Vestibular Migraine

Family, Education, Health and Pets
1
Has anyone heard or suffered from this before?

I have just been diagnosed through process of elimination as suffering from this.

For the past week I have had unexplained dizziness consisting of a rocking type sensation where I feel like I am on a boat all day ( and although an office on a boat sounds nice I can assure you I am on dry land ).

I am hoping it clears up soon as it is a horrible sensation and makes me feel very nauseous.

The funny thing is the actual headache never arrives, it's more of a pressure sensation around my head with the main symptoms being light sensitivity, rocking and swaying sensation, the feeling that objects in the peripheral vision are moving when they are not.

I thought I had grown out of migraines as I have aged. I used to get extremely bad ones where my vision would blur and my head would pound, followed by sickness and dizziness. It would wipe me out for days but at least I would know how long it was going to last.

With this there is certainly a lot of uncertainty!

2
Have you contacted a vestibular specialist about this? I know there is a large research group addressing vestibular disorders in Zurich and another excellent group in Geneva. I am not familiar with a vestibular migraine, but it may be worth getting checked out to make sure it does not progress.

3
Hi JFD,

Do you have any information on this group and how I can contact them?

I'm based in Zurich

Thanks

4
sent you a PM

5
No answers for you, but

1. By coincidence, today I was reading a UK newspaper that had an article about a woman who has been suffering from similar sounding symptoms for some time.

2. Previously, I have heard of similar symptoms ( including the "almost" headache being attributed to teeth and gum issues/pressure/alignment . Any comment on this from Greybeard?

6
Dragging up an old thread here but since I originally posted this I have continued to suffer these symptoms of being on a boat without any let up.

It has been extremely disconcerting, especially being in new country and trying to deal with all the added pressures of getting set up here

I have visited the universitatspital and seen dr hegeman, who is a neuro-otologist specialising in balance disorders. He also put this down to migraine associated vertigo and prescribed me magnesium and vit b2. Unfortunately this has done nothing to relieve the symptoms so I am now awaiting another appointment at the universitatspital for many more tests to see if this is linked to the inner ear or brain balance systems.

Would be interesting to hear from anyone else who has suffered with similar symptoms.

7
I am so sorry that you're experiencing this. I actually had wondered if it might be vertigo when I read your first post.

I'm curious why he put you on Magnesium, since that is usually attributed to muscle function.

Did they check your iron and sugar levels?

8
Hi Carrie,

Thanks for your response.

Apparently magnesium helps with migraines which is the reasoning behind prescribing this. I don't actually get any headaches, or certainly none out of the ordinary but from what I understand a migraine is not a headache, a headache is a symptom of a migraine and a migraine is a chemical imbalance in the brain.

I've had all blood works done and nothing came back out of the ordinary, so now waiting on all the different types of vestibular tests.

If everything comes back normal then it looks like migraine is the only valid cause.. Other than something more serious but don't really want to think along those lines right now

9
Oh, that's interesting. I (obviously) had no idea that magnesium can be helpful for migraines.

For what it's worth... I remember once reading about a type of massage that can be helpful for migraines. If I remember correctly, it's a massage to the back of the neck, near where the back and the neck meet. It loosens something up and was shown to be helpful for migraines.

Well, whatever the cause is... I certainly hope it's nothing serious and that they soon find a way to make you feel better!

Many warm thoughts to you~

10
MMany migraines are an allergic reaction, not all of course.

I get an odd type no headache just distorted vision..

11

Aura migraines ?

I've had vertigo and at first it came on like a migraine, but with vomiting, light sensitivity. (Normally I get 'Aura' migraines and don't vomit).

A week later I went from feeling pretty good to head spinning so bad I couldn't even sit partway upright without vomiting. Noise set off the vomiting, light set off the vomiting. Turned out to be 'vertigo' - ended up being taken in an ambulance, rehydrated on a drip, senior ER doctor saw me after about 12 hours and was very unimpressed that they'd also given me a couple of doses of valium to calm me down a little...

Tests didn't turn up anything, except the possibility of it being set off by a virus. Took a week before I started to improve, three weeks before I could drive a car, and I would not wish vertigo on anyone...

I was prescribed lots of stuff (heavy duty migraine drugs, anti-emetics) but they really didn't seem to make any difference.

Aura migraines are something different. I get loss of peripheral vision, squiggly lines across my vision, tingling in my hands which moves upwards over time to my face, and usually when the tingling fades the headache hits in the opposite side of my head. I've also had migraines that affected my speech and balance.

Mine are definitely set off by hormonal changes, also weather changes - my dad, sister and I all have the same pattern and we can call each other and say 'Oh, did you get a migraine today'... if we are located in the same city...

I was told one theory is that they are caused by changes in the blood vessels supplying to the brain, and that it's possible they are more serious than perhaps imagined.

The difference with the vertigo and the migraine is that with the vertigo my head would spin on a certain 'plane' and then if I tilted my head the slightest bit, it would start to spin in a different direction... whereas with a migraine, unfortunately, the headache is the same...and only fades over time - it takes me 24-48 hours before the headache fades after a migraine.

One thing that works for myself, my dad, my sister is taking paracetamol before the headache hits. Because we get 'aura' migraines the onset of the headache is after 1-2 hours of symptoms...so the strategy that works is to take paracetamol as soon as symptoms appear, and also eat and drink, so the drugs are absorbed properly. Seems to work. Don't know why. We've certainly done the range of other much more heavy migraine drugs with little success. I never take painkillers, except for this purpose, so it's not a 'rebound' headache but I also don't have any resistance...

12
Yes, I just get the zizag lines.

What you wrote is important; migraines seem to inhibit the way that bodies absorb anything that you take.

