How great to find this site.
I have had the spaciness, surreal, drunk type feeling for 13 years now. I wanted to give a brief history and see if anyone thinks MAV may be my problem. I feel almost certain that it is.
I first got “sick” in India. I remember the day as I had smoked some pot (not something I did a lot mind you and haven’t since) and my whole world came crashing down. I had true vertigo, my hearing went very strange and echoie (is there such a word?), my vision was bizarre and all blurred. As a result I completely panicked and had a very bad panic attack. I had never had one before. I put this first episode down to effects from the pot but later remembered that at the time I had a very severe headache and was premenstrual as well.
I have suffered from migraine with aura (that is the visual flashing and bluring) since I was a teenager. I used to get awful headaches with the arua. A couple were so bad I had to get shots in the backside to stop me vomiting and the intense pain. Now I still have an aura (in fact much more frequently sometimes twice a week) but usually without a headache. However I often have a dull headache everyday which I treat with panadol.
Since my first strange “episode” I had maybe two others that involved that true feeling of vertigo. Actually I remember it as like being on a rollarcoaster but I was sitting on a bus. Now I’m just left with this horrible lightheadedness/spaciness day in, day out. It never truely goes away. My eyes often feel tired and like they can’t focus. I can’t stand bright or fluro. lights and wear my sunnies everywhere including inside. I have trouble with motion that is close in my visual field such as a train pulling into a station or a movie screen. I am generally fatigued.
I was initially diagnosed with anxiety disorder and have tried about 10 different anti-depressants to no avail. I am currently on .5 mg of Xanax a day which really doesn’t help a lot. Over the years I have been on a higher dose but there still wasn’t a discernable difference in the way I felt. I always thought there is something else going on here. Why doesn’t the Xanax help if it’s purely anxiety??? Then when I read about MAV about 6 months ago it all fell into place. I felt exatcly what most of you have described. I’m about to have a baby (my 2nd) so I can’t try any preventatives until after I stop feeding her but hope with all my heart that I can finally have some relief from this “disorder” that has so clouded my life for so long.
Any thoughts or comments are greatly appreciated.
Nice to have another fellow Australian on board.
Sorry to hear you’ve been going for 13 years like this - I’m up to my 8th year now myself.
Your gut feeling sounds right - the list of symptoms you’ve described above would not fit any other
vestibular disorders. It’s surprising how it started - but sometimes something seems to ‘activate’ this
disorder - there is obviously something already malfunctioning, but it may take head trauma, a stressful
incident or as you’ve said above, some sort of bad reaction to a drug (marijuana and amphetamines come
to mind) for it to come out and hang around indefinitely.
Please be careful with using Panadol to treat your daily headache! I also suffer from the same thing
and the best relief I’ve found for the headache so far is weekly massage to reduce tension. More often
would be nice, but unaffordable. You definitely shouldn’t be taking analgesics like Panadol everyday for headache -
this can cause the headaches to become even worse (analgesic rebound headache).
Your best bet would to be to see a neurotologist. Since you are in Australia, I would highly recommend above
all others, a neuro-oto by the name of Dr GM Halmagyi. He is in Sydney at the Royal Prince Alfred Hospital Neurotology clinic.
He and Dr Baloh (another excellent neurotologist, in the US) ‘wrote the book’ on vestibular disorders, literally.
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I was diagnosed with MAV by GM Halmagyi myself. I travelled from Darwin to Sydney to see him.
If he agrees you have MAV, he may be able to suggest a preventative that does not pass into breast milk or in such low
amounts that it poses no risk.
Congratulations on the new baby in any case!
Please let me know what you decide to do, and I hope to see you back here.
Thank you so much Adam for your feedback. I am going to try to make an appt. with the fella you reccomend ASAP and I’ll let you know the outcome. I’ll have to wait until after the birth of the baby and probably some months after that but I’m excited about the possiblity of a diagnosis and more importantly treatment that might give me some relief after 13 years. I’m currently cutting back on my caffeine intake (is decaf. ok) and panadol. Have had a three day headache as a result.
