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New here and looking for answers

Hi everyone, I’m new to this forum. I’m 18 years old and have been dealing with persistent dizziness for awhile. I am unsure if I have VM and would appreciate any insight. Here’s my symptom history:

November 2017 - Had my first bout of dizziness on vacation with my family. Felt like I was on a boat/rocking and the ground was moving up and down. Also had sensation of fluid in my right ear. Symptoms disappeared within a week.

March 2018 - The dizziness and ear fullness returned during a hectic period of my life. Went to a clinic and the doctor told me it was probably allergies. Flonase and Sudafed did not help me. Happily, symptoms disappeared again after 2-3 weeks.

I had no vertigo for the next 2 1/2 years. I graduated high school in 2020 and was preparing to start my first year at my dream college (albeit online) when everything came back again 10 times worse :frowning:

August 2020 - During freshman orientation, the vertigo (walking on a trampoline feeling) returned out of the blue. I wasn’t particularly anxious at the time–just slightly stressed about starting a new chapter of my life. I again had a sensation of fluid in my right ear and crackling tinnitus, so I went to an ENT. He couldn’t find anything wrong (hearing was perfect, no evidence of infection, not BPPV, etc).

The next day, the vertigo escalated significantly. I also developed intense pressure in my head and weird spasms/pulsating sensations on the right side. This sent me into a bit of a panic spiral and I ended up at the ER. Blood tests and an MRI came back normal, which relieved a lot of my fears, but I still felt awful and had no answers. I made the heartbreaking decision to take a year off from college because I could not complete any schoolwork or attend Zoom lectures in my condition.

The dizziness reduced in intensity after my trip to the hospital, but it ended up lasting for 3 months before it disappeared completely in mid-November. I had 3 full months of feeling totally normal and started to wonder if it was all just anxiety (definitely not).

February 2021 - The vertigo returned again and I started to feel really depressed because I thought I had recovered. The first week was hell–lots of head pressure and spasms (mostly on the right side again), eye strain, severe fatigue, tinnitus. When I walked it felt like the ground wasn’t solid. My symptoms were especially bad in supermarkets and the shower. Caffeine (which I have since cut out) and sugar were also big triggers.

Fast forward to today and I am still dizzy. I can mostly function in my daily life, but even simple tasks are exhausting. I still have head pressure that comes and goes, so I am thinking I could have vestibular migraines. I doubt this could just be PPPD, as I have mostly gotten my anxiety under control and I don’t believe that condition is episodic. I am seeing a neurotologist in April, but would love to hear from anyone who has experienced similar symptoms.

Hi. No chance of a diagnosis here as we are a support group not doctors. However you are most welcome here whatever the cause of your dizziness. We can speculate and I must admit it sounds pretty typical of VM/MAV to me as a fellow sufferer. I assume you have some history, self or family, of migraine but even that isn’t strictly essential. Migraines sometimes come later, or not at all.

VM can be either episodic or chronic. PPPD necessitates constant 24/7 dizziness, that is not ‘vertigo’, over a full three months to ‘qualify’. More likely you have VM plus a certain amount of anxiety. The two go hand in hand. Do check out the site’s Wikis and use the search for keywords you need answers to. Please check out ‘vertigo’. Not sure how you define it. It’s an illusion of movement which I personally wouldn’t associate with ‘walking on a trampoline’. That however is another typical VM symptom of its own. Just check out each/any of your key words through Search and you will find many references of others who are undergoing or have previously shared your current typical symptoms.

Any unanswered questions please post. Unless they are unique it’s usual to add to an existing thread. Keeps the site tidy for the future reference of others. Do please let us know how you progress with your specialist in April. We will be interested to know. Helen

Hi there, yes you do sound similar to a lot of people on here. It’s good though that you have managed to go symptom free in between attacks… even though the attacks are long.

To me, it does sound like VM. I wonder if you could pin point triggers? Foods, stress, hormone fluctuations?

I was initially triggered by a BPPV episode, and now, although the dizziness has never really left me, get worse at the start of the cycle. So hormones for me.

Some people can improve greatly just by avoiding certain foods (caffeine, red wine - or cut out alcohol all together, chocolate, cheese, msg). Others find de-stressing a good option.

