Visiting this site you don’t feel so alone with this invisible illness,
But reading how long some people have suffered with MAV is so worrying…feels like my dizziness will never go away it’s been 11 weeks and feels like forever!!.
Please can people share their success stories to give us hope, and also the things that helped them recover.
Also please everybody when you do recover, come back to the site to tell your story, as it will give other suffers encouragement and hope.
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Thanks again for all your information.
Pleasure 
Hi Nad
I’m feeling really good these days. I don’t really say too much about it as I don’t want to tempt fate! I don’t take it for granted at all. You will get there too. It takes a long time unfortunately but you will.
I’ve been on nortriptyline, following the diet, made lifestyle changes (getting on top of stress levels, going to bed/getting up at the same time every day etc) and have been taking supplements since July 2015. Come January I will start to taper off the meds, then if I’m off them by June when I see my doc again, I’ll start to reintroduce the food. That’ll be two years!
Progress is slow and not noticeable from week to week. It’s when I look back over months I can see how I feel differently. I know it’s maybe not what you want to hear, but unfortunately there are no quick fixes or miracle cures.
Mentally keeping on top of it was the hardest part for me. I just got into a zone where I just accepted that this was how it was going to be for a while. Of course I had days when I felt utterly miserable and felt sorry for myself but I worked really hard on not allowing that to take over.
But now I’m generally fine. I still tire easily and if I have a busy day, I might get some head pressure and my eyes feel hard to focus. The doc actually thinks this is now down to the meds more than anything. So there is light at the end of the tunnel! You will get there. I hope it starts to ease up for you.
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Such great news Scott! Yeah sometimes I find my eyes a bit swimmy and think that’s down to the drugs too. As ever best of luck with next steps!
Also agree on the mental aspect. Had a few good weeks recently then a bit of a relapse this weelend. Felt very down and anxious about it, feelings I thought I’d banished but sadly not. Feeling almost back to MAV baseline today though just in time for work! 
Thank you Scott for your reply,
I’m so pleased you are feeling better, and I hope that you will be fine when you get of the meds.
2 years though omg!!.
I’m not on any medication for this only propranalol, that I’ve been on for years as a migraine preventer, and to help with anxiety.
When I went to see a neurologist he didn’t suggest any medication, he said to be as active as possible, and to tell myself the more dizzy I feel the better it will be for my recovery, he did recommend feverfew, magnesium, vitamin b2 and Coenzyme q10 , and also acupuncture.
I’ve started the b2 and magnesium and will start the feverfew as soon as it arrives.
I’m also doing vestibular rehabilitation exercises.
Was your dizziness constant? I read on this board that lots of people have vertigo attacks, does this mean that some people suffer with the dizziness on and off, I am just dizzy/ off balance all the time when standing and walking , the faster my pace the more dizzy I get…it’s not even really dizzy, more like feeling drunk swaying back forth side to side.
I still can’t believe I was fine one day and woke up dizzy the next and 3 months later I’m still the same…but looks like it could be early days!! .
Nadine it will fly by. I’m 1 year in already (1.5 if you include my first acute 5 week spell of vertigo) and 0.5 yrs on meds.
Yeah, anxiety is just part of the course I think. It can creep back in if I have a bad spell too. Hope its eased up a bit!
Better now thanks Scott.
It does pass really quickly. Once you get to a place where you feel a bit better and you can get on with life a bit more normally, it makes a big difference.
I still have to watch how much I do. Before all this I was so busy and used to run around like mad all day. I really had to scale that right back and have a calmer approach to life. When I feel myself slipping back into old ways, I can feel symptoms creeping back. So just watch how much you do.
Yes, I had constant symptoms. I had had a few really severe, acute episodes over the years that lasted a week or two (was told it was lab), but the chronic, constant stuff kicked in early 2015. Maybe even was creeping in at the end of 2014. Yes, I had swaying too, a kind of ‘catching up’ feeling where it felt like my brain wasn’t keeping up with my body, and lots of weird and not so wonderful sensations.
It’s worth talking through drugs with your doc. I actually see a neuro-otologist. They specialise in balance disorders so it might be worth trying to find one of those. There’s no way I’d be where I am without the nortriptyline. It’s really worth exploring that path.