I’ve read some of your old posts from other sites and was excited to hear that you may have found a preventative that is working well for you and without any major side effects. Is that still going well? Who perscribes your medication?
I think you’ll be surprised - Halmagyi is brilliant - although like most top doctors he can be quite frank, and has a dry wit.
He probably wouldn’t have a problem with seeing you at any stage of your pregnancy - you wouldn’t necessarily have to try
the treatment immediately - although i understand some of the tests could be a bit stressful for a pregnant woman - rotating
chair, ENG etc. which he will no doubt want to do.
Decaf should be good… it must be tough stopping the caffeine (if you can eliminate it completely that would be best, just to
see if it helps - if it doesn’t then you could just start again). The panadol is an important one… you really must avoid taking
it everyday - the usual rule of thumb for migraine is twice a week for any abortive (ie. non preventative) medication. Beyond that
you are at risk of prolonging headaches and other symptoms due to rebound.
I take Acetazolamide - but not all the time. My tolerance of it seems to vary. Sometimes I can take it for weeks and feel great
and have no problems with it. Then it might start me feeling nauseated and I have to stop it which stops the nausea. Then I might
try it again in a few weeks and develop nausea straight away - its very unpredictable. There are certainly much better medications
out there for most people - but I have really reached the last line of preventatives as I have been through many medications. I am also
trying very hard to make as many positive lifestyle changes as possible in regards to diet, exercise, relaxation etc.
My medication is prescribed by my GP. I just tell her what I want to trial, and she will prescribe it for me - she’s great like that. If Halmagyi
agrees with you re. the migraine diagnosis he will report to your GP who can liase with him in order to determine which drugs
Hope that helps.
I would love to try to get this resolved NOW but unfortunately I’m about two weeks away from my due date and the first couple of months with a new baby are intense, to say the least, so I’ll have to put it on the back-burner for a bit as I live in Brisbane and would need to fly to Sydney.
I’ve been on the decaf. for three days now. How long do you think I should trail it before I can decide that it’s not making much of a difference? My headache continues. It’s been raining a lot and I find rainy weather makes me feel worse.
I’m sorry to hear that the medication you’re on hasn’t been the miracle drug I’m sure you were hoping for. Does it make life more bearable though?
Have you had any contact with people with MAV who have found success with a certain medication?
Personally I would try to be caffeine-free for a month. Caffeine is definitely a big contributor for some people -
it is a drug after all - for some people avoiding caffeine is enough to bring them under their trigger level and
avoid the chronic dizziness and headaches altogether. Alcohol is another important one but I’m guessing you’re
already avoiding that being pregnant!
Certainly the medications I am on make life a lot more bearable… once I go off them I realise how much worse
it could be. I have been taking Pizotifen for 4 years now.
It can sometimes take 3 months to see Halmagyi (if you are unlucky - its even longer to see a normal neuro here in Darwin)
so perhaps you can set a future date with him for the appointment - so that you don’t have to wait until you’re ready and then
wait a further 3 months.
Definitely a lot of people have gone into either full or partial remission with the right medications. They all have
drawbacks (side effects) but they can and often do work well if migraine is your problem. There are many people who continue
to suffer who don’t know they have it, or don’t know that it causes their dizziness - there is a huge misunderstanding
that migraine is ‘just a headache’. Many people on other forums report migraine headaches, and even dizziness that gets worse
during their monthly cycle (very common) but don’t connect them with each other. Unfortunately most people are then told
to take an abortive which will help the headaches but do nothing for the dizziness - which then cements this idea further
that migraine is the cause of just the headaches, and not the chronic dizziness. I would love to see these people get treatment,
but it is going to be a long time before the connection is well known enough by most doctors that they will be offered treatment.
An interesting thing to note is that almost everyone on these other forums with no real diagnosis, or garbage diagnoses
suffers from migraine headaches. In the normal population, the prevalence of migraine is about 10%. On these forums it
seems more like 80%, and even that is being conservative. Pure coincidence? I highly doubt it.