Not a typical migraine

Hi I am 38 and a mother of 4 children. I have had chronic headaches for years and suffered migraines occasionally. The beginning of this year I started having balance and dizzy spells a lot so I went to my family doctor to get it checked out. Just by coincidence he was having testing for vertigo for any of his patients having dizziness. The test had 2 parts to it which would confirm a diagnosis. The technician who did the test looked at my computer readings after the first part of the test and said he had never had a patient light up all six test points before. He told me not to bother coming in for the second part and that I would get a letter from the doctor about my diagnosis. Two days later I got the letter and it said I had vertigo.

My doctor sent me to an ear doctor after vertigo treatments were not successful and I was complaining about the vertigo being severe and constant with electric shocks , nausea, headache, confusion, and hallucinations when I tried to sleep at night. The specialist said I was actually suffering from Vestibular migraines which triggered the vertigo and other symptoms and I have an appointment in November to see a Neurologist. I hope they can find a treatment to stop them because I have had to go to the ER for help stopping them because I am unable to sleep when they hit and they last for days.

I would appreciate any else’s input about these type of migraines.

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Comments

View Comments (13)
  • nickyo1121
    2 years ago

    Oh and I forgot to say I used to have the electric shocks but no Dr or specialist knows what I am talking about so I am relieved to see someone else identifies with the feeling. I’d love to hear if the neurologist gives you any amswers regarding these. Now that I am in Sandomigran I hardly have any which is great

  • nickyo1121
    2 years ago

    I was diagnosed with vestibular migraine after an episode of sudden onset of severe vertigo a year ago. Vestibular rehabilitation helped immensely, it is little head shakes and movements whilst watching a point at a distance, or walking and looking left to right swinging focus to objects each side to train the brain not to respond so inappropriately to the vestibular stimuli and movement. When discussing my almost life long symptons with the physio in hospital, like feeling dizzy in shopping centres and light bright busy spaces, or even in swirling tree filled outdoor spaces, he said migraine associated vertigo was likely. A low salt diet has definately helped the vestibular migraines. Twice when I have had severe vertigo in the middle of the night I had eaten a very salty meal the night before. The vestibular system is very sensitive to changes in fluid levels in the ear so I was advised to keep salt and sugar levels even, ie no binges on salty chips or jelly beans!
    I have had migraine with aura for years and now I also have what they call migraine associated vertigo, constant dizzy nauseated feelings. I am on pizotifen (sandomogran) 1.5mg at night and without it I was almost dysfunctional some days. Hard with 2 young boys and working 3 days a week. Now I am always tired and also take stemetil on bad days but at least I feel half human again. I hope you find answers, it is really hard to get a definite diagnosis. I feel for you.

  • 5he0ii
    2 years ago

    I was diagnosed with Vestibular Migraines about 15 yrs ago by a neurologist. I first started seeing him because of my uncontrollable Migraines. We eventually got the Migraines some what under control, but then I started having dizziness, vertigo, problems with my balance, etc. I now get Botox injections every 3 mths in my forehead, neck, temples and the tops of my shoulders, and this helps a lot with the Migraines. But so far, nothing has helped with the vertigo. At first, the vertigo always accompanied a Migraine. Then I started having vertigo and balance problems even when I wasn’t having a Migraine. I’ve been through everything from having ice water flushed into my ears, being turned upside down on a table, being put on a spinning table, standing on a platform and having the bottom drop out from under my feet, hearing tests and other tests on just my ears, and on and on. I tried several types of rehab and therapy for the vertigo, but none of them helped. It has gotten so bad that I rarely am able to drive, and even when I do drive it’s only for very short distances. Sometimes, just being a passenger in a car will trigger a vertigo attack. Unfortunately, Kristy, I don’t have any magic answers for you and what you’re dealing with. I do hope you find some answers that will make your situation better. Please write another article and keep us posted on what the drs are able to do for your situation. All the best.

  • DonnaFA moderator
    2 years ago

    Hi 5he0ii, Thanks for being here and for sharing your experience and support. My goodness, some of those tests sound like the Spanish Inquisition! I hope you soon get some relief from vertigo. -All Best, Donna (Migraine.com team)

  • Poodiejoe
    2 years ago

    Dear Kristy,
    Your story is similar to mine. I understand how terrifying this type of migraine can be. Two years ago, my GP referred me to an ENT who referred me to a neurologist who diagnosed me with vestibular migraines.
    Through trial and error, I found relief (not a cure) through a combination of vestibular rehab, botox for migraines, Topiramate, a low-tyramine diet and addressing my mirgraine triggers. I still suffer with attacks but they are less frequent and less severe (plus I am now able to sleep during an attack).
    I hope you can find an effective course of treatment so you can regain your quality of life and confidence.

