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My Story

Hi folks, I’m new here and thought I would post my story to see if anyone has something similar or can advise on things to try.

I am now 31 y ears old, from the age of 26 I started to get vertigo (typical it had to occur on my wedding day!), for about 1 day each time, fairly mild rotational vertigo with no vomiting. It would resolve itself within about 3 -7 days.

This occurred maybe once or twice a year each year. I thought nothing of it and just thought it was something that I got now and then and was a bit of a minor inconvenience. No pain at any of the instances of vertigo and no aura or anything like that.

In September 2013 I had sudden onset vertigo, intense feeling of tumbling, and more or less instant tingling in my face. Intense vomiting followed about 5 minutes later and lasted for about 3 hours. I managed to sleep for a couple of hours and woke up tired but the vertigo had gone. A visting dr gave me an injection of Prochlorperazine and just told me to get some rest. For the next 4 days I continued to have intense vertigo, Prochlorperazine in tablet form did nothing apart from stop me from vomiting.

After this vertigo subsided I was left with an intense feeling of confusion/mindfog and an aversion to bright light and sound, as well as vibrant scenes and motion. This remained in it’s acute form for about 4 months, and ever since I have been recovering very very slowly up until present day. My vision was also affected and I couldn’t focus on anything more than 2 meters away. This cleared up after about 1.5 weeks. However I am still not feeling well, I constantly feel dizzy and “not right”.

I have never had any aura and only very mild pain similar to a weak “ice cream” head ache.
I can still get on with life, but my confidence has been lost, I find it hard to get out and do things with the constant reminder I am dizzy and not feeling right. Also the constant threat of vertigo coming on when I am “out of my safe zone” is not pleasant... ie if I’m in the swimming pool with my 1 year old daughter the thought of having vertigo then scares me as I cannot remain standing let alone swimming when an attack occurs.

Both times when I have had bad vertigo I had a bad cold if that makes any difference.
After a few months of suffering I was able to see a consultant ENT doctor who diagnosed migraines as the cause. I was a bit sceptical but went with the diagnoses. I was put on Pizoifen 3mg, one tablet per night for 6 months, and also Sumatriptan for the bad attacks. As far as I can tell these pills have not helped.

My normal doctor now wants me to go on beta blockers to see if that helps. He seems confused as to what is happening with me and I feel reluctant to go on beta blockers due to the long term nature of being on them plus side effects.

I feel if it was migraines I would have days when I would have extreme symptoms like the vertigo and mind fog, even the vision issues, but then I feel these issues should completely normalise after the migraine has subsided, but I suffer continuously. After the big attack in September last year I have felt it was an extremely slow healing process noticing small improvements every 2 weeks. Is it possible to have a migraine for 8 months even with masses of paracetamol, ibuprofen, asprin, pizotifen, and sumatriptan?

I am 6ft 2 inches, not over weight but I do have high blood pressure and a sedentary life style. I'm trying to get more active but it's difficult when I feel so dizzy all of the time.

I have another meeting with the ENT consultant next month and hope to get a referral to a neurologist.

If anyone has any ideas what could be wrong with me or suffers from a similar issue please get in touch!

  1. Hi ColourJam,

    I'm sorry you've had such a horrible time with this, no one should have to suffer like this for so long. A few thoughts come to mind, let me share them with you.

    First, I'm happy to hear you've been to the doctor - that's a great start. However, there are a number of us who are a bit too complicated for our family doctors and/or general neurologist. As much as these doctors want us to feel better, our 'cases' may be out of their league.

    When we've become a 'complicated case', it may be time to see an expert in migraine and headache medicine. This doctor is called a migraine/headache specialist and are specifically board certified in headache medicine. They treat one condition - migraine and headache disorders.
    Neurologists may be fine doctors, but have a difficult time being experts in one area because they treat so many different disorders such as multiple sclerosis, stroke, epilepsy, Parkinson's and others. An important note is that not neurologists are migraine/headache disorder specialists (even though they may claim to be) and all migraine/headache disorder specialists are not neurologists. Here is information I hope you find helpful; and Instead of a referral to a neurologist, you may want to get one for a migraine/headache specialist.

    This link describes when it's time for a new doctor;

    Has anyone brought up Meniere's disease? Meniere's is a inner ear condition when we feel dizzy, nausea, ringing in the ears and even hearing loss. And Meniere's can be comorbid with migraine which means they can occur at the same time but are not caused by one another. You may want to discuss this with your doctor. This would be a good conversation for you and the ENT.

    Vestibular Migraine has been added to the International Headache Society's International Classification of Headache Disorders -III, beta or ICHD-III beta which is the gold standard for diagnosing migraine and headache disorders. We have information on this type of migraine in this link you may find very interesting;

    I hope this is helpful, please keep us posted on how you are doing.


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