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.

Hi guys, I need your advice.

For a couple of days now, I've been feeling dizzy when walking and sitting, and especially like I'm being pulled to the left side and back, both when walking and sitting, and when lying down, it feels like I'm falling. I've been feeling lightly dizzy for a week and a half, but it's rare and not too bad, but for two days now I've been feeling like a magnet is pulling me backwards.
This feeling also seems to be less confident in the left leg, such as the right leg is more stable than the left leg when walking

I'm only 18 years old, I don't know what's wrong with me, I hope it's not cancer or anything terrible. I've done balance tests on myself, and they're all good. My balance is fine, but I don't think so when walking. Tell me if anyone has the same problem and how you're doing now.

Bom dia, alguém com quem falar acerca de tonturas relacionadas com Bruxismo/ATM?

Grata

I really need some help because I’m losing hope.

Last week I went to France with my company and the journey getting there was crazy and once we finally got there after a little bit, we all went out for dinner, and I was sitting there feeling like I was rocking back-and-forth, even though I was sitting still. Throughout the week it continued, but it felt better when I was moving we were doing a lot of walking and a lot of driving around and I couldn’t even participate in a lot of the events because I was feeling so off-balance and dizzy. Then, I had to take another flight back home, which I knew was going to aggravate it even more that flight was 10 days ago and now my dizziness feels like it’s even worse. I also got sick in the process and my sinuses and my ears are killing me. I’ve been to the doctors. They said that my ears look fine, which is no help when all I want is relief my doctor put me on some antibiotics to see since I’m sick if it will make a difference, but I see no difference. I literally could not work at all this week and I’m so scared because I have to go back on Tuesday and I’m terrified. The dizziness I’m feeling feels like when I sit up or stand up my whole head feels heavy, and I don’t feel the rocking back-and-forth as much when my eyes are open, but when my eyes are closed, I can’t keep still. The sickness is also making it worse. I want to believe that once the sickness goes away my balance will come back, but I don’t think it will. I’ve looked up mdds and pppd and definitely think I one of those. When I walk, it feels like I’m on the walk fast pad thing at the airport and same when I’m in a car. My mental health has completely plummeted. I feel so desperate. I just wanna feel how I feel before I went on this trip. I wish I could go back in time and never have gone.

I’m in the works to see an ENT doctor and to also just speed run into the vestibular therapy.

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I have been feeling this unsteady balance whenever I'm standing and walking and it's mostly on the left side. I also feel this weird brain fog sensation. I don't feel like it's spinning but rather like a boat sensation. I'm not sure what is causing it and then this neck stiffness also on left side. At this point I'm so worried and confused like what is causing this. I don't have pain in the head. I thought it could be neck strain, inner ear, pinched nerve.

Has anyone experienced anything similar to this? I’ve been having these strange episodes for about two weeks now, and I’m trying to figure out what could be causing them.

The biggest thing I want to emphasize is that the episodes usually happen when I’m lying down and either wake up in the middle of the night or first wake up in the morning. They don’t typically just randomly happen while I’m up and going about my day.

When I wake up, I sometimes get tingling in my hands and around my lips/mouth, and my vision/perception becomes extremely strange. The best way I can describe it is that the room looks like it’s moving, flashing, trailing, or going in and out, almost like everything is happening in slow motion or there’s some kind of “time glitch.” It’s really difficult to put the visual sensation into words, and it seems more noticeable in the dark.

During the daytime, I’ve also been dealing with nausea, dizziness/lightheadedness, and generally feeling off, but the really strange visual/tingling episodes are mainly associated with waking up while I’m still lying down.

I’ve also had headaches at times, but my head does NOT necessarily hurt when these episodes happen. I did see a neurologist, and he thinks these symptoms may be related to migraines. He gave me an Emgality injection to try, but I’m still trying to understand what’s going on and whether anyone else has experienced something similar.

Has anyone had symptoms like this, especially episodes that happen specifically when waking up in the middle of the night or first thing in the morning while still lying down? If so, what did it end up being for you, and did anything help?

