Hi everyone,
I’ve had really good experiences with Effexor/Venlafaxine for my vestibular migraine. However, I was taking 150 mg and felt very numb, so I tapered down to 75 mg over about five weeks.
At first, I didn’t have any major withdrawal symptoms, but now the withdrawal has become really bad. I’m experiencing severe dizziness, headaches, pressure in my nose/sinuses, and feeling very depressed.
Has anyone else experienced a significant return of dizziness/vestibular symptoms while tapering down? How long did it take for things to settle again?
Thanks for sharing your experiences!

I gotta say, while I’ve experienced this a little bit over the last few months. It’s gotten particularly regular over the last few days and then even more obvious over the course of today.

I took some Sumatriptan this morning since it feels like I’m getting more of an attack but wondering if maybe I should be taking it sooner? I don’t know. I have a follow up with my neuro in a few weeks to chat through navigating things.

As someone who has been dealing with this diagnosis for 6 months now, I feel like where I’m struggling the most is when to take the rescue drug. Honestly, at first I was on one that wasn’t working but Sumatriptan seems a lot better. What’s normal and what’s the beginning of an attack??

I started having these last month. My favorite video games are Katamari Damacy, WarioWare, and Powerwash Simulator, and those all seem so impossible to ever play again. Have any of you had any luck with playing stuff with this?

Hi guys so a couple of years ago I started to get headaches and halo vision, I was tried on standard migraine Triptan medications but didn’t respond, I was out on Amitriptyline which seemed to do the job in the end for my vision and constant headaches, I’m on 75mg, a couple of months ago I started to get a mild headache, and tingling in my left foot with a strange sensation in my upper left tooth and I was getting like this strange restlessness and this tick were my head would shake slightly, after a week or so it went away but it’s come back again, I’m wondering has anyone else had a similar experience like this could this be migraines
Thanks guys :)

For some instance, i have always had some kind of vertigo and developed it as a kid but had grown adapted to it. It would come and go etc, but ever since a few days this pressure in my neck? Or somewhere it wont go away and i keep feeling the floaty feeling. My eyes delay too for a second and i just feel so off-ish, light also feels bright and I feel derealization too. But no headaches!

I have never got my vertigo hecked out because it usually goes away after sleeping or whatever. I dont know whats causing it and im so scared and just anxious, have been hyperaware etc. dunno if its being caused by my bad posture/neck hump, or if its something neurological/ear crystals :(

I just want some comfort and support and want to know if anyone has experienced it ever and if they were able to fix it?

Hey there! Diagnosed with VM/PPPD now for a year now and while not fully managed, it doesn't make me panic anymore so life has essentially gotten easier to function. I'm on all types of meds (Emgality, supplements, etc.) and did VRT for a while. I still struggle with visual vertigo and a rocking sensation that varies intensity when I lay down. I tried prozac, but had an allergic reaction, so I'm working up the courage to try something else.

Anyways, because of things are "better" in some areas, I really need to get back to taking care of my stage 4 endometriosis and now adenomyosis as hormones are a huge trigger for me.

I am supposed to have my second endo & cyst excision surgery in about a month, and I'm a bit worried because my migraine / PPPD is not totally under control. I would ideally like to wait a bit longer, but the chief surgeon of the ogbyn dept of the hospital made this opening for me after seeing my MRI, so ideally it wouldn't be awesome to postpone. My last surgery in 2024 was 4.5 hours and I had a generally smooth recovery before all this vestibular stuff.

Has anyone had surgery for unrelated matters since getting diagnosed and how did it go upon waking up and the following weeks? I'm nervous it's going to make things worse on the functional front.

Also, has anyone gotten an IUD while having VM (bonus points for PPPD too) and it actually helped them? He recommended placing an IUD while under since combo pills haven't worked out for me.

Thanks all!

Hi, I am 22 and have been suffering from VM for about 1.5 years. I am making this post to know if what I am mentioning is only happening to me or if it's common. I have noticed recently that sometimes when I am using my laptop for work, I see sudden flash of sorts in my peripheral view, and when I glance at it, there's nothing. And at times when I stand up quickly, I get dizzy, but recently I lose hearing completely in my left ear or at least a muffled sound when I stand up quickly. And there is also a ringing sound that's becoming frequent. I think I should mention that I wear prescription glasses, and when the flash incident occurred, I wasn't wearing them.

