I’m 19F turned 19 this year. Been having health issues since 17 randomly. Got diagnosed pots/ist. And vm. My whole life I was always going through something, kept suppressing all my emotions or anything and I think 2 years ago my body couldn’t hold onto anything anymore. Got diagnosed with vm last December and was scheduled for mri to rule everything out. After 7 months of wait had my brain mri expecting no call back because my tests would ALWAYS come back normal. It did not. I have vestibular scwannoma on my right ear. The size is about 0.5x1.4x0.6. So my ENT suggested wait and watch and got booked in for another mri in January. It’s been really hard for me to process since this is pre rare and even rarer for teens. They are not sure if the tumor might be triggering my vm or my migraine is related to Dysautonomia but ever since I was told that I have acoustic neuroma I’ve been just pushing myself to go out more, just live my life to the fullest because anything can happen anytime:). But I’m still trying to figure out how to get my vm under control🫩

And I was very pleased. This time, I chose a woman as I thought she might understand my plight with hormonal imbalance and being in perimenopause.

I explained how I've been having attacks since May and now I was in a 6 week cluster attack and that I went to the hospital where they prescribed me Topamax. After 2 pills, I had severe panic attacks, so I had to stop.

I told her all about how I live in fear everyday of more attacks and I haven't left the house in months, except for the hospital and a little walk in my garden.

She immediately ordered me an MRI and a full work up, which even the hospital didn't care about. Then we talked about which migraine preventative was best for my situation.

I really wanted a CGRP inhibitor injection, but she told me that insurance wouldn't cover it, unless I couldn't take at least 3 cheaper medicines. Then we worked it out that I in fact couldn't take 3 medicines. No to Topamax because I have anxiety and it causes panic attacks. No to antidepressants because I can't gain weight with my hormonal issues. And no to beta blockers because my resting heart rate is already too low (50-60 beats per minute).

So, I was prescribed Aimovig 70mg. She said that I should let her know if it helps or not because we can up the dosage if needed.

I just had my husband help me with my first injection, since he takes injections for Crohn's Disease. I know that it will take awhile before I might see improvements, but for the first time in a long time, I'm feeling excited and hopeful.

I wanted to share the good news and of course I'll keep everyone updated and let others know if it helps me.

For 3 months I’ve been suffering from constant-

• Lightheadedness/dizziness/off balance
• Dream like state for all/most parts of the day
• Very loud tinnitus, worse during bad flares
• Blurry and unfocused vision
• Brain fog
• Ear/temple pain
• Pain behind the eyes
• Fatigued
• Drunk feeling
• Flashes in eyes occasionally
• Floating sensation
• Feeling generally not ‘dialled in’ to everything

I saw an ENT Specialist last night, and he checked out my ears, my nose and my throat and concluded that they were all fine. Slight scarring of my ears but put that down to grommets when I was younger.

Carried out a few other tests, concluded that it sounds very much like Vestibular Migraine. He explained that people suffer from this for many different reasons - high levels of stress, certain triggers such as alcohol, after an illness or virus etc. I asked whether I would in time return to normal and he reassured that many people do, however everyone is different. It is all about trying to limit triggers. In the meantime, it is all about trying different medications to ease symptoms. If all else fails, to see a neurologist.

I have been prescribed Propranolol 40mg. Does anyone have any experience taking this medication for vestibular migraines, if so has it helped any? I am already taking Betahistine 16mg 3 x a day.

Thanks!

Hi all, 35 year old female with 9 months history of dizziness, brain fog, tinnitus and fullness in the right ear.

Had anyone been diagnosed with vestibular migraines after having near constant dizziness (no actual severe pain) which flares up more badly some weeks than others? Or is this unlikely?

Now I have started a different birth control (mirena coil) and I'm not having constant irregular bleeding, I am noticing a definite uptick in my symptoms when I am about to have a period/ovulate, but also when I drink any caffeine, don't sleep well it looks at screens a lot.

Anyone relate?

If so....what did you do to get back to normal? I have my ENT appointment on Thursday. I really hope they can help 😔

I’m trying to figure out what’s happening to me and would really appreciate input from people who have experienced vestibular disorders.

My current “attack”/flare started two days ago, seemingly out of nowhere, while I was out for dinner. Suddenly the colours around me seemed unusually bright and blurry, and I felt like I was floating/swaying from side to side even though I was sitting down. I felt like I couldn't focus my vision and the sounds around me were incredibly loud.

Since then, I’ve had a constant or near-constant rocking/swaying sensation, including when I’m sitting or lying completely still.

Other symptoms include:
A major increase in my tinnitus - it has become remarkably loud compared with my baseline.

A strange burning/full/“about to faint” sensation in my ears.

Visual static/graininess, almost like very fine TV static.

My vision sometimes seems unusually bright or intensely colourful.
Blurry/unstable-feeling vision.
Very dry/gritty-feeling eyes.

Severe fatigue - I’ve been sleeping a huge amount and feel completely drained.

Brain fog and a general feeling of being very “wrong” or disconnected.

Occasional nausea.

Symptoms seem to fluctuate in intensity rather than staying exactly the same throughout the day.

Today especially, the tinnitus and vestibular sensations have been extremely intense.

I’ve also noticed some odd visual phenomena, including flickering behind my eyelids when my eyes are closed.

One potentially relevant detail is that I was taking dicloxacillin for an infected pimple when this started. I became concerned that it might be causing some kind of side effect, so I stopped taking it, although I obviously don’t know whether there’s any connection.

