r/Dizziness

Hi everyone,

I have long-standing Ankylosing Spondylitis with significant spinal fusion and very limited spinal mobility.

A few days ago, I developed a cold/cough and took Cefuroxime 500 mg, which I had used previously. A few hours later, I suddenly developed the worst dizziness/vertigo of my life. The room felt like it was spinning and I vomited. The severe dizziness improved after vomiting.

The next day I took Cefuroxime again, and around 2 hours later the dizziness returned. Because of this timing, I suspect Cefuroxime may have triggered the initial episode, although I know I can't confirm that.

Since then, the vertigo has continued. It is much better when I sit still and look straight, but movement, getting up, walking or turning brings the spinning sensation back. I also have a strange sensation around my left ear, although my hearing is completely normal.

I saw an ENT who suspects a positional/vestibular cause, possibly BPPV. However, the usual Dix-Hallpike/positional testing couldn't be properly done because of my spinal fusion and limited mobility.

I've also been prescribed Vertin (betahistine), which has given me some improvement, but the movement-triggered dizziness is still there.

The biggest problem is that I cannot lie flat or move my spine normally, so I can't simply do the usual Epley maneuver. I tried a positional exercise once and it actually made me vomit.

Has anyone with AS/spinal fusion experienced BPPV or similar vertigo?

If yes:

- Were you able to get diagnosed without the standard positional tests?

- Did you use a modified maneuver because of spinal limitations?

- What treatment/exercise worked for you?

I'm mainly looking for experiences from people with AS and significant spinal mobility restrictions.

Thanks!

Has anyone completely cured their chronic dizziness that got triggered after first panic attack and remained there for months?
If yes then how, what was you routine, what exactly you did,

The people who recover from this weird illness leave these forums/subs. We never really read about recoveries and it feels like it's a never ending story. So here's my recovery story: I hope it will make you feel better.

Last March, I had a horrible headache that lasted for two days. I got dizzy instantly and couldn't even go to work. I felt like I was on a never ending cruise but the symptoms completely disappeared when I was riding my bike or in a car. I saw several doctors who had no idea what was wrong with me. I heard about vestibular migraine, pppd... I'm not gonna lie, I had dark thoughts. Really dark. I cried everyday thinking this would be my life now.

My shrink prescribed me 250mg of Lamotrigine - a medecine that's usually for bipolar disorders. It was supposed to help me cope with stress. A few weeks later I saw a doctor who diagnosed me with mal du débarquement... and that's when my recovery started (yes, Mdds can be spontaneous...).

I think putting a name on my illness helped me a lot.

I started to feel better after ~ 3 months into this illness. I was even able to go on a 21km hike! I don't know if the Lamotrigine I'm taking is the reason why I'm feeling better, I don't think so because it's not an antidepressants... But today, I'm 95% back to normal. And it's getting better everyday. Sometimes I feel a bit off but it only lasts a few minutes.

This journey has been horribly stressful and made me realize I was dealing with too much shit in my life. I put my body under so much stress, it basically told me to f*** off and went on strike. I still see a vestibular phisio, I still do VR to help me get back to normal but it's ending soon. MdDs usually disappears in 6 months, and my doctor was very clear about this: YOU RECOVER FROM MDDS. IT'S NOT FOREVER, IT EVENTUALLY GOES Away. I'm into 5 months of this.

Sending you all lots of love 🩷

I have been having vague sensations of dizziness and floating for about two months now. It is usually when I am walking or moving, just a general sense of not being grounded to my surroundings. It is also accompanied by some sensations of tingling in the scalp and sometimes in both arms. All of It has been causing me a lot of anxiety and worry.

I have had actual BPPV before with vertigo where the world would spin when I would roll over in bed, etc...... this is very different then that felt. Laying in bed causes me no problems.

I have had a rough 12 months of pretty severe anxiety and stress (my wife passed away last year, and I have been working and trying to raise four kids by myself) Share this as background that might be helpful. In April I had some health scares that eventually resolved. In the first week of June I was diagnosed with a Hiatal hernia and GERD, which had caused a chronic cough. the first episode of dizziness was shortly after.

