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What does 'better' feel like?

To those of you who feel you’ve got better or at least are in remission…what does that feel like? Does your head feel pretty much like it used to before you got ill?

I realise that a lot of people who got well may not be posting here anymore, and I get the impression that, once this illness hits, you are always altered by it in some way, having to be careful of triggers etc.

But my head has not felt still for one single day since this began (2 years ago). I realise I have to get on the right med for me etc, and also that it will possibly be a long process, but i’d love to know if it will ever feel properly normal again!

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Personal experience, it feels like this:

or even this:

It’s taken me just under 3 years to get this far and 2.5 years from the start of my ‘MAV’-like phase.

And from someone else on the board:

Or this:

And generally stalk this section:

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Thank you. I’m needing a bit of encouragement today, because, well, you know…(sometimes it feels like it will never end)

Well, yeah … I’m waiting for that event too, but hey … if someone said to you “it will end, it just takes time … and I promise that every year it will improve” would that be good enough encouragement?


I absolutely know the feeling of “this will never end” - I’m 4+ years into this

First year was awful. I was barely functional, still worked, but while not working I was sleeping. I’d say I was at 10-20% functionality daily

I did VRT and that got me to maybe 30-40% in year 2

Year 3 I started Gabapentin and that’s gotten me to 80% on a good day and around 50% on a bad day

I recently started Nortriptyline and I’ve definitely seen some improvement through the first month. It’s raised my floor significantly, so my bad days aren’t nearly as bad

As a direct answer to your question, you don’t really notice improvement initially. What will happen is you’ll find yourself doing more, maybe going for a longer walk, spending half an hour in a grocery store (instead of a mad dash in and out) - and if you look for the dizziness, it will be there, but you need to focus on it instead of it being the primary focus of what you’re doing at any given moment

You’ll find yourself thinking less “I can’t do this today, this is too hard” and feel like you can actually conquer the day in some sort of way (whatever that may be, always remember that small victories are still victories)

The unfortunate part that I’ve yet to overcome is the general feeling that there’s something wrong. I still feel a little disassociation and brain fog, and there’s always a little underlying dizziness. I’m only at 10mg nori so I’m hoping another increase will keep me trending in the right direction.

Unfortunately there is no easy fix for this. It won’t suddenly disappear over night, but if you step back and evaluate every 6 months you’ll notice improvements. Look to build on those and always remember that everything goes away with time


Ha, yes…I’d take that :wink:

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Hey…thanks for that.Your post, like the others above, is very encouraging. Even unmedicated, I can see that I’ve improved in that I can use a computer and read now, whereas I struggled to do either of those things at the beginning. I think how you’ve described getting better is maybe how I’ve imagined it; I suppose I knew it would be a gradual process. It’s just the thought of this thing with me always, and never again feeling entirely OK, but I think I need to accept that it’s a gradual thing and get on board with really throwing all I have at it, rather than feeling like giving up. I think the nature of it is that it your reserves get worn down and it’s a challenge to have that fight always.

But thanks for your story…I’m so pleased that things have got that much better for you, and I will really bear in mind your way of looking at it.

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Btw, what you’re doing with the site atm is great, and will be so helpful for new people.

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Don’t shy away from meds,they help a lot and can get you your life back. As you said especially when running low on emotional reserve, meds can help. Atleast that’s my experience.


Yes, thank you. I have been doing that (shying away from them) because i tried a few and then would quickly give up as I think my heart wasn’t in it because I kept hoping I’d naturally (or indeed magically) get better (this thing came on pretty suddenly, so why couldn’t it just disappear as quickly?). There have also been times when I’ve felt i was improving wth just the likes of magnesium, the exercises, some lifestyle changes etc, However, a few bad experiences recently have shown me that I need to get more hardcore on this as it were because the sooner I do that the sooner I might get well.

This thing has a mind of it’s own. I have relapses for no rhyme or reason. Staying consistent with exercise, sleep and diet helps.


I wouldn’t say i’m better by a long way, but i am vastly improved since the worst days.

a good day for me now, a bit like BHMaloney, i really only notice in retrospect, like hey, i just did x,y,z and didn’t even notice any symptoms. a bad day - all i notice is the symptoms! so i guess “getting better” will be more and more days when i don’t notice the symptoms or they start to become insignificant so they are no longer important or greatly limiting what i can do.

case in point: last Sunday i felt pretty normal all day, out and about with kids and friends, walking the dogs, playing in the snow. then for the next 7 days i have felt pretty rubbish. why? i have no idea.

just hoping for more of those better days!!

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Great to get another positive story. Even though I’ve been pretty stressed, I’ve had a bit of an improvement in my own symptoms the last few days (certain things I’ve always got seem to have gone, but not - as is usually the case - come straight back the next day). I think I’ve still a long way to go, but I can now at least sort of imagine how maybe things fade and calm over time, and yes it’s not linear, and there are still bad and good days, but to at least be able to look back and say ‘This is so much better than it used to be’ would really be something.

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It would be something. It is something but, being human as we are, it really isn’t enough. We all want more. Even after all these years (I’m 15 and counting) it would really bug me to think it’s not going to more or less eventually disappear/fade into the distance rather than leave us chronic on into the future. Where I am now I’ve a good grasp of what being better really feels like. I’d just like it more concrete. Helen

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Hi Kat

Sorry to read you’re struggling! :confounded:
For me, better is well… still a struggle, some days I can get through without thinking about MAV 20 times and others I only think about it once! So I would probably say better for me is not 100% but I will take that! Menstrual months send me straight back into full on symptoms :astonished:

Just titrating up to 50mg of Ami… hopefully see more good days :crazy_face: so there is hope and better days ahead for you! Dont despair :two_hearts:

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Perhaps you need to try some of @LucyLabrador’s Clonidine? You get on well with your neuro perhaps you ought to mention it next Appointment. See what she says. Helen

I read that thread Helen! Thanks for the note…
I certainly am! Trouble is it’s not until Jan… I could always email though :thinking:

I’d email! That way you might just be cured if the monthly bits by January. You never know. Why wait?