Hi Folks,
Over the last couple weeks I feel like my symptoms have changed a lot from VM Symptoms (10 months) to more Traditional migraine symptoms i.e I’ve been experiencing the clear-cut 4 phases of migraine.
New symptoms I’m having that I never had before: headache, burning sensation in face, jaw pain, sensitivity to smell, hand numbness, very bad nausea.
Has this shift ever occurred to anyone else? 
Yep. I didn’t initially have any brain fog and scintillating scotoma though I did get huge migraine headaches fairly early on. The former developed later on.
MAV definitely morphs over time!!
Look on the bright side: hopefully, if it keeps morphing it will eventually morph itself out of existence!
Yes. Transitions over time. I had vertigo attacks with accompanying sickness and diarrhoea that lasted days long before I ever developed head pressure, ear pressure, and sensitivities to light, sound and smells. They came on gradually over time. For me over a decade. I experienced my first visual aura the night following my MRI Scan a week after being given a ‘Probable MAV’ diagnosis. That was more than five years ago. It was only a few months back I finally realised I can now see 4 distinct stages and identified a firm warning numbness (one particular finger in my case) aura as such and I only had my first ever classic migraine last October. In fact it happened through the night and only realised that was what it was describing it to somebody else the next day. Really did prove I suppose the vertigo and migraine are indeed ‘associated’.
Thanks both. I thought I had it bad, but these new symptoms are making it unbearable. Worst being light-headedness and total lack of concentration.
Hard to say if the morphing is a good or bad thing 
Ask the Doc about upping that Propranolol. Try a migraine diet, eliminate caffeine etc. Read all the blurb on lifestyle changes then implement. Cutting triggers is as much a part of the preventative protocol as anything. MAV’s an extremely hard nut to crack so you really need to throw the whole arsenal at it.
The morphing is pretty much inevitable whichever way it goes. Just remember nothing can improve without change happening. And meantime you’ll be pleasantly surprised at how much suffering a body can cope with when push comes to shove. I know I surprised even me. You will cope. Just grit your teeth and enter Survival Mode. You’re an Astronaut after all.
Maybe if I go to Mars the migraines still stop? 
I’m already on 120mg propanolol, I feel its reached its maximum effectiveness (for me personally). But reading HYH book at the moment and started that today - will take a bit of adjusting. If it doesn’t work I’ll try the Nort.
I’ve been doing VRT 1-2 times per day, but I dont feel like its making much difference. Maybe it is, but only a tiny amount in a gradual manner.
MAV is not a stable lesion, so compensation is tough. VRT was pointless for me. Just go for a long country walk and enjoy the view, instead of violently flicking from side to side.
I already walk 2 hours per day. Just doing the extra VRT, because I feel I need to do something.
What do you mean by not a stable lesion?
Excellent!
A stable lesion is one whose characteristics don’t change over time. They’ve done a bit of research in this area and stable ‘damage’ is much easier for the brain to workaround. They experimented by switching a bunch of people’s perceived visual turning direction using prisms and found they compensated in weeks.
You are referring to brain lesion I presume? My MRI didn’t show any lesions. Or is the lesion you are referring to more microscopic?
It’s a medical term meaning abnormal change. It is clear it’s not a stable change or you would compensate.
Yes I suspect the changes that happen in MAV are virtually impossible to detect from scans.
You could be first person ever to trial zero gravity as a MAV ‘cure’. Might take off (pun intended) though in truth I know nothing about Mars. Maybe it doesn’t have zero gravity.
Can you explain how you reached that conclusion? I might just like to know whether it’s done the same for me for definite so if you’ve a formula I’d love to share. 120mg is Only half the maximum dose permitted for MAV.
Starting the diet eh. Might help particularly the cutting caffeine bit. Good luck.
As James says pretty much a waste of time with MAV. Read Dr Hain on it. As MAV fluctuates constantly it’s inherently unstable. To achieve compensation Stability is required. Btw VRT made a huge difference to me. In six months I went from being 24/7 dizzy and wobbly on my feet to being totally unable to stand up at all. Unlikely to happen to you I guess if you can walk for two hours a day but then again if you can walk that much then surely there isn’t much wrong with your balance to need VRT in the first place.
I was given the Propanolol to curb panic attacks (which it has resolved). Firstly, my VM is not getting better; it has helped a bit at times but not significantly enough. Secondly, I’ve had tingling/numbness/light temor in my feet almost constantly since February 2019 - but it gets worse when a migraine is about to hit. Anyway, the Propanolol significantly reduces the feet symptoms but as soon as I hit the 5-6 hour mark (after having taken the pill) the symptoms return at full strength. For me its a very cyclical medication - I’m grateful that its stopped my panic attacks but its done very little for VM.