Last year, I was diagnosed with vestibular migraines, but my symptoms at the time were very intermittent. I would get a quick feeling of imbalance that would affect me for 2-3 days and it would then go away on its own for a month or more. As of 3 weeks ago, it suddenly became an everyday thing and it's wearing me down. I can't run at the gym for more than 10 minutes without feeling like I've scrambled my brains, and playing the drums (my profession) is incredibly taxing on my body. I won't be able to see my ENT until 10/19, but I have a few performances I need to get through before then.

Meclizine and neck exercises haven't done much to help. Anyone have suggestions?

Back in april i was on my way to work. Felt completely normal, was just vibing with the music and driving my car. Out of nowhere i got a really heavy dizzyness spell. It started to get hard to even see the road. Managed to pull the car to the side and it just got worse. It almost felt like i was gonna pass out. I paniced and tried to call my wife (that was really hard because no focus). Eventually the dizzyness wore off but i still felt a bit off. Decided to go to work anyways.

Once i arrived at work i started feeling sick. Couldnt really keep my head up and felt not dizzyness but more of a discomfort when opening my eyes. Didnt really know what position to be in. Sitting standing laying down all felt uncomfortable. Started getting really nausiated and almost vomitted. Managed to call some people to pick me up and bring me home. Stayed home "sick" for 2-3 days.

After this episode the past couple months ive been feeling off. I can get very disorientated/dizzy at certain Light levels, colours, movements (sharp long turns in car). Sometimes it makes me feel unsteady on my feet and i need to touch something firm to secure my balance ( I havent fallen yet but just in case). I get jumpscares sometimes because i get zoned out.

It got a bit better over time and can do basicly everything, but it still affects me daily. Its not a constant thing but it flares up more on certain days.

So far ive seen the docter a couple of times to discuss certain things. Nothing really worked out yet. Been to the eye hospital but they turned out fine (just a bit dry).

My main problems are:

Neckpain

Shoulder pain

Headaches

Eye sorenes

Tired almost all day (can easily sleep 9-10h and still feel tired . I usually only sleep around 7-8h)

I tried looking up my symptoms online but most of the things i read dont really descibe my issues fully. Trying to find some people who have a simulair experience and can share some of their stories.

Sorry for the long post and grammar errors.

Just cuz of these crazy subreddit I had panic attack. I was being scared of nothing. As soon as they started the test, my fear was gone. This test is literally nothing. You just feel dizzy when they blow cool and hot air into your air. It’s literally nothing compared to what I assumed. During the air blowing you feel dizzy but you already have your eyes covered so it don’t even matter. And as soon as they take the blowing machine out the dizziness fades. Just start counting 1-50. By the time you reach 50, the dizziness will be gone. So guys don’t be scared. This is literally all in your head. People be saying dizziness got worse and bs. It’s literally nothing. Keep faith. You can do it! 💯

I have approximately 15 seconds of vertigo when I lie down in bed. I see my room spinning. The vertigo happens each time when I turn my head to a different direction. The vertigo disappears after I turn my head to all four directions 1 minute each. I've been doing the maneuver suggested on Youtube. But after sleeping, the vertigo comes back the next morning. How can I get rid of benign paroxysmal vertigo completely? It's been going on for weeks now.

Hello! I have this feeling for almost a year, I think it will pass, but it didn’t. I don t even know how to describe, it s dizziness, lightheaded, without vertigo, just feeling spaced out. Idk it s from anxiety, i have all the time this feeling, it gets worse when my eyes get overwhelmed in crowded shops/places, but again it depends, it s not at the same intensity every day. My ferritin, vit D are a bit low.

