Chronic “vertigo” symptoms preventing daily function, lack of diagnosis after 1.5 years

New here, let me introduce myself 🤝
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Hello,

I’m here mostly to vent, but hopefully to finally find people who might understand what I’m going through.

I’m 22. A senior in college. Very outgoing, ambitious and extroverted. Highly involved in my community as much as I can these days.

I am possibly facing a Migraine associated Vertigo diagnosis — at least, I hope so at this point. I’ve always had chronic migraines from the time I was little (about 7 or 8, I got it from my mom).

I’ve been to dozens of Doctor’s appointments in the last year and a half. I’ve had an MRI, Thyroid scan, most recently, a CT scan, various medicines, and been to many different types of medical professionals. Practically every darn test, examination, and checkup has led to nothing. Nothing at all. Not even leads to go on.

I’m currently on Beta Blockers, dealing with balance therapy, and soon to be on nasal meds to try and stop this bout of vertigo from happening.

Basically, I cannot drive. I have been functionally unable to go anywhere on my own for the past 5 months. It was starting to get bad back in early 2020. Then COVID hit, and it honestly may have been the best break to happen to me in college.

I was struggling to attend classes due to burnout and vertigo episodes when driving. I could not drive in the rain, the windshield wipers would absolutely kill me. Generally speaking, I was fine so long as I wasn’t in the rain.

Then things went from mild to severe. I went from being able to drive for the most part, to be functionally disabled on the side of the road.

I couldn’t figure out what was causing it, nor could I determine why it would simply come and go. I often describe it as that sensation one gets on a roller coaster. Disorientation and increasingly blurry vision. This happens to me every time I drive, and even now when I simply am a passenger.

I’m at a loss. I never thought my migraines could be related, but now, I’m hoping for it. At least it would explain a lot of things about my daily experience! I’m not optimistic that MAV is the answer, but since every other test has come back with no result, I have to believe this could be it.

I’ve always been so independent. It is deeply depressing to lose that independence in a such a way that I cannot physically go to school, work, or travel on my own if I intend to drive or even bike. I’m terrified to deal with the ADA at my school. I’ve been off for a semester again, and I’m terrified I’ll have to put my education back another year and possibly give up my hopes of getting a master’s because it just isn’t worth the cost to not be able to get much out of the program if I can’t get myself there to really do it (I am majoring in filmmaking, and they simply do not offer online classes under normal conditions. Understandable, as it is the nature of the subject to work in physical group settings).

I’m simply frazzled and exhausted. I really hope I get a diagnosis soon so I can start actually understanding how to solve this issue, or at least live with it.

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Ohh what a rough ride, especially at such a young age. You sound like you’re getting vertigo a lot, is it spinning? How awful that you had it driving!!

Have you got an appointment with someone that is willing to diagnose vestibular migraine. Like a neurotologist?

It’s def time to get on the bandwagon and eliminate foods/ alter lifestyle, and get on some effective meds!!

Good luck keep in touch

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Welcome!

Hmmm, I’m not sure I’d wish this on anyone tbh!

However, looks like you are already going down the right path for treatment.

All I would say is, watch your stress and depression levels, if those things are not under control (and fair enough, as @Belindy says, “rough ride”) you definitely need to look at how you can deal with those through any kind of non-pharma psychotherapy or at a push discuss medication as I believe those things can be contributory to exacerbating and extending your predicament. As ever, discuss that with a professional.

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Welcome KaylaLynn (but sorry you have had to find your way here)

It sounds like you are doing a lot of things already to help yourself. Have the betablockers helped you at all? Are you seeing a neuorolgist or neurotologist? Most doctors I’ve talked to say that MAV is a “waste basket diagnosis” basically given after ruling out other more definitive things - it’s a name to use to describe a whole collection of symptoms.

It sounds like you have had migraine headaches previously? I’ve found my symptoms have morphed from classic migraine headche to MAV (and back). It’s totally understandable how you have got into the cycle of the symptoms causing you to be wary of travelling alone and then the worry about travelling alone exacerbating symptoms. I’m a great avoider but you really do need to speak to your school - could you email the ADA about your struggles in the first instance so that you can control the narrative rather than having to go knock on a door? Would it really be so bad to take some time out? Do you think the nature of filming and editing exacerbates your symptoms at present (scrolling, flickering, screens etc)?

If you read more on this site you will see that we all invariably improve after bad bouts back to a “baseline.” There are also many success stories (in Success Stories category).

Whilst you are waiting for your diagnosis have you made other lifestyle changes that might make a difference e.g. following a migraine diet - at least seeing if cutting out caffeine, alcohol and MSG helps, sleep “hygiene”, not skipping meals and taking magnesium and riboflavin supplements.Limiting screen time, especially gaming or fast moving screens,try to get out walking or at least outside with some longer horizons.

I really hope things start to improve for you.

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Hello, @sputnik2 and @turnitaround , Belindy!

It was a neurologist that spoke of MAV, but he hasn’t seen any evidence of it being resolved after medication so far. My ENT said the same thing. I’ve had migraines since I was 7 or 8 years old. The vertigo doesn’t seem to involve spinning, but I will get near tunnel vision if it happens long enough. It occurs every instance I’m in a moving vehicle, especially while in a car.

