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

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.

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

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.

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.