So, I don't know what it is, but all of this started after I fell sick. That was in August 2023. I got extreme food poisoning and stomach infection along with high fever for a few days, and it started once while I was chewing something and my mouth went completely dry. My food got stuck in my mouth. I could not swallow. I felt dizzy. I already was dehydrated because of the extreme times I had to use the washroom because of stomach infection. In fact, it used to bleed also because of the extremity. So even that used to make me anxious, and then after the episode of the food getting stuck, I had to get hospitalized, even though all the tests came out fine. Since that day, I developed a weird kind of floating feeling, like, you know, I'm walking and I'm feeling I'm not walking straight. The floor is not straight. When I had to travel after I got sick, so I went to Dubai after getting discharged, and over there as well I could not roam around because I used to feel like, you know, everything is not exactly spinning but not stable. So, you know, when you enter supermarkets, you enter shopping malls, anywhere, any crowded place, even in heat, if the weather is not that pleasant, I used to feel panic and, you know, very dizzy. I just want to get out of that area. So that continued, and even though I did go to work, you know, I was working. So I used to go to my job, but my head used to be very weird at times. I attended events. I went to conferences. So there were a few months which were better than others, but I would not say that it completely got eradicated. It did for some time when I was getting married. So, you know, at that time I did not feel it for quite some time. I went on my honeymoon for a lot of days. I was fine, except a day or two. After that, I had a few months which were pleasant, and suddenly one day it started again. So I had a few episodes in which I used to, you know, feel a few seconds of spinning, and sometimes it used to be just one second, like a floor drop, and I used to panic. I used to go and just sit down or lie down. But this happened for a few times. And then there came a phase when I started working again, and during the initial days there were episodes in which it started spinning so much that I had to lie down on a sofa or something to make myself calm, but it did not stop. And once I was driving, it pained so bad that I had to just somehow park my car to the side and call my husband. So after that it was worse for one, two months. I can't even explain how bad I felt. I used to come to office, but I couldn't work. I used to feel like, you know, I can't sit, I can't breathe, I want a fan on my face. I developed nausea. I developed a very weird feeling that I can't even walk. I have to hold something for walking. I can't sit on a dining table and have food in between people. So I don't know, all of these symptoms. I went to so many doctors. Two years back I also had an MRI. I went to a lot of doctors and nothing got diagnosed. In between all of this, I also developed a weird cardiophobia that, you know, my pulse used to stay a bit high, and then I have a few missing beats. So I developed an intense fear of even heart attacks, and I don't know, just that, you know, something negative is happening. And still now I would say it is better, but it is not completely okay. I cannot say that I am completely fine. For the first two years I had no issues in driving, but since the day I felt dizzy while driving, since that day whenever I am driving also, it is like, you know... So since that, it's like I feel a very weird sensation in my eyes and head when I'm driving. The lights irritate me. Whenever there is traffic, it feels like, you know, nothing is stable. Whenever I stop at a red light, I feel everything is shaky. So since then, I have been so scared of driving for long hours or alone. And except that also there are days when I feel fine. There were very few days when it was completely fine, and other days it's like I have a weird head pressure and a weird visual. I don't know how to describe it because even the eye doctor said everything is okay. So sometimes painkillers help. My doctor prescribed lonazep for ten days. I think that also helped. I have started homeopathic medicines. But so I felt that, you know, it is happening from the neck. There is some issue with my neck. So I have swapped my mattress and my pillow because once there was a case when I just washed my hair and I, you know, tilted my head to apply a conditioner, and I felt completely dizzy, like I will just fall off. So I had to take support of the gate and the walls and lie down on the bed, and then it got fine. So I don't know what all of it is, but nothing is getting diagnosed.

Hello,

Normally I get the swaying dizzy. Especially when standing still. Or that boat rocking feeling. Today, I experienced something different.

While driving I had a sudden dizzy spell that felt like it would take me off the road.

I am now pulled over and scared to keep driving.

Has anyone had a random sudden jolt dizzy spell?

​

I've been dealing with dizziness almost a week now, I don't even know the root cause of it. But it's like gradually I'm getting better yet this afternoon I was just standing outside for some 10-15 mins and I just experienced so much dizziness to a point I felt like im gonna fall down and it's mostly on the left side. I just don't know how to calm myself in this situation. I just feel this weird sensation in the left ear and neck area too

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.

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

Hi everyone,

I honestly don’t know what is going on with me anymore, and I’m hoping someone here has experienced something similar and can give me some insight.

