Migraine Patients Discuss Their Worst Symptoms

Teri Robert | May 2nd 2016 Oct 30th 2016

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Migraine is an enigmatic genetic neurological disease with a vast array of potential symptoms. Symptoms can vary widely from one person to the next and from one migraine attack to the next. Pain isn’t necessarily the worst symptom. Here’s what some of our community members shared about their worst symptoms.

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Sudden blindness in my eyes

Three years ago, I was in the car with my five kids when out of the blue pain started and both eyes went blind. Couldn’t see a thing. I wrecked into the car in front of me and I was hit from behind. When I went to court, the judge ordered me to turn in my driver’s license until I could get my migraines "under control.” Have never been able to get them controlled since childhood. Now I have a new terrifying symptom and no driver’s license. ~ cyberschool515

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When I go completely blind

I, like so many others, have many symptoms that come with my migraines. My worst symptom is when I go completely blind, like Ray Charles kind of blind, I see nothing. It doesn’t have any rhythm or reason, could be out mere minutes, but usually it is out for hours. When this happens I walk around our place using my sense of touch to maneuver around. It definitely increases my stress levels, fearing that one day it just won’t ever come back. ~ Cruzndolphin

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Aphasia and inability to focus

The worst is aphasia and the inability to focus. Aside from the pain, nausea, fatigue, and all the other symptoms that go along with migraine disease, not being able to talk intelligently is unbelievably frustrating. Further, not being able to process simple conversations is humiliating. Migraine robs us of time with our family and friends, the ability to have a career, or even just a normal life. With aphasia, it also robs me of my dignity.  ~JulieT

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Inability to put two words together

The worst migraine symptom I had was when I lost the ability to put two words together and form a coherent thought or sentence. My husband and I thought I was having a stroke because it was so severe. I knew what I wanted to say but was not able to say it at all. Very scary! ~RJW

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Loss of cognition

My loss of cognition. I get very confused and can’t string a sentence together. I also say the wrong words (aphasia), or can’t think of the right word at all. It’s frustrating and embarrassing. ~_danabaker99 _

For me, it’s the inability to form a thought, any thought. I cannot form a response to any question, even “What’s the problem?” Don’t ask me what my symptoms are. I won’t be able to process the question, much less the response. ~ kimberly315

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Loss of thought process

The loss of any formal thought process makes me feel like I’ve reversed to a grunting cave woman. It’s my worst symptom, and the most heartbreaking. ~ heather.gottke

There is nothing worse than the inability to make sense of anything, and feeling totally confused. I think this is a symptom that is a combination of several others that come on at the same time. ~ChrisZ

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Extreme fatigue

The extreme fatigue has to be the worst migraine symptom. It’s still there, even when the head pain lessens. ~Anniewoodfin

My worst symptom is extreme fatigue. Many times, I think that I would be able to “push through” the symptoms and complete my day, but the fatigue, including after I take my migraine relief meds, is so overwhelming that I have to get to bed and “sleep off” the migraine before I can do anything else. ~ Alliums

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Fainting

Fainting. It is scary being single and doing it on my own all the time, then you go down and you don’t know how long you have been out for or if you have hit your head. ~ Deborahmmartinez

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Hallucinations

The very worst for me would be the hallucinations. I never know what degree they will be. Most the time they present themselves like the aurora borealis but during some of my most severe attacks the hallucinations are just as severe and unforgiving. The medications to prevent them are terrible but necessary. Another reminder that this disease is unforgiving no matter how hard you try. ~evamathias58

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Mind numbing head pain

The incredibly awful mind numbing, eye swelling head pain. Any movement is painful. Blinking can be painful. Brushing my teeth and hair can be prohibitively painful. Sounds, smells, lights - painful. It’s like the worst pain you can imagine, multiplied many times. Yep, it all comes back to the gosh darn pain. ~ cyndeer2

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Neck pain

The neck pain of a migraine is the worst part. Bad enough that I had tests to be sure there’s nothing wrong with my neck. Until I realized it’s part of my migraine, I took Advil it. It did nothing. Since my neck hurts before my head, it was confusing. Now, I take zolmitriptan when my neck starts hurting. ~Jennings

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Sinus pain

The worst symptom for me is the pain coming on one side or the other, around the sinus areas. Although, I have to say that light, sound, and nausea play a large part as well. After the migraine I always experience weakness as if I had been drawn through a knot hole. ~Anna

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Nausea and vomiting

The vomiting that comes with the nausea that is migraine related is a really big one; because I’ve thrown up hard enough and long enough to cause serious damage to my throat, esophagus & stomach. I’ve had multiple instances of Mallory-Weiss tears, bleeding ulcers, a severely ulcerated esophagus, grade D esophagitis and a hiatal hernia; all thanks to migraines. ~ Leeannplace

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Swollen, drooping eye

I would say my eye closing and watering on whatever side my pain is the worst. It droops and waters for a few days after. ~Kathyf

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Gastric stasis

One of my most frustrating symptoms is gastric stasis - when my stomach ‘decides’ to stop processing anything. This means any liquids, foods, or most importantly, medications I take by mouth are pretty much useless. Thankfully, my doctor has prescribed some medications that are taken by other means (nasal spray, dermal patch, etc.), but it severely limits my choices. ~ MechLee88

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Sensitivity to light

My most debilitating migraine symptom has been the sensitivity to light. When a particularly complex and severe migraine hits, I felt like my eye balls may pop out. The pressure seemed so bad, yet it became worse when I took a deep breath and removed the covers I had buried myself under. I wanted so badly to cry, but knew I couldn’t because it would only increase the pressure and pain. Closing my eyes at night in the darkness wasn’t enough. ~TeresaInTexas

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Photophobia

The photophobia. I cannot face a window, or anything that allows light in from outside. Light sources other than incandescent are also painful. I can never directly face any light source, whether actively having a migraine or not, as the light will trigger one. I either have to have my back to the light or ask that the curtains or blinds be closed, which can be quite uncomfortable and embarrassing to ask because people just don’t get it. ~ Kathy

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So Many Migraine Symptoms

NEXT: 14 Migraine Truths
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