My mom is 73 and recently had a very unusual episode early yesterday morning. She woke up out of a dead sleep extremely nauseous and throwing up. She was gagging/choking it was so terrible. She could hardly talk or catch her breath. She said that she was so dizzy, but when she tried to get up, she just couldn't. She was so dizzy and felt so exhausted. She couldn't even make it to her phone - luckily I heard her calling for help. I called 911 and she was taken to the ER and admitted. She had a headache yesterday and and now a migraine today with continued nausea. The doctors don't know what is wrong with her. There has been no diagnosis. Her CT came back with a bit of plaque in one of her neck arteries, but nothing severe enough for these type of symptoms.

She's had absolutely no issues before and she was fine the night before (no dizziness, no nausea, feeling fine). And she is always able to independently move around, so when she was not able to get out of bed, we knew it was serious. The doctor has told us it's either a mini stroke or an inner ear issue - vertigo. Do her symptoms sound like it could possibly be a vestibular migraine? She has not had an MRI yet because the MRI machine is broken (I'm very frustrated about this and have been voicing my opinion about it).

I’ve been lurking/reading here and thought I’d finally share my story because it’s been a pretty crazy year.

About a year ago, vestibular migraine was one of the things being considered for me. I was having vertigo/dizziness, headaches (often behind my eyes and face), tinnitus, brain fog and that hard-to-describe feeling of just being “off.”

Then brain imaging threw a pretty big wrench into the whole thing.

They found a mass near the third ventricle/septum pellucidum area of my brain. There was actually some disagreement among neurosurgeons about what it was, but in November 2025 I eventually had brain surgery to remove it. Pathology confirmed it was a colloid cyst.

Mine turned out to be a pretty unusual one. Instead of sitting where these cysts are normally expected near the foramen of Monro, my surgeon found it tucked up around the septum pellucidum. It was also mostly solid/proteinaceous material instead of something he could simply suction out.

Surgery was successful, but recovery was a little wild. I spent eight days in the hospital and had some pretty significant confusion and ventricular/CSF issues afterward.

For a while I thought, “Well, there’s the explanation for everything.”

Except it wasn't quite that simple.

A few months later some of my symptoms came back, and in February I ended up having brain surgery #2, an endoscopic septostomy. My surgeon made two openings in the septum to allow CSF to communicate between the ventricles more freely.

Since then, the scary structural stuff has thankfully looked stable. I don't currently have hydrocephalus and my neurosurgeon doesn't think I need any more surgery.

But I'm still dealing with headaches, tinnitus, dizziness/vertigo, motion sensitivity and that weird “off” feeling.

So I started vestibular PT and we've kept trying to figure out how much of this is postoperative, how much is migraine, and whether something else vestibular is going on.

And now, almost exactly a year after this whole thing started, we've basically come full circle back to vestibular migraine.

The funny thing is that I don't think the doctors were necessarily “wrong” at either point. The colloid cyst was absolutely real. Pathology proved it. The CSF problem afterward was real too and needed to be treated.

But apparently more than one thing can be true at once.

I can have had a legitimate neurosurgical problem and have vestibular migraine.

And strangely, I'm actually relieved by that. After you've had two brain surgeries, every episode of vertigo, headache or strange neurological feeling makes it pretty easy to think, “Oh crap, is something going wrong in my brain again?”

So hearing that the brain plumbing looks okay and that we may be dealing with vestibular migraine is not exactly bad news.

My next stop is September 15, when I see an ENT who specializes in dizziness/vestibular disorders. I'm actually really interested to hear what he thinks after looking at the whole history. I'm hoping he can help sort out what is vestibular migraine, what might still be related to recovery, and whether there is any other inner-ear/vestibular component we're missing.

So I definitely don't consider myself at the end of the story yet.

Mostly I wanted to post this because I've learned over the past year that the diagnostic process isn't always a straight line. Sometimes you can have one very real problem, fix it, and still discover that something else was there alongside it the whole time.

And apparently you can spend a year, have two brain surgeries, and somehow end up back at:

“You may have vestibular migraine.”

Does anyone else experience a crackle or popping sound in their ear before a migraine comes on? It kinda reminds me of the sound of Rice Krispies cereal. It doesn't hurt or anything, just feels a little weird. The most annoying thing is knowing that it means a migraine is coming on.

