I will try and briefly explain my situation and would love to hear from people about advice on meds, anxiety etc.
Originally this started about 4 years ago and between then and last year I had only had felt this slight disequilibrium about 3 times lasting in some cases a few hours and sometimes a few days, but nothing that particular concerned me or stopped me doing anything. In November last year I was teaching in London (I am still in London again this year although not teaching) and started having this feeling of disequilibrium again for a few weeks, but unlike the previous time it just didn’t go away. Fortunately, I was heading home for 2 months and decided to get in checked back in Australia.
I was very fortunate to have been able to see an otoneurologist and neurologist who both told me I had Migraine Associated Vertigo. I had the balance testing done just to be sure but they found no abnormalities and neither with my MRI. I few days before I headed off back to London I then stared developing headaches. I had never had them before but at least they are so mild in fact most of the time it’s just this slight feeling on tension on the top of my head.
This year has certainly been a challenge dealing with MAV. I must say that in general I had been coping with the symptoms very well and was not too anxious about it, although I couldn’t keep teaching as it was just too much to be dealing with this chronic vertigo and havnig a classroom of 30 students. Having been reding on this site for some time I can well and truly recognise many of the symptoms and know that I have the right disgnosis.
Unfortunately, I have had no great relief from medications. I have been on Sandomigran (no real improvement), then verapamil (again not noticeable improvment), I was also taking amitriptyline but nothing really improved. I am currently on Atacand (Candasartan) for about 4 weeks but nothing to notice in particular.
However, I decided to see someone over here just to touch base and see if they could recommend any new drugs. I went to the London Migrinae Clinic and saw a Neurologist there who pretty much implied that my Neurologists back in Melbourne had made up this disease and that I was actually suffering from Chronic Hyperventilation Syndrome. He didn’t even go through much of my history. No disrespect to him but he was quite old and only worked 1 day a week and just blatantly told me Migraine is episodic and that he had never heard of MAV.
I went home and looked up Hyperventialtion and do not have anything like it. My breathing has always been fine along with all the other stuff it mentions. Anyway, it’s just been a bit of a set back. I have never felt panicked and have always been a really confident, capable and outgoing person. For the first time ever I’m actually panicking. For the past 3 days I have felt an enormous level of anxiety like I have never experienced before.
Anyway, I just wanted to know if other people have been told they have some sort of anxiety problem when they really don’t! I would also greatly appreciate any advice on what medications I should try next for MAV and whether people think SSRI perhaps are worth a try.
Sorry for the long email! Would love peoples advice!
I was originally diagnosed with Meniere’s desease and am a member of another web forum for that desease. It was throught them that I learned of MAV. Like you, I had a hard time finding a doctor that that was familiar with any type of migraine beyond the classic migraine. On the other forum, I have come across people who have been misdiagnosed, or their doctors treat meniere’s totally different than the norm and treat it instead as a panick problem.
So I guess in short, there aren’t that many doctors who understand balance/dizzynees disorder. Myself, once I figured out that I didn’t have meniere’s desease, I spent almost two years looking for a doctor who could give me an accurate diagnoses.
Sorry to hear you are heaving such a difficult time. I think alot of us have been through what you experienced with that doctor. I myself have been told that my problems were anxiety-related and that I should just stop worrying about them and get on with my life. I have seen quite a number of different specialists now, and their opinions are more divergent than you could ever imagine. Vertigo and dizziness seem to be very poorly understood overall and I have found that particular specialists have their own leanings towards making particular diagnoses.
Don’t be put off. A very senior specialist who I respect told me that the diagnosis of anxiety-related or psychogenic dizziness is a “waste-basket diagnosis”. It is very easy to make but leaves the patient feeling misunderstood and dismissed.
I think you should see a neuro-otologist in London. There are some excellent ones there. I would really recommend that you see:
Dr Rosalyn A Davies FRCP, PhD
Consultant in Audio-vestibular Medicine
Department of Neuro-otology
The National Hospital for Neurology and Neurosurgery
London WC1N 3BG
She has published literature in this area and is very highly regarded.
As far as medicines go, it is my understanding that it really is a matter of trial and error before you find something that works. I am still trying and, sorry to say this, I have been at it for a couple of years. Maybe what you should try next is one of the anticonvulsants, like topamax or epilim. But see what Dr Davies says first. The thing that may be complicating your situation, is that there could be a co-existing inner ear disorder. The combination of migraine and inner ear trouble makes things more tricky. Dr Davies will help you sort that out. Do you have inner ear symptoms like tinnitus, ear fullness etc?
I think you have found out quickly that here in the UK that migraines and vertigo are often quite misunderstood. It seems to me that in the US they are slightly more progressed with the concept from some postings I have read on here.
Most GPs in the UK do not understand migraines beyond seeing them as a headache - which we all know they are much more than that - they are neurological in their weird symptoms and often disabling. I was told I would just have to live with them at one stage - with no offer of any medication other than paracetomol and codeine.
You probably found one of the better places to visit - The City of London Migraine Clinic - but it is so dissapointing that you were fobbed off with a diagnosis of anxiety so quickly with little investigation - this is really a blanket diagnosis and really says more about the diagnostician than you yourself. Don’t let that put you off pursuing other specialists. The clinic does not seem comfortable to put vertigo and migraines together however - they are a bit flaky on commenting on this at all. The other point is that some male GPs/specialists in the medical world are quite chauvanistic still, I used to work with specialists so I know this from a workers point of view. They just have no idea and haven’t moved on from the mass valium dosing years of the 70’s and 80’s in the UK (housewives ruin) and those stereotypes.
