My Daily Dizzy Brain

I first developed symptoms when I was 23. It began with ear fullness, dizziness described as being on a boat, head pressure and squeezing, nausea, vomiting in severe cases, tiredness, anxiety, depressive moods. My GP diagnosed Eustachian Tube Dysfunction and gave me a nasal spray which actually made me worse. I was ill for about six months as symptoms gradually eased. Six months later, symptoms were back again.

Over the course of six years I was repeatedly diagnosed with ETD and that it would go away on its own even though it could take months. Every year I would spend at least four months laid on the sofa feeling absolutely terrible. Eventually I decided I’d had enough, especially when my anxiety became really high, and I saw a different GP who suspected the diagnosis was wrong. I was sent to an audiologist, who ran some tests and told me it wasn’t ETD and that she didn’t think an ear problem was causing my symptoms. I began searching the internet and was informed in a facebook group that it could be vestibular migraine. After a discussion with my GP I was referred to a neurologist, and after a brain mri which declared everything normal I was diagnosed with migraine but it was left up to my GP to treat.


In the 9 months since my diagnosis I have tried 4 preventative medications but all of them only increased the severity of my symptoms, some for three whole months before I couldn’t stand it any longer. My gp has now referred me back to the neurologist. I have been with constant symptoms for 20 months now, despite trying lifestyle changes, an elimination diet and vitamins, none of which helped at all. I have been bedbound most days by the dizziness, it’s so hard to eat, to move, to exist. I have no idea what my triggers are or why I am in constant symptoms all day, every day. I cling to the hope that i will find some kind of treatment that works for me because i do not want to live like this. I have no control over my symptoms and don’t know where to turn next, I guess botox is an option since i seem to have a problem tolerating medication. But I hope that this will reach someone out there who may have a similar experience and perhaps has no correct diagnosis. GPs know so little about migraine that so many people must be misdiagnosed like myself. Don’t let yourself be fobbed off my medical professionals, keep nagging them for answers because we all deserve better.

I don’t know what the future holds for me, but I hope it will be better than this – I am 30 and still live with my parents, who look after me, and I haven’t been able to work a single day in my life due to what I now know is migraine. It’s awful how debilitating this condition really is.

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Comments

View Comments (12)
  • Lynn072013
    8 months ago

    Your symptoms sound very similar to mine. I have experienced constant rocking/dizziness for the past 5 years. My story is too long to go into, but I want to share with you my diagnosis. I applied to be seen at the Mayo Clinic in Minnesota. After a 6 month wait I was accepted and was put on a waiting list for an ENT appointment. After a one year wait I was finally seen. All patients that experience dizziness start in their ENT department, but I was very quickly sent to Neurology. Diagnosis of Vestibular Migraine and a secondary condition called Persistent postural-perceptual dizziness (PPPD). I would suggest you google these and see if it applies to you. Then look for a neurologist who specializes in headaches. I am five years in with no improvement yet, but the correct diagnosis is key to getting treatment. I have other health issues that complicate my condition. You are much younger than I and may respond better and faster to treatment! I hope this information is helpful to you!

  • Kayeff author
    8 months ago

    Thank you for your comment, I’m sorry you are also struggling with these symptoms. Noone deserves it. I have already been diagnosed with vestibular migraines and am 100% confident in the diagnosis. I have researched pppd but don’t think it fits with my symptoms.

  • Nancy Harris Bonk moderator
    8 months ago

    Hi Kayeff,

    I’ll keep my fingers crossed you get in to see a good doctor.

    Will you keep us posted on how you are doing?
    Nancy

  • Always the optimist
    8 months ago

    I cannot believe its been nearly three years since I was diagnosed by my doctor migraine
    things are up and down and I do get comfort from reading some stories on here
    its been pretty constant aura in different degrees you really don’t know what you are waking up too
    it does get me down but to know I am not on my own is very comforting

  • jane151952
    8 months ago

    Hi Kayeff, so sorry to hear what you have been going through, I have exactly the same thing and after trawling through Migraine websites this is the first one I will have found with someone having dizzy migraines.

