Meniere's monitor
Posted , 3 users are following.
A free app has been developed to help with monitoring symptoms of MD which you can review yourself and share with your doctors.
Those who are in the UK can send their data, if they choose, to Exeter Medical School. They will be cross referring the results with the meteorological office in Britain to see if there are any links to weather, air pressure, pollen etc.
You should be able to find details if you just look for meniere'smonitor, or I can send a link through private messaging if you have it on.
1 like, 8 replies
jo89804 mistibluey
Posted
Hi I got in touch with md society they are great .really useful .. and then found md monitor app which I downloaded on my phone was really useful for my attacks of vertigo which were almost every day and some days multiple. . Had ear steroid injection and thank god not had one since ..it don't last forever but I'm enjoying the freedom from spinning .. but I'm just exhausted all the time .. which I belive is part of md .. still taking beta histamine. . Hope this helps anyone suffering this awful disease..
JMJ mistibluey
Posted
Hi Misti,
Thanks so much for the info. I downloaded the app. I was kind of surprised that it didn't include documentation of vertigo, since that's one of the hallmarks of MD. Instead, they ask about dizziness, which for me, is either a vague warning sign, or part of the "MD hangover". It's curious, since they did address vertigo in their welcome statement. Well, perhaps they think dizziness covers it, and it's enough for their particular purpose - linking symptoms to barometric pressure, etc.
I'm so glad to see this kind of formal interest in MD! I typically note any symptoms on my iCal, and then share a summary with my doc each visit. But I'll give this a whirl if it will help researchers gain more info about the disease.
Thanks again!
Take good care,
J-
mistibluey JMJ
Posted
Nothing about vertigo - really? I'm very surprised. I didn't download it myself because, as you and most regular posters know, I don't have MD myself. Part of my friend's strategy for dealing with this is to not think about it any more than she has to, so she didn't want it either.
Was the rest of useful?
i wonder if they would be open to suggestions regarding how to improve it. Surely the vertigo is the most distressing of all the MD symptoms.
jo89804 mistibluey
Posted
JMJ mistibluey
Posted
Hi Misti,
That's right. The app doesn't allow you to log/measure vertigo, even though they acknowledge vertigo as one of the symptoms in the initial welcome message.
When you open the app....
First, you fill out baseline data: There's a "Personal Information" screen where you enter info like gender, employment status, diagnosis date, ears affected, symptom frequency etc....There's a "Medications" screen where you can check one or more of 5 listed meds (none of mine are on there!). Finally, there's a "Baselines" screen, where you use a slider bar to indicate from 0-10, how you feel on a GOOD day, with respect to Aural Fullness, Dizziness, Hearing Loss and Tinnitus.
Once you fill out the baseline info, you're presented with a Survey. This is the Survey that you would fill out and submit daily: Again, it enables you to document how you feel on a daily basis, on a scale of 1-10, with regard to Aural Fullness, Dizziness, Hearing Loss, and Tinnitus. Additionally, it asks you two yes/no questions: "Do you consider this an attack?" and "Have you done anything unusual?". There are 3 additional screens that enable you to document, again with a 0-10 slider bar, specific info about your Diet, your Sleep, and your Stress.
There's a nice Statistics page that takes all of the given parameters along with the data you've submitted, and turns it all into a very nice weekly graph.
Yes, I think it's useful. I think it's all good information to keep track of for yourself, your doctor, and great for those studying Meniere's. But to not measure vertigo? That's like having an epilepsy journal and not asking about seizures. I just don't understand it. Vertigo is a defining symptom of MD and certainly the most disabling one.
It also doesn't ask you about loss of balance or nausea/vomiting, all of which have been such a big issues with me and with so many other people on this forum. That was surprising as well. Although, I suppose nausea and vomiting typically occur with vertigo, so maybe there's no need to document it, if you're not going to document vertigo. But loss of balance can often be a warning sign of an episode, and it's typically part of the "MD Hangover" that can go on for days.
Take good care,
J-
P.S. I can't say that I blame your friend for not wanting to think about it any more than she has to!!! ;-)
JMJ mistibluey
Posted
I'll try to attach a screenshot of the Daily Survey. Haven't done this before so if there's nothing here, please forgive me!
mistibluey JMJ
Posted
The screen shot came up ok thanks.
On their website it does mention vertigo as one of the 4 symptoms to be monitored. I think they are using vertigo and dizziness interchangeably but, as every Meniere's sufferer knows, there is a huge difference between dizziness and full blown rotational vertigo.
I think it could still be useful to people though.
JMJ mistibluey
Posted
Yes....There's a BIG difference when it comes to vertigo vs. dizziness....They're definitely not synonyms! I can't figure out why they wouldn't simply measure both. But universally, vertigo is the cardinal symptom.
I agree that it could be useful, though. (Especially for their study!) But based on my experience with MD, I would have tailored it a bit differently for personal use, and as a tool for sharing data with my doctor. I like the idea of the graph....especially when you're looking at the frequency and intensity of episodes over time....it would be very satisfying to have that view.