly causing you concern. I don’t have any personal experience - I have bad days but usually due to fatigue not neurological changes. I truly believe there is so little understanding within the general medical profession of stroke partly because it is so varied in its’ manifestations. If you have concerns they should be listened to and looked at thoroughly by different specialties if necessary. Hoping you get some answers, Julia
Hi Nigel. Stroke is a very traumatic experience. Progress afterwards is full of yips and downs. Once our brain has been attacked it becomes hyper sensitive to any change in bodily sensation. You have progressed and will progress further, but if your brain focuses on what is not improving you will feel you are going backwards. Like you, six years ago I had a right side bleed which affected my left side. I still have spasticity round the left shoulder area despite having reasonable movement in the shoulder area. Walking varies. Some days I feel it’s reasonable, other days I lose confidence and wobble and totter. Recently I have had two falls, having not had any for over a year. I have to remind myself these were due to errors in judgement rather than deterioration. Please try and stay positive.
Thankyou to everyone who replied. Very much appreciated. It’s good to hear from people who have been in the same boat.
I have now got a neurology referral via the gp but the wait time indicated is something like 4 months.
I have been taking pregablin for the nerve pain but haven’t really been convinced at any point that it’s doing much for me. I tried to increase the dose but it made me so sleepy-exactly as the Dr suggested it might. I feel I would like to come off it if I could. Has anyone else given it up, did you notice any changes ?
Each morning I wake I have a min or two of normal and it feels lovely. No face burning, no dizzyness, head nice and clear. I used to think, wow could today be the day … But after weeks I just enjoy the min or two.
As a positive story I thought I would share this.
When I was in the rehab unit, number of people on the ward couldn’t speak. We had a quiz one evening and my team consisted of me and two people who couldn’t speak or write… We didn’t win. still haunted by not getting malted milk in the biscuit recognition round.
After being in the unit for a while, often passed the same people at the same time. One bloke just down from me, I used to say good morning to him every time I saw him. Got a smile or a nod back. After about 4 or 5 weeks of the same, one morning expecting exactly the same I got back “good morning how are you ?” I just stood there mouth open. So pleased for him. I know I am frustrated by events but not being able to speak for weeks on end, that must be tough.
Thank you again
Aye, can only speak from my own experience but, that morning time I used to look forward to it, before the cogs in the brain got moving and symptoms came into focus. I still have a bit of that morning euphoria but it’s well and truly dampened by my expectation of symptoms. I have cognitive visual-spatial symptoms, so everyday is like being on a houseboat out at sea. I had nerve pain in my right leg but it was caused by Atorvastatin,. The doc put me on Gabapentin at first but I reacted badly to it and another hospital doc took me off it. The nerve pain went away as soon as I switched to another statin, Rosuvastatin. I didn’t fancy taking Gabapentin as my bedside table was starting to look like a pharmacy shelf. I would like to go off statins so that I am only taking two meds a day rather than three. Eventually, I would like to get down to one day.
@Nigelglos thank you for sharing that story. I bet that chap was thrilled about regaining some speech & I’m sure you were equally thrilled for him. It’s great that you took the time to say morning even knowing you’d get no reply.
As for malted milk…I’d never have got that. Along with rich tea I really don’t like them
Hi Nigel, sorry to hear you’ve been having a hard time hopefully neurology will be able to help. I’m on pregabalin it took me a good few months to find the correct doses and times of day to take it, even then after thinking I was finally settled it suddenly stopped working as well as it did and the dosage had to go up a little again. At the very beginning pregabalin used to wipe me out but once my body got used to it I was fine. At times it’s been like trying to solve a puzzle I had notes of times I took it and that didn’t work etc it’s worth speaking to your gp possibly another medication would work better for you, I was firstly on gabapentin but it didn’t work at all for me.
Could I ask, in a few threads across the forum replies have suggested speak to your stroke consultant. Do survivors have regular check ups and the like ? How do you get one ?
I went from one of the main hospitals in Bristol to what was a privately run brain injury unit for rehab, apparently 5th best in the world but who knows what they were measuring for that.
It certainly wasn’t sensation management and given they don’t ask for feedback, I suspect it’s a line that is trotted out to keep the money flowing in. There were such basic things they could do better.
@Nigelglos after my stroke I was told I’d have a 6 week follow up with stroke consultant & then at that appointment they said theyd see me again at 6 months…I had that appointment a couple of weeks back & they said they’d see me again in another 6 months. It does seem very hit & miss around the country. I don’t know if you’ve had a Stroke Association Support Worker contact you but the one that I saw chased up my 6 month appointment for me.