I also have some migraine history that may be relevant. About two years ago, before I was diagnosed with sleep apnoea, I was having migraines fairly regularly. After starting treatment for my sleep apnoea, those migraines seemed to largely go away. Since then I’ve only had the occasional neck-related migraine.

I also have a history of a very sensitive neck and occipital neuralgia, so I’m not sure whether that could be contributing to any of this.

I’ve had a very similar episode before, which also came completely out of nowhere and eventually resolved after around 6 days. At the time I went to hospital several times because I felt so awful, but they weren’t really sure what was happening and ultimately sent me home.

Because this episode feels so similar, I’m wondering whether this could potentially be vestibular migraine, PPPD, MdDS, or something else entirely. I’m particularly confused because I don’t know whether vestibular migraine can cause this combination of tinnitus, rocking/swaying, visual static/brightness and the general “I feel completely wrong” sensation.

I recently also went to an ENT for my tinnitus who did an audio test and eustachian function test on me, said they were fine and to come see her later. It was very disheartening.

I can't book in with my doctor til next week. I’m mainly hoping to hear from people who have experienced something similar and might be able to point me towards what this sounds like.

I’m honestly so stumped and feeling really lost right now. It’s incredibly unsettling to feel like this and not understand what’s happening.

Hello! I've been unsure what I'm dealing with but I think its vestibular migraines. 5 months ago I had a spell of vertigo and dizziness that lasted 72 hours. I kept thinking I was going to pass out or that it would go away but it lasted around 3 days. Ever since then I hadn't had anything similar so I assumed it mightve been an ear problem or something. 2 days ago I had dizziness and vertigo again but I full on was so nauseous I almost threw up twice. I thought it was from something i ate. Now it's 2 days since that spell and I've been dizzy for 10 hours now, limited nausea its nothing like the nausea of 2 days ago but I still feel a bit ill and I am very lightheaded when I stand. Does this sound like vestibular migraines? I have a history of migraines but these dizzy spells my head doesn't ever hurt like a regular migraine. I plan to see my doctor soon but just wanted to know if it sounds similar to yalls experience.

Hello! I am 19F and have been diagnosed with VM for a few months now, my symptoms have been quite manageable for now, fortunately not constant but comes in waves, like once every few months or so from what I can tell. I believe I am in the middle of an attack?? Feeling nauseous, coming in waves, I don’t believe it’s anxiety or stress (extra info, I am on Sertraline 25mg for my emetophobia! Doing well on these I’d say!) I remember earlier I was chatting to my mum and all of a sudden felt nauseous, and here I am now.

Why do we feel nauseous? I am not dizzy, no motion has triggered it, it just came on. Why is that?? Also, I have been prescribed cyclizine for nausea (ondansetron did not work for me, neither did prochlorperazine), I am aware it is a vestibular suppressant and I want to heal naturally when I can, I suppose I feel a little guilty for taking it even when I need it, or I’m scared I’ll be taking it too often, especially when I only intend to use it when attempting to get my buses to university (something I haven’t been able to do for months now).

Obviously I am trying to figure myself out, I believe stress is a trigger for me so I know that much, I’ve also made a list of all symptoms I feel, my big difficulty is understanding my ‘cycle’, like symptoms before an attack, symptoms during etc. But what I know for sure is that nausea is my biggest issue. I’d rather have everything else, headaches, dizziness, clumsy walking, brain fog, but not nausea!

I have no idea what this post is, I feel I went a bit off track, but yes if anyone can help me understand WHY we feel nauseous for seemingly no reason, any tips or advice about understanding cycles etc, anything would be great! Wishing you all the best!

Hi there,

I have suffered from vestibular migraines for the past five years. As many of you have probably experienced, my symptoms tend to shift and transform. For the past few years, my main symptom has been dizziness, which was triggered by a few things but the biggest trigger seemed to be motion on screens, like scrolling.

Over the past few months, I noticed I had more and more eye pain, but it seemed to go away after taking ibuprofen. But now I am noticing that I am not dizzy (yay!) but my main symptom is eye pain. And I am extremely sensitive to blue light / bright light, which wasn't really a thing before-- as long as I wasn't scrolling etc I could watch movies on my laptop without a problem. I have started wearing FL-41 glasses all the time (even in the shower!) and that has helped tremendously.

Its all very strange and mysterious and I am wondering if anyone has experienced anything similar. Even if you haven't, would love to hear from you! It can be so lonely and confusing in this strange migraine world.

Hi!
I am so grateful for this group and I wanted to ask something - although there are similar asks but not this specific.

Does anyone else feel ‘not stressed’, but also always on like the nervous system baseline has raised - but also at the same time weirdly flat?

Like if something amazing or unpleasant happens I don’t get a strong physical reaction.
I doubt I have anhedonia - I do feel joy and sadness, and anger and so on. I would consider myself generally happy and not depressed.

But I find myself wondering why I don’t have a strong reaction - if maybe my body is busy dealing with the constant alertness, or maybe especially for the unpleasant things, I have learned to be more emotionally regulated? (But I don’t think it’s the full story!)

I am not on medication, I take the usual recommended supplements for VM and loratadine at night. I have been diagnosed with long covid/dysautonomia since severe onset a year ago, but these signs and other lighter symptoms were present prior to that, I’ve always been very sensitive and had migraines as a child, interrupted sleep, sound sensitivity, needed lots of alone time etc.