I had a stroke in September, which , thankfully was mild, but which has left me with hyperesthesia and intermittent feelings of wooziness. I find it very discombobulating. Is there anybody who has experienced similar symptoms and is now free of them or, if not, how are they coping with them? I have registered with a private neurologist who took me off pregabalin and I am waiting to see him again.
Welcome to the forum. You’ll find the community here normally has an opinion on most things and people’s generosity with sharing and empathy from their experience may support you
Searching for hyperesthesia on the forum show that yours is the first post to mention it by name.
however there are quite a few posts in the topic Central post stroke pain, again sorry that to relate to it . Mainly discussion of aclimateizing through desensitisation by repeatedly exposing oneself to blowing air or flowing water etc.
That thread and the others on CPSP frequently mentioned that pregabalin is prescribed and stopped for many people - But I couldn’t speak to the specifics and I’m not medically trained.
Maybe reading the thread and @mentioning relevant people might find you some answers?
Ps Welcome - what we wish we’d heard at the start might also give you some orientation but nothing specific on hyperesthesia
PPS discombobulated is a wonderful word however my favourite is “gruntled”
@musiga24 hi & welcome to the forum. Sorry you’ve had cause to join us but hopefully you’ll find it a useful place to be.
Wooziness seems to be common post stroke & hopefully it will get better for you in time. 3 months is still very early in stroke recovery terms so plenty of time for improvement yet.
When i get woozy I try & carry on but it depends how bad it is. Sometimes i just have to sit & do nothing till it passes.
I hope things improve for you.
Thank you, Simon. I have read the posts on CPSP, which sounds like the same thing. I will see what my neurologist says on Thursday.
Discombobulated is absolutely my favourite word - I only discovered it about 20 years ago!
Thank you, Ann.
I find the wooziness very disconcerting as there are other things that could be going on in your head which are a lot more serious than the after-effects of a stroke. I will just have to be patient.
Welcome to the forum @musiga24. It’s is rather discombobulating in the beginning. It took me about 2yrs before that wore off, so disorientating and confusing for a long time. So it can and does get better over time, but everyone is unique in their recovery. Only time and a great deal of patience will tell.
I have some nerves that finish up just above my stroke-side eye which are hyper sensitive… there are a few areas that behave like that, in fact. There’s a wire that barely touches my leg (when I use an iteracare wand). Well, when it brushes up against my stroke-side leg I jump, startled and upset from the slightest contact with this wire. I could go on… very little sensitivity, then something out of proportion. Bizarre.
I’m sure there will be many here who if you get something from your neurologist that sounds hopeful.
If you read the CPSP thread then you’ll know that the medical profession seems generally at a loss about how to cope with it - but it’s such a large complex topic and we all react differently to different therapists there is always hope.
I’m interested to hear more about your wooziness. I get why I call spaciness. It generally comes on like somebody flicking a switch. It isn’t dizziness, the room doesn’t spin. Light-headedness might be an alternative term. Before my stroke I told my GP I kept having these sensations and during a research project after my stroke the MRI scans that they did through I had had previous strokes. Needless to say whenever I have a spacey feeling now it adds to my stress.
Do you have any descriptive detail beyond the wooziness as I am searching for how to express my spaciness in a way that the medical staff can more viscerally understand?
Do you think there is a positive form of discombobulated like there is a positive for disgruntled - could we be gruntled and combobulated?
This sounds like the target or goal for '24 to be highly gruntled and completely combobulated
Hi @pando Roland
My understanding was that one of the causes of hyperesthesia I’s that as the brain networks involved are not receiving normal signals and they have a protective purpose that they then imagine the need to protect hence interpret the lack of signal as a strong signal.
@llareggub has (had?) a strategy of exposure to stimuli like the air blower in his car and water in his shower to stimulate the nerves and reset the triggering levels in his brain networks. I believe it was being successful but he hasn’t been posting (although his profile suggests he drops in to read occasionally)
Just a thought Ciao
Hi Simon @SimonInEdinburgh ,
Yep I’m still dropping by semi-regularly but as I’m back at work (from home) full time now I do find that by the end of the day I’ve just had enough of screens TBH.
I’m still doing the sensation re-training that continues to bear fruit (although very very slowly) along with the treadmill for an hour every other day and arm training/general exercises on alternate days.
Whilst I continue to have significant pain issues (600mg pregabalin gets it down low enough to allow me to sleep) and balance/sensation issues I am slowly improving (estimate about 1% improvement a month) so will just “keep on keeping on” as @Bobbi would say
Best wishes to all for a better position at the end of the year than you are at the start
Good to hear it can wear off in time, I hope that happens in my case and look forward to it.
Sorry, I was replying to a different post. Haven’t got the hang of replying to the correct one yet!
I don’t know how to describe the wooziness except that it makes me feel rather unsteady and therefore more cautious when moving around. When it’s really bad I just have to lie down.
I don’t think gruntled and combobulated are nearly as much fun as with dis in front of them.
Yes, that is my understanding too. The physiotherapists who visited me after my stroke told me to hit my arms to stimulate them.
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Thanks, Simon. It’s snippets like these that help me cope. I’m starting to build an idea of how and what this nerve might be going through.
Incidentally, last night was good and settled (after a disastrously plagued previous night) and I managed to walk 750 metres, my record to date. Bad times cause a reaction, and often spur me on.
Have a good Sunday,
750m is fabulous well done
Halfway to a mile