i will be going to the state clinic for further and thorough examination. luckily this time neurologist tried eeg, at least we found some irregulations and people will not think its just psychological.
Interesting that you were given an EEG; I don’t think I’ve seen anyone on this forum take that test before. I certainly have never been offered it. Any insight into what they’re looking for?
In any case, make sure to keep us updated on your situation.
Having an EEG is definitely not in the standard vestibular workup in the UK. Are you seeing an oto-neurologist?
hmm otoneurologist… i cannot find the term or field for this in my language. we have neurologists and otolaryngologists…
Did you try ‘neuro-otologist’? They are bit few and far between. Quite a new idea even maybe. Can’t you see a migraine specialist neurologist or is there a ‘Balance Centre” maybe?
Had to check that one out myself. So many varieties! Just read neuro-otology is a subset of ‘otolaryngology’.
You’ve just summed up much that is wrong with modern medical practice …
To get to the heart of many conditions, you need joined up thinking, imho.
Certainly so when it comes to Vestibular issues. It certainly stuffed me. The doctor thought it was ears (BPPV), the optician thought it was the eyes, The eye men thought it was the ears, the ear men had no idea at all (couldn’t understand why I was so ill), and so I just literally did the rounds until I went to see a neuro-otologist who specialised in movement disorders for another condition altogether and he just diagnosed the MAV ~in passing! Oh, for a more joined up system. Helen
first i saw a neurologist who specializes in migraines and its quite renown. he diagnosed me with vestibular syndrome, prescribed beta histine and B1, and said to check in in 1 month. i am not sure what plans does he have with me. he said nothing about taking other tests or mentioned vestibular migraine…
today this old lady neurologist tried eeg… and send me to the biggest state clinical centre where docs can do through examination. and the president of the neurology department in this centre is the neurologist i saw first…
cant wait for the examination and drugs and hopefully the end of this sensations.
yes… i am also seeing optician tomorrow, just in case
This sounds quite familiar. For the past 10 months I have had vague lightheadedness and heaviness/pressure in the left side of my head, plus ear and visual symptoms such as crackling when swallowing/yawning, cloudy vision especially in sunglight/night. Recently my focus has been better but I still feel like I could pass out sometimes or that my vision is about to go. I am seeing a DR on Monday, (4th one - after seeing neurologist, ENT x2) so hoping for more insight. The Dr is meant to be one of the best VM ones in the UK so if he doesn’t know, I give up. The last DR said I have pppd and elements of migraine.
Hi, and welcome. Quite often with vestibular issues you’ll get a different diagnosis from every specialist you see. What you must look for is a diagnosis that is meaningful to you. Once you’ve been given a diagnosis check it out on line and see if it does seem like you. As most vestibular conditions are diagnosed purely based on symptoms and these often overlap considerably it’s often difficult for doctors to pinpoint things. An added disadvantage, from the medic’s viewpoint is symptoms change over time. That’s why we meet people on here who’ve been told ‘it cannot be MAV because you can still function, ie aren’t bedridden. They need to appreciate the meaning of that little word ‘yet’. There’s always the possibility whatever symptom they consider diagnostic just hasn’t appeared yet. Of course some people may never develop that symptom anyway, it’s so variable MAV, but still be MAV sufferers. Good luck with your doctor on Monday. May I enquire who you are seeing? Whatever happens, don’t give up until you find a diagnosis that is meaningful to you. Helen
Hi. I will be seeing Dr Surenthiran.
I have already seen Dr Seemungal, but I need a 2nd opinion.
Have you seen either of these Drs?
No. I don’t move in such illustrious company! Actually I’m way out West. Home Counties trip would be a drag anytime and as a car sick individual with MAV in 2015 would have been totally impossible. Had to stay local, not that I’d heard of either of them at that time (2015) anyway. I saw a neuro-otologist who specialises in movement disorders, and supposedly also headaches (but not MAV as it turned out), and in 2017 I saw a migraine specialist neurologist, both within 15 miles of home.
