Just saying hi and trying this out
Struggling a bit to find my way round, but always the way with a new makeover


Hello Tony, hope you’re doing all right. It’s still a work in progress around here, I am sure they will tweak things once they can identify the user issues along the way. Hope your week has started well.

Took ages to find my way back in
Down with a bout of fatigue which didn’t help. Second week of it , had had several months almost free of it, but it is back, like it was so taking it easy. Bit of a struggle some days, but I do my best.
Almost gave up on the forum, was getting very frustrated with it. I wasn’t using it much but was always nice to check in to see how people were doing.
Hope things are well with you

Thanks @Jane.cobley, nice to hear from you, we will crack it by hook or by crook. There will be a few teething issues at first, but I imagine the techies are monitoring our use and our opinions, and taking into account further changes that will improve things for us. Hang in there. Hope your week has begun okay. I am just re-surfacing from a symptom heavy patch aggravated by having lost my glasses (now found).

Hello Tony, I’m okay, just been through a patch with symptoms more acute than usual, but it’s always ebbs and flows. I wonder why fatigue does that? Perhaps, if there are additional things the brain has to consider or if it is stretched a little over the limit it has got used to, fatigue sets in again. I mainly feel listless these days, this is mainly because of the effort it takes for me to get through a day. Even thinking about things I need to do can wear me out at times. I know this is psychological and not physical because when something I am interested in or enthused about comes along, my energy levels pick up, and so does my mood. This forum is so important for us all, being able to tap in and touch base with likeminded is anchoring.

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Hello Loshy, well, I can relate. I’m sorry that the shopping experience was so traumatic. I remember once in Lidl, I told my partner that I wasn’t sure if I could cope with a shop or not (it was my first time in a supermarket - about six months after my stroke). I was in the store and feeling overwhelmed, but the thought of having to get out of the store past the tills was also too much, so I gritted my teeth and carried on, despite it being really unnerving. I think yes and no with TIAs, there are silent strokes which don’t show up, but I had six TIAs before my major stroke, and they all were revealed from an MRI. Recently, I had a patch where I was experiencing visual and physical disturbances that felt more acute than usual, these went on for about a week. I then had another MRI (which was already booked months ago) but the results came back as showing no new injury to my brain. This was a great relief, but this week I’ve had a few “funny turns”, the most recent was last weekend as I was cleaning the bathroom with my youngest son. I had the radio playing, my son was bouncing around the bathroom shooting scented spray everywhere, I was being quite mobile and active as I cleaned - suddenly I felt a whoosh of giddiness, a tingling hot rush came over me, and my leg started shaking. I stopped, sat down, and then soon after went to rest in bed. The previous week, I wasn’t too bad, this week symptoms have been more intense. There seems to be a pattern. I had to call on all my rational resources to convince me that the over-stimulus in the bathroom was too much for my poor brain, and it was letting me know by releasing its grips on the ropes.

You’ve had injury in your cerebellum, same as me. For me, I have noticed improvements are quite incremental, whereas some cerebellar stroke survivors repair and adjust quite quickly, but they tell me they still get giddy moments. Conversely, I know of others mending more slowly, and symptoms are prolonged. Our cerebellum has priority contact with our vestibular system and CNS, so we are at the mercy of how sight and movement affects us in our daily lives.

The thing is, I suspect you may have some oculomotor dysfunction causing what medical professionals default to the BPPV diagnosis and the inner-ear (that was the initial diagnosis of the six TIAs I had), so I am sceptical when doctors put it down to vertigo. Vertigo is when the room is spinning, I don’t get that, my head swims not the room. So yes, many times have I experienced what you have, although my headaches have always been mild, but I have had them, the nausea follows the giddiness, that’s just a result of motion sickness. My focus is good because I test it using the nose to finger test et cetera, but my vestibular system isn’t registering properly, and my position or movement in that space becomes a challenge. I think as the cerebellum repairs, there are multiple issues. One example has to do with my gait, I used to shuffle a lot, this is called hypometria, about a month or two ago, my gait improved, and I started walking properly. If fatigued, the shuffle comes back mildly, but on the whole my step is so much faster and able now, however, now my brain has to adjust to the new length of my step, and the visual and motion activity associated with that extended step. This has increased the intensity of my symptoms at the moment, so I am back to more frequent bouts of giddiness (and thus nausea), as well as visual disorientation et cetera.