The beta blockers didn’t work (my GP said I’d know in about 3 weeks whether it’s effective). I’m now on a antihistamine-steroid to clear out my previous ear infection from over a month ago (the antibiotics didn’t clear it out completely). I’m hoping this will help with the vertigo, but it doesn’t appear to be helping so far with that as it did in my last ear infection. It does seem to be clearing the infection though, something that seemed to be coming back as of this week, so that’s good news.

My next step is balance therapy. I can’t seem to do the exercises well. Maybe that’s a sign of something vestibular. They could not replicate the vertigo in a lab as of yet. We’ll see!

I’ve cut out milk so far from most of my diet, though for an unrelated reason (unfortunately gained a sudden allergy to milk in the last year as well).

Medication has always been a last resort for me and my family. My mom hates drugs that are high in side effects and dangerous. I reacted to birth control very poorly a year ago (suicidal thoughts and sudden depression and low mood within a month), so everything we’ve been trying avoids serious side effects like depression just in case. The stress of this is bad enough to feel a little down, so I definitely don’t want more of it.

Caffeine avoidance is something I want to try, but I love sodas and black tea, and other than some juices and water, it’s basically the only other thing I drink at this point. (I’m allergic to some fruits, but I don’t appear to have too much of an issue with juices for now.)

I don’t drink alcohol hardly at all. Haven’t been able to with the beta blockers, so it’s basically a non-issue.

I haven’t thought about MSG so I’ll have to look into that.

I’m on computers a lot whether for school, pleasure, or work (I edit videos from home in the interim just to have something to do. If I can’t go anywhere, I’ll probably just stick to editing full-time from home. I like it. I just wish I had another option right now). I take computer breaks because I know I need a healthy balance and force myself to walk away from screens — after working, for example. But if I’m being honest, I practically grew up in front of a computer. I try to ride a bike but that’s difficult for me with the vertigo too. I could probably get used to walking a little more. I’d walk or bike everywhere in town if I lived close enough to not need a car.

I did contact the Student Accessibility people. They basically said fill out the form and hope for the best. I don’t have a diagnosis and documentation for a disability, and they wanted me to try and get one because it’s required for a justification if I need a class to be accessible online. Basically, I’m screwed for now a whole year of school because of the vertigo. It’s not that I mind taking the break, I’ve done lots of productive things in the meantime. It’s the fact that I dropped out of high school my junior year due to mental reasons, and now this just feels like a helpless repeat cycle again — barring me from actually completing school after 5 years of trying to get my life back together in college and with a GED. It really feels like a slap in the face to all the progress I’ve made. I’m so close to graduating for the first time in my life, and it just feels like it’s slipping away.

I don’t see any symptoms related to work that I know of. I mainly produce, so I’m often behind the scenes doing paperwork and coordinating people and equipment. I don’t really sit in front of a camera or screen (except for computer screens) unless I want to. I get a choice by being a producer. It’s just impossible to do everything a producer does if I can’t physically be on a set. I can only do so much from home or an office space, and granted, it is a lot to do remotely. Maybe I’ll luck out and have the money to be an executive producer, then I don’t have to go anywhere except on special occasion. Lol

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You don’t really need to @ mention everyone, just use their username without an @. The Topic will be highlighted for all participants when someone replies in any case. But it’s not a huge problem either. :slight_smile:

You can also edit your reply with the pencil icon if you need to add someone’s name. This will eventually time out though. I’ve added Belindy as you intended.

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Hi

I am forced to take issue with your GP’s comment with no wish to offend but just thinking of future newcomers who tend to latch on to a similar story to their own experience and could end up suffering as a result. Betablockers often work extremely quickly to Knock out regular classic migraine and can be 100% effective at doing so. They tend to take far longer to help with VM. I speak both as a person who takes Propranolol and from others I’ve both met on here and actually know personally. I would not suggest anybody dropped them after three weeks unless they had bad side effect issues. Propranolol took 8 months to even begin to control my constant vertigo. All written up in my PD. The deciding factor in IMO is hitting the effective dose for the individual in question. I was not on the right dose to achieve much

To be sure of receiving the correct treatment you really do need a proper diagnosis.

Please check out VRT references on here using the Search facility. It can make many MAVers worse. Another reason for chasing that proper diagnosis.

It may not be for ever in your case but quitting caffeine is worth a go.
Decaf drinks maybe?

For ‘cause’ try seeing it all from the Stress angle. It’s often the main trigger.

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Hi there!

I just wanted to say, I feel you. I’m 24 and (supposedly) about to finish my masters degree in textile history and conservation- but the onset of symptoms has made it impossible for me getting to class. I am terrified to drive. It happened once while I was driving and ever since Ive just been a ball of anxiety when I get in my car- which obviously makes vertigo more likely. Quite the sh*t show.

I’m just so sorry- I keep having doctors tell me “but you’re so young!” like I’m not already mourning the fact that the rest of my life is going to be so different from before the onset of symptoms.

I don’t have answers- I too am just starting treatment. But I feel your pain.

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Hi,
your symptoms sound very similar to mine. Did you try the take the neurological BVD test? Or does it help when you close one of your eyes?