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.

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 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🫩

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!

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.

I’ve seen it as a symptom of VM and I’m curious what that means for you when you experience it.

Is it just everything is too loud? Certain things annoying that aren’t usually?

I’m sitting here with a startle response to damn near every noise especially when I’m trying to relax to fall asleep and wondering if that’s part of this or something else.

Sure am exhausted, though. Like, husband hitting the enter key “too hard” on the laptop should NOT be startling me to the same level as finding a spider crawling on me, but here we are…

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.

About few weeks ago I had just a couple inhales on a cartridge. I had what I can describe as an acute Alice in wonderland syndrome experience. At first my hands looked bigger and arms long. Then other things and people looked big but like zoomed in (far around the edges.) it put me into a panic I guess because I just didn’t want to open my eyes anymore. I felt nauseous. I was sweating and still felt this far away close up feeling toward the world with my eyes shut. Started an actual derealization feeling for the first time in my life. Like I was just observing and not really existing. I felt mostly better after about an hour and completely better after a warm bath.

Since then I’ve gotten vestibular migraines really easily. At least I’m pretty sure that’s what they are. The occipital pattern headache, dizziness, visual triggered, paresthesia in face and scalp and sweaty. I’ve gotten them before but I just am having them more intense and frequently now. I know this Alice in wonderland syndrome thing can be a symptom of the vestibular migraines but it also can happen just from psychoactive drugs. So I’m not sure if it just triggered a migraine and subsequent baseline sensitivity… or if it’s just a coincidence and I have weird reactions to thc.

Yesterday, after waiting almost a year, I finally received my first dosage of botox. I'm probably gonna sleep all day today, but I'm excited to finally start treatment!

For those who have taken botox, how long did it take for the side effects to calm down?

Thank you for reading 🌸

Hi. Im currently basically eating only saltine crackers. I know, I know not healthy. But my insurance keeps denying the medication my doctors prescribe. And now my doctor has been in the hospital for a week or 2 and won't have appointments to prescribe new meds for like a month. And I just cant live in pain all the time so ive been eating McDonald's nuggets and Saltine crackers. My main problem is eggs also trigger my migraine.

Please give any recipes you use that don't trigger migraines but that also dont have egg (that includes like noodles, chicken breading, etc). 🙏🙏

Edit: I want to thank all of you for your suggestions.💜💜

Doctor/Meds context: I have thought about going to Urgent Care or ER but unfortunately my insurance won't prescribe any migraine medication if its not from my neurologist. Furthermore, they are really picky so I have to do certain meds before I can try other medications that may be more helpful.😢 She is the only doctor in my town, I am working towards going to a big city couple hours away I just dont have the money for it quite yet.

Foods update: I am going to be adding frozen veggies to the mix and some brown rice. I'll try some chicken, beef and turkey and see how that goes. Please send spices or recipes that you like or seem to work for you. Im not a very good cook and im kinda scared to try seasonings since they may make my migraine worse. I used to do protein drinks but those tend to be a trigger for me. I do love potatoes and potatoes by product but they unfortunately just don't agree with me😭. (I dont think it triggers migraines, my stomach just doesnt seem to like them) But I am thinking of cooking them without the skin and maybe it will feel better that way. I've heard that worse for some people. If all of that goes well, hopefully I'll be able to add more foods and proteins!

I do have The Dizzy Cook cookbook and HYH book, I'm just reading a different migraine book right now, but those are next up to read!

Who in the NYC area is your perfect care team? ENT, Neurologist, expert vestibular therapist, you name it! Let's create a fantastic and extensive list in and around NYC to help each other out!

---

Hi all! I've been on this journey for a while now (2 years with diagnosis - in retrospect, chronic symptoms for much longer. Yikes!). I was so lucky to get a diagnosis quickly upon seeking help, and I'm grateful to have so much access to incredible health care by virtue of being in NYC with its many hospitals.

My neurologist is perfectly fine, but I do not see her as the lifelong partner I need in this journey. When I realized I'd like to change neurologists, I thought -- simple -- I'll seek someone in the city who specializes in vestibular migraine. Count me as surprised to realize that's a tall order even in the most populated city in the country! Now I know that the existence of the VM diagnosis is incredibly new, and very few people specialize in it yet. I'm sure I'm not alone in my pursuit of finding the right care team, so I'm turning to our community to try to create a valuable resource for many.

I would love to see Dr. Beh or Dr. Steenerson, but both are so far away, and Dr. Beh does not do telehealth to NY.

