Evolution of constant migraines

I’ve always had a constant mild headache and tinnitus, to the point I thought it was sort of normal. It generally feels as though there is a tight elastic band, or swimming hat on my head all the time. Anything can make it worse; ice cream, barometric changes, weather changes, perfumes, lights, sounds. When they do I get sharp, cold headaches, stronger than the constant one.

I never thought these were ‘migraines’ though, because I didn’t get nausea with it. And everywhere I researched it, nausea and sickness seemed to be a big symptom.
It was only when I started getting eye pain and saw my Optician that things got a bit clearer.

He found that my eye sight was generally pretty good, but my glasses were far too strong.
I explained I had eye pain but he found nothing structurally wrong and asked me to explain the visual disturbances; those being, seeing stars, or it looking like it’s snowing, seeing white-ish blobs or clouds over my vision, double vision at times and wavey or tilting vision the most.  He told me I didn’t have a sight problem, I had Migraine Auras.

I went back to my GP and told my ENT this. At the same time as this I’d been experiencing increasing episodes of vertigo and we’d been discussing the possibility of Meniere’s Disease. My balance and ability to comfortably look left and right were increasingly deteriorating to the point I was often bed bound, or more accurately, floor bound.
We’d been trying me on an anti-vertigo medication and added an anti-migraine to little avail.

My Dr decided the likely explanation for the vertigo was an over sensitive balance organ, which would be life long, due to its nature, and only some medication could help it’s symptoms, not cure it. A test on my hearing showed that I had Hyperacusis; ‘super acute hearing’ with it slightly less acute in low frequencies, which could be concluded that there has been some hearing loss, in association with the long term tinnitus. This suggests more that it’s of vestibular nature.

After a few months the vertigo attacks increased in severity and the eye pain continued to come and go. We tried added more medication. This time an anti-sickness to the mix.
I continued to get worse.

My ENT at this point was reaching the same conclusion I was, that the vertigo and migraine were in fact one and the same. Dubbing it vertiginous migraine, the treatment remained generally the same but it felt as though we were understanding things a little bit more, perhaps.

As I was reaching crisis with the severity of the attacks now, I was put on a low dose of an anti-psychotic and anti-depressant to treat the vertigo and pain.
These helped to a degree.

After around a month the vertigo attacks have significantly decreased and I’m now enjoying the feel of the ground on my feet and not my face. However the eye pain has increased to the point its radiating pain on the one side of my head. Another evolution of the migraine.

I’m now on another medication which is often used off-label for migraine, and I’m hoping this may work, an help reduce my number of medications I take daily eventually.

It’s been a long confusing journey so far. And I still have no answers.

I’m hoping to see a specialist to look into the possibility that it isn’t actually POTS, as I have recently been diagnosed with EDS and these are commonly co-morbid conditions which could explain these symptoms. And perhaps be a gateway to balance retraining therapy.

It’s been really hard getting people to understand how painful this condition is, and that communicating while it’s active is difficult. I have daily flare ups, and an absolutely non-stop headache at the least. I find it strange some people say ‘constant’ when they mean ‘regular’. Sometimes you just want to curl into a ball and cry from this, but that just gives you an extra headache on top… As I’m sure we’ve all learnt the hard way.

*hugs from a fellow sufferer*

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