I’ve cut caffeine since November - drastically reduced anxiety but done nothing for the VM.
Do you have a link to Dr Hain’s article?
Interesting that VRT made you worse? My issue is a constant unsteadiness, which nothing can resolve apart from physiotherapy really. Sometimes my balance can be pretty good but most of the time I’m unsteady (bit of sway). I’ve walked 2 hours a day through the pain - in the early days literally wobbling from side to side.
One of my neuros told me not to bother with VRT, as he said walking is better.
Although I haven’t seen any consistent tangible benefits yet, I can see how some of the VRT exercises could help if done over a very long period of time.
Also its exhausting to do it 2x a day, I’m sure most people dont stick to it 2x a day or take breaks from it. I wouldn’t can it unless you’ve tried it over a long period of time like every day for 6 months.
I think I get it now. You were prescribed the Propranolol for anxiety. I read it works well with functional tremor. Sounds to me as though tremor is also an established part of your migraine aura. Having taken it for four years I follow the cyclic thread. Can see that happening. Propranolol is also produced as extended release to avoid spikes in levels although some doctors don’t use it, it’s recommended for MAV in the US but not often in the UK. I cannot find the reference I was seeking where Dr Hain actually mentioned not using VRT for MAV but there’s this one which incidentally includes reference to the prism experiment @turnitaround referred to using Dove prisms.
That goes for so many of us on here. It seems the one thing the drugs can’t/don’t tackle. I’ve had it myself ever since the Propranolol stopped the 24/7 dizziness almost two years ago. I think basically it’s because the Dynamic Balance hasn’t reset and as how balance really works is still a mystery to the medical profession there’s nobody that has a clue how to make it reset. I’ve found very recently that I do get odd periods of ever increasing steadiness. Had one only this morning. Got up steady and stayed that way until I went walking outside mid-afternoon so Like you I swayed through my walk and been swaying ever since. Probably gone now until I get up again tomorrow morning. Steadiness with MAV can be very fragile indeed.
http://dizziness-and-balance.com/treatment/drug/vestibular%20compensation.html
In truth, I don’t 100% know what I have because two neuros gave differing diagnoses. What I do know, is that propanolol is not helping and I desperately need to change. I found Dr Hains resources - very helpful, thanks!
Heres a weird one - my symptoms have been horrible for the last 10 days (consistently with no let up). Around 10-14 days ago I start taking 5% CBD Oil properly 2x a day - could this be the culprit? I have read that CDB Oil can cause dry mouth, low blood pressure, nausea, dizziness etc. I literally have been having all of those symptoms lately Also it doesnt help that every single article cites the endless benefits of CBD Oil but does little to mention the side effects.
Btw who is Dr S that everyone references on this forum? Barry S?
VRT’s possibly so exhausting because what you are doing is pushing an already struggling vestibular system. My VRT programme comprised five sessions daily, each between 10-15 minutes duration. Started with five exercises and then added in a further four probably. It’s a while ago now but I think that’s correct. I did once work out that at full stretch my exercises involved my turning my head some 450 times a day. I did it for six months.
Can’t help you with the CBD Oil at all sorry except to say it does seem to be flavour of the month and you need to check articles funded sources. They are probably just trying to sell the stuff and make mega bucks! IMHO you’d be better off trying a proven established preventative with a decent reputation. I don’t think MAVers sensitive constitutions are really much use for experimentation. Mine will react adversely to Dolly Mixtures.
‘Dr S’ is Dr Surenthiran a neuro-otologist, who operates in London and Medway Kent. You can search him on this site. You will not find contact details on here so in anticipation of next question you’d need to ask another poster who mentions having seen him for that.
5x a day is nuts! I think once a day or a few times a week is realistic. Obviously dont do it if it makes you worse. As Dr Hain and others mentioned, something like Tai Chi club may be a better substitute - good way to meet new people too!
Agreed. Quitting the CBD ASAP.
Thanks, think my physio down in marylebone said she can write a letter to my GP and get me referred onto Dr S down in Kent. Bit far for me, may have to do it privately initially.
Actually initially I did have improvement with VRT. Then it just settled to missing me much dizzier (as was predicted and expected) for an hour or so post each session then months later the exercises were made more difficult I felt much worse then sudden collapse but it’s five years ago now and best forgotten.
An NHS referral will as you suspect take ‘for ever’ and you will travel long distance for very short commons you’ll find. From all I’ve heard if you decide to go go private or it won’t be work bothering. As you say you may switch back later but I’d only do that if I was much improved. I’ve no personal experience just what I’ve been told. Oh and don’t expect a barrage of tests either. I’d hate you to spend money and be disappointed. It’ll be much the same trial n error method. It’s the only one there is.