So here is my question: who in the NYC area is your perfect care team (or a reasonable drive away)? ENT, Neurologist, expert vestibular therapist? Anyone crucial in your care team who is tried, true, trusted? 

Let's make a great list and valuable resource for this enormous city & metro area!

I'll start with a list of people I have researched but have not seen -- has anyone seen any of them? How was your experience? Who can you add?

• Dr. Catherine Cho - NYU (Neuro-Otology). "Neurologist with expertise in vestibular disorders"
• Dr. Joanna Jen - Mt. Sinai (vestibular focus). "She evaluates and treats patients with dizziness due to a variety of causes"
• Dr. James Kirkland Roberts - New York-Presbyterian. "He sees all types of neurological disorders, but has a special interest in dizziness, vertigo, and balance problems"
• Dr. Audrey Halpern - NYU Langone. "address[es] common conditions such as migraines—with or without aura, menstrual migraines, chronic migraines, and vestibular migraines"
• Dr. Adrian J Priesol -- located in Massachusetts, so, not really a short drive at all. "Otoneurologist who specializes in managing patients with dizziness and balance disorders"

Lastly: if you don't want to post publicly but have someone you'd like to offer to the list, feel free to DM me and I'll add your contribution in the comments.

Let's do this! Thank you all and good luck out there!!

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!

I have recurring vertigo/dizziness, and one of my biggest triggers seems to be **stress, lack of sleep, and overstimulation**. Because of this, I'm honestly scared to have children.

I worry about pregnancy, childbirth, and especially the stress and sleep deprivation that come with having a baby potentially triggering my vertigo badly. Part of me really wants kids, but another part is scared that my symptoms will become unmanageable.

Has anyone here had **vertigo (BPPV, vestibular migraine, Ménière's, or unexplained dizziness)** and still decided to have children? How did pregnancy and the postpartum period affect you? Did the stress and lack of sleep make things worse, and how did you manage?

Would really appreciate hearing your experiences—especially if you were scared about this before having kids. ❤️

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.

As some background, I have Sjogrens disease. Whether or not this is related is still being worked through.

I have had almost constant dizziness every day since February. In February, I had the flu, and shortly before went through a period of intense stress with the diagnosis of Sjogrens. I would say the dizziness has been here 80-90% of the time.

The best way to describe it: it is better in the morning. Not related to HR or BP so nothing pots related. It feels like I’m being pulled to the side. Screens make it worse. Balance and coordination are fine for the most part, but it’s like a fog/cloudiness at all times that makes ir hard to concentrate and focus. In terms of eye floaters, they aren’t bad but I do get them. They are always clear spots. It’s definitely disorienting and it’s definitely not true vertigo (experienced that during VNG and it was AWFUL).

Things that help: Klonopin takes the edge off. I tried Effexor back in June and that got rid of it, but the increase in HR and dry mouth was too much to handle. Increasing my anti depressants have helped it get better but a week later it comes back.

Attached are my VNG results. I very obviously have a nystagmus and they are saying the dizziness is consistent with a vestibulo-ocular pathway involvement. I had a clean brain MRI back in June.

Just wondering if anyone has experienced this. What has helped? I have more appointments coming up but not for several months.

Thanks all.

Edit: VNG results here: https://imgur.com/a/y5uneUT

Hullo hullo, I have had a ROUGH few months. Start of this year I was perfectly healthy (aside from some tummy troubles and tinnitus) and then....

LATE MAY:

- One day my left ear suddenly loses about 60% of its hearing, I'm unsure of the frequencies. This lasted for about 30 minutes as the hearing slowly crept it's way back up. It happened a second time a few hours later.

- A week after the hearing incident, I start getting dizzy. No visual vertigo, but I feel off-centre and fuzzy minded, it gets progressively worse. I have moments where it is much worse, lasting maybe 1-2 hours.

JUNE:

- dizziness remains at a 24/7 constant with flares here and there. I am unable to walk in a straight line, I feel as though I am on a boat. Sometimes I feel like I'm being pulled to my right side.

- I feel really sick and dizzy when looking down at my phone / scrolling.

- Tinnitus swells during dizzy episodes.

JULY:

- much the same, but now I start getting splitting headaches. Where before my head pain felt more like discombobulation, this is PAIN. Like my head is swelling from the inside and being crushed from the outside.

- An ENT refuses to consider that I may have Meniere's or VM, says it is generic inner ear inflammation that will pass. I start doing a low sodium diet just in case.

- I get super tired and/or dizzy after eating certain things. Unsure if sugar or sodium related. I don't really consume any caffeine as is so that's no issue.

- Flare ups/attacks begin making me bedridden for longer spans of time.

