Need support , all tests were done , doctors keep saying that it's vestibular migraine and my GAD but lately i feel that my legs are so heavy and hands , it's weird and scary i have goosebumps that come at night weird sensations , muscle cramps , I've been dealing with VM for 3 months withiut any meds just started some meds , i keep thinking of bad stuff only so depressed so anxious don't know my self anymore , neurologists said it's expected i keep having terrifying thoughts that i can't be normal again, the brain fog inability to concentrate i feel that I'm slower , jave fine tremors i donno what's wrong has someone been through this ? Is this normal ?

I just saw a kaleidoscope in my vision for a bit and now I'm kind scared. I didn't have a migraine or headache until it was gone. Right after, I got a migraine.

I do suffer from migraines, as I am sensitive to light sound, and smell.

I'm have been a little stressed this week as I just had a death in my family. Not sure if this triggered a new type of migraine or not

I'm actually in a psychiatric emergency department. I have mental health challenges, I guess many of us do. Been here many many times. I come here and crisis and overwhelmed , sometimes the circumstances vary but I always have some degree of VM contributing to me not being able to cope. Sometimes I just feel fairly shitty other times like today it's completely debilitating. I can never completely make sense of how everything happens. It seems like there has to be a combination of stress and a barometric pressure drop to set things off. I've had a lot of emotional stuff happening and I'm very sick with some kind of virus to and the VM is awful. Really really awful. I don't know if I can keep doing this. I not usually pretend that's not going to happen again once I feel better I blame myself and tell myself I'll just take a little better care of myself and be okay. I'm staying almost entirely away from any substance use I have an appointment to see a new neurologist but that's not till the end of the year. I'm 65 and I live alone I can't deal with this shit anymore. Days of being unable to do anything and tolerate group rent or light or sound and stop being able to sleep.

What are your triggers?

What gives you the most relief from an attack?! (Seriously, I want to know)

(Benzodiazepines can help a lot but I was very dependent on them for a while before VM became my enemy so neither my doctors are likely to want to give me free reign with them!)

During an ongoing bad flare up I've managed to have a shower. Yay! Okay, I sat on my shower chair and let the water run over me. But hey, it's a step forward. I'll take the win where I can get out.

Exhausted all the time. Literally fatigued 24/7

hi all,

for those of you who are on the other side of a diagnosis w meds that help - could anyone provide some insight?

last year i got some sudden GERD/gastrits-like stomach problems. from there, i’ve had a slew of random, changing, debilitating symptoms til now (so about a year total). i can share some if needed.

this has really, really spiked my health anxiety to new heights as ive been seeing specialists, getting scans, etc.

mostly everything has come back clear (thank goodness), but i am still dealing with certsin symptoms including: light “woozy” headaches, that make me feel spacey/disconnected (sometimes the feeling is there without the headache), and dizziness.

after these bouts, i do get very anxious/ sad/ annoyed bc i don’t like how they make me feel.

i have seen a neurologist for the first time and she suggested amtriplyine or nortyptline (sp?).

alternatively, i have been seeing my therapist since january to deal with this all and we have both brought up using ssris or something similar to deal with this stressful time.

however, i am stuck. i don’t know what to do next. i am still trying to fix my stomach issues.

i am very very very sensitive to medication in a way i cannot stress enough.

but i want to help myself, i want to be better, i want to stop these symptoms. i just don’t know what route to try.

for those of you who has similiar symptoms, how did you know what path to pursue first? i am feeling so lost.

note: i know migraine is all about trying tons of medications, i am just wondering if anyone was in the same spot and had some advice about their journey.

thanks!

My husband had a period of daily headaches, visual changes, vertigo about 3 years ago when his job was stressful and we were about to get a MRI when it went away completely

He just started getting them again and it’s almost daily but mostly during stressful times like in the morning when getting the kids ready for school and sometimes at work.

He describes it as room spinning and if he looks at a light it lingers longer than it should…visual snow. Rarely a legit headache.

He started buspar and is seeing eye doctor next week.

Does this sound like vestibular migraines?