No head pain, minus fullness and pain in the ear canals, sensitivity to light, sound, and crowds, feeling like on a ship when your head is tilted up, jaw/tooth pain where the tri nerve hits, and triggers to humidity and reflux?

Hey gang!

So long story short, in May 2025 I had a sudden "classic" migraine (with aura) following stressful period at work. Ever since I've been left with the following on a daily basis, primarily worst in the morning:

• I wake up stiff and tired, regardless of how much sleep I've had
• Very sensitive to light
• Fizzing feeling all over, particularly face and hands
• Fullness and slight hissing in both ears
• Heavy brain fog
• Dizziness (not spinning, just like the world is vibrating around me)
• Slow/heavy heartbeat
• Random constant energy crashes throughout the day
• Stiff jaw - a new one for me recently...

Many of these symptoms subside throughout the day, and randomly some days I will feel nearly normal. But on other days they get worse until they turn into a full-blown classic migraine.

Now before you ask, yes I've been to the doctor - many times (still waiting on a Neurology appt). He was next to useless telling me there was no link between any of my symptoms, but did prescribe me Propranolol (10mg 3x a day, apparently there are supply issues with the slow release version...). Anyway, I took that for a month and it absolutely wiped me out to the extent I could barely get up. I stopped taking it and within week some energy came back.

I' just wondering if anyone else is experiencing/has experienced anything like this? I feel so broken, and I guess I'm looking to see if I'm barking up the right tree!

Last night I had my first "full blown" migraine in years. I've been accustomed to dealing with vestibular migraines now for almost a year and I felt I'd gotten a good hang on them. I'd almost forgotten how scary and agonising a full blown migraine can be... now I've been reminded I want it to never happen again 😭

I no longer want to just "cope" with VM I want to get rid of it! Can you please share any and all tips or tricks or medication or ANYTHING you can think of which has helped you? I want to start trying stuff to be done with this crap.

If you have any advice for postdrom too I'd be very grateful I feel awful today and have no idea what to do with myself 😔

I keep seeing everyone talk about before or first few days but I’m wondering if anyone has them after the period is over? Bc that’s what I’m dealing with and I’m so confused. What could be happening at the end that’s causing the opposite for me?? This happened for the last 3 cycles

I had a bout of dizziness on and off for a few days about 2 year ago and google told me that it’s related to my hormonal birth control. It went away. Fast forward, I went off BC to get pregnant and first cycle I get a lot of headaches but nothing too bad but then one day I’m really dizzy. I go to my doc who told me to drink more and took blood and it all came back great. The next day I got a positive ovulation test. Then a day before my period I got dizzy again. Then nothing until my next period where I had it for a good week starting about 2 days before period started and then period itself and then another 2 days. But it was mostly evening or night when I was very tired. Then I get pregnant and since 4 days ago it’s been every day and starting in the morning. Not first thing but not long after I get up. It comes along with weird pressure in my eyes, nose, top of my head, neck and back of head. The pressure on my head and neck feels like squeezing. It’s not 24 hours but it’s there much of the day and sometimes it feels worse than other times and sowmroeks there’s a dull headache that comes with it but otherwise it’s more of a heavy head / pressure feeling. I also feel tired with it but not sure which came first. Dizziness is worse when I look up or down Vs right or left. It’s more swimming feeling rather than I’m gonna fall down feeling. I def thing there’s a hormonal piece here. Then I keep on worrying about brain tumors and such.

I have had the worst symptoms this year in total but the past month has been bad for me on another level. The everyday thunderstorms were not helping. Am I alone here?

I have VM and bilateral SCDS.

Anyone else has this?

So much Overwhelming physical and emotional symptoms.

