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Fed up with misdiagnosis!

Hi all,

My name is Bella. I was diagnosed with MAV recently by a neuro-otologist after 7 months of suffering with constant symptoms (false motion feelings, heavy head sensation, imbalance, tinnitus, noise sensitivity, moderate throbbing headaches, etc.)

From my own experience and others on here something which seems to be quite a common theme is a lack of understanding from doctors about this condition. I am shocked at how so many are given a labyrinthitis diagnosis and told that there is no treatment available other than VRT when symptoms are chronic. I occasionally look at dizzytimes and there are many vertigo sufferers on there who believe they have uncompensated labyrinthitis or ‘chronic subjective dizziness’. Of course I cannot diagnose these people with MAV myself, but having recognised that many complain of the same symptoms as me I would not be at all surprised if they do unknowingly have it.

Yes, MAV is a difficult diagnosis to get ones head around. There are many questions surrounding it that it seems none can truly answer yet. Why do some have 24/7 symptoms? Why do some never have headaches? Why can symptoms vary so much between one individual to the next? Ultimately, what the heck is really happening in the brain of a MAV sufferer and what is the best way to treat it?! What gets me is that rather than want to investigate the answers to these questions, a significant number of doctors, even neurologists, seem to want to overlook and undermine its existence.

What we do know is that MAV sufferers respond to migraine preventative treatment as the same rate as those with chronic classic/common migraines and that there is genetic links and symptom overlaps between them. What is also clear is that there are far too many sufferers whose symptoms may not be visible to those around them but who are clearly not attention seeking liars or people whose severe anxiety problems are the root cause of their chronic dizziness.

It is a true shame that some people suffer with this awful illness for years yet could have begun treatment much earlier on had they not been denied this due to misdiagnosis and ignorance. MAV treatment is often a difficult and rather lengthy process in itself even once a diagnosis has been reached and life is too short to lose more time than is necessary putting up with the symptoms! I know that MAV is not life threatening and will never be top of the list of illnesses in terms of research and treatment in the medical field. But quality of life is a very important thing and we all know the detrimental effect MAV can have on it, so all I would wish for is a wider and deeper recognition of the disorder among doctors.

Sorry for the rant but I expect many of you share my frustration! Hopefully soon things will change and future sufferers will be able to avoid the relentless search for a diagnosis many have had to go through. In the meantime let’s all aim to educate our doctors about this as much as we can!

Bella x

— Begin quote from "Bella"

I occasionally look at dizzytimes and there are many vertigo sufferers on there who believe they have uncompensated labyrinthitis or ‘chronic subjective dizziness’. Of course I cannot diagnose these people with MAV myself, but having recognised that many complain of the same symptoms as me I would not be at all surprised if they do unknowingly have it.

— End quote

Hi Bella,

DizzyTimes is an off-shoot of labyrinthitis.co.uk I believe. One of the girls who started that group is lovely but unfortunately believed incorrectly for years (and probably still does) that she does not have vestibular migraine even though a London specialist recommended she start propranolol. By that stage the labs site was well and truly in motion and I think she could not swallow the fact that it was a migraine condition. As always, there is a sea of misinformation on the internet and we have to be good at appraising information critically. I hope some of the recent literature here will help people to understand more clearly what might be going on.

http://www.mvertigo.org/articles/recognising_vestibular_migraine_HART_2014.pdf

http://www.mvertigo.org/articles/vertigo_and_migraine2011.pdf

S

“What we do know is that MAV sufferers respond to migraine preventative treatment as the same rate as those with chronic classic/common migraines”- where did you get this data from? Was this from an article or a particular Dr.? That certainly hasn’t been my experience or my neurologist’s I think if this were true this forum would be much much less active.

Hi sarahd,

I cannot prove that vestibular migraine sufferers respond to meds at the same rate as sufferers of other types and I probably should have worded this differently. What I was trying to say is simply that the same medications are prescribed for both and have shown effectiveness for each. I also think it is quite difficult to make a comparison because of course for some sufferers determining the effectiveness of their med may be as simple as checking whether they have a headache or not, whereas for us this may involve a whole assessment of whether any of our myriad of symptoms has improved. I think it is also worth noting that sufferers of all types of migraine, not just vestibular migraines, do have problems finding the right meds. If you have ever been on migraine.com you will see that there are headache sufferers (particularly chronic daily sufferers) who have not responded to the meds they have trialled. In the section on treatment effectiveness there is a section about a study which revealed that the most commonly used migraine preventatives were not 50% effective more effective than placebo.

Hi Bella,

Thanks for clarifying that it sounded like it was from research or soemthing and if so I wanted to see the article. You are also right where it is easy to say a med works on the headahces some of these meds only work for some symptoms of mav which has been my experience. yea i guess i am being too specific so i only have 1-2 migraine headaches per month and all the meds hav etried seem to keep them away but again its not like i had a headache all day every day to begin with so its probably hard to even say.