I had been on wellbutrin for a few years but for some unknown reason decided to stop taking it in April right before all these health problems surfaced. I have just recently in the past week started back up on the medication.

With all that background info I fully understand that it all point to anxiety driven. But of course having anxiety causes me to continue to worry that something else is wrong with me. So I guess I am just here to see what others may have to say about it.

Feeling of being on a boat.

I have this ongoing feeling of being on a boat/disequilibrium that completely goes away when I use oxymetazoline and when I swim in super cold water.

This would suggest that vasoconstriction resolves the situation so I doubt it’s a structural issue. The problem is these options remedy it for just a short time. Sadly I can’t use oxymetazoline regularly and cold water swims aren’t something I can always do.

I also have fullness in my right ear only. It only resolves when I use oxymetazoline and do the cold water swims as well.

I don’t get dizzy, nauseous, nor do I experience spinning.

This has been going on for four years - nearly 5 actually.

Today I saw about the 15th doctor for this and finding the bubble was new. She didn’t know what it was, but she doesn’t think there’s fluid behind it.

The bubble looks just like my eardrum almost like I have two eardrums. It’s white and pearly.

I thought finally I would have an answer now that this bubble is there, but she has no clue.

So she sent me to the neurologist who said that this is something that is probably related to my sinus and that whole area, but the otolaryngologist I saw sent me to her because she has no clue, and the otolaryngologist said that surgery would cause me pain.

I can handle some pain, what I cannot handle is not being able to walk independent of using a walker for the rest of my life. 😞

Please someone tell me you know what this is. I’m desperate.

Started when I tilted my head back and turn to the side quickly. However, I only did sleep for 4 hours, plus I drank an energy drink to keep me up for work.

I don’t feel tired though.

If I had to describe, it would be my vision going back and forth, straight then goes to the right quickly, back to straight then right. Quickly.

I couldn’t even stand without feeling like I’m falling. I feel nauseous like wanting to throw up.

The only time I can stop is when I put my fingers in my ears and plug it, it suddenly stops.

I’m resting in my bed now while typing this, maybe a good sleep would help…

44/f, otherwise healthy (lost 60 lbs this past year, work out regularly). About 3 weeks ago I started having daily dizziness - sometimes described best as "swimmy,". Along with it: fatigue, brain fog, shortness of breath, sometimes blurred vision.

Quick background: my resting heart rate has been in the mid-40s for months with zero symptoms, so when this started it seemed unrelated at first. Then I had an ER visit because it felt like I was about to pass out. EKG showed a heart rate of 46, and I was diagnosed with "symptomatic bradycardia." But an electrophysiologist I saw afterward wasn't convinced the heart rate is actually low enough to explain what I'm feeling.

Since then I've been trying to figure out what else it could be. A few things:

• It's daily, not random - happens whether I'm resting or up and about
• No fainting (other than the one ER episode), no chest pain otherwise, no palpitations
• All tests, imaging, and bloodwork I've done have come back clear
• Severity seems to come and go

Not looking for a diagnosis, just want to hear if this pattern is familiar to anyone, and what eventually helped or explained it for you.

Hello, I am 20 female, 138lb, 5,5”. I have a routinely low blood pressure reading that every doctor/hospital notes but never freaks out about. I have very severe dizziness (not vertigo dizziness, it’s moreso things like stretch, standing, walking etc make me feel like I’m “lagging”, like my eyes are seeing it a second later than I am. Maybe this is unrelated but I have also developed a persistent twitch in my eyes that will not go away after months and I’m worried I have something brain-related going on.

My doctor suggested it’s an “orthostatic” issue but did not really attempt any diagnosis or further investigations. But I have persistent brain fog as well.

