How Many Of You Get Migraines And Headaches? How Often? What Are Your Trigggers? Anyone Get What’s Called Migraine Auras? | myMPNteam

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How Many Of You Get Migraines And Headaches? How Often? What Are Your Trigggers? Anyone Get What’s Called Migraine Auras?
A myMPNteam Member asked a question 💭

The auras mess up your vision up to usually 30- 45 mins.
It’s like looking past hot bbq grill, and squiggly lines.

posted February 3
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A myMPNteam Member

Yes I occasionally get the weird sensation of squiggly lines at the edge of my eyesight. Was freaked out originally - first got them about 15 yrs ago but once I started mentioning them to others, many people seemed to have them as well so I learned to manage them by just closing my eyes for 15 mins until they pass. Once I was diagnosed with PV 3 yrs ago I began to wonder if that is what causes it. Asked my hematologist but she seemed to dismiss it as being related to my MPN. Not sure what to think now???

posted February 3
A myMPNteam Member

I started getting Acephalgic Visual Migraines after a brain surgery. What I experience is unrelated to the MPN.. This form of migraine responds very well to a PRN CGRP inhibitor (Ubrelvy). When they occur, I experience scintillation, scotoma, diplopia, and palinopsia. There were a few occasions where I experienced a more severe hallucinatory palinopsia along with the other symptoms being more severe. Thankfully, i no longer experience the more severe manifestations.

It is important to distinguish Visual Migraines, which are brain based, from Ocular Migraines, which are retina based. While both can be MPN microvascular symptoms, they migraine is based in different areas of the body. Typically, a Visual Migraine is experienced in both eyes while an Ocular Migraine is experienced in one eye.

While headaches/migraines are a common MPN symptom, they can occur for reasons not related to the MPN. It is important to consult with a MPN Specialist regarding this symptom. It may also be necessary to consult with a neurologist and/or a neuro-ophthalmologist. Proper treatment for a Visual Migraine requires a proper assessment of the cause.

Wishing you success in managing this issue.

posted February 3
A myMPNteam Member

I had visual auras maybe once a month or so, years before I was diagnosed with PV. Since I started taking baby aspirin, I haven't noticed any.

posted February 6
A myMPNteam Member

I do, big time
My seizure neuro referred me to a headache neuro
Gone are the days of one stop shop
It’s all good
I want to live

posted February 4
A myMPNteam Member

Hi- I have experienced auras around my field of vision sometimes but have no idea if that is connected to having an mpn. Resting for a few minutes helps. The eye doctor didn't know what it could be.

posted February 3 (edited)

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