You could always try ringing the secretary of the consultant you saw when you were in hospital & ask them whether you’re due any follow up.
Nigel. I got a six month review with a consultant, but that’s it. My doctor never mentions it and I have no stroke reviews at my local practice. Alas, you are just left to get on with things unless you raise any issues.
After the rehab unit, I have had physio at home. Underwhelming or what. Sessions included ot as well. One was get to know you. Two other shared sessions and that’s it.
I can’t say that I feel any better on the back of it, it feels like the muscle issues and stiffness flare up and that might happen no matter what I do.
I know it’s incredibly expensive but has anyone gone down the route of private physio ? I am not 100% sure of the value and it’s really down to yourself to pursue various exercises ?
I’ve not used private physio yet but it is something I’m looking into as my NHS physio is no longer really helping as it’s do infrequent. There are exercises online & on YouTube that you could look at. The Stroke association did some exercise sessions too which you should find here:
If you have a Life After Stroke centre nearby, they put on exercise classes at a low price. A private trainer/physio is likely to be expensive. Hospitals sometimes provide physio but you need to have a referral from your gp. I go regularly to an over sixties exercise group which focuses on strength and balance. Over 3 years I have improved considerably.
I can’t believe I found this posting, identical to my experience. I’m 54 , had a bleed on the right side and constantly complain that I am doing worse at 6 months than 2months because of new fatigue plus excruciating shoulder and leg stiffness that affects mobility.
Since it has been a couple of months, can you say that you are doing better or the same?
Every stroke is different it seems, I think I was better at walking 5,6,7 months after the stroke than I am now (10 months on) but not better at everything.
I have come to the opinion I can’t believe my body/what my brain is telling me every time. I can push through some odd feelings as they might not be real.
I managed to walk a km over 4 attempts recently despite waking up and struggling big time to walk to the loo.
I am also starting to think rather than a concept of improvement (ie the normal you get hurt and gradually recover to a certain point), it’s more like a get hurt, gradually day by day improve early on and then bang sensations go wonky and keep deteriorating for x amount of time. I haven’t gone forwards overall due to just sensation issues now for quite some time. I suspect no amount of physio or massage will take me forward but it might stop me going backwards.
For example, my leg often feels rubbish, fast pins and needles,loss of feeling in my foot (makes me feel I am trying to walk on one leg),aches,hip or groin pain,struggle to lift my foot properly (not had that issue in months), head thick but get on the exercise bike and this last week on 2 separate attempts beat my previous best sprint time for 1.5 miles or then furthest distance in 15 mins. That just should not be possible.
These were not previous times/distance where I wasn’t trying and was easy to beat, far from it, I was really going for it.
I’m thinking my brain can focus on a target and puts other issues to one side.
If I have improved, why is my walking definitely worse, my balance worse,pins n needles worse,why has my weak side skin now gone hyper sensative but at the same time I can now welly a football,my stamina on the bike appears to be ever improving and I can stand for longer. This week I got up from the floor without holding on to anything. I could also balance on one knee and one hand.
To be honest, I just don’t get this at all.
Just to add
-got on Bristol after stroke group physio and info sessions.
they have got me some free massage sessions to primarily ease shoulder but will cover tight hamstrings.
physio at home has now moved to a more stroke orientated team. Impressed by the first session.
-Less fatigued over recent weeks. Not massively so but noticeably.
I don’t think any fatigue or not feeling great over a couple of days is directly linked to exercise. I can’t see any correlation to times I have pushed myself. Immediately after yes or same day but not any longer than that.
-Continue to search you tube for stroke related videos and especially real time 15/20 min sessions.
-Thick head/baclofen.Tried to move away from baclofen (suspect ineffective) and when I was back to 3 lots of 10mg, very noticeable how much sharper I felt,felt happier. I thought my difficulty walking was linked to baclofen change but after increasing dose back to where it was, leg much harder to lift still there. So now looking to reduce baclofen for 2nd time.
Read much more about baclofen and CNS (central nervous system). The aim with all these medicines is working out minimum dose for max benefit and it’s a real trade off situation.
90% sounds pretty good to me. Well done
Looking back, when the various physios have not found anything really wrong and the massage team today bench marked my strength which was ok, it seems to be either the nervous system or the brain that is struggling.
As baclofen targets the nervous system as will anything for neuropathic pain, I think I have to go as low as I can on the baclofen so that I am not a zombie.
Game on …
@Nigelglos I agree, none of this makes any sense. That’s the hardest part for me. I now no longer know what to do//work on. Wish I had some guidance from a nuero professional who knew of a course of action to reduce stiffness and tingling. I am just perplexed.
still haunted by not getting malted milk in the biscuit recognition round.
