This is something that’s been puzzling me, but maybe it’s a good sign. Two or three months in or so (I’m now about 5 months in) I noticed something changed about my dizziness: I wasn’t dizzy straight away when I woke up any more. Now I get 30 minutes or so of almost normal, dizzy free walking and standing. It’s bitter sweet every day as the dizziness creeps back in while I prepare breakfast (and this is before I’ve eaten anything, so not diet triggered as such I think) and then I’m basically dizzy for the rest of the day. I was wondering if anyone else has this, what your theory about this is, and also maybe if I can “ride” on this dizzy free half hour to extend it ?!
Yes, indeed. I’d say that’s Your First Sign of Recovery. From my own personal experience, that’s just how it happened to me with Propranolol too. Not first thing in the morning with me though but later in the day. I could plough through my diary to check exactly when but from what I remember.
After being 24/7 dizzy plus myriad of other symptoms for over three years, and after 8 months higher dose Propranolol, suddenly I noticed I’d get perhaps one and a half hours dizzy-free and then back it would come. Suddenly it would be as bad as ever but seem worse because of that lovely little break from it. Then, just like you, I’d wondered what I could do to stop it go away or what I’d done to make it start up again. I think the answer’s nothing. I think the meds at first just struggle to maintain it. With me, very gradually, over a period of a month or six weeks, the non-dizzy periods extended in length until the dizziness stopped being constant. It will still return once over-challenged for a long time, but no longer constant.
Oh, Well done for perserving. I am SO PLEASED for you. Just don’t try to dash about ‘catching up with things’ during the good periods. That’ll set you right back, Just keep your same activity level throughout. You are getting there at last. Helen
same here, that is how it has been with me, first it was a few minutes, then longer, etc. I think now I can do all morning activities basically dizzy free. Then rocking starts but it also goes down at night to where i feel it but doesnt interrupt my night. I even stayed working last night till 1 am, not good for anybody, less for mav like us, but had to do it. Today i am not feeling great but I think it is of course because of my lack of sleep. Enjoy those minutes, they will start to become longer hours.
This was the first sign of recovery for me as well. But then it stayed that way for a quite a long time, despite trying everything to “extend” it, so don’t get frustrated. its good progress!
Thank you all, that’s so encouraging! I’ve been “stagnant” at those thirty minutes for a good two months now but @ander454 it helps to hear it stayed the same for a long time.
Ah, so you’ve had this dizzy-free free period pre-Propranolol so I very much doubt the Propranolol’s responsible for your success. Doesn’t work that quick. Guess your body is resetting itself which is an even better sign. Once the Propranolol kicks in, you should see great improvement. Helen
I am on no meds as of yet and mine has only been persisting for 6-7 weeks but I have noticed this pattern as well. The mornings are aways better and then I get a strange sensation and I start bouncing again—some days I get a 1-4 hour reprieve and some I only get 30 minutes (some none at all) but mostly the mornings are my best part of the day.
Mornings are best for me too whether on meds or not (generally). Perhaps our brains and eyes are more rested after sleep and then when we have to use our senses again to sort out what is happening usually with visual dominance the MAV kicks as the brain stem becomes “irritated” by the confusing signals (from eyes, ears and muscles)
Strange how we are all so different. Maybe it would be significant to a medic who really knew something about MAV. I am always at my worst first thing in the morning, both pre meds and since being on meds. For ages I was saying the exact opposite of @sputnik2, that I would go to bed feeling fine and get up feeling as if I had to relearn the art of balancing on two legs from scratch every day. In fact after years of taking propranolol always before meals I have this last nine months eventually pushed doses around to spread the drug over 24 hours as near as possible and by taking my third dose of the day at 9.00pm I now feel slightly better in the morning. Every acute MAV attack I’ve ever had as yet has always appeared to start on waking although many I think actually started during the night whilst I was asleep. One might dream one had vertigo and awake to find it a reality.