  • Ann
    2 years ago

    I call this one of the many faces of migraine. My migraines debuted when I was 12 years old and I came to find out were called hormonal migraines. After menopause the pain disappeared but the next phase was the ocular migraine. I was sent to a retina specialist and finally a neurologist who diagnosed ocular migraine. Afterwards the dizzys appeared. After balance tests, spinning table tests, brain scan tests, I was diagnosed with benign positional vertigo. It was only later that I made my own diagnosis of vestibular migraine as this phenomenon would occur about 24 hours after an ocular migraine. (I keep a log of symptoms, days, times, food etc.) I also suffer from abdominal migraines as my GYN doctor told me I was post menopausal and there was no way it was hormonally based anymore and he diagnosed abdominal migraine. Strangely, I have very little pain if any at all, but the ocular and vestibular migraines are worse than the hormonal ones I suffered with every month for 42 years. I took Anacin every month for the pain and went to work. Since menopause, the new faces of migraine have kept me from living my life as I never know when I’ll go blind in one eye, reel from the dizzys or double over from abdominal pain. A new face has cropped up: an eye twitch instead of the flashing lights. I think migraines have to be the most baffling condition as they are the only condition that changes symptoms in a wink, sneak up on you without warning no matter how diligent one is watching diet, getting sleep not getting too much sleep, staying calm, taking meds, not taking meds etc. etc. etc. Only neurologists who specialize in migraines are the migraineurs best ally plus this site has been such a help. Kudos to all of the migraine team members.

  • DonnaFA moderator
    2 years ago

    Hi Ann! Thanks for sharing your story with us, you’ve been on quite a journey! We’re so happy to hear that the site has been helpful. We’re always here to share information and support. Thanks for being part of the community! -Warmly, Donna (Migraine.com team)

  • LFN5
    2 years ago

    I am new to migraines, at least to the awareness of them in myself and I also have this wobbliness/dizziness. I had thought it was ear based but the ENT said no, that my ears are fine. I have not yet visited the neurologist but I find that I can control the wobbles a bit when I slow my breathing down and focus my energy down into the ground and then release up out of my head. I use a similar approach for those anxious moments when I feel I cannot breath–I slow it all down, take slow breaths (in for 5, hold for 6, out for 7 counts–and focus on what my yoga teacher call mountain pose. I find so many of the comment strings on this site so helpful–thanks all.

  • Joanna Bodner moderator
    2 years ago

    Hi there LFN5, Thanks for taking the time to share such informative and helpful comments on a few of our articles. I am so happy to hear that you have been finding the comments from our articles helpful. It’s amazing the wonderful support, advice and personal accounts that is given from our awesome members (like yourself)!

    I am however so sorry to hear that you experience dizziness. Since you mention you are “new to migraines”…which I am also sorry to hear, I thought I would share some information with you that may be useful on the following:

    Symptoms – https://migraine.com/migraine-symptoms/
    Preparing for your doctor visit – https://migraine.com/getting-help/prepare-docto-visit/

    Let us know how things are going if you can once you have visited with your doctor. Also to mention, if possible, it’s always a good idea to see a doctor that is board-certified headache/migraine specialist.

    If you have not done so already, feel free to visit our Facebook page where you can connect with many other members as well!

    Take care,
    Joanna (Migraine.com Team)

  • DonnaFA moderator
    2 years ago

    Hi LFN5! Welcome to the community! We’re glad you’re enjoying the site! Please know we’re always here to try to help with answers and support.

    You may also want to check out our Facebook page and join the conversation there as well. -All Best, Donna (Migraine.com team)

  • Anne
    2 years ago

    yup – I have the dizziness with migraines too – although sometimes just the dizziness. It’s actually my worst symptom because I can soldier through anything else, but I can’t drive when I’m dizzy. I haven’t found anything yet that helps it.

  • Joanna Bodner moderator
    2 years ago

    Hi there wilsonk38,
    Thank you for sharing your journey to diagnosis with vestibular migraine. I am so sorry that you experience this and that you have been through such a great deal of time and energy getting a proper diagnosis. Kudos to you for keep pushing and seeking insight from so many healthcare professionals. In case you are interested and if you haven’t already done so, feel free to visit our forums section where many other members have joined in on the very topic. Additionally, here is an overview which you may find helpful to review.

    Wishing you all the best with your upcoming appointment. Check back if you can & let us know how things are going.

    Warmly,
    Joanna (Migraine.com Team)

  • DonnaKay
    2 years ago

    Hi! I have just been diagnosed with vestibular migraines after many many many years of suffering episodic periods, some lasting months, of imbalance and vertigo. It took a really long time to get a diagnosis. I am now taking Lamotrigine which seems to be helping quite a bit. I hope that you soon find some help, Kristy.

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