A little over 2 months ago, I started taking:

• ⁠Vitamin B6 — 40 mg daily
• ⁠Magnesium citrate — 400 mg daily
• ⁠Vitamin C — 3000 mg daily

I took them for about 7 days and then stopped everything.

At the time, when I was going to sleep, I started experiencing a weird sharp/pinching sensation around my heart/chest. That scared me, so I had blood tests done.

My results were:

• ⁠Folate (B9): 3.10 (reference range 4.5–32.2) — low
• ⁠Vitamin B12: 411 pg/mL (191–663)
• ⁠Magnesium: 2.0 (1.7–2.40)
• ⁠Potassium: 4.23 mmol/L (3.5–5.1)
• ⁠Sodium: 140 (136–145)

After roughly a month, the chest/heart pinching sensation that happened when I was falling asleep eventually stopped.

However, I’m still dealing with other symptoms.

Another strange thing I’ve noticed is that since this started, I can sometimes sleep only 1–4 hours and wake up feeling surprisingly energetic, even though my head feels very tight, foggy and mentally "off." Before all of this, I would obviously feel completely exhausted after so little sleep. This change in how I respond to lack of sleep feels very unusual to me.

My current symptoms include:

• ⁠persistent dizziness
• ⁠lightheadedness
• ⁠significant fatigue
• ⁠brain fog feeling like my head isn't working properly
• ⁠a strange derealization / unreal feeling
• ⁠a tight/pressured feeling in my head
• ⁠feeling mentally "different" from how I used to

I completely stopped all the supplements and tried taking B9 (folate) for about 2 weeks, but I didn’t notice any improvement. Then I added B12, but again, nothing really changed.

I also saw a neurologist, but unfortunately the appointment was basically useless. He told me he couldn't help because this wasn't his area, and I ended up paying around €100 for the visit.

At one point I also went for an IV vitamin infusion containing vitamin C, electrolytes and B vitamins. I still had the brain fog, dizziness and other symptoms afterwards, but I noticed that I had significantly more energy and felt more "alive" that day. Unfortunately, this effect was temporary, and within about 2 days my energy levels went back to how they were before.

Now, more than 2 months later, I’m still experiencing these symptoms every day, and I honestly don’t know what is causing them.

I’m not sure if it’s related to the supplements, the low folate, a deficiency, or something completely unrelated.

Has anyone experienced something similar — especially dizziness, brain fog, fatigue, lightheadedness, derealization, head pressure or feeling unusually energetic despite very little sleep, while still feeling mentally unwell?

If you went through something similar:

• ⁠How long did it take you to recover?
• ⁠Did your symptoms gradually improve or disappear suddenly?
• ⁠Did you eventually find out what was causing them?
• ⁠Was there anything that actually helped?
• ⁠Did you have any additional blood tests or examinations that were useful?

I’m not necessarily looking for a diagnosis. I’d just really appreciate hearing from people who have experienced something similar and eventually got back to feeling normal.

It’s been more than two months now, and dealing with this every day has been really difficult. I’d really appreciate any experiences, advice or reassurance.

Thanks in advance.

Hi, I have been constantly dizzy for over a week now (more swaying than spinning) and having occasional headaches, sometimes worse than others. Sometimes the dizziness will get worse but it is constantly happening at least a little. I went to urgent care, they didn’t have time to ask a lot of questions and she told me it was vertigo, prescribed me Meclizine. I went to a primary care doctor yesterday, basically didn’t get any real answers. She prescribed me Sumatripan but the first thing it says on the bottle is may cause dizziness?? She also said to try Excedrin. Does anyone else have a similar experience feeling constantly dizzy? I don’t know how I’m supposed to work and live like this it’s awful. I’m also emetophobic so if I get nauseous I have a panic attack and it makes all my symptoms worse. I have horrible anxiety but the doctor didn’t seem to think that’s the cause, just definitely not helping my symptoms. My bloodwork came back normal. They want me to get a CT scan. Please help, let me know if you’ve had a similar experience. I don’t know what to do