The time passes really quickly, just to clarify!
Hi Scott
Today I travelled on the tube first time in 3 months since this MAV began I went with a friend and it wasn’t too bad, I had no Dizzyness while sitting on the tube, it was only when walking that the Dizzyness started, I’ve also had a much better day with hardly any anxiety, and had a good laugh with my friend…laughter is a good medicine something I’ve not done since this Dizzyness began.
Took my red bush teabags out with me, and am really liking them, don’t know if I fancy the coffee you mentioned!! .
I am seeing my Doctor tommorow and will ask him to refer me to a neurologist that deals with balance like you mentioned.
I am going to carry on without meds for as long as I can, and see what happens with the magnesium, b2 and feverfew, I did try the betahistine, but it did nothing for me.
Thanks again for your advice.
That sounds like a good plan.
Yes avoidance of activity and socialising is a very bad idea. The more normal your lifestyle the better you will be psychologically.
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Yeah I second that. It could be too easy to shut ourselves away and get into a very dark place. See your friends and socialise when you can. I always found being with people eased my anxiety too. I think it was because I knew if I started spinning out badly, there was someone to get me home!
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Hi Scott,
I know you mentioned that your symptoms were constant, were some of them such as feeling like you were on a boat? Bobbing, ground coming up on you? Did you have any visual disturbances and what dose of the notriptyline did you take? Thank you so much!!
Alexis
Hi there. Yes, the main symptom in my recent relapse was bobbing like I was on a boat. I’m not sure about the ground coming up on me, but I had a really heavy head, as if it was being pulled to the ground.
Yes I had strange visual experiences, no auras though. When I’m tired or poorly I still get funny eyes. It feels hard to focus and as sometimes I feel like my eyes are going in different directions! It can be a bit blurry and I had double vision at its worst. When I was really bad, my vision was jumpy- like when you see old cine film, or like when they use people’s mobile phone footage on the news. You know how it is jumpy (for want of a better word)? It was like that constantly for a few months. I had my eyes checked recently and my eyesight is perfectly fine. The brain just doesn’t cope with the signals from them.
What happens for you?
Thank you so much for your response! I am new to the diagnosis, and as I am sure you can relate, it’s very scary! My symptoms are just like yours…the worst of everything is this constant bobbing feeling and the general feeling that something just doesn’t feel right, particularly when I walk. I am on the elimination diet, but I have not seen a difference…the visual symptoms are jumpiness and static like vision…the worst of everything is the constant bobbing…I am seeing a great doctor at mass eye and ear in Boston (Dr. Priesol), and he’s told me that he wants to continue waiting to put me on medication, but I am so desperate I wish I could something different…did you find medication help return you to normal at all?
I know you mentioned that anxiety was a something you experienced, as have many. I find it hard to escape thinking about anything else, and even when my symptoms aren’t terrible, I feel stuck in this cycle of self-perpetuation. It is is extremely frustrating. anything help you remain positive and a bit more rational, perhaps?
Thanks, again, for all your insights!
(Edited the title to differentiate it from the main Success thread)
Yes medication really does help. I didn’t appreciate how much until I tried reducing the dose recently. I’m on nortriptyline which has done the trick for me, and others have success with other drugs. I would really recommend getting started on something. If the diet isn’t helping on its own then you probably need some extra help. My doctor describes the medication and diet etc as a plaster (band aid), so it allows your brain to heal underneath. I also spend a small fortune on supplements. No idea if they really help!
I remember very well that feeling that you’re stuck in that cycle, constantly thinking about it. I had that weird detached feeling and remember just desperately wanting to feel like myself again. All of this, and the anxiety too, all eases up as the symptoms decrease. It really does.
Yoga helps and I used a meditation app called headspace, and found doing this each day helped a bit with getting in the right mindset. This illness is horrible, but, it is what it is and we have to accept it, and do what we can to help ourselves. Try to be positive, you can get better.
Follow the diet, go to bed/ get up at the same time every day, have regular meals, exercise ( but don’t overdo it), really try to de-stress and just be kind to yourself generally. I don’t want to push the drugs, some people prefer to avoid them, but they really helped me.