Calling all Thalamic stoke brothers & sisters

Hi all, this is my second post after my RT Thalamic stroke almost 7 months ago. Things have been good I suppose, the Neuropathic pain is still there with Pregabalin being the only drug offered for the time being and I keep getting Cardiac Investigation appointments at the hospital but still haven’t seen a consultant, spoke to one but that’s it!!

My question to you is how is it that I feel worse now than I did before ? My shoulder is really tight, my arm, leg chest, shoulder completely numb but the new one 6 months later is that I loose my balance at the drop of a hat!! I don’t get dizzy I just loose my balance :man_shrugging:t3: I recover almost instantly and it’s like it never happened… The GP says it normal and to be expected but doesn’t really help.

I’m just need your Thalamic stories please, I know I’ve been lucky in the Stroke lotto as things could be so much worse :grimacing:

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Hi @jay.langdon
I’m not sure tying advice to “thalamic” improves your chances of hearing relevant experiences - if it does then your best bet is to use the magnifying glass to find references :slight_smile:

Ciao
Simon

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A thalamic stroke isn’t a common one to find info about. I’ve searched too many sites and have read most of the posts on here with reference to it… As I’ve said before it just keeps giving with no outwardly obvious symptoms but plenty that are hidden .

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Hi Jay, I think it’s the same as I had. I had left anterior thalamus. I too have been trying to find out about it. The stroke nurse who told me I’d had one told me it was a naughty one and moved her hand up and down as if on a rollercoaster, she said I would have more. But that’s all I know, and like you I want to know more. I’ve got an appointment 5th February so I’m hoping I’ll know more then. Sam x

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I hope you’re appointment on the 5th goes well and you get some answers. My only Consultant appointment was a 5 min phone call then it was back to the GPs who I’m sure don’t know what to do with me as I look completely normal, it’s whats inside is broken… I try to explain things to my wife but again I don’t think she really understands the feelings that I get.

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Jay I am exactly the same! I look fine, but like you I’m not the same inside!! It’s not until I started doing things I realised there were things I struggled with , reading long passages, processing it all, logical thinking used to be a strength now I struggle. Anxiety, and like you shoulder and upper arm pain. I’ll let you know if I learn anything else at my appointment. Take care x

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That’s something I’d not thought of… I was a HGV attic driver until my stroke but obviously lost my license the moment it happened. I only had 4 weeks off work as that’s all they would pay me but they did give me a job in the office on nights, nice eh!! I struggle with processing the new info, even after 6 months of doing it I have to time out to think about what I’m doing (Even looking at another window on the pc). For me though, I have started to run again, I did run marathons and do trail runs but am now back to C25K. Running with a numb leg and foot is interesting :face_with_peeking_eye:

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One of my strokes was thalamic, but I doubt is I can be helpful much. I had very many strokes at the same time from Endocarditis. It caused an embolic shower, which is clots of bacteria and blood shooting all over throughout the arteries and veins. Only one of my strokes was hemhorragic. I don’t know which areas caused which effects.

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There are some unfortunate pain outcomes with thalamic strokes. Tingling, numbness and for some this will turn into a burning sensation.

My own experience is that the pain fluctuates in severity but also where the pain sensation appears to be. I use the word appears as this is not an injury in the arm, leg, face etc

The thalamus was described to me as a main line railway station where lots of information flows through, all your sensations information. Perhaps it is not associated with so much in the way of physical disability, only a guess.

I have tried amitriptyline, nortriptyline and now duloxetine on top of pregablin. The latest suggestion is to drop duloxetine if now apparent in 2 months and increase pregablin. I am exploring the psychological angle as well as mirror therapy.

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How’s that been going?
What resources have you been using? (Besides a mirror :grin::mirror:

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Afternoon Simon
I move in to using the mirror in mid Feb. At the moment I am in the imagination phase. It’s pretty easy to think, is this going to work …

I have been imagining over and over picking up a glass from the kitchen worktop. What the glass will feel like in my hand, what temperature will the glass be, the ridges on the glass, quite a lot of detail.
I have supplemented the guidelines with making small movements with my arm and thinking what the drink might taste like.
I have sat for a min or two just looking at a glass on the surface and thinking.

To my surprise, it seems to give a mild reduction in tingling after a week. Is it mindfulness? Perhaps something for the toolkit to battle pain. I get the feeling with this phase and the mirror phase to come that you do need to put the hours in.
Cheers
Nige

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Yesterday I came across a YouTube channel with a neuropsychologist who impressed me more than all the other YouTube creators put together

Within her incredibly large collection of videos is this one

On this link https://youtu.be/v6l2ul4ola0?si=SbmvWGfj6M6QhM-C

@Nigelglos @llareggub @stokiejoey @Mbhope @RuOxley

There’s more meaningful stuff said about Central Post stroke pain than most other sources - but not any direct strategies or tactics for removing it

Ciao
Simon

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Thank you for sharing this Simon, it’s great to finally hear someone talk specifically about my kind of stroke! :blush: x

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And when you listened to one or two of hers you realised that she is in a league of her own in terms of the holistic approach, ditto conveying it. I’m impressed by her lack of “mums” and “You know” types of verbal litter :slight_smile:

I was particularly struck by the repeated idea of stroke happens to the brain not the mind. Also the references to REM sleep. She’s only the 2nd professional I’ve heard referring to the clearing up of necrotic tissue - but she added that there is a second immune system for the brain which is partitioned from The bodily one - that was news to me .

I think she will repay listening to whereas others have conveyed much less, even if they knew it themselves I haven’t put it across.

Ciao
Simon

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There are so many interesting videos on the channel, if this was a project team we could divide them up between us and tag them to show what they cover/reveal.

How many of us might benefit from this one ?

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Yep it was a good find wasn’t it :slight_smile:

I’m claiming 100% of the credit for finding this

Haven’t watched the one you’ve linked to yet but I did have it on the on the to watch list but then there are a lot on the list on this channel

unlike other channels I haven’t watched and then being disappointed I’ve watched and been more encouraged

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16.40 if you wanted to skip to solutions
Covers
Medications
Exercise
Sleep
Culmalative impact of trauma
Blood sugars + B Vitamins
Cognitive rehab

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70% of stroke survivors suffer from sleep apnea and a large majority don’t know they do.

Given that’s the case, why wouldn’t post stroke care offer a sleep test, perhaps at 12 months, as a matter of course ? Given how serious it can be as stated in the vid, why not. Bit of prevention.

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Thanks @SimonInEdinburgh - this was extremely useful !!

I had a TIA in the Thalamus two years ago - and have been searching for details about it ever since. It was very strange hearing someone describe exactly the symptoms I had - but also just redoubled my perception of how lucky I was. I have no after effects ( other than the cardiologist won’t let me run).

Thanks again

Keith

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I try to help where I can :slight_smile:

I’m glad you haven’t got lasting symptoms - you do seem to have been very lucky if that is the case.

so nice to hear somebody being lucky :slight_smile:

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