My ex wife had severe migraines but when she recognised one was coming then taking simple aspirin at a very very early stage was effective.

It seems to me to be important to take medicine very early; thinking it is "not so bad" - I will wait a while before taking medicine is counter productive!

13
Glad to see information on this and that I am not alone, my experience is identical to swisspea and cornish_pastry.

Early on I get a tingling sensation that it's about to start, room starts to tilt and if I don't take paracetamol immediately and it becomes full blown the everything spins, vomit is unavoidable and need to lock myself in a dark room with no noises and lights.

It feels stress related to me, I had 6 months with no episodes and then 10 episodes in a month, lasting from 2 hours to 24 hours.

At this point I am afraid to drive to work which is 30m away in case I am left stranded or god forbid I crash.

Went to multiple ENTs, they are all clueless. One told me BPPV, one Meniere's and 3 told me vestibular migraine. The latter fits my symptoms perfectly but no one can help me with a treatment for the symptoms.

I take magnesium and Vitamin D daily but I still have episodes all the time, perhaps less severe than before, hard to tell but they still keep happening.

Does anyone know any specialist doctors for this in the Zurich/Zug area?

If I could at least have something powerful to stop the dizziness/spinning after I have an episode that would be something. It's making me not live my life right now as I am afraid to fly or drive alone.

14
About 4 years ago my sister started suffering from dizziness and motion sickness to the point she'd have to lie down as the room would start spinning. She also kept getting bad headaches and developed whooshing noises in one ear. She assumed she had either Meniere's or the onset of tinnitus. After loads of tests she eventually found out 2 years ago she has an acoustic neuroma, a type of benign brain tumour that affects hearing. It's 3mm, she now has to go for a brain scan every year.

I developed tinnitus in one ear after suffering 2 retracted eardrums on a fight back from Scotland. When I saw an ENT specialist in Basel she prescribed me a balloon device to use they give to children with glue ear and also high strength Magnesium, she said it alleviates tinnitus.

I find the magnesium quietens the noise down (although the eeeh noise doesn't keep me awake). I also find alcohol makes my tinnitus noisier. Some experts say it's to do with high BP, been taking meds for that since May.

15
Your symptoms with no actual migraine sound like BPPV to me, which I get. It can last hours, or days.

16
With BPPV it's about the crystals going out of place, so doing Epley's maneuver can restore them. They tend to last a lot less than VM, minutes to hours. My mom has that.

With VM I had an episode once lasting 48 hours, couldn't leave the bed. These days it's only a few hours because I take paracetamol immediately.

I wish there was a specialist who knows everything about these diseases to advice on a personalised plan. Whatever it takes, MRIs, blood exams etc to at least have a diagnosis as none of the 5 doctors I went to are 100% sure of what I have. (although very happy to relieve me of hundreds of francs for each visit)

17
I found the exercises in this video interesting, besides Epley's.

https://youtu.be/CjynFNdmqoM

THREE Best Exercises To RELIEVE Your Vertigo

Dr. Justin Lin, Physical Therapist

18
Sounds like you're doctor-shopping, with predictable results. Never a good idea. Especially not with chronic diseases.

Educate yourself. Oliver Sacks' book on migraine (his very first) is ancient, the treatment section outdated, but it remains a marvellous resource for its varied and colourful histories. Migraine is a clinical diagnosis (once the zebras have been excluded; one decent MRI should've done that job by now). Every migraineur's story is different. The clinical picture can change over time. Read the dizzy cook's blog (including the section on VM itself), don't believe everything you read, do experiment. Read more: https://www.brainandlife.org/the-mag...help-migraine/ Keep a migraine diary. Get rid of the idea that there is anyone who can do that part of the work for you.

My VN started half a lifetime ago as tension-type headaches, then I got scintillating scotomas, and the dizziness is a fairly recent addition. I vividly remember the first dizzy spell - for about half an hour, I lived in fear of getting Menière's. Until the familiar half-sided pain came along: hello migraine, my old friend! Such a relief. I knew I could handle that, and so I can. Usually, an attack give me several hours' notice during which my left ear hears less. Only then do things start spinning. Motilium (domperidone) prevents the vomiting. The only thing it really keeps me from doing is attempting to take up sailing again. Paddling feels safer, especially since it wasn't my boat... Incidentally, this thing is one of the reasons I'm grateful we'd gone car-free (long before). It has also forced me to work one afternoon less. To be honest, that's all for the best. I was a workaholic.

Find a neurologist near you and stick to him or her. That's important. Migraine treatments are manifold and can include some really strong meds, so what has worked and what hasn't needs to be known to your caregiver. This is not something that can be solved in one visit. Please acknowledge your own part in generating those multiple bills. I saw exactly one neurologist exactly once and we were both perfectly happy not to do an MRI, but then I'm an MD and come from a whole family with migraines, so there was no need for expectation management.

There are many decent neurologists in Zürich. Two I know personally are Dr. Zumsteg and Dr. Spiess.

Good luck.

19
The fact that your symptoms have come on quite suddenly and accelerated rapidly points to something else potentially going on.

Migraine is generally a 'last diagnosis' once everything else has been ruled out.

I've had EEG's - MRI's and various other blood tests etc in the past....

If it's stress related then I would start with the general doctor for a full checkup to make sure everything else is normal (blood tests, blood pressure) and then refer to a therapist for talking therapy and/or medication...

20
OP has had three specialists giving them the same diagnosis... and does remain somewhat unclear on what has actually been done and what hasn't. Is this someone who deigns to bother with mere GPs? I do agree that a family practitioner who knows you is the best thing that can happen to you, medically speaking. Still, I stand by my considered professional and personal opinion. It is absolutely not surprising that people don't want to hear these things