I used to take Zoloft + amitryptyline. I’m currently off medications but it’s almost as though my symptoms are worse. I have been extremely depressed and these symptoms are preventing me from getting out of bed and doing absolutely anything to help. Today it is so bad I have not been able to get out of bed since I’ve woken up. My heart rate was measured from laying to standing up and not anything too abnormal but a slight increase. I have also had an ekg so my heart is ok. Doctor just recommended salt and nothing else. It feels impossible to live my life without this dizziness. Please let me know if anyone has any idea what could be causing this or if it really is just all low blood pressure- salt doesn’t always help.

Hi, not looking for diagnosis just looking for an explanation or any possible related information.
Everytime I go out in the sun (strong sunlight, heat, etc) I immediately start to get dizzy, shortness of breath, tight chest, feel like I might faint, I get extremely lightheaded and get the jitters and shakes, and panic attacks. I also have to cover my eyes when in cars during daylight. This has turned me into a shut in and going to school/work or anything is difficult during daylight and summer.
I have scoliosis and a deviated septum which gives me vertigo-like symptoms and difficulty breathing in general.
I also have had iron deficiency anemia for years and thought these symptoms were related but I have taken iron IV/blood transfusion a few months ago and the symptoms are still present.
Everytime I tell the doctors this they dismiss it because my vitals are fine (oxygen and blood pressure)
Does anyone know what this might be related to?
Edited grammar mistakes

Follow up on this Post about my symptoms.

Update: I saw an audiologist after my ENT, so the progression has basically been:
2 ER visits → PCP → neurologist → ENT → audiologist

The audiologist after conducting several tests on me, explained that my brain may be constantly scanning for danger, so my nervous system is basically stuck in a heightened state. Honestly, it makes a lot of sense when I look at the last few years.

I moved to a new country, went through school, was unemployed for two years, lost my dad, and now work in a highly stressful, customer-facing role at a startup. It’s been a lot of major life changes and stress without much of a break.

She said the ENT will let me know the next steps, and she also recommended that I watch The Steady Coach on YouTube in the meantime.

For now, the main thing is to take it as easy as possible and give my nervous system some time to settle down. So that’s where I am with everything right now. Hopefully this is finally a step in the right direction. ❤️

Hi!
About 2.5 weeks ago I rescued my Lexapro dosage from 10mg to 5mg bc I felt very foggy and fatigued a lot. However, through a combo of VRT and the 10mg I managed to feel about 80% less dizzy, and could go day to day with barely thinking about my symptoms. Unfortunately, dropping my dosage did give me some pretty nasty withdrawal symptoms that lasted for about a week and a half and ended in some pretty nasty fatigue. Since Friday I have been a lot dizzier and unstable, which I have not had this bad in a few months. Even though I think it was the right call to lower my dosage because it was hard to function, I am worried that I messed my progress up. I am starting grad school soon, and am also very anxious which may have contributed to this flare. Any advice or encouragement would be greatly appreciated. Thank you!

Hi everyone, I’m looking for some advice/reassurance from anyone who has experienced something similar.
I’ve been having ongoing swaying/rocking dizziness and balance-type symptoms for a while. It feels like I’m swaying or moving even when I’m standing still, and it can be worse when walking, standing, looking up/down or moving my head.
My recent blood results showed:
Ferritin: 8 µg/L — very low
Vitamin D: 17 nmol/L — very low
Vitamin B12: 337 ng/L — normal
Folate: 12 µg/L — normal
TSH: 1.66 mU/L — normal
My GP said I have significant iron deficiency and vitamin D deficiency. I’ve started taking ferrous sulfate 200 mg and I’ve also had a vitamin D injection.
I was originally taking my dizziness medication 3 times a day, but I’ve now reduced it to 2 times a day. I’m still experiencing the swaying sensation, though.
Has anyone else had very low ferritin and vitamin D and experienced this kind of swaying/rocking dizziness or imbalance? If so, how long did it take before your symptoms started improving after treating the deficiencies?
I’d really appreciate hearing from anyone who has gone through something similar, especially if the swaying continued for a while even after starting treatment.

Woke up at 4am spinning in my
Head…barely could walk..hosp immeadiately in case it was stroke. Had mri and ct both fine…. Still
Dizzy
And off balance next day. What to do??? Possible causes or anything work?

