Please rely on the Like button in preference to short thank you posts or confirmations, it’s much more space efficient and succinct and will get your intention across just fine.
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Hi Katharina,
Re VRT, I’ve been practising various forms of these exercises for nearly three years. Following a sudden attack of vertigo in 2018, I was diagnosed with BPPV and advised to perform Brandt-Daroff exercises which I did dutifully 2-3 times a day for nearly a year. I was never fully convinced about the diagnosis or the exercise regime (long story) and consulted an otolaryngologist privately who diagnosed “incomplete compensation following acute labyrinthitis" (bit of a mouthful, I know!). He recommended Cawthorne-Cooksey and gaze stabilisation exercises which I have been doing for around 15 minutes, three times a day (go on, sometimes I miss one) for nearly two years. Haven’t worked out how many head turns this has involved yet!
I noticed an improvement in my overall wellbeing within a week of starting the exercises although as of the end of last year, I concluded that my condition was no better and no worse since that time. I hadn’t had any vertigo since I started the exercises but I still experienced very short (eg. one second) “flutters” most days as well as my other symptoms such as supermarket syndrome, light sensitivity, brain fog and generally feeling unwell. That said, I hadn’t had much vertigo anyway since the initial attack in 2018. (There’s more about this in my personal diary in case you want to read the full background. I can’t find a way of linking to it from within this post. … your wish is my command🧚♀️. (Each user needs to achieve a certain Trust Level before they are able to create links. As you are still basic it’s not currently possible)
John’s Diary
Around a year ago, I became aware of discomfort in the back of my head. Initially I thought this was part of my overall condition but as time went by the discomfort got worse and spread to my neck and up to my temples. I’m choosing my words carefully here. The discomfort wasn’t bad enough to warrant the regular use of pain killers. It was just uncomfortable and obviously a sign that something wasn’t right. Eventually, however, it got bad enough to refer to my GP who agreed that the cause was probably the VRT so I cut out those exercises that involved neck movement.
Unfortunately, by this time, I had reduced my medication due to the possibility of it compromising the effectiveness of the VRT (another long story) and at Christmas I had two bad episodes of dizziness (one swaying/ lurching, one spinning) within the space of 4 days. Back on full medication, I resumed the Brandt-Daroff exercises (possibility of BPPV according to my otolaryngologist) combined with a reduced set of Cawthorne-Cooksey/ gaze stabilisation.
Since then, I haven’t had any severe dizziness (touch wood) and have tried to return gradually to a full set of VRT exercises. Unfortunately, as I do so, the neck stiffness/ soreness comes back although it isn’t as bad as it was just prior to Christmas. Anyway, for better or for worse, I have now stopped the VRT completely to give my neck a chance of recovery.
If there is one bit of VRT I definitely found helpful it’s the gaze stabilisation exercises. These were the most effective in provoking my symptoms. Unfortunately, they are highly likely to have caused the neck problem!
Something else I find helpful is swimming. My otolaryngologist recommended it along with the VRT and I went regularly until Covid came along. With lockdown easing here in the UK, I’ve now started again and find it helps with the stiff neck as well as the vestibular issues.
Another approach I’ve tried is the use of optokinetic exercise and immersion videos. This is straying a bit from your original post so I won’t say too much more for now but if you think it might help, I’m happy to send you some more info and links.
Overall, I’ve found that some of my symptoms have diminished in intensity. The lag I experienced when turning my head and focusing on an image seems to have reduced and I’m hopeful that the supermarket syndrome is improving as well (still a bit too early to tell for sure as I’ve kept well away from stores during lockdown).
Finally, I’d just add that I have not been diagnosed with VM or MAV it’s just that I seem to have a lot of the symptoms.
Anyway, I hope the foregoing is of some use to you and do get in touch if I can be of more help.
Regards
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Sorry to butt in…but VRT related
I wouldn’t mind if you sent me these links. I’m looking into optokinetic nystagmus as I’m STILL having problems tracking movement without my eyes twitching!! Does optokinetic exercises help with this? Happy for you to message me so as to not stray too far off topic
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Interesting. I have always had problems with stiff neck muscles. They don’t respond to massage, massage is actually painful for me if it’s anything more than a light touch.
On a side note, today is day 1 at VRT.
This is the first time I’ve encountered this term, (I did search the forum for it before posting this) but if it means getting dizzy walking down an aisle with head turned scanning the items on the shelf, then add that to my list of symptoms. Last Friday we went to Costco and I had this set off a really bad attack of VM that sent me to bed for four hours. On arising, I felt slightly better but did not clear the attack until sometime that night in my sleep.
I have found a “cheat” that allows you to quote from one thread to another, but I think it could be confusing unless you also pasted the link to that thread.
Quote the section you want. That will open a new message at the end of that thread. Copy that quote portion being sure to include the braces at the beginning and end. Discard the new post, and move to the thread where you want the quote to appear. Start a reply to the message and paste in the text from the clipboard. If you do this, be sure to include the link, as I doubt that the quote will link outside the current thread. I could be wrong about the quote linking since I haven’t actually clicked on the quote to see.
