Glad to hear that this approach is working for you. I personally haven’t felt the need to supplement with the audio but that does sound amazing (excuse the pun).
@Norma_Jean_K and @simonkent2112, Hello Norma and Simon,
As Simon mentioned, stopping once the symptoms become more noticeable is important, rest, and then resume another time when ready. It’s a bit like watching a film. If a friend were to say, ‘Shall we watch another?’ It would be desirable to have a break before taking in more information and emotion. I am still working on these exercises, and I have felt improvement but it isn’t going to fix overnight, and there will be times when other stroke symptoms get in the way. I’ve noticed that I can’t do my exercises very well if I am thinking of other things, my brain just can’t multitask.
Typically, auditory biofeedback is used with electronic devices that measure an activity (be it heart rate, blood pressure, eye movement) and with visual or audio cues trains a person to control those things physically. So, I have adopted an experimental home version just using my voice to give me visual cues to focus or orientate myself. It’s a bit like mindfulness but probably more akin to how athletes go about preparing for whatever it is they may be doing. I’m just trying things out, it’s all non-invasive so can’t hurt. Auditory biofeedback has been used with success to help treat nystagmus, giving people control of their eye movements. It’s a bit difficult to explain, but if I need to focus, I say out loud, ‘Focus’ until I have reached a satisfactory focal point before I move on. ‘Focus’ is my audio cue.
In any case, I have an appointment with my consultant mid-Feb, I plan on getting a referral to the ophthalmology department, and I am going to ask bucket loads of questions. I will report back here with further info.
Hope you both are having a decent week.
Thanks Rups I am anxious today and that doesnt help at all I have down days sometimes. I still go a short walk in sutton park every morning and sometimes my head is a bit better that others but I still feel as though everybody ia different to me. Are your eyes affected only mine are worse when my head is bad. I had double vision until last March. and it suddenly went away. I am under the Queen Eliazebeth Hosptal Opthalmic dept. and am due to go when I hear from them. Hoping you are keeping well Norma.
Hello @Norma_Jean_K, sorry to hear you are having a down patch. These periods creep up and are indicators to take some time out. Yes, my sight is affected, I have nystagmus and blurred vision. But it is all to do with my brain, I went for an eye check-up a few days go. My eyes are all healthy, so don’t need to go back for another two years unless something changes. If only I could have a clear head for a day, it would be wonderful. I also have tinnitus and laboured breathing, these symptoms sometimes get in the way of dealing with other symptoms, so it can all become a muddy circle. I was anxious a few nights ago because of that tight feeling in the head, and I couldn’t get to sleep for hours. If I am fatigued, my eyes can get quite blurry, especially my right eye.
Hello Rups I also have af which is very unpleasant when I get the symptons of that it makes me feel very weak and this morning I feel weak and dizzy. How we get on with life I dont know but trying to see a doctor or even to talk to them is a no no. I feel like you that it would be wonderful to get up with a normal head. I have felt more confident since you messaged me as we both know what the other one is going through. When did you have your stroke. Best wishes Norma.
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Hello @Norma_Jean_K, ditto, over the last three days my symptoms have been very uncomfortable too. I felt very weak and giddy yesterday. Interestingly enough, as I was feeding the cats I thought there was something underneath one of the plates, lifting it I noticed that there was nothing. I then looked at their dry food bowl, and it also looked as if it was on a tilt. I then looked at the tiled ground, and noticed that it looked cambered. There was definitely an obvious impairment with my sight. This was yesterday, and I felt very off kilter all day, and by the evening I was just exhausted. This seems to be a pattern, and I just assume I need to rest as much as possible, although I have dyspnoea, so resting is not so great when my breathing is laboured. I don’t even know what proper rest is anymore. The problem with this condition is that there is no relief from it. If I am sitting up in bed, looking out the window. My oculomotor reflexes (sight) has to operate, my vestibular system (balance) needs to hold myself up, and not only that but my brain will be also thinking (taking in stimulus), so it doesn’t get a break, it’s still firing on cylinders, not all, but enough to make this activity a trial. I sometimes wonder what it would be like to be completely visually impaired, but if I close my eyes I still am wobbly inside and don’t feel right.
