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Hello people

Hi everyone,

I love this website, such an amazing source of information. Thank you everyone for contributing so much. My name’s Alex and I’m a 41 nearly 42 year old woman.
I’ve had migraine variant balance disorder since Easter 2018. I went skiing in the Easter and my step father died whilst i was away. I found it all very traumatic, as you do. However, whilst there I noticed a rocky sensation every evening. After this I experienced issues with lights, patterns and screens, life was really quite unbearable. I have 2 children under 10 too. Cut a long story short, after lots of research I booked an appointment with Dr S who diagnosed me. He put me on Nortriptyline and when I got to 20mg i was fine, then we went on a long journey to France in the car and it came back. I then got up to 40mg which was great too, although maybe stills issues with patterns, especially horizontal ones (blinds are a nightmare as they give me migraines too I’ve realised). However after maybe 6 weeks of feeling ok each time it came back so Dr S said to increase dose until I felt ok. I got up to 85mg and my memory was seriously starting to fail Me, I felt like I had dementia or something, additionally my eyes dried so much at night they sticking to my eyelids if I didn’t use drops constantly. Dr S said to come down to 40mg and gave me 0.5 pizotifen 3 times a day. I now take 0.5mg x2 at night, I couldn’t cope with more weight gain. They definitely helped. I went back to Mr S when I was at 40mg nort and I mentioned my weight gain which was probably about a stone and a half so he said to come of nort and go on clonodine. After having my BP measured by the Dr it appears I have low BP so wouldn’t be able to take this.

My question is, has anyone had success with nort but had to increase their dosage due to symptom improvements for only 6-8 weeks after each increase and then tried another drug for it to work? When I decreased to 40mg I would say my symptoms were the same as 85mg but I still get quite a lot of migraines, about 6 a month so as a prophylactic treatment it’s not great. When Dr S said to come off nort totally my rocking defo increased, I think I panicked that I was sort of ok and could muddle through and the thought of more drugs to test myself on worried me. Things definitely set my rocking, I think phone scrolling or use and computer screens which I use everyday for work.

Thank you, Alex

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Pleased to hear you find the site helpful. Can I suggest a different angle of approach rather than a direct answer to your question. From all I have read the aim of preventives is exactly that, they prevent the associated symptoms from happening. In order to do that the level of dosage needs to be high enough to control almost all the symptoms most of the time. It then seems doctors keep patients on the drugs at that same level for a good length of time in order to achieve what they call ‘a good length of remission’. People often have to trial several drugs in order to find one they can tolerate at an effective level over time. It seems anything shoirt of that may only have a limited and temporary effect. Another important thing to bear in mind is preventatives are only part of the package. You also need to look diet, life style changes and identifying and reducing triggers all of which should long term reduce hypersensitivity. All that phone scrolling and computer use probably isn’t helping. I ended up going months without any screens even TV screens for that reason. Just winds symptoms up every time. The only way to stop the increased sensory sensitivity (your phone scrolling for example) is to stop the dizziness and the only way to get rid of that is to stop the migraine. The key to doing that is an effective dise. Crystal clear head days are the aim :wink: and you will find other threads on that by using the Search facility.

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I keep encountering the diagnosis “migraine variant balance disorder” on this forum. Can someone enlighten me please? Is it another name for MAV/VM? Is it a common diagnosis or is it specific to one clinic or doctor?

(and hello! Welcome to the forum! Looking into diet might help, as would taking a long walk every day.)

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The doctor S referred to by the author of this very thread or to give him his full title Dr Surenthiran of the soon to be closed Medway Clinic in Kent told @janb that was her problem and she posted here so that’s where I first heard it. Very descriptive I say . Does what it says on the tin so to speak. Generally abbreviated, as is everything these days it seems, to MVBD.

And, yes, yet another name for MAV/VM though actually MAV is supposedly a subtype of VM … Or is it the other way around, no I think I’m correct. Just as well Alex is his patient otherwise we really would be encroaching on somebody else’s thread which would be poor forum etiquette indeed. In the circs I think we may just get away with it.

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We have a lot in common! Mine started around April 2018 after a trip, and I have a lot of trouble with screens and rocking. Mine came on really slowly though. I started 10mg of Amitriptyline in October 2018. I had a really really tough time getting on Ami (super depressed) but somehow I pushed through, got up to 20mg and after about 7 weeks I noticed a lot of improvement and side effects went away. I increased to 30mg and stayed there for about 7 months before slowly weaning off. I weaned off and did really well for about 5 months, but my symptoms returned so I’m trying Nortriptyline. Maybe you would have more success with Amitriptyline, although most people seem to switch from Ami to Nort. On another site they refer to something called “the treatment pie.” There are a lot of things you can do to live a migraine lifestyle- consistent sleep, staying hydrated, heal your headache diet (or keto), medication, and supplements. I take a lot of magnesium, riboflavin, vitamin D, CoQ10. Sorry to hear you are having so much trouble with the meds. It can be so frustrating!