Many however go down the road of preventative migraine medication and hopefully if your doctor thinks the same, you could be prescribed something.

This will begin another long journey of finding a med that suits you, but they do help.

Hopefully you can get your college course back on track soon.

Bel

Hi Dizzyqueen!

I am sorry to read of your suffering, you will find lots of useful info and emotional support a plenty on this site. It’s truly a god send! :pray:t3:

The bad news is until you see the specialist you won’t know for sure what’s causing your problems, the good news is it sounds pretty much how I would write my own opening introduction. So you’re around people who know exactly what you’re going through.
I have had and still do get every symptom you’ve listed and then some even now when medicated usually to a much lesser degree. Although currently having a relapse.

The thing is control, I am sure you’re desperate to find out what can be done to try and help your symptoms. Have you tried the 6 c’s diet? I know you mentioned sugar was a trigger and caffeine but it might be useful to try and follow the plan and see if it makes any difference to you in the interim?
Also rest up a lot and keep well hydrated. There are lots of posts on here about supplements also. All these little steps might help you in the meantime before you seen your specialist.

Feel free to PM me if there is anything you think I might be able to answer for you. I’m happy to help in any way I can.

Stay safe lovely :slightly_smiling_face:

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Please see a doctor for diagnosis. But, we are here to support you all the way through.

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Thanks for the lovely replies everyone. Happily, my head pressure pretty much disappeared about a week ago, and most of my dizziness along with it. I feel quite close to ‘normal’ again. The only symptom that remains is a bit of imbalance. Does anyone else notice that their equilibrium takes a bit of time to recover after a bad attack? My neurologist appointment is coming up soon. Fingers crossed that this doctor actually takes me seriously. Being a young woman, docs tend to dismiss everything as just anxiety. Sometimes I’ll even start questioning my own sanity because of it. I guess it’s hard when you’re dealing with such an invisible condition…

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Absolutely … it can make your imbalance worse for a couple of weeks or so. Hang in there!

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Yes. Like six years and counting …

Please make sure the specialist takes you seriously. What you must try to avoid is chronicity. If indeed there is such a word. I had self contained episodic vestibular attacked for over ten years. They lasted 60 hours every time and would then stop as if they had never existed leaving me totally symptom free until the next time. No imbalance. Nothing. Then in 2014 it turned chronic and despite improvements I’ve had disequilibrium in some form ever since apart from the very occasional day clear. I figure as long as the vestibular system can still reset itself it will. Once it becomes chronic it’s an entirely new ballgame.

Update: The neurologist I saw told me I most likely have vestibular migraine, but he would prefer I get some more vestibular testing done to make sure it’s not an inner ear issue. Has anyone had these tests done? I’m wondering if it’s worth the trouble as I’d have to wait 6 weeks for an appointment. But at least then I could know for sure what my diagnosis is. He also said I could skip the testing if I wish and try some meds to see if they help. Or I could go the all-natural route and just try the migraine diet + some supplements with the hope that my symptoms would disappear again. I don’t know what I should do next…

Hey @dizzyqueen i am in a very similar situation I have been too 3 ENTS end all of my tests have been negative. I’m not sure where you are located but we have a lot of ents here I got in within the day one time which was very helpful. They’ll run the ENG/VNG for Meiners and BPPV mainly but I wouldn’t delay migraine for a potential 8ish weeks if that’s how long the ents will take also. Go on the dizzy cook websites and start the diet, B2, and magnesium. That’s what my neuro did FIRST which is all very light stuff and takes a while if you didn’t want to start meds yet.

There are ways to avoid vestibular migraine like determining and avoiding what triggers it. Not getting enough sleep, being stressed and eating unhealthy foods are most of the factors that contributes to it. You can also take supplements like magnesium. Hope this helps!

I’m a few days into the migraine diet and I honestly feel a lot worse than I did before I started. I suppose it could be hormones/menstruation and stress triggering me, but the pressure in my head is super debilitating again. It’s so bad right now that I can’t even move my forehead muscles. My neck and upper back are also killing me. Last night I also had intense brain fog and could barely string a sentence together. I’ve decided to go ahead and get some vestibular tests even though I’m pretty convinced this is VM. Still not sure what is causing the fluid sensation in my right ear though…

That sounds just like my migraine headaches to me. I could easily have written that description myself. Very much doubt there’s any connection to starting the diet though. Unless you are allowing implementation of it to be very stressful in which case you could well be causing more problems than you are curing. One of the other suggestions, particularly menses much more likely.