Hello,

I used to be an extremely active person. I ran, did strength training, swim team, water sports, roller coasters, travel, etc.

In the last five years I've suffered with chronic dizziness episodes - dozens of trips to a vestibular therapist. I've probably done the Epley like 100+ times. Some have definitely been BPPV and confirmed with PT/nystagmus. I suspect a lot of PPPD is thrown in there and potentially VM issues - although I have not been formally diagnosed with these last two things.

Please share success stories with me. I have returned to strength training, although not as intense as previously. But I am anxious about traveling (planes/boats). I avoid roller coasters and theme parks now. And most importantly, being in water frightens me. And I'm such a fish. I'd love to be scuba certified. To surf again. To wakeboard again. To do flip turns in a swimming pool. I used to be very adventurous and down for anything and now I struggle physically and mentally with being more sedentary.

If you've experienced chronic BPPV or chronic dizziness from VM or something else, can you confirm that you've returned to a normal active lifestyle? And also any tips if you have them?

Thanks so much.

Hi everyone, I am a 23M writing about my experience and current symptoms. I wanted to make a post because I am desperate for help, as I feel like my life has been taken away from me.

On June 15, I suddenly experienced severe spinning vertigo. It started while I was in bed and lasted roughly 20–60 minutes. I vomited three times and went to the hospital that night. Blood tests were normal. I went to sleep about three hours after the episode, but when I woke up the next day, I didn’t feel normal.

The actual spinning never happened again.

For the first couple of weeks, I was very unsteady and felt like I was physically leaning to one side when walking. I lost my appetite and some weight, had an eye twitch for about a week, and occasionally experienced tingling/pins and needles in my hands and feet. I also became extremely anxious about what was happening.

One strange thing (that might not be related, but started at the same time) was pain on the upper left side of my nose and sometimes an upper toothache, especially when biting down.

Over the following weeks, some things objectively improved. My appetite returned, the eye twitch disappeared, and, most importantly, the physical leaning gradually improved. However, the strange visual/internal sensation has basically remained.

I had a non-contrast CT of my head, which showed a normal brain but some sinus mucosal thickening involving the maxillary/ethmoid/sphenoid sinuses.

After a few weeks, I scheduled an appointment to have all my vestibular systems checked.

They tested:

• VNG/Oculomotor function
• Smooth pursuit/tracking
• Saccades
• Optokinetic nystagmus
• Positional testing
• Calorics
• vHIT
• cVEMP/oVEMP
• Computerised dynamic posturography
• Functional gait

My peripheral vestibular function was normal. There was no evidence of BPPV. Calorics were symmetrical, VOR gains were normal in every semicircular canal, VEMPs were normal, and there were no significant catch-up saccades.

Importantly, my smooth pursuit/tracking was objectively normal, as were my saccades and other oculomotor tests.

My posturography was also extremely good, and my Functional Gait Assessment was also good.

Despite all of that being normal, my biggest remaining problem feels like it's in my eyes/visual processing.

If a car drives past horizontally and I follow it with my eyes, tracking it feels extremely strange/off. The same thing happens watching people walk past me. The world itself does NOT move, bounce or spin. My eyes appear to follow the object correctly. It's the sensation while following it that feels wrong.

As soon as I stop tracking the object, that particular sensation disappears.

I can also sometimes feel internally wobbly/floaty/spacey, even though the environment is completely stationary. Face-to-face conversations can sometimes feel visually strange. Reading sometimes feels more effortful than it used to.

Busy environments can make me feel worse. For example, I recently went to a theatre, and the foyer/hall was packed with people moving around, which made me feel terrible. However, I can also sometimes feel bad walking somewhere with few people, so it isn't exclusively about crowds.

At other times, I can walk around my house relatively normally. Driving is manageable. Showering is fine. I can go into grocery stores without getting dizzy. Scrolling on my phone doesn't really bother me.

I also had an eye exam with an optometrist shortly after the original event and was told everything looked normal.