It’s really hard to distinguish between post-stroke symptoms and stroke symptoms (TIAs or the actual stroke), because symptoms of the strike and the impact of the injury will be the same, but stroke symptoms will be ten times worse. Over-working the brain neurones will naturally cause them to become fatigued, and then the fatigue will intensify the symptoms. Sometimes, we don’t know when we are over-stimulating our neurones, because we just behave as we would do normally. That’s when fatigue feels like it has come out of the blue. For instance, today I was attending a stroke Zoom session for an hour, then I got up to do some stuff, and my symptoms were more pronounced than usual. My brain had to adjust to the new activity, and was also fatigued from watching and concentrating on the computer screen.

I’ve had a year now of ebbs and flows with symptoms, it takes time recognising that “funny turns” are a part of recovery, each time they happen, the brain is making a step forward, doing a little bit of preparation for repair - hence, limited function when they occur, the brain can’t repair and function at the same time easily. Afterwards, a small amount of improvement is made. It’s not easy, and it can be scary. I experience fear more so than anxiety when they occur. It has taken me a whole year to observe the change in my symptoms, and recognise what triggers them to get worse or stay stable. It’s a journey from hoping it’s not another TIA or stroke to feeling confident it is not. Exposure is good, so the more we expose ourselves to things like supermarkets, which are very busy visual places, it affects our proprioception, and things become overwhelming, but the brain will adjust each time we do it. I suspect it also will tap into past experience of that, so will try and catch up with normalising it for us.

Stay brave, and hope you have a light symptomatic week :grinning:

Hi just trying to find my way around here it’s harder them the older one lol


@Mahoney That’s what I’m struggling with.
One of my criticisms of the old site was that posts quickly disappeared and there was no easy way of ensuring that new posts were visible. I was pleased to see that this site displayed ‘latest’, ‘new’ and ‘unread’ posts. However, just as you’ve described, many of the latest posts are actually from some time ago. Presumably there’s a reason why they appear as if they’re recent but it isn’t helpful.

Hi Tony,
Yes, same here - trying to get around the site again;-) I think we will all get used to it again. Hope all is ok, take care, John aka Bert;-)

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Hello @Mahoney, it feels a little like a ghost town at the moment. Irksomely, some older posts have popped up in the Stroke Forum Feedback category from when there was the last forum makeover, I hope current users don’t think those posts are about this version.

You’re absolutely spot on, in the general category, three posts from 2018 are displayed. When selecting the category and seeing the full list, the activity is stated in hours, such as the first post stating 14hr activity, yet no new replies, and the posted is dated 2018. I was wondering too if activity is people looking at the post but not replying. The picture I have attached is from profile preferences, it has options for tracking/watching posts. I personally do not think many people will bother with this, but my query is whether or not it has to be set? I assume these are notifications, and not default settings for generally seeing new posts or latest responses.

Either people are not posting on here at the moment or new posts/replies are buried under older posts. I’m not seeing anyone continuing conversations at the moment, even from posts a few months ago. I did a little test and replied to an older post about half way down a forum category page. It changed the activity status to 2m, but that post stayed where it was, so for someone to see any new replies on that post, they would have to scroll halfway down the page in order to see that someone may (or may not) have posted a recent reply.

Hi @Anthony.Nickson, have you tried clicking on the Latest link in your profile menu? We’re still looking into all the other quirks that have cropped up since we moved data from the old forum. If someone replies an old post it’s pushed up to latest. I’ll do a full webinar to go through Top, Latest and New posts classification.
Here’s what mine looks like.


Interesting in what you say regard gaut, shuffling and hypometria, I have been diagnosed with Parkinson’s based partly on my gait which is slightly reduced yet they, the medics , are aware that I too have had Lucuna infarcts

Hello John, @Headache, the hypometria I experienced has not been something experienced by other cerebellar stroke survivors I know, but because the damage in my cerebellum was dispersed, it may have affected my gait. Whereas, other cerebellar stroke survivors I have talked to, had larger damage but in one part of the cerebellum. What I have read, as a layperson, is that throughout life as we age, we can get silent strokes that do not have obvious symptoms but over time they affect movement such as walking. I did such exercises as counting full steps as I walked, putting islands of cut paper spaced at a full step to step on around the room, crawling, and walking on my knees (inside for the last three!). This seems to have helped my gait return to a full step but it took six months, everyday, for about an hour a day. I still keep up the exercise, but only the crawling as I kind of like doing it.

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