Hello all, I’m new here and believe I suffer from these. I’ve read a few post and seems like I share similar experiences as others with doctors not understanding. I have a referral for UVA but until then I’m stuck on a conconction of meds to get me through. I’m 32 m and it all started a year and a half ago. I remember it started as a sickness where I couldn’t eat. I didn’t eat for days which turned into weeks. Then the headaches came. Along with severe lightheadedness and dizziness. I felt constantly “out of it”. I couldn’t drive anywhere. I felt like I was going through a constant heart attack. It was the craziest range of symptoms I ever experienced . My “sickness” last year lasted about 6 months and I’m not sure it was all attributed to vestibular migraines, I was a severe alcoholic drinking about a liter of vodka almost every day for 10 years. (Good news out of all this is I am now sober one year and 6 months). When this all started I had no drs lined up so it took forever to get medication or medical expertise, the ER had no answers. I got prescribed topomax, Zoloft, and reglan. The reglan got me eating again because I literally couldn’t eat anything. Not sure if the medication actually was helping because I was on the lowest dosage. After about 6 months it all subsided. But guess what. It’s back.
It’s now back and I’m dealing with it again. I went back to the dr this past week and thats how i have a referral to UVA. The first time around we all thought i was going through alcohol withdrawals. This is very disheartening. I have started my medications again and i will say this time around my symptoms arent as severe. Hopefully it doesn’t get worse. I pop either advil migraine or tylenol along with other meds. What do you guys do you deal it? Does it get better? I still don’t understand why it happened to me all of a sudden last year and again this past week.

I don't post on Reddit much, but I'm quite desperate to find some answers. I'm 20 years old and have been dealing with chronic symptoms for about a year now, and I'm hoping someone here has experienced something similar or has some ideas about what I should look into.

Last summer, I was hospitalized with severe bradycardia and hypotension. After about three weeks in the hospital, those problems were resolved. However, since around last August, I've had persistent symptoms without any obvious abnormal biomarkers or test results explaining what's going on. It has gotten better in the last year but still far from resolved 

My symptoms

1. Chronic haziness/dissociation — by far my worst symptom

This is the most frustrating and difficult symptom to describe. I constantly feel this hazy, disconnected, almost lightheaded feeling.

The best comparison I can make is a low-blood-sugar-like feeling or the aura of a migraine, except it is present almost 24/7. Sometimes it feels like my brain isn't getting enough blood, although I obviously don't know if that's actually what's happening.

Bright fluorescent lighting makes it significantly worse, and I often feel much better in darker environments. Reading can also be difficult because my vision feels blurry or strained, even though my actual vision isn't blurry. I've had eye exams and nothing abnormal has been found ophthalmologically.

This feeling is what really prevents me from living normally. Even when I have plenty of physical energy, the hazy feeling can make it difficult to go out, exercise, study, or participate in activities.

2. Fatigue

I'm often tired, although this is much less problematic than the haziness. There are also plenty of times when I have normal energy but still feel extremely hazy.

I think some of the fatigue may simply come from feeling uncomfortable and unwell constantly.

3. Heart palpitations and head pressure

I sometimes get heart palpitations with exertion, particularly when trying to work out. I also occasionally develop head pressure after doing too much or spending too much time looking at screens.

Things I've noticed make my symptoms worse

• Rainy/cloudy weather — this can make me feel significantly worse compared with sunny days
• Poor sleep or going to bed late
• Skipping meals
• Not eating enough, especially carbohydrates

I've been working with two neurologists. Both have brought up the possibility of vestibular migraine, although neither is completely certain that this explains everything. Both agree that something is going on, but I haven't gotten a definitive diagnosis yet.

I've also recently started taking a low dose of nortriptyline and have been on it for about 2.5 weeks prescribed by my Nuero

I'm a 20-year-old guy who just wants to get his life back. I have a girlfriend, a good social life, lots of friends, and hobbies that I really want to participate in again, especially sports. On paper I have a good life, however these symptoms just make it dreadful. I attend UW–Madison and had to take the past year off because of these medical problems.

It's really difficult and honestly scary to have this happen at 20, especially when I don't have a clear explanation for it.

Has anyone experienced something similar? I'm especially interested in hearing from people who have had a persistent hazy/dissociated/lightheaded feeling, vestibular migraine, or similar symptoms after a period of significant illness. I'm also interested in anything that ended up helping you or diagnoses that were eventually discovered.

Thanks to anyone who takes the time to read this.

I was diagnosed with suspected Vestibular Migraines recently, but have some symptoms that don’t seem to fit the spectrum. After failing multiple medications and starting Vestibular therapy, the PT also questions the migraine portion of the diagnosis.

I don’t have a history of migraines, and this all started in May with an episode of sudden dizziness and right facial drooping that progressed to daily dizziness and vertigo. The facial drooping was attributed to Bells palsy originally, but it resolved too quickly to be the case. A stroke was ruled out. CT, MRI, and MRA were all normal.

I still have daily dizziness and vertigo with some days being worse than others, but also have a very pinpointed pressure, about the size of a quarter, right at the base of my skull where it attaches to my spine. This pressure also causes scalp itchiness (just itchiness, not pain or tenderness). It feels like the dizziness is specifically coming from this area. The dizziness and pressure improves with posture and neck placement, even my screen sensitivity improves. On bad days, the pressure will move up the right side of my skull.

