Hi!
I was diagnosed with Persistent Vestibular Migraine about 4 years ago. Controlled by amitriptyline. Started to get break-through symptoms last summer (2023). Have titrated up to 50mg from 30mg. Am still getting mild symptoms on a daily basis. I have a neuro phone call in a month and want to find an app that I can record my daily symptoms on. I looked at Migraine Buddy but it seemed to be geared up to episodic migraine (i.e. when does it start, when did it finish) but my symptoms occur 24/7/365.
Any suggestions, please? I wondered if there might be a Menieres one that might be more suitable?
Thank you!
I havenāt found a tracker app thatās designed for anything other than episodic migraines, and i found them quite useless for my 24/7 symptoms. Unfortunately our 24/7 symptoms are considered rareities in the migraine world (even though itās common for vestibular migraine in particular) and various information, apps and treatments are only designed for episodic symptoms. You could try keeping a pen and paper diary of your symptoms? Or use a regular calendar? I donāt know how helpful it would be to be honest.
I agree with @MissMigraine
@sheepdog_lord also gave me some great advice recently to track symptoms which will help with showing progress or any trends. Iāve been āratingā myself at the end of each day out of 10. Might be worth trying something like that as apps donāt seem to be around for us at the moment.
Any reason why you have āUKā in Topic Title? Does the solution need to be UK specific?
I link a pretty good app in the Wiki (not affiliated at present, but if they are listening!)
Hi! Thank you so much for replying. Very helpful as it saves me looking into all the other migraine trackers there are!
When my migraine first started noone had any idea what was going on. As a lot of my symptoms were sinus/ear/balance problems, I bought a ārealā MeniĆØres diary i found online which was brilliant so Iāll use that. I just thought Iād be more likely to keep an app updated! Very happy to give you a link to the Menieres Diary in case itās helpful?
Iām really doing it because when i last spoke to the neurologist (Nov 2023) he told me to keep a diary. I didnāt start one then as I was titrating so it was changing all the time but thought, now Iāve been on the same dose for 3 months, that I better look like Iām doing what i was told!!
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personally, if its your style, iād just use a spreadsheet. if not something like that the simpler the better
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I can relate. It took me 7 years to get the migraine diagnosis, as I was repeatedly misdiagnosed with Eustachian Tube Dysfunction and wasnāt taken seriously by doctors. My neuro wanted me to fill in a diary but it was basically just a spreadsheet and a complete waste of time but itās part of what they do for treatment - making the choice of whether you can access certain treatments is based on your diary entries and whether they show any improvement. Rating your symptoms of a scale of most debilitating to most mild might be helpful.
Thank you. I first started one because Iād self-diagnosed (largely thanks to this group) and wanted to have it as āproofā when I eventually saw a neurologist several months later 
Although, my description of my symptoms convinced him and didnāt want to see my diary!!
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Same here. I self diagnosed after someone in a facebook group suggested vm. When i saw a neurologist he easily diagnosed me, thank god. Even afyer he asked me to fill in a diary he never actually looked at, just went off whatever i said to him.
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I continue to keep a diary of symptoms because it helps my neurologist evaluate how well medications are working and which to try next. It also helps her justify trying newer (and more expensive) drugs with my insurance company.
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the diary is probably more useful to the patient honestly in terms of helping them articulately communicate their symptoms and progression to the physician. so even if the physician never actually reads it, the communication with the patient is likely clarified and bettered because of it
Iām sure itās useful to some people but from personal experience it was just a waste of time. My neuro gave me a spreadsheet with boxes that just said āheadache y/nā and āseverityā. Intended for people with episodic migraine. The neuros tend to assess efficacy of meds by a reduction in headache days but for me personally with 24/7 symptoms there is no reduction in days only in everyday severity which i donāt need a diary to record. I think diaries are much more beneficial for typical episodic migraines.
Thatās why I liked the MeniĆØreās diary - at that time I had no idea what the matter was and was desperate to get to the bottom of it. The long list of symptoms fits so well with my Persistent Vestibular Migraine symptoms, even including Visual problems, so that I could, in my pre-diagnosis befuddled head, monitor exactly what my issues were. The only one of my symptoms not on there was Toothache/Pain so i just added that in the spare lines at the bottom.