Dr Surenthiran - known here as Dr S - is well known with MAVers in South East UK. Doubt he’d not notice a case of MAV/VM. He offers follow-up appointments too which not all do. Neither I saw wanted to manage my case. I know the name ‘Seemungal’ presumably from reading on the internet. Helen
will update, probably is gonna take a few months, this week they will let me know about the date of examination.
Does specific head or neck movements affect your sensation if you have VM?
For example I posted this few weeks ago:
“Unfortunately I am worse for the last 3 days.
It started when I was in a lying down position with my head lifted to the side (to see the computer screen next to me in my bed) and using elbows for support. I was in that position like 5 second and when i lied back on my pillow I felt the change.”
And on Saturday this happened:
I was really feeling fine all day on Saturday, usually during weekend I am very cloudy, lightheaded…
I felt relaxed, I made myself a mojito and enjoyed the sun on our terrace,
But in the evening (when I am usually even better) when I bent over and reached for a phone over a chair, which was lying on a table, my head became weird again, light head pressure, cloudy, slightly lightheaded…
Oh and I forget to mention, on my diagnose paper after EEG it says also somatoform disorder. Ughh, they are very quickly to admit they dont know what is wrong with me with using this term.
Cant wait for further examination.
Absolutely, yes which is why people (like me) got misdiagnosed with BPPV for years. Have you seen a neurologist yet? Do you get migraine ever? I’m not a doctor so am only guessing but it could just be you are starting up with VM but it’s quite mild so far, you don’t exhibit many symptoms so it’s difficult for doctors to make a decision. VM is a diagnosis of exclusion. No definite test for MAV exists. It’s just a collection of symptoms that leads to a decision. All you can do is keep a note of symptoms and keep trying to obtain a definite diagnosis, Helen
Unfortunately everything in this discipline is a bit ‘vague’. Once things get to a particularly subtle level from a diagnostics perspective they tend to throw you in a broad bucket.
The fact is the diagnostics are not particularly high resolution and don’t account for change over time (they just snapshot you). This is a huge flaw because compensation is all about stability and stability is about response over time.
The other massive challenge is the lack of sufficiently high resolution MRI in the clinic which is woefully inadequate to image the inner ear in sufficient detail to make any definite conclusions. This will hopefully change eventually and is ever improving however as newer machines come online.
It is my feeling that a lack of compensation and migraines represent an instability in your vestibular system.
In my case my MAV symptom set arrived because I hurt my ear (5 months before!). It’s frustrating but most people don’t know how they developed MAV.
The lack of definitive subjective, hi resolution visibility on everything in the vestibular system leads to some really broad brush conclusions and a significant amount of uncertainty.
Some people settle on ‘migraine’ being the cause of their condition, but no-one seems to know what is causing their migraines. 100% healthy people don’t get migraines (though they may be common), let alone ones of the vestibular variety (if that is even what they are!)
Good luck with your next referral.
I’ve been to two neurologists, different diagnosis, one vestibular syndrome and one did EEG which showed some problem with brain impulse. i am heading for the third.
no, i dont have migraines, never had them…
Mav is a “wastepaper basket” diagnosis, a diagnosis of “exclusion”. You are usually given it because other causes have been ruled out (such as eye issues, epilepsy, brain tumour etc).
You are doing really well to have seen Dr’s so quickly.
Good luck xxx
Update… my neurologist prescribed me escitalopram Cipralex (Lexapro) whichis mainly used to treat depressive or anxiety disorder.
For 35 days now I was taking a high dose of a medicine which improves blood circulation in inner ear and vitamin B1 but no noticeable improvements.
I am not sure how Cipralex could this help since my problems are triggered by body and head movement, changing rooms I am in and lights, time of the day, computer screen…
To repeat, major symptoms are weird headache, head pressure, lightheadedness, “storm” in brain when working behind the computer, quick head or body turning is uncomfortable.
Usually after around 6-8 pm I am better.
Is it common to treat vestibular problems with antidepressants?