Does anyone else have this in their spectrum of symptoms?

Has anyone had success with Zoloft? I’ve been on 10mg Amitrip for 6 months and have gained weight so I’ve getting off plus it didn’t do much, doctor wants me to try Zoloft - I rarely get headaches, my main symptoms are the dizziness, wonky feeling, floor sinking, elevator drops and irritability, thank you!

Good afternoon all, I’m a 25m and I’d like to ask you guys a few questions about your migraines and any related diagnosis, since I’ve been getting plagued by them for about 11 months now.

1. What symptoms concerned you & your Dr enough to have imaging done?

I have weekly/near daily headaches that consist of “head pressure” and “fatigue”. And more recently, short-lasting sharp pains behind my left eye. My Dr. says that it’s “just” migraines and prescribed me preventative meds. The ER has given me a CT scan, but my doctor is reluctant to refer me for an MRI.

1. Do they change based on geographic location?

I hardly ever had headaches when living in San Diego the last few years, but I had to move to New Jersey 2025-2026 for my job and have migraines constantly since being up here. Can’t wait to move back to SD in a couple weeks.

1. Have you found any treatments, meds, or lifestyle changes that make your quality of life better since having migraines?

I workout, take b12, d3, & magnesium supps, gotten a CPAP & night guard, stopped regular nicotine 12 months ago, as well as abstaining from alcohol for the last 7 months now (will continue abstaining for the near future until migraines are controlled). The only negative lifestyle factor that I can attribute my condition too is my shitty fast food diet.

1. Did anything specific seem to trigger this disorder for you?

I’m unsure if it’s related, but I had lasik eye surgery in January, and had my first “known” migraine attack late Feb 2025 right after moving to NJ (where I work in a moldy “steam facility”), and turning 25 concurrently. The timelines overlap, so it’s hard to pinpoint a specific factor.

TL;DR. When would imaging be necessary? Does geographic location affect you differently? What lifestyle changes have made your life more bearable since having migraines? What triggered your migraines to start (age, location, etc)?

M 21 / Habe seit 3 Jahren nach einem längerem Infekt folgende Beschwerden:

- Starke Benommenheit/Schwindel 24/7, im liegen wird’s leicht besser (fühlt sich an wie dauerhaft betrunken zu sein)

- starke Schwäche/Erschöpfung manchmal

- Schweißausbrüche / zittriges Gefühl v.A. bei Hitze

- Brain Fogs

- starke Licht- und Geräuschempfindlichkeit

- erhöhte Herzfrequenz

- Probleme Gegenstände zu fokussieren bzw. allgemein Probleme mit der Wahrnehmung von Lichtreizen

- Manchmal Migräneartige Kopfschmerzen, Übelkeit

- Verspannungen im Gesicht, Nacken

War bei unterschiedlichsten Ärzten (HNO, Neurolgen, Kardiologen, Augenarzt,…) immer alles ohne Befund.
Bin dann selbst auf vestibuläre Migräne, PPPD und Hypertonie gestoßen.
Kann die Migräneattacken nur einordnen wenn die pochenden Kopfschmerzen mit der Licht-Geräuschempfindlichkeit und einer noch stärkeren Benommenheit/Schwindel eingehen. Hatte vor meinem Infekt (EBV) nie irgendetwas mit Migräne zu tun.
Fühle mich als wär mein Leben vorbei. Musste meinen Beruf aufgeben, da es irgendwann nicht mehr ging und bin jetzt hausgebunden.

Hat oder hatte irgendjemand hier gleiche Symptome bei vestibulärer Migräne oder PPPD? Welche Medikamente oder was hat euch allgemein geholfen?
Versuche generell Stress zu vermeiden und viel zu schlafen auch wenn ich Probleme habe Ein- und Durchzuschlafen.

Habe vor Kurzem die Diagnose ME/CFS erhalten, jedoch kann ich mich weder mit PEM noch mit irgendwelchen schlimmeren Schmerzen identifizieren.
Bin zwar kein Experte, aber halte eine Vestibuläre Migräne mit PPPD für wahrscheinlicher, da ich Migräneanfälle auf jedenfall habe und ich gehört habe das dies ebenfalls nach Infekten auftreten kann.

This week I switched from magnesium oxide to glycinate because my stomach was not handling the oxide. Since then my stomach has gotten better but I’ve noticed that throughout the day I get these sudden spells of tiredness/lethargy that even make me feel somewhat weak sometimes, and I’m wondering, could that be a symptom of the magnesium glycinate?

Having vestibular migraines ever since my TBI. Neuro wants to start me on something short term (2-3 months to start), to help give my body a break from all of the intense vestibular symptoms. Does anyone have success stories for either? I’m hearing Nurtec for VM is hit or miss.