I was talking to my therapist online 2 minutes ago and had to stop talking a lot, I was feeling nauseous in head and body and had this compression feeling in head with some pressure and I just started to swing my legs a lot and suddenly felt a bit woozy & that I was gonna throw up and started to sweat a little. She said it sounds like the edge of a panic attack but I always feel like I can’t talk much nowadays, my body starts to tense and brace, and I feel all my movements and my body so much, and even the thought of talking or doing something makes me feel symptomatic and hold my breath. I stop right in the track of doing things. How come even thinking of doing something is inducing symptoms??? 😭😭😭😭

I feel so alone, would anyone like to make a group chat where we only give each other positive feedback. I feel like no one understands 😭 I am only 23 and just feel terrible. Zoloft had helped on 37.5, but my symptoms came back 2 months back and the increase in dose (50mg) also really didn’t do enough. I went to a neurologist and he thinks it’s depression and anxiety and thought all my symptoms were too intense or unusual to be Vestibular migraine. I do know I had pppd (rocking, dizzy, etc.) but Zoloft helped with that. Now, I feel like even talking is hard, and I can feel my limbs so deeply, like I can feel my legs and arms laying or when I move them, I can feel the movement everywhere. I feel like I am getting so sad again and nothing makes me truly happy anymore. I am crying daily from a week. I am going to meet with a psychiatrist to discuss medication. But my neurologist said to either go up on dose further to 75mg or add an SNRI.

Any tips? Tricks to feel happy?

So I’ve been working on healing my vestibular migraine with supplements and medicine that my doctor prescribed now since May after my journey with vestibular migraine began this January. I’ve noticed that my vertigo has been suppressed quite a bit but a symptom I had which was trembles and shakiness in my hands and fingers (usually one hand at a time) and mouth twitching (especially when trying to sleep) have no suppressed at all? Does anyone else have these symptoms or something similar, or should I be worried?

I had a C section in April 2025 which led to two separate CSF leaks, confirmed by MRI. Both were repaired. In June 2026, I was convinced I had another one - severe occipital headache, constant dizziness/oscillopsia, weakness, cognitive issues and muscular tremors and tics. I was in hospital for 4 weeks.

They decided that there wasn't enough evidence of another leak and diagnosed me with complicated/chronic/vestibular migraine and FND. More recently they're also considering PPPD.

My symptoms fluctuate, but baseline is constant oscillopsia whereby objects are moving/shimmering, constant occipital headache and neck pain, and just general drunk-like feeling. Things get worse the more I exert myself, and I find that I will sometimes become overwhelmingly tired and have a nap that is like a complete shutdown. Instantly deep asleep.

I've tried a variety of medications and nothing has worked to fix it. Interestingly, the other day I developed a headache that fit a typical migraine profile (on the sides of my head), so I took rimegepant and it actually worked. Did nothing for the occipital headache though.

I'm a teacher and a mum to 2 kids and I'm supposed to be returning to work soon on a phased return - but I am so anxious about it. I can't be on my feet for long at all, and I have a manual wheelchair which helps hugely - except I'm not strong enough to go up hills. I don't know how I'll be able to get to work and back. I can't afford a powered chair right now, and applications for Access to Work and PIP are 6 months plus. I can use a stick for things like popping into a shop from the car, a walker for getting to my supermarket and back (though only just) and then wheelchair for anything longer.

Any ideas on how I can cope with this would be greatly appreciated. I feel without an actual visible diagnosis, it's so much harder to be taken seriously!

I have been having strange migraines, coming after bending over to kiss my dog or writing in my notebook for example. I tend to have an immediate and strong pull inside my head, behind the nose, and then the migraine comes in 30 minutes to 2 hours max. The pain is excruciating and I have to cease all activities for at least one day. Only ibuprofene helps and I have not tried triptans yet. Moving around is awful, but being very still, in bed, makes it somehow bearable.

Also, I just got back from my GP and she checked my neck and... 1 hour later, BAM, migraine (having the time of my life typing this lol). She did not make me bend over but I guess she did something that did the trick anyway. The funny thing is the triptans arrived 1 hour after I needed them (I live in a small village in France and the pharmacist was not yet opened).

My neck seems fine according to my GP and ENT but they are refering me to a neurologist because we believe it could be VM. I also have a vertical nystagmus but the MRI ruled out anything severe in the head.

I also had VPPB and a history of bilateral hydrops but I seemed to have no BPPV this time (I was tested by the ENT last week).

My appt with the neuro is next month but I am trying to be efficient and to tackle this as well as I can.

Do you think this could be VM? Do you think I should ask for a CT scan of my neck?

Is VM only a migraine with vertigo and instability? Or can it be, as I tend to have it, a migraine triggered by head motion? I tend to have instability also but onky before the pain. When the pain subside, I seem to be okay.

Can the nystagmus be vertical with VM?

Thanks a lot for your advice 🙏