I had the stroke in September 2020. So, I am just over one year on my recovery journey. If I look back to how things were in the early months there are some improvements, but alas the irony is that the more I can move about and do things, the more acute the symptoms become because I am extending my brain functions. It’s like adding more weight to the dumbbells, the more I can lift the more strain on the muscles is experienced. When does it end?
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Hi Rups Your stroke is very recent compared to mine as I said it was 2017 so it has gone on for a long time. I had botox in my eye muscles about 2 years ago to get rid of the double vision they cured the vertical and some of the botox spilled to the other muscle and caused horizontal double vision and that is when my head got much worse so I suffered double vision for a lot longer. We are in a bad way but we have to go on. Im sorry about your breathing problems that must be awful. But going back to me I am 82 so have to expect some misery in my life. Norma.
Hello @Norma_Jean_K, personally, I just don’t think there is much research into our condition, and there is no clear pathway for us to relieve symptoms, but I do think it is possible at any age to improve what we have but I don’t know to what degree. 82 sounds wonderful, my father is 84 and going strong. I think even just to be able to reduce symptoms enough to make each day bearable would be a good goal. AF, I imagine is unpleasant. I find the surrounding issues get in the way a lot. I loathe the dyspnoea and tinnitus I have, but it’s all neurological. I’m sorry you’ve had five years with this burden. Although, I am one year post, I spent a lot of time fumbling around in the dark for a year trying to work out, specifically, what was wrong. And I am still trying to work it out but feel I am getting closer. So, I imagine, you like me, have spent a lot of time trying to manage something you were not sure about what it was you had to manage. As I am not a GP and I have no deep understanding of your own issues, I can only hope that in due time, a breakthrough will be made. I hope you are having a decent day today.
Yes today is quite nice. we have been to sutton park had a coffee with friends and this afternoon we go down a country lane and feed lots of birds welove feeding birds. We feed them in the garden daily it is something to takemy mind off this silly head. I hope your day is going well too. Norma.
@Rups @jane.cobley _
@Norma_Jean_K
Thank you for sharing your stories and advice . , I’m humbled by your search to find out and continue to improve .
It’s my first item on the forum , I’m an Occupational Therapist and have worked in stroke/ neuro for 20yrs. Im v interested in Vision rehab and feel it is an area where practice is patchy though improving .
@Rups . It’s heartening to read you’ve found some benefit by integrating vision, sound, and movement and also the need to practice to point of discomfort. This reflects what we try to offer based on what we have researched from literature and borrowed like you tools people have put online . Finding ways to incorporate such activities into the day to day setting is something I often suggest.
Vision rehab is an area in need of development and asking for answers or who can/could provide these locally to you is needed, it’s often from such conversations change happens. Bw
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Hello @kirstyOT, thanks for joining in. I am of the opinion that A) VOR impairment can innately recover over time as it is used everyday without specific tasks, but this could take an inordinately long time as every turn of the head, movement of the eye, spacial dynamics, refraction, and visual noise is constantly changing, and so it is much harder for the brain to resolve each impaired pathway. B) Many stroke survivors may have this impairment to different degrees but do not recognise it as a separate physiological/cognitive issue to rehabilitate, and therefore may not talk about it or redress it, but just live with it. C) There’s a misconception between inner-ear vertigo and cerebral/cerebellar/brain stem damage that tends to tailor physiotherapy toward conditions like BPPV rather than direct neurological damage. D) Most of the really useful and enlightening information can only be found in medical and scholarly studies which for the average stroke survivor is far too convoluted in terminology and theory.
So, in any case, I have been combining VOR exercises and audio cues in a form of exposure therapy to the symptoms in order to try and make some progress. I have an unfounded theory that if the brain compensates senses, such as hearing when someone is visually impaired, then it stands to reason that using auditory cues as an aid to visual issues can only assist the brain with coping with the condition it faces.