I've been given vestibular rehabilitation exercises involving walking while moving my head and VOR-cancellation exercises. Interestingly, these exercises don't reproduce my main tracking symptom. Watching an actual car/person move horizontally is much more likely to produce it.

At this point, I'm considering seeing a neurologist and potentially having a brain MRI because I want to rule out a central/neurological explanation. I am also considering a chiropractor assessment to rule out any neck-related issues. I am an anxious person, but the symptoms don't really feel like anxiety.

Has anyone experienced something similar?

So I am a 38 year old male. 5’8, 170lbs. For the last couple of years I’ve had this spectrum of symptoms that waxes and wanes throughout the day. A wobblyness lightheaded feeling in my head. No loss of consciousness or anything like that. Sometimes especially in the morning I’ll feel like I’m being “sped up” in the head conjunction with those. I know this sounds weird but the only thing I can compare that to is that blissful rush you feel when you just start to get a buzz from drinking. I really feel just shitty in general on the bad days. I feel weak, I feel exhausted, sleepy, plus the other things I listed above .It’s truly hard to put it all into words. Originally this started out with just the dizzy symptoms, but over the last three years of dealing with it I have began to get less dizzy symptoms, but more of the other stuff.

Now I’ve done more bloodwork than most humans do in a lifetime. I did many months of vestibular therapy. I’ve done a brain MRI. I even got desperate enough to try a supplement only “doctor” (yes it was a waste). Every doctor just tells me I am healthy as can be from what they see. I sure as hell don’t feel that way. Now don’t get me wrong, not every day is horrible. I would say that I have more good days than bad days but it’s still affects me 365 days a year to some degree. Like I said above that degree as a spectrum from slight annoyance for 10 minutes during the day, all the way up to the entire day is shot and all I’m gonna do is lay on the couch underneath the blanket in silence.

I think it’s important to add that over these years. I did receive two diagnosis along the way. The first was hypothyroidism, which is now super well managed with levothyroxine. The second is low testosterone, which is currently normal thanks to enclomaphine. So I can’t help but to wonder if it’s something hormonal. Other than that, I take no medication’s, no recreational drugs, and I don’t even drink anymore because if I drink just 3-4 beers , I’ll spend the next couple of days wanting to die, with symptoms ultra severe to the point that I question my sanity.

Does anyone have any great ideas? I am sick of living my life on a roller coaster. I can eat well, exercise, and sleep eight hours and then wake up tomorrow and have a horrible day where I can’t even make it to the office. Just like I can eat like shit, sleep five hours, and feel totally fine tomorrow. There’s just no rhyme or reason to it.

Hey! I struggle alot with getting dizzy and sometimes passing out when I'm overwhelmed. This can be from either sensory overstimulation, or emotional ie having a panic attack. I have recently started to notice that it happens when I'm thinking too hard or focusing my brain while digging really deep into a subject. When I did my diagnosis tests the psychiatrist thought it could be that my brain can't take anymore and therefore shuts down and that I have a sensitive nervous system. But I do also have problems with blood pressure and pulse in general which makes me prone to getting dizzy (Ortostatic hypotension).

Not really seeking advice but mostly looking to see if someone else is/has experienced this! Haven't found anyone who relates to it IRL and would be nice to talk with someone in the comments :)

I am 72 yr old women . Have tried everything. ENT, physio,drugs,tests . it’s been 10 yrs and getting worse. Lots if emergency visits , gravel shot n sent home . I am tired . No appetite. No energy. I feel like when the episodes come on I lose it. Trembling, clamminess, buzzing ears,finger tips,toes. My feet turn purple . I can’t hold my head up . Wobbly. pain my neck,shoulders. But, my heart n pulse are fine 🤪. Just getting worse . I am very tired and ready to give up . You name I hve tried, gravol, ginger, betahistamine for yrs now . changed my diet , no coffee, no pop. trying to eat better . Drinking more water, electrolytes drinks . I am tired . Got anything else? To do when they come in ???? 😵‍💫🤪🥲