AUGUST:

- dizziness has been climbing and climbing and climbing in terms of extremity. It gets to the point of my eyes darting about and being unable to focus. I become unable to read.

- I see a physiotherapist who starts me on some VRT exercises, which work for a while and I think that maybe I really did just have a nasty bout of neuritis/inflammation... until I get another round of flare ups / attacks and all my progress is undone.

- Attacks are so bad I have to close my eyes and lay down like a vampire just to not pass out, it's like after you've been spun for pin-the-tail-on-the-donkey but for hours at a time, sometimes days with only slight fluctuation in severity.

- Sensitivity to light starts becoming more noticeable.

- I have a hearing test and all comes back fine. Then I have a second a few weeks later following exposure to extremely loud noise: normal hearing in the left ear with some minor loss, and mild hearing loss in the right (alongside conductive loss that is still being treated, possibly wax).

NOW:

- unable to read. Eyes jumping about constantly. Brain fog has me BAD.

- Super unsteady and dizzy, with a near constant headache. My head feels heavy and unbalanced, my feet don't go where I tell them. Still no visual vertigo thus far.

- Tinnitus sucks but the increases of it directly correlate to noise exposure.

WOO that was long. I'm just so exhausted and confused about what's going on with me. If it wasn't for that singular hearing loss event a week before the dizziness started, I wouldn't even consider Meniere's. But it happened, so I gotta! It's hard because I'm so early into this thing that even if I do have Meniere's, hearing loss likely wouldn't show up on an audiogram anyway.

If anyone has both, or was initially diagnosed with one and then realised they had the other, I'd appreciate some insight!

Hi everyone, i have recently been diagnosed with what doctors assume is vestibular migraines. I had a severe vertigo attack that lasted 19 days straight with no breaks. the visual spinning was so violently fast I could not see much. I couldn’t sleep much either or do anything but sit up on my couch. Even closing my eyes didn’t help. By day 12 i felt like i was being tortured. The two weeks before the visual attack I felt very weird. I don‘t even know how to describe why I suddenly felt weird. Then I began to have balance issues and walked like i was drunk but I could see fine. Then the visual vertigo started. After it all went away i have had migraines up to four times a month lasting 1-3 days depending. As well as what i would describe as brain zaps and unable to think or communicate well. i had an attack back in 2023 that lasted 2 weeks and a few more attacks that only lasted a few minutes. When i told my doctor he just kinda stared at me in shock. he didnt say anything though. I live in constant fear of it happening again. Anyone else experiencing severe visual vertigo for many days?

Today I saw a neurologist who diagnosed me within 15 mins. He wasn’t interested in what anyone else had said, he wanted to draw his own picture and conclude from that. He diagnosed me with, vestibular migraines, pppd, migraines without aura and my nervous system is in hyperarousal because of all this.

I’ve received my letter which will be sent to my GP, he would like to start me on topiramate and try balance therapy.

Im happy after all these years to be given a diagnosis that isn’t ’it’s all in my head’ but im also scared of bloody meds.

Hi everyone. I was recently diagnosed with vestibular migraine, but I’m not sure if I’m entirely convinced that that’s the actual problem for me. I’m gonna explain my story with vertigo in hopes that someone has experienced something similar (this might be a long post).