Thank you so much for replying.
@dave1 Migraine variant balance disorder is, the way it’s been described by Dr Surenthiran is where you have lots of migraines and hormones and stress and add them together, like an over filling of jug, apparently the vestibular nerve is close to where the migraines attack too and the over filling of the jug results in something giving and that in my case is my balance.
Thanks @Onandon03
I have done the food elimination diet and worked out that different foods were huge contributors. I had big problems with my gut whereby I had antibiotics and was quite ill with them about a year before the balance issue happened, they even thought it was Crohns but it turned out to be the antibiotics, great huh. I bought Symprove the probiotics, it initially gave me a migraine every day (i suffered some months before the diagnoses with only having 5 days without a migraine so could cope with this) but after about 3 weeks they stopped and food wise I’m pretty much ok, except blue cheeses and marmite and I can have maybe 1 glass of red wine. I’ve given up caffeine, I go to bed and wake up at the same times, I can’t not be on a screen during the week though as my job, especially now requires me to be on it all day.

Thank you all, Alex

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@LAM130
I hope the Nort works for you. I found it pretty amazing the entire time I was on It, probably about 90% ok all the time. I also try to eat low carb as I crave sugary things constantly but have heard keto is good. I
I did try supplements and spent a small fortune on many but didn’t find them any good although I take magnesium. I tried CBD for about 6 months too, at great cost but didn’t find it worked.

I don’t think it has been proven to do much for MAV. Lots of the US group find it helps with sleep but from all I gather the UK stuff is very different from that available elsewhere in the world. Not only lacking in strength but also different in chemical structure too. The authorities here seem very tentative about it. So it may prove an expensive waste of money.

Unfortunately some people find that eventually they have to rethink that one too. One of the most successful ‘recovered’ stories recently is @janb and both she and I attribute a lot of that to her having being able to take time out. A reduction in triggers can break the cycle.

More and more I learn about MAV the more obvious it becomes that it is a modern-day industrial injury for many. Obviously there has to be some predisposition to it but so very many people who develop it have spent many - and from the brain’s viewpoint - so far too many hours either on computers, or performing strenuous exercise. I spent 25 years much as you are working now. I don’t think evolution has managed to catch up. The modern office environment is hostile to some brains and eventually something just has to give it seems.

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Yes I do agree. If we could do without the money I would, but unfortunately we can’t.
I always feel so much better after I have a walk in nature, not on roads. It seems to reset some of the equilibrium within.

Believe it or not that’s a phenomenon recognised by science. There’s even a term for it which currently slips my mind. Plenty of relevant threads on here too. Walking in nature is pretty much the best exercise/therapy for MAV for sure. Good both mentally and physically.

Welcome Alex! I am a rocker too, although not as much now that I’m mostly recovered.

I’m struggling with that on Amitriptyline at the moment too. I wake up in the middle of the night and if feels like my eyeballs are cemented into my eye sockets…

I’d see what Dr S thinks about the CGRP class of medications for MAV. I’m on my 4th injection of Emgality and it is very helpful. Of all (5) medications I’ve tried, Emgality was the only one that didn’t have ANY side effects for me. Not to say you won’t have side effects, but it is a very targeted medication for migraine - not a shotgun drug like traditional migraine prophylactics of the past. The other thing you might consider is the Cefaly device as it also has almost zero side effects. Anyways, my thinking is that you may benefit from other forms of treatment at this point rather than upping the Nort continually.

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Dry eyes are a very common side effect of many drugs. NHS website and no doubt others explain warm compress. Works a treat used regularly. One time 4/da but these days maybe 1/da and not necessarily every day. All manner of drops available. Plain stuff, no added meds. I found compress do much better. Subsequently worked out why. I actually clears/simulates the little glands to produce more fluid. The drops just stop them having to bother I suspect.

These new injectables, Emgality etc, do seem to be helping migraineurs and even us dizzy MAVers however very expensive and unfortunately not easily available in UK. Last I heard some aren’t even licensed for use here and others have been rejected as far too expensive by the governing body NICE. Some, and no idea which, are available in private clinics for those that can afford to pay. @nin wrote recently in Ireland they cost 7000 a year. Euros, not £’s I imagine. All that said it’s always worth asking the question and @nin is being put on some sort of free trial. So here’s always hope.

Hi Alex, welcome to the forum. Helen tagged me on an earlier post about the injectibles. Here in Ireland it’s still all so new but as Erik suggested, you should definitely ask Dr s who in the UK is approved to prescribe these new injections. Here in Ireland my understanding is there are a few approved neurons who can do it with approval from the hse (equivalent to your NHS), its also done with engaging the pharmaceutical companies. I’m with my neuro, a headache specialist 2 years and on 160mg propranolol and 150mg effexor so the 3rd element is that at this stage he is putting me on a compassionate care program funded by the hse so the cost of this which is approx 7k euros will be covered. There has to be a similar offering in the UK, its trying to find out who’s approved to use it. If Dr s can’t, can he give you a few names perhaps.
Anyway, I hope you’re doing well today. Take care. Elaine

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