It has been tough work, and I have needed to deal with anxiety and disquiet on top of doing this. So, for instance I can do an activity up to a point where the symptoms become quite disconcerting and I start to feel anxious. So, I get hot sweaty flushes, tingly feelings, light-headedness, and a sense of panic. This, I guess stems from the symptoms being so similar to the symptoms of my TIAs and stroke. It is also compounded by the cerebellum being central to the fight or flight mechanism, the primordial response that may have saved me from a sabre-toothed tiger is now warning me against cobble stones.
Another challenging aspect is the combination of nystagmus, blurred and double-vision. The double-vision and blurred vision most likely stem from issues to do with light, eye and head position, and focal points. I have also found that if my mind starts wandering, or becomes blank, or I start thinking over something complex, it jolts my symptoms back into acuteness. I really need to concentrate at every moment.
I know that my issues lie mainly in the vertical plane, and I have experienced this from being at a lower height to a higher height (such as crouching and then standing up), I have visual-tracking issues, possibly a delayed computation of movement when I am in motion. I know I have problems with refraction, as when light changes I take a while to adapt to the change, Patterns and visual noise such as grass or leaves tend to overload my cerebellum. I suspect there are further issues with refraction as some flat surfaces appear curved, and I feel taller when I stand up straight. Despite being only 5,9 there is a distinct impression visually that I am further from the ground than I actually am. This I believe is called stereopsis.
I have had to pay, painstakingly, close attention to every aspect of my body, movement and position in space so that I can identify the specific impairments, and think of ways to recalibrate the brain back into a relatively comfortable way of functioning. Please, jump in and share your experience and wisdom, it would mean a lot to many survivors here.
Thanks for al that very helpful information I will study it later I am busy at the moment I just feel with my problem that everybody is different to me and the trouble is they say I look well and that makes me feel a fraud. I am well I suppose but this head thing makes life very difficult from getting out of bed to getting back in. Its there all day long. Norma.
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Jane it is so nice to know someone understands what it is like. I try to tell my husband when we are walking how awful I feel. I used to walk miles but now I can only walk short distances because of my balance and the way my head and eyes feel. I wish I had a magic wand. Thanks again Jane. Norma.
Thanks Simon, that was a great explanation of how re-educating and opening new connections to the brain works. As my stroke (9 months ago) affected the occipital lobe it is my vision which is most affected, with a blurry disturbance in the upper left quadrant. I can look at things in the distance fairly easily, but short distance, using my iPad or cooking, is a real challenge (I can’t read books, listen to audio)
. My brain can cope when I am inside a building, or a car (it took 2-3 months for that), but when I am walking outside or in a shop with so many things of differing size, shape, colour, assaulting the brain via the eyes 😵💫 slight nausea and discombobulation set in ……makes me feel wobbly just to think of it ! However, as you and Rups say, challenge is the way towards repair and mend. Michael Merzenich has a website called On the Brain which might interest anyone wanting more info — he is professor emeritus, neuroscientist and a leading pioneer in the field of brain plasticity. I am trying out an app based on his research using specially designed exercises called BrainHQ. My poor brain is fried after 4-5 min as uses my close vision, and I need half an hour or more of resting, eyes closed afterwards….but trying with free version so we’ll see how it goes. It’s an interesting challenge.
We all struggle on bad days…I look forward to good ones eventually overtaking the bad ones, but meanwhile love and support to you all.
Virginia
Hello Virginia @Poozle, this is exactly it, as @kirstyOT mentions, vision therapy is at best patchy and we’ve been left with sorting out this aspect of our injury ourselves. It’s hidden which makes it difficult because if you walk towards a door, open it an go outside. Someone else just sees you perform that action, but for you, it is a feat. Not “physically” but “internally”. I use BrainHQ too, and I do find some of the exercises to be useful, and imagine many general stroke survivors can benefit from it. We have two problems, we can see, and we can move. This shouldn’t be a problem but it is because the one isn’t working with the other.
hi @Rups @Norma_Jean_K since initially posting been reflecting ; some orthoptic services specialise in the type of therapy you are describing . National guidance for stroke does recommend all services include orthoptist. For those who don’t know they are an allied health progressional who specialise in visual functions and rehabilitation of these; working with their medical counterpart opthalmologists who diagnosis / do surgery.