Pre-meds I was really badly affected by MAV, 24/7 dizziness etc, all day everyday but always worse than ever first thing. It would certainly feel as if the MAV would become more irritated by exposure to various generally unavoidable triggers throughout the day, and I’d always be better in the evenings ‘once the curtains were closed’. Some of that would be because that created consistent light which helps photophobia. I used to sometimes wonder whether some of that might just be because I felt I’d accomplished something, I’d survived yet another day and looking forward to a good night’s sleep. Despite dreams sometimes, I sleep extremely well. Helen
For me I think it’s maybe because I have a silent headache free dizzy migraine start every day around the same time, maybe because my brain simply can’t cope with much yet and so 30 minutes in it’s already triggered… and then the rest of the day I’m dizzy.
Helen…again something in common. Worse on getting up and improved by evening is the pattern i follow. Even on ALL my combination of meds and treatment im still very dizzy getting ready for work each day.
The first few minutes of each day I’m nearly symptom free, but by the time I’ve finished breakfast, all of my symptoms (dizzy, headache, nausea, tinnitus, fatigue, etc) are back until the next morning. My symptoms steadily get worse as the day progresses.
It’s been that way 24-7 for 3 years now, but I still hold out hope that a med trial will help me some day.
Best of luck to you all,
Can i ask what you take or have taken the last 3 years…if anything
I only got diagnosed about 18 months ago, and started on preventative meds right away. I’ve tried amitriptyline, propranolol, topamax, flunarizine, and gabapentin. Though I gave each of them several months, I had to stop all of them due to side effects or lack of efficacy.
I’m currently trialling verapamil, and next on my list is the Aimovig injectable. Then probably Effexor, Botox, pizotifen.
Lots of options still to try so trying to stay positive!
So basically you are saying your symptoms and 23/7 maybe rather than 24/7. They just haven’t yet reached totally chronic. Have they bn this way always, or has the dizzy period gradually extended over time. It’s strange how everybody differs with symptoms. My attacks went from self-contained 48/72 hour total incapacitating, no breakthrough symptoms at allever. Sudden start and pretty much sudden stop. A bit of vertigo on bending or with head movement for a further 24 hours as time went by sometimes, maybe. Then after a decade the very occasional totally unpredictable breakthrough lastly a few minutes between occasional acute attacks, for a while then after a full-on attack December 2014 the accompanying dizziness came and never went. I guess the variance in symptoms probably depends on how good/bad our underlying balance system is or some way linked to our general health. Helen
Remind me will you how long you were chronically ill and undiagnosed. I like you found episodic so much easier to cope with. It went away completely between and I would forget all about it. Convinced every atrack was the last and it wouldn’t happen again. Never worried about it recurring at all. If anybody asked why not, the only thing I could say would be ‘I am my father’s daughter’. Helen
Before the chronic phase, I had childhood migraines where I would totally lose my vision for a few hours and feel very ill with only a mild headache. I had these about 4 times a year and they didn’t really affect my life at all.
Then after a few years without any migraines at all, in my first year of University, I had a 2 week long headache which consisted only of very strong pain, but no other neurological symptoms.
After another year or two passed, I woke up one night with all of the vestibular migraine symptoms. For me that’s headache, terrible dizziness, tinnitus, nausea. I had absolutely no idea what was happening and had a panic attack which saw me end up in ER. Alas, I was consequently misdiagnosed with anxiety for 18 months. Since that first event I’ve been chronic without any breaks. It took me a long time to really understand what was happening to me, and a lot of time was wasted trying breathing techniques, etc for ‘anxiety’.
As a young and ambitious 20 year old man (now 23) it’s been massively frustrating to be so debilitated for so long.
All the best, D
I’ve been in the chronic phase for a total of 3 years, but only got diagnosed after attending a private dizziness clinic about 18 months ago as having anything physiological.
I think that makes all the difference, if one can get diagnosed and treated promptly, recovery’s much easier although I’ve read to the contrary. I don’t believe it. I’m sure if I’d been diagnosed during my twelve years of episodic, I would never have got chronic at all. Helen
I feel very much the same, Helen. I was so debilitated with my symptoms that I feel entitled to be a little disappointed that I wasn’t sent to a specialist or dizziness clinic earlier, which, as you say, probably would have helped the chronic-ness of the illness to not become so deeply entrenched
Best wishes, D