I’m glad you did “butt in”, I’m interested in the links as well. I can’t read a book anymore because prolonged eye movement back and forth trips my eyes out. They begin to move back and forth uncontrollably and I have to close my eyes to make them stop. For some weird reason, reading my phone or iPad doesn’t do it.
I’ve moved @Dizzi-Tired post to a more appropriate thread. ‘Supermarket syndrome’ is also often referred to as ‘Grocery Store Syndrome’. In fact it’s all part of the Visual Vertigo phenomenon. More info on it can be found under ‘Optic Flow’. It’s particularly common with vestibular conditions and in people who are visually dependent. Its often treated with VRT.
Thank you very much @Dizzi-Tired for your comprehensive answer!
I am familiar with the Brandt-Daroff exercises, but not with the Cawthorne-Cooksey and gaze stabilisation ones. I understand from your diary that you got these exercises from the internet, are you able to provide me with a link please? I’d like to try some of them.
I saw my neurologist today and she felt that VRT would not be appropriate for me. I only have some background dizziness and a stiff neck, but I’d still like to do some of the exercises at home (that is why I am keen to get the link). The neurologist said that I should consider playing table tennis. That was a surprise suggestion to me, but I can see where she is coming from.
Swimming, @Dizzi-Tired is an interesting one. I like swimming, but have not done so since my major attack in May. My fear is that I might feel disoriented in the swimming pool, because there is nothing I can hold onto if I feel dizzy. But I might give it a try once we are into spring - thank you for the suggestion!
@TexOkie, I understand from your diary that your VRT went well. I’d be interested to know how you go on your next appointment.
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You’re welcome. There are lots of copies of the Cawthorne-Cooksey exercises online. They are all basically the same thing but I prefer the Brain and Spine uk version. I’m not allowed to put links in my posts but let’s try this:
The domain is brainandspine. Put www in front of it and dot org dot uk after it. Then go to the publications page and select fact sheets. You should find vestibular rehabilitation towards the bottom of the list.
Re swimming, I enjoy it too! I went yesterday and, I have to say, it really screwed my head up! But I think that’s the point. The idea is to exercise the vestibular system and it certainly does that. I think if you do decide to start again maybe take it easy to begin with? I probably overdid it yesterday. Have only been 3 times since lockdown eased and I swam for 30 minutes. Probably not fully used to it yet.
Re the list of Optokinetic exercises, I’m working on it but I suspect the administrators might move it somewhere else as they have done with the following.
@TexOkie. As you can see, my reply to your query about “supermarket syndrome” has been moved! I hope you’ve seen it. If not I can message you with the info.
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Here is the one referred to above. These were the original VRT exercises from way back. 1940’s if not earlier.
@Onandon03. Many thanks for putting the link in. Both @Katharina and @Belindy have asked for links to optokinetic exercises. Please could you advise the best way of doing this given that I’m not allowed to put links in posts or messages?
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PM me with how to locate them and I will load them. No probs
Thank you @Dizzi-Tired and @Onandon03. The exercises look very straightforward and I’ll give them a try. I also usually swim for 30 minutes, but I’ll take up your advice and try for less once it is warmer here.
A friend of mine came up with the idea of getting some juggling balls and learning how to juggle. And I saw an interesting video on playing table tennis by myself. Here is a link: Practicing Alone in Table Tennis | PingSkills - YouTube
I think both the juggling and the table tennis practice will also help with my rehab. I’ll let you know whether they do.
I’d recommend that you follow your neurologists suggestion and leave VRT alone until such time as she feels it’s appropriate. Certainly try table tennis and walking outside which is in itself excellent VRT or any other natural movement type exercise (Tai Chi is basically walking) or even look out for balance exercises, the U.K. NHS website has loads rather than going against the neurologist’ s recommendation and attempting DIY VRT either Cawthorne-Cooksey or off the internet. Unsupervised exercises most particularly eye exercises can most definitely make balance issues worse. Juggling might be an option for some. From my own VM experience I’d say if anybody with VM can effectively juggle then I’d doubt they need any VRT anyway. They really cannot have much wrong with either vision or coordination.
Love that idea! Very good for symptom distraction too!
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I can’t imagine even trying to juggle. Before all this started, I tried to learn, and I couldn’t even learn to keep two balls in the air, much less three or more. It was horribly frustrating.
But then I’ve been a clutch all of my life. Perhaps the VM was working on me way back then?
Me too @turnitaround. It was so unexpected and I had not read about it anywhere. After breakfast today, I am going out to buy table tennis bats, balls and juggling balls as well.
I have a few jigsaw puzzles at home and I love doing them. However, I find that it is difficult to keep a good posture when I am doing them. My neck gets quite stiff (and it is already stiff), so I can only do them for very short periods of time.
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As of Thursday, I have completed two VRT sessions and done the exercises on my own once. I’ve never had a period as long as I’m currently having where my symptoms were so bad. It’s as if the VRT is exacerbating the symptoms and about the time they settle back down, it’s time for another session. I’m not sure I can take this for six weeks, especially on the off chance that it might work.
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VRT is a long process. It’s not a quick fix and it takes weeks to months to begin to see a difference. You should only be ‘just’ triggering dizziness in your exercises or you are going too far.
You should also be pretty stable/at baseline before you start. Definitely not mid attack.
Take it slowly.
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