Without doubt anxiety seems to be a part of the migraines and vertigo - but does the anxiety cause the two or vice versa I always question? The vertigo makes you anxious - why wouldn’t it - it is pretty unpleasant and frightening at times. I think it works both ways - but I think there is one thing to remember - we can change our lives, adapt our eating, excercise, relax more - do all these things but may still have migraines and vertigo to varying degrees - I believe mine are genetic in basis. It worries me that when a GP puts anxiety down as the only cause (which rules out any genetic or physical cause) that the MAV sufferer is left with the guilt and burden that somehow it is there fault - i.e. meaning it is all down to them being stressed, too sensitive and so on. It is not - and we can all do things to help manage our illness - but it seems none of us has a magic wand to stop it at will - ahh if only!
I was mis-diagnosed for many years with the vertigo being labelled as a panic attacks (basilar/ visual migraines followed a few years later) - I have very occasional panic attacks, and in my experience there is a lot of difference between a panic attack and full blown rotational vertigo spin or losing the ability to look up or down for days on end. It took me around 15 years to get the correct diagnosis (but I thought I had been given it so was blissfully living as the illness was my fault for being anxious and stressed so I hadn’t been looking for further diagnosis) - and that was only due to the fact I moved to London and had a wonderful GP. Being told the vertigo was an illness in the sense that it was not labelled as an neurosis was a wonderful feeling to me - I was angry however that my health had been so badly mis-managed for so many years.
I think RobSydney’s advice is spot on. Try ENT if you haven’t already?
Good luck Cath and take care - I hope you are able to find a more sympathetic and investigative specialist next time around!
There was a post on Dizzinews (the mailing list) today from a London’er regarding her success with MAV meds. It seems a lot of the guys there are starting to find the right med combos (some of us really struggle- myself included). Her post was as follows (I hope she doesn’t mind me cross-posting it):
— Begin quote from ____
I’m still about! Don’t read/post very often but never forget my dizzy friends, you helped me put my life back on track. Yes I am dizzy-free over 5 years now, I have a 4-year-old daughter and a stressful, demanding job which I love.
I suspect, given what I know about the hormonal aspect of migraine, that I may have a recurrance of the dizzies when I get closer to the menopause (I’m 34 now). But it won’t be as scary as first time around, because I will know what is wrong and hopefully some time on migraine preventatives will knock it on the head again. Then again maybe I’ll be lucky and it won’t ever come back - who knows? But I relish living dizzy-free, and appreciate the love and support of you all which helped me to get here.
I pop in occasionally and hope that telling you about my recovery can give some hope. If I hadn’t learned what I learned on DN, who knows I would probably still be dizzy today. That’s the power of this fantastic group of people and I love ya.
— End quote
She also had vestibular loss in one ear. I suspect this is generally meaningless, once MAV is treated.
Thanks Brain, Rob, Mrs G and Adam!
It’s funny that you can feel like you are managing this condition and then some days you feel like it gets ahead of you. Hopefully, in a few days time I will be better.
Rob and Mrs G, I think you are right when you say doctors just find a simple diagnosis for the patient, like anxiety or labelling it Menieres, without proper investigation. It leaves the patient feeling very vulnerable and somehow at fault for their problem.
Thanks for suggestions on specialist in London, but after last weeks consultation I think I will wait until I get back to Australia and deal with my neurologists who were very well educated on MAV.
I think my next step will be trying some form of anti convulsant.
Doeas anyone have any experience with some anti-anxiety medications for MAV?
It is a very frustrating condition. Having no control over the day to day fluctuations is the hardest thing I find. It is really inspiring to hear that people like the one Adam quoted actually do get better.
With regard to anxiety medications, many of us have taken benzodiazepines like lorazepam, clonazepam, or yes, even Valium, at times to relieve the anxiety. I personally find lorazepam can give very rapid relief from the vertigo. The antidepressants are also very good treatments for anxiety and this includes the older ones like amitriptyline and nortriptyline, and the newer SSRIs like citalopram and sertraline.
Let us know how you go.
Thanks Adam for sharing that post from DN. Its always GREAT to hear success stories. Sometimes they seem too far and few between, but it always seems to give me a little boost to keep trudging along.
Mrs. G, I have to agree with you completely on the anxiety going hand and hand with MAV. I also, was diagnosed with panic attacks in my early 20’s (they said it was due to mitral valve prolapse). Several years later, it progressed to migraine w/aura, dizziness, etc. Back then, I found relief with propanolol (a beta blocker), and its what I take again today (with some success). Something I’ve always questioned - is it the anxiety that aggravates my migraines, or is it migraine causing my anxiety??? Probably will never know.
I’m a firm believer in the right combo of meds (obviously not easy to do), as well as diet. For me, I’ve found abstaining from Msg in my diet to be the biggest help.
It is great to read success stories - it gives a lot of hope.
A little bit of good news from me - I am still taking 2 capsules of Feverfew each night - I’ve slept well for a week now (a miracle by recent standards) - and I have been migraine and vertigo free during that time. I’ve introduced small amounts of seeds and nuts for in-between meals to try and keep the blood sugars level and I’m drinking more water - so far, so good. Whether it is the Feverfew’s influence I don’t know but I’ll stick with it.