    Mine started years ago and I have only just been diagnosed with vestibular migraine which as you know is usually without headache, I still have to explain every time to my Doctor what it means as they give me medication for headaches and not dizziness, so frustrating! I also have tried numerous medications but none of them work and when I tell them it makes symptoms worse they say well it shouldn’t!

    After several trips to neurology they decided maybe I need some physio to help with balance so I had the Epley manoeuvre done which tries to reposition the crystals in the inner ear, I have to say for the first week I felt worse which they said I would but after that it eased off but not clear completely, I now have another bad attack so having the manoeuvre done again, I am 56 and housebound most of the time, I too cant work, its so debilitating and you are so young to have it, don’t give up hope, ask or research BPPV which is Benign Paroxysmal vertigo, that’s when the crystals need to be realigned.

    I really wish you well and keep strong and positive if you can,

  • Kayeff author
    8 months ago

    Thank you for the support! I know i don’t have an issue with the ear crystals because i had had balance tests and bern assessed by an audiologist, so the eply manouvre and similar therapy won’t benefit migraine. Hope you are feeling better soon.

  • ChronicallyEverything
    8 months ago

    It sounds like you have the same thing my mother in law has. It’s called Meniere’s disease. It took her forever to get diagnosed. She was diagnosed with several conditions before getting her true diagnosis including having had several mini strokes, but eventually she had a scan done of her brain, and in sorry but I can’t recall if it was an MRI or CAT scan, but they found little spots on her brain that are a basic symptom of that condition. It’s not that common and her GP had never had a patient with it. I’m the one that found it by looking up her symptoms online. It was the dizziness that really stuck out. It didn’t really fit any of the other diagnoses. It was an outlier on its own, ever present even when her headaches went away. If possible try and bring this up with your doctor. I hope this is helpful. It’s an oddball disease that doctors don’t look for usually. They look for horses and this is a zebra. Best of luck to you. I hope you find relief.

  • Kayeff author
    8 months ago

    Thanks for the input but i know it’s definitely not meniere’s, i have had my ears tested. For a meniere’s diagnosis you need episodes of vertigo, not constant dizziness like i have, as well as hearing loss, which i don’t have. If your mother doesn’t have those aspects, then i’d question the meniere’s diagnosis even though it seems to have taken you so long to get it. I have been diagnosed by a neurologist and am 100% confident in that diagnosis because it fits accurately where nothing else does.

  • RRMother
    8 months ago

    I also have vestibular migraine and spend about 80% of my life in bed because of it. I am on about day 10 of using the N-1 Headache app, which aims to help you map out your triggers and protectors over the course of 90 days. I know I’m affected by weather and barometric pressure changes, but that’s it. My neurologist just added a second preventative to my meds, so I’m hoping that helps too. I hope you get answers soon!

  • Nancy Harris Bonk moderator
    9 months ago

    Hi Kayeff,

    Thank you for sharing your journey with us. I am sorry to hear you are having a difficult time, that must be extremely frustrating.

    You’re right – there may be millions of people who are incorrectly, or not actually diagnosed with migraine disease. Any many of us wait over five years before we are accurately diagnosed.

    I’m not sure where you live, but I wonder if its time to see a true migraine/headache disorder expert? These expert doctors (who may not even be neurologists) are different from neurologists in that they are board certified in neurology, which is different than being certified in neurology. Let me share this information on how these doctors are different and how to find one; http://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/really-find-headache-specialist/.

    Hopefully others will be along shortly to share their experiences with you as well.

    Nancy

  • Kayeff author
    9 months ago

    Thank you Nancy. I live in the UK and have been referred to a neurologist, I am waiting for them to assess my referral and contact me with their suggested course of action, which, i have been informed, could either be an appointment with a neurologist or with someone at the migraine and headache clinic in my area. So all i can do is wait at the moment. Accessing particular specialist care works differently on the NHS than American healthcare, and I can’t afford to pay privately to see someone of my choice. I am just hoping I will get to see the right person, and get treatment that works so i am not stuck like this.

  • Nancy Harris Bonk moderator
    8 months ago

    Hi Kayeff,

    I’ll keep my fingers crossed you get in to see a good doctor.

    Will you keep us posted on how you are doing?
    Nancy

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