Some services then do have developed stroke orthoptic provision so worth finding out if any places local to you do. Interesting whilst our local service provides an outpatient service and advise only for inpatients anther hosptial in the region has dedicated service that also provides rehab . I’ve only recently become aware of this owing to an new employee OT expecting the same level of service where we are.
Have any of you heard of Brocks string ?? I’ve not used it but like eye push ups it works on fixation and eyes working together . Some u tube videos and interesting ted talk from a sue barry who used it.
Metronomes apps can provide auditory stimuli to work with when doing work shifting gaze between to targets increasing speed as accuracy improves .
Going back to orthoptics though I wonder if calling arrange of local and larger teaching hosptial eye department to speak with a senior clinician in orthoptics to describe the presenting problems and see if they provide a rehab service service . Or if they don’t ask who to raise this with . It may be the service isn’t commissioned or the Clinical commissioner for local stroke services doesn’t understand this need. It’s really been the demand of champions to highlight need that has changed service delivery . I remember when I started in stroke in 2000 it was new to even have dedicated units and delivery has been v much focused on improving the admission , urgent care end now there are integrated stroke development networks across the uk and the remit is to improve community ans rehab services , for instance Manchester has been to the first and we are just getting going in Yokrshire . The best advocates are those who have experienced stroke and there will be local way to show this unmet need . I urge you to do so .
Off my soap box
There is a vision website developed by Liverpool University called VISA. with some useful links and resources . Including to the British , Irish orthotic society. This society has a branch who specialise in stroke .
.
However you’re describing what the evidence is / lot and lots practice , repetition , novelty is good too . Keep searching as it’s clearly an emerging area of practice . Bw
Kirsty
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Thanks Kirsty I go to the Eye Department at the QE Birmingham but I am waiting for an appointment as due to the virus I havent been for a long time. My eyes are definitely affected by this feeling I have in my head and they give me a lot of tests as I had double vision for several years. That has gone except at night when my eyes are tired. Norma.
Hello @kirstyOT, thank-you for this post, there is a good deal of information here. I had not heard of Brock string before but it may assist with stereopsis as I imagine that falls under binocular vision. I usually do eye push ups. “Calling a range of local and larger teaching hosptial eye department to speak with a senior clinician in orthoptics to describe the presenting problems and see if they provide a rehab service service . Or if they don’t ask who to raise this with .” - Great idea, I will follow this up. I will link VISA here, and have a look over this week.
Thank-you for popping in, it’s been an eye-opener (excuse the pun). I’ve got to admit, as painful, fearful, and disquieting this condition can be, it’s also quite fascinating. I do have to echo @Norma_Jean_K’s sentiment when she said that she wonders how everybody else feels in their head. It’s a very liminal condition, not quite visually impaired, not quite physically impaired, but wavering somewhere in-between the two as a constant state of being.
Hello @Norma_Jean_K, how are you going? Are you keeping up with this? @kirstyOT has suggested some interesting and useful stuff. I am going through it this week, and will write a post reply with what I have gleaned from what has been written. I have ordered the Brock strings, but I don’t know if they would help your VOR impairment. However, I feel there are two sides of this coin, one is the spatial involvement and the other is the internal echo of that, if that makes any sense? This is in context to your feeling of being ‘out of whack’ from everyone else, and not settled in your head. There are two perceptions, one outward and one inner. To get ahead, both need to be resolved in some way, or at least managed. Hope you are having a decent week.
Thanks Rups I must be thick I try to follow what you kindly explain to me but am having a job following it all. You have got some very useful information but as I am a lot older than you it takes some sinking in if you know what I mean. I am still doing the Brandt exercised for my head but dont know if * am progressing very well. Thanks again Norma.*
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