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What do your percentages look like?

Hi all

Just wanted to get a gauge of what percentages look like for others. Not to compare, but it would be great to know! I have a tad of a perfectionist and impatient streak and wonder sometimes if my 50% would be someone elses 70%.

E.g - I would say I am currently operating at between 65-75% - I can drive without issue, I can work on a screen for a prolonged period and mostly I am able to make decisions at work - I am working from home 2 days a week as the office environment exhausts me and causes more fog. I dont feel like ‘me’ though, and my brain feels too slow for my body. Some days are worse than others, I have been on Pizotifen for 5/6 weeks and just hit the recommended doseage. 100% would be symptom free, which if I am honest I think I have only had around 5-7 days since 2018 when this hit - but it was more my symptoms were annoying and ignorable as opposed to being right in front of me.

40-50% for me I am not able to work due to fog and imbalance. 10% not being able to get out of bed

Whats your 60-70% look like?

We thought about adding this to the User Cards but I’m not sure everyone was convinced if that was a good idea.

The problem with your question is you won’t get an answer from those who are healthy enough to have moved on and no longer visit the site so you are likely only going to get a survey of the more sick.

You could also have used the Poll function, but again respect that that wouldn’t be representative of all people who’ve had MAV/VM and used this site at some stage in their illness.

I myself am 98% all the time these days. If I didn’t run the site I would no longer be here very often.

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@turnitaround Thanks James, sorry I didnt know there was a poll function! Technophobe here! Great to see youre at 98%,and you’re right, I have even noticed myself that I wont be on here when I am feeling good. So probs wont get a representative poll. Can I ask you, since you are now at 98%, what did your 65-75% look like? :slight_smile:

Certainly an excellent topic for discussion. A very interesting question indeed. And one I have often wondered about. I must admit to being totally amazed when the Vestibular Therapist I started seeing in 2015 to find she worked totally in percentages. Obviously there may need to be some measure but really with MAV the longer I have been associated with it the more ridiculous the concept becomes to me. I see far too many variables for percentages to make sure unless of course there was some pre-published guidance tables and even then? … Um? Still too many variables. There’s individual tolerance for one and that must play a huge role. My ‘I am feeling lousy’, isn’t yours for sure. And so much more comes through the ‘where have you come from?’ ie how incapacitated an individual was at the worse. And I could go on ….

If I may take your own version as an example which I trust I may, here goes ……

If I was able to do everything you describe which includes driving and negotiating the built environment and working in an office for full days I’d pitch that at a good 90%. Perhaps a bit more. After all what can’t you do? …. nightclubbing, an ocean cruise, skiing??

Agreed 100% would be symptom free. I had three weeks symptom free in March.

For me zero would be full on vestibular attack, flat in my bed for eight days at a stretch virtually unable to move, unable to stand up at all, unable to tolerate any light/noise/smells/vibrations etc with constant room spinning vertigo …. but for somebody who had never been there it would be something completely different. The more I think about percentages the more ridiculous it seems. Your question certainly raises some interesting thoughts not least of all, if I may change the tack slightly, too much obsession over the detail and trying to chart The Perfect Recovery is unlikely to put you into the Positive frame of mind which might best help recovery.

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hehe, the last bit made me giggle. True words! Unfortuntely I cant be in the work environment easily without symptoms. I am a neuro rehab therapist so my colleagues are pretty understanding but I do have to admit, after 5/6 hours in the office I am exhausted beyond measure. I am also definitley not symptom free and often the walls breathe. I also totally get your point about the starting point. I have only ever not been able to move due to a vertigo attack 2/3 times for around 20 mins at a time since this started. Otherwise its more a disequilibrium 24/7.

Agreed, so variable - I often find myself pondering ‘if i could get someone else in my body, what would they think?’ .

Well I am no medic, just a long-term MAV sufferer, and from what I have just read above I’d say you need to remove yourself from that over stimulating environment until the medication has taken a very firm control over your symptoms because all that is currently happening now is that you are taking meds to calm an over sensitised system only to immediately wind the symptoms back up again by overstimulation. Such action will just prolong your recovery. Can I suggest you read @janb’s personal diary. She is probably the most successful (takes Pizotifen incidentally) recovery poster you will find and I would say her career break due to her MAV symptoms accounts for a huge percentage of her success. The longer things are allowed to drag on the more difficult and more protracted will the recovery process be.

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I used that exact figure at one point: My journey to Hell ... and (almost) back.. (See bottom of that post)

hey, I did my PhD in health behavior and a lot of what we do is develop scales to measure scales for latent variables, meaning things we can’t measure directly, like weight or temperature. In this case, as being pointed out is subjective, such as other latent variables, like pain or happiness. Nevertheless you pointed to some
objective measure of it,
meaning, what things you can do despite symptoms. So probably it wouldn’t be a bad idea to develop a scale, 0 - 100 if you will, that could reflect the level of impact of this. With regards to what others have
pointed of who visits the site, that speaks to another dimension or latent variable, the need of support when we are struggling with this, and sometimes this is related to enhanced or returned symptoms. I always look at both, physical symptoms and the emotional/mental toll of them on my life. And of course, it changes with time. I can do a lot of things, so I can say I am about 85% most of
the days, but the remaining symptoms bring me down to 60% some days, because I get sad, angry, anxious. That’s when I am
way less active and productive.

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Hi @dizzy3 - thats really interesting. I did my undergrad in psychology and understand that having a scale, albeit subjective, can help with seeing progress and fluctuations. It has helped me. I was reading your story, and it sounds very much like mine! How are you getting on now? Has there been progress since your initial onset? I am working but do feel limited, and I am so used to ‘firing on all cylinders’ and now its just a struggle to get through the day and feel like i am in the world! There has been some improvement since this started in jan, but it is hard. I was previously having 10 day attacks which got closer and closer together, until bam!

Not an uncommon pattern. To escalate over time. I attribute that, in my case at least, to fluctuating hormones. I had many years with just a couple of self contained attacks/year then the intervals shortened and the attack length extended, symptoms started to kick in between full on attacks until symptoms became 24/7. Then, of course, some people just wake up one morning with full blown MAV seemingly out-of-the blue.

Hi @becs, oh yes, I am way better. That is what I was trying to explain in my earlier post (which I wrote on the phone while holding my toddler napping) but was sloppy. An evaluation of this is totally subjective and relative. If I compare how I feel today right now to the worst day 2 years ago, totally, I would say I am cured. The thing is that the recovery is very slow so I think we forget our worst day and we compare our current symptoms to no symptoms at all. But yest, I am way better, many symptoms are not there anymore or very mild. The thing that keeps going is the rocking, and at certain times of the day stronger than other. My mornings after a good sleep are better. Because of the lockdown, our sleep schedule is all over, and I think I am dealing with allergies (which I never really noticed) so a couple of nights ago I slept like 10 hours, when I usually only sleep 7, and I felt horrible all day. Around my period is also hard, but I don’t wait for it to get me, I take prophylactic. I made my own combo of menstrual migraine prophylaxis after reviewing the guidelines with my mom (who is a physician). Ok, I should update my diary I just realized. I’ll continue there!

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Just to continue the conversation, there are a couple of tools out there developed to measure this.
One is the dizziness handicap inventory:
http://www.rehab.msu.edu/_files/_docs/Dizziness_Handicap_Inventory.pdf

The other is a simple visual scale that the Mal de Dembarquement (which is in many ways similar to MVA) created:
Rocking After Travel? You May Have MdDS - Learn the Signs & Symptoms (scroll down the page)

The MdDS one has been helpful for me, I am always at 1-2 these days and on 3-4 on bad days.

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