Hiya Bella,
I know what you mean about people being misdiagnosed. It took 2 months for me to get a diagnosis and I more or less had to diagnose myself and do all the leg work and I thought 2 months was a long wait! In comparison to others who have taken 10 years to get diagnosed!!! I think it’s such a shame people getting passed round from doctor to doctor, wasting money and there own time, pursuing things that won’t help through misdiagnosis, told it’s all anxiety or it’s all in there head, ive heard lots of stories. I think medicine is still very crude and most doctors like a lot of people are very closed minded or tunnel visioned. They don’t look for an answer beacuse they are not interested, don’t listen and they don’t really care.
100 years ago thyroid disease was misdiagnosed because doctors did not understand it or have the medical knowledge and technology to be able to diagnose it. A lot of those people where committed to lunatic asylums or thought to be hypochndriacs. Same with a lot of other diseases that where misunderstood.
In other words what I’m trying to say is that medicine is so crude and unadvanced at the minute when it comes to understanding migraine that history repeats itself and migraine is misdiagnosed like lots of other conditions in the past and people suffer at the time because of it. I think it takes particular doctors such as Dr. Silver, Dr. Goadsby, and Dr. S to name a few who will take an interest and push forward to research and try and better understand migraine. Maybe in a 100 years time there will be a test or way of diagnosing migraine and that will bring a cure or better way of combating it. I think we where all just born at the wrong time.

Often I don’t think doctors appreciate the importance of vestibular conditions and the detrimental effect it has on people’s lives. Misdiagnosis can lead to years of suffering and must extend recovery times. More education and research is needed. Even when a labyrinthitis is diagnosis is correct, and I’ve known several cases personally, no actual treatment was received which meant I was rather surprised to see the links to herpes virus and antiviral meds suggested in this Daily Mail article. I wonder hiw commonplace amongst UK medics such knowledge is,

I saw that article yesterday and meant to post it as I thought there might be interest in it. I also had not heard of the Herpes link. I had labrynthitis (when heavily pregnant) for about 2-3 weeks about 6 months before the MAV kicked off. At the time I was told it was caused by a virus, a few people at the institution where I worked had come down with it and my boss’s father whom she had been caring for had been hospitalised with it the day before we had a long meeting so I assumed I had caught it at my workplace. I do recall someone on this forum mentioning that they treat their MAV with acyclovir. The doc in the article also states that VM is episodic (lasts a few hours) but can be recurrent. Very few docs seem to accept that one can have some symptoms ALL of the time which leads to suggestions of an anxiety disorder.

My GP maintains that it doesn’t matter what my specialist has diagnosed me with. “It is just a label to help lump all the myriad symptoms which we know little about together”. However, diagnosis does matter as it dictates what treatment you receive. As I was misdiagnosed with Menieres and then endolymphatic hydrops for decades it meant that I was only ever prescribed stemetil and Serc (which has a low success rate even for those with Menieres) and given diruetics and told to follow a low sodium diet and that it would likely “burn itself out” and if not, then I just had to live with it (which I did). It was only when I started to get headache migraines that I started to get some preventative migraine meds to try and had another bash at getting diagnosed. I was told by the neuro that only the dizziness and tinnitus etc before a migraine headache (I.e. part of the prodrome) was migraine related. Having symptoms all the time meant something else was going on and I should go back to ENT.

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Absolutely agree with this. That’s pretty much as far as medicine has really got in this domain.

As many people do in these times when I started feeling unwell I started looking up my symptoms. I had had “monthly“ headaches As a teenager and infrequent migraines since an accident at work about 25 years ago. But when my migraines started becoming more frequent, and my symptoms changing I started looking online. Vestibular migraines was one thing I saw quite early on in my search, MAV followed from there. I’ve been trying for a year for someone in the medical profession to help me get to grips with my symptoms- in all that time no one has mentioned the “vestibular“ word to me at all except last week when I saw a new physiotherapist. Why is it so difficult?

Well I’m fast heading for Year 17, and it was only last October when I suggested to a migraine specialist neurologist that ‘might it be Vestibular Migraine’ to which she replied ‘on that spectrum’ But without actually allowing the word ‘vestibular’ to cross her lips.

I think its do hard because nobody truly the vestibular system or how bipeds balance. In fact I think think nobody realised they didn’t until they tried to make two legged robots walk. There’s a good reason most robots have wheels and move around like vacuum cleaners. Nobody’s grasped the balance theory yet. Too many components involved and too many specialisms in medicine to see a whole picture I guess. Balance is complex and complicated and the trouble with migraine-type stuff is it isn’t life threatening, headline grabbing to encourage research and lots of companies make megabucks out of painkillers … shall I go on.

Sorry if I sound disillusioned but I’ve been that way a long time now medics really aren’t that interested. Take ‘my’ expert. Supposedly the top migraine expert my side of the Capital yet she thinks my onset is ‘backwards’ and appeared never to have come across such a history before yet just read the thread I bumped recently entitled ‘Migraine Variant Balance Disorder’. I can resonate to most of the ladies there. I’m in no way unique. Helen

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