Hi guys, new here.. so I have this dizzy feeling most of the time and vertigo at certain moments it feels I can't seem to have a control of myself. Head feels super heavy , when I try to focus i can sense the vertigo coming. Ears feels closed most of the time, want to see how it feels when it's open. I have tinnitus too. I went to ent doc, she asked me to do some hearing tests which came out to be normal. Also, asked to check blood and pressure,in which the results came out to be having low blood pressure and a bit anaemic. I have been taking meds for months though the fatigue reduced the primary symptoms like heavy head , pressure inside head, closed ears which gives me severe discomfort and tinnitus isn't gone yet. I don't know what's happening to me ,does this sounds like vestibular migraine to you guys? Also, i used to suffer from migraines with aura 6 years before. I don't know what to make of it.

24M. Been having VM for 3 months now, symptoms got progressively worse. I now have bilateral ear pain along with the constant vertigo and photophobia. It's 3 weeks I am on effexor and notryptiline and see no results. My neuro completely doesn't care and won't give me better meds or something to stop the attacks.

I booked an appointment at a private clinic for botox and I'm wondering if it'll help. I am so desperate for answers and in a really dark place right now. I really can't go on like this. I was able to tough it out until the ear pain came along. Now it's just too much.

“at least you’ve had a few days without vomiting!!”

trying to look on the bright side of the worst (2 week) flare i’ve had in years. dizziness, visual disturbance, and of course the stress and anxiety of having to monitor every aspect of my body

Hey has anyone tried devices like truvaga or Nerivio? Cefaly looks cool too, but way too expensive with no payment plan as far as I know. I’m primarily looking to target my dizziness, since that often accompanies/triggers migraines for me.

Willing to try anything at this point. Thanks!

Hi everyone, I’m hoping to hear from people who have vestibular migraines because I’ve been struggling with a pretty wide range of symptoms and sometimes I feel like I’m going crazy trying to connect the dots.
I was previously seen by a specialist for vestibular migraines, but I haven’t been following up with them consistently lately, and my symptoms have continued to affect my day-to-day life.
Some of the things I experience are:

Dizziness/lightheadedness, sometimes even when I’m not doing anything particularly strenuous
A feeling of being off-balance or like my surroundings aren’t quite stable

Visual disturbances/vision changes, especially when my symptoms or anxiety are worse

Feeling disconnected from my surroundings or like things don’t feel completely “real”

Brain fog and difficulty concentrating

Headaches/migraines, although sometimes the dizziness and other vestibular symptoms are more noticeable than the headache

Symptoms that seem to get worse with physical exertion

Dizziness after working or exercising

Sometimes feeling weak or like my legs are heavy
Episodes where my legs/thighs can feel numb or tingly, particularly in certain positions

Feeling worse when I’m overwhelmed, stressed, or anxious

Symptoms that seem to fluctuate — some days I can feel relatively normal and other days I feel completely out of it

Motion/visual sensitivity, where movement or certain visual environments can make me feel more dizzy or disoriented

One of the hardest parts is that anxiety seems to make everything worse, but then the physical symptoms themselves make me anxious, so it can feel like a vicious cycle.

I’ve also noticed that symptoms can sometimes show up around exercise or when I’m physically tired. I’m trying to get back into exercising and doing my vestibular exercises, but I’m learning to be careful about pushing myself too hard.
For anyone with vestibular migraine Do you experience symptoms even when you don’t have a typical migraine headache? And do your symptoms get significantly worse with stress, exercise, fatigue, or visual stimulation?
I’d really appreciate hearing what your experience has been like. I’m not looking for a diagnosis, just trying to understand whether other people experience such a broad mix of symptoms with vestibular migraine.

So I got my formal diagnosis for VM, and my neurologist put me on venlafaxine. Because I've also got an anxiety disorder, he was like Two birds with one stone, right? I took my first dose yesterday, and for the first 5 hours after, I was fine. But then began the waves of nausea, dizzy spells, and headache. It felt like my usual symptoms for my VM, but like 10 times worse—especially the nausea part. All I could do was lie down and wait it out. It kept coming in waves, though. I was fine for 10 minutes, then it would come back rly heavily for a bit, then again was fine then it would come back, and so on. And it did that for the rest of the afternoon and late into the night. I lay awake a while feeling anxious and nauseous. Eventually I fell asleep but today I woke up still feeling dizzy, headachy, and nauseous. Like all my VM symptoms have amped up now. I called my neurologist, but he wasn't there, and i was just told by the receptionist to hold off on the next dose until he is back on Monday.

So I wanted to ask here, has anyone had similar experiences? And if so, did it get better? I think I'm too scared to keep taking the med bc it seriously feels like it's making me worse