Migraine disease affects everyone differently. I’ve had the great fortune to meet so many others with migraine, either in person or online. Our conversations have revealed how alike we are in our symptoms or how completely opposite we experience migraine attacks.
I asked five individuals to answer questions about a myriad of migraine topics. I’ll be sharing their answers with you in a multi-article series. I hope you find in their responses a feeling that you are not alone. Thank you to the brave souls who were willing to share their journey with the community!
Meet the patients
Barb from Maryland, who has had migraine for 40 years, with the last 10 years being chronic.
Barbie from Florida, who has had chronic migraine for 18 years after a head injury from falling luggage on an airplane.
Rilla from California, who has had migraine since the age of four, which has continued into her 60s.
Tammy from Michigan, who has had chronic migraine for the past eight years.
Steve, who has been newly diagnosed with chronic migraine after being episodic for 25 years. (Name has been changed for anonymity.)
Do you get a visual aura? If so, what does it look like?
Barb– No, but I occasionally get hallucinations, which I attribute to Ambien. But it could be the migraine?
Rilla– I do suffer from auras, which look similar to looking through a fish bowl.
Tammy– Yes, I get a visual aura. Sometimes I see flashes of light, I see stars floating and I get a kaleidoscope of color with a gray bar in the middle.
Steve– I do not get visual Aura.
Do you either crave certain foods during an attack or find that a specific food repulses you during an attack?
Barb– None in particular, although ice cream is always good! And jellybeans!
Barbie– I shouldn’t but – a McDonald’s cheeseburger, small fries, & Diet Coke are my migraine go to foods, once a migraine hits I usually do not want to eat anything /after I drink Gatorade, crave applesauce & oranges? I can’t handle milk products.
Tammy– I usually crave potato chips during an attack as they are my favorite snack that gives me a migraine. So I figure it doesn’t matter if I eat them, I’ve already got a migraine!
Steve– Foods help as comfort to give me something to enjoy while I am in pain. Good food sort of makes me forget about the pain somewhat while I am eating – must be something I like, pizza, French fries, waffles, etc… I can’t eat a salad when I am in pain but I am always in pain so I don’t eat salad.
Do you ever experience any lesser-known, oddball symptoms?
Barb– I have frequent urination, but I keep very well hydrated. I have weird tinnitus. It changes. Sometimes it’s very high-pitched wind chimes. Sometimes I hear “music”. I also sometimes get a “whooshing” which I can feel in my ear.
Barbie– Photophobia I hate BRIGHT LIGHTS I love my cold dark room, vertigo, blurry vision, runny nose, sinus pressure, watery eyes, yawning a lot, grouchy, in a trance-like state, very distracted, can’t focus on anything, achy all over, jaw pain, shoulder pain, ears ringing, pain up the back of my neck around to the top of my head.
Tammy– I do get easily confused during a migraine, to the point I can’t even answer an easy question or do a simple task.
Do you have difficulty speaking or finding words? If so, when does this occur? Before or during an attack? When you get tired?
Barb– Yes, constant trouble finding – what do you call them? – words! (That was a joke.) I can forget names of people who are close to me. My family is good at filling in for me.
My speech has been affected. I sound like I’m drunk on a good day. My pitch changes from normal to high without warning. I’m getting speech therapy for it. When I was in the hospital inpatient on Lidocaine or on Ketamine my speech went back to normal, so I know it can be done. I saw a movement disorder specialist and an ENT who specializes in speech disorders. There’s nothing else wrong with me that would cause this.
When my speech is bad I sometimes can’t get words out, or I repeat the same word over and over (not intentionally.)
Barbie– I have difficulty speaking or trying to express myself right before & during a Migraine & when I’m exhausted from it. Recently I was out to lunch with my sister and mom and I was having a Migraine type of starring trance. I was trying to pay the bill and I couldn’t even figure out the bill. My Mom kept saying my name & finally I gave the bill to my sister to help me with it. I was slurring my speech a little bit & they all realized I was in a full blown “MIGRAINE MODE” & to get me home. After I’ve rested a few days I’m back to my normal self.
Tammy– Yes, I have trouble speaking and finding words before, during and after an attack.
Do you have memory loss, either during an attack or as a long-term issue?
Barb– I had a terrible memory before the migraine from hell started, and now it’s worse. I make a REAL EFFORT to remember my neighbors’ names and the nurse’s names when I’m inpatient.
Rilla– Due to the Familial Hemiplegic Migraines, I suffered 3 small strokes. I sometimes I have problems thinking, remembering, and speaking. This is a long term issue.
Tammy-I have memory loss all the time now due to my chronic migraines and constant high pain from them. I am on Namenda for it (a drug originally developed for Alzheimer’s patients). It helps some but, I’m still extremely forgetful. It’s very embarrassing.
Future topics in this series will include Triggers, Migraine Life, and Complementary & Alternative Therapies. Thanks again to Barb, Barbie, Rilla, Tammy & Steve for sharing!