A ‘fluid sensation’ is certainly not one of my symptoms. That sounds much more up @turnitaround’s street than mine. Could well be the cause of your imbalance in the first place or maybe just another symptom. Use Search on here. You will find plenty of others referring to same.

Does it feel like something is trickling in your ear at all?

Yes, particularly when I lie down on my right side. It feels like water is trying to drain out of my ear, but it’s trapped behind my eardrum. It makes a loud crackling sound. My ENT said my tests were all normal though.

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I get the same when I have ear pressure. Feels like something is trickling inside my ear and tickles like crazy! I don’t get the noise however but you’re right, feels exactly like water is trying to get out. No idea what causes it!

I suspect I have some degree of Eustachian tube dysfunction, which I think migraine can worsen. But I’ve tried decongestants and nasal steroid sprays with no relief.

Yeah I had fluid in my ear for a long long time. It eventually cleared up after a couple of years or so. Exactly as you describe. Feels like it’s in the middle ear. It seemed to collect at night in one ear and then would drain away when I got up. It would also make me biased as to which side to sleep on.

Tellingly, months in I used to get a complimentary periodic sensation of it having dried up in my Eustachian tube as the tube cracked free as if it dried and as if it became a kind of mild glue. I could free it further by moving my jaw: it would crack free some more. Then I would get a squishy sound.

However, it’s worth noting that it first appeared alongside with my initial acute symptoms from which I apparently recovered after 5 weeks (except for this fluid sensation which stuck around). 5 months later though and the full MAV experience hit me out of nowhere. So I can relate to the initial stop-start of your experience.

Only one consultant put forward an explanation. One simply called it an ‘aberration’ which isn’t exactly very useful!

Out of interest did you have any kind of discomfort in your ear whilst landing in a plane just before your holiday?

Any other possible source of trauma to your fluid ear? Use of q-tips too deep can be a source of injury. In my case I foolishly pointed a shower into my ear!!

Unfortunately it seems injury to and experience of symptoms where vestibular system is concerned can be separated by significant time which makes identifying the cause quite tricky.

Have you been checked for nystagmus on that side?

Make sure you see an oto-neurologist, not an ordinary neurologist, because you seem to have something afoot with your right ear and it would be best if that was taken account of.

Finally I will just tell you that nearly all of my symptoms (and to all intents and purposes all of my vestibular and neurological) symptoms have subsided spontaneously save for tinnitus and a feeling that my bad ear is under some kind of very mild pressure or very mild ‘fullness’ as I can increase the tinnitus by clenching my jaw or chewing hard. Much of my recovery occurred even without medication as soon as I could cope without it.

So do not lose hope of your body finding it’s own way out.

I did not require any procedures.

I don’t recall having ear trouble on the plane ride before my symptoms began, but on several past flights I had ETD that would last days before my ears ‘popped.’ With that I had temporary hearing impairment and pressure, but no fluid feeling.

As far as ear trauma goes, there’s nothing that comes to mind. I did used to spend hours diving to the bottom of pools and doing backflips in the water when I was a kid, which caused me some ear pain at times.

I don’t have nystagmus as far as I know, but I’m getting more vestibular tests in a couple of weeks. Luckily, my doctor is both an ENT and a neurologist who specializes in balance disorders. He’s done a lot of research on VM.

When I had a total break from symptoms, I noticed that all my ear trouble pretty much disappeared. So it does seem somehow connected. The vestibular system certainly is complex!

I’m glad to hear you’ve mostly recovered. I have faith my body will get there someday.

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You may probably never know. My original symptoms started about 20 mins after pointing a slightly warm low pressure shower into my ear so I always thought it was connected. There was no pain at the time of the incident.

Your flight experience sounds like the most likely culprit, but who knows?!

The most important thing is to believe you will get better and to get yourself as comfortable as possible in the meantime.