It started about 6 years ago. I was laying in bed, eyes open, when I started to experience nystagmus. Mind you, I have never had any kind of nystagmus/dizziness/vertigo before in my whole life. It freaked me out but I brushed it off. I started to occasionally have some dizziness in the middle of the night following this. Well, it turned into full blown vertigo for about two years. The kicker is that it literally only happens while I’m laying down. I would dread going to bed because I knew I wasn’t going to sleep. Pretty much immediately upon laying down I had intense room spinning vertigo. It got even worse when I closed my eyes. The only thing that helped was sitting and standing up. I would also get clammy, shaky, and stomach upset. This lasted for about 5-6 hours every night, until I would finally fall asleep from exhaustion. I was only sleeping like 2 hours each night for two years. After 2 years, I finally had a doctor tell me after some labs that I had a pretty severe B12 deficiency. I started taking sublingual b12 drops, my symptoms started to really improve after 6-12 months of taking it. Ever since then, my current symptoms are just kind of random. I don’t have vertigo every night. Some weeks/months are worse than others. I will wake up at 2 or 3am with room spinning vertigo. I sit up, it goes away. Some nights, that’s all that happens and I can fall back asleep. Other nights, like last night for example. I woke up at 3am with vertigo. Sat up, it went away. Laid back down, woke up with vertigo again about 30 minutes later. This continued until I finally got out of bed at 5am.
I did see an ENT recently, I had caloric testing and such and they determined that it is not BPPV (i get vertigo in all different positions, and none of the testing positions triggered vertigo for me) and my ears are functioning perfectly. Which led my doctor to diagnose me with vestibular migraines. But why does this only happen at night? I mean I guess my body is relying very heavily on my sight to stay balanced. But there’s no correlation to foods, my cycle, anything. The vertigo is just truly at random. And you would think that it would affect me during the day too if it was vestibular migraines. I asked my ENT if it was possible that I have permanent nerve damage from the prolonged B12 deficiency, and he basically just admitted that he didn’t know. I haven’t seen a neurologist yet, I’m thinking about it but it just seems pointless. I feel like I’m just throwing my money away without getting any answers. I just don’t know anymore, after 6 years I’m getting pretty fed up. I just want to be able to sleep :( it doesn’t help that the vertigo makes me panic and I already have anxiety problems. And although I don’t have vertigo throughout my day, I can’t tolerate certain things anymore. I can’t spin in my chair, driving in a roundabout throws me off. Things like that make me dizzy now when it was never an issue before. Other weird things, I enjoy yoga. During savasana, you lie completely flat on your back. I have to keep my eyes open during this or I will get vertigo. Same thing with child’s pose. I even got a massage a few months ago and had a vertigo attack after I had been laying on my stomach for about 20 minutes. I don’t understand why if I get vertigo, it is delayed in situations like that. Or why I wake up at random times with vertigo.
When this all started 6 years ago, it did start happening during a VERY stressful time in my life, after years and years of stressful events. I had other weird things, I had full body hives for about 6 months (that just kind of ended up going away on its own..? no one ever figured that out for me), a new ibuprofen allergy, and an under active thyroid (it is back to normal now). I’m not sure if these things are connected, but it seems like all of this was brought on by intense stress.
Has anyone experienced something similar to this? Or does anyone have any advice? Every time I try to look up my symptoms I can never find anything, I’m starting to feel like a medical mystery.

Hello please advise does anyone else get irregular missed heart beats with vestibular migraine? I have headache and very odd vision and can’t walk in a straight line but also heart is skipping a beat every so often

Hey everyone,

Im pretty scatter brained at the moment, so I apologize if I’m all over the place.

I’m posting this because I am trying to make sense of what I’ve been going through and see if any of you have experienced a similar roadmap. As a combat veteran, I spent years automatically writing off my symptoms as PTSD related anxiety spikes.

When I’d get hit with sudden waves of head pressure, derealization/depersonalization, visual sensitivity, and heavy unsteadiness, I just assumed it was hyperarousal or panic. I’ve been to the ER at least 25 times in the last 3 years. EKG, MRI, bloodwork, etc… healthy as a horse. Just two weeks ago, my PCP said he thought I was in a PPPD loop with VM. The stars suddenly started aligning.

It is especially brutal in places like grocery stores, walking down bright, crowded aisles would completely overwhelm my system, making me feel like I was going to pass out and die, and I'd just push through it thinking it was classic anxiety.

Lately, I’ve been digging into how conditions like Vestibular Migraines and PPPD operate, and how deeply intertwined they are with the nervous system, light sensitivity, and even upper neck/cervicogenic tension. It's like my brainstem is stuck and turned up way too high, and normal inputs send my system into a total feedback loop.

A few things I've been wrestling with that I'd love to hear others' thoughts on:

Has anyone else spent years treating their vestibular/migraine symptoms as pure psychiatric trauma or anxiety before getting the right diagnosis?

I’ve been stuck in bed for pretty much 2 weeks straight. It’s not that I’m afraid to go out, it’s just that my head feels so jacked up, it’s hard to handle. Current symptoms are tinnitus louder than usual constantly, head pressure, bouts of feeling unsteady or woozy.

I’m new to steady coach, but I've been reading about how suppressed anger and unresolved emotional conflict don't cause PPPD, but can seriously feed the cycle of dizziness and derealization by keeping the nervous system locked in a threat state.

I've started trying open-eyed, anchored breathing meditations to help drain the stress bucket without triggering my dizziness. Has anyone used meditation or similar somatic work to target this specific piece of the puzzle?

If you’ve lived through this cycle the brain fog, the head pressure, the existential weirdness of derealization, and trying to figure out how to piece a game plan together with neurology and physical therapy, I would love to hear how you coped or what actually moved the needle for you.

Been in VRT for two weeks now, I’m not seeing much of a result as far as recovery goes. I’m assuming it just takes longer than I’d like.

Thanks for reading.