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Patient Perspective: Migraine Symptoms.

Patient Perspective: Migraine Symptoms

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.)

Visual aura

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.

Food cravings

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.

Odd symptoms

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.

BarbiePhotophobia 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.

Cognitive dysfunction

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.

Memory loss

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!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Jana
    4 months ago

    Wow, having suffered with migraines for 52 years, the last ten being chronic daily, I find I’m not the only one with strange symptoms like tinnitus. Sometimes the high pitch ringing interferes with my hearing, thinking, speech, etc. At other times it is accompanied by music that just keeps repeating. Unfortunately I also have MS and quite often it is difficult to determine what is causing a specific problem because it could be attributed to both migraine and MS.

  • Katie M. Golden moderator author
    4 months ago

    Jana,
    Thanks for sharing and I’m sorry that you have tinnitus with your migraine attacks.
    You may find the book “Musicophilia” by Oliver Sacks interesting as it includes stories and science behind auditory hallucinations, like music that keeps repeating.
    -Katie
    Migraine.com Moderator

  • VickieLeigh
    6 months ago

    I appreciated Barb’s comments about strange tinnitus. It made me feel that I was not alone. I hear cricket sounds and have visual shifts that cause disorientation. Sometimes I do not have head pain with it so my doctors keep telling me they doubt it is migraine related, so discouraging.

  • Katie M. Golden moderator author
    6 months ago

    @VickieLeigh – there is a definite connection between migraine and tinnitus. This article might help. https://migraine.com/blog/tinnitus/

    Thanks for being part of the community!
    -Katie
    Moderator

  • PaJeane
    9 months ago

    Barb, you hear “music”? I often hear what sounds like music playing in another room, for example. I used to try to figure out where it was coming from until I connected it to the tinnitus variations I experience with migraine. I have never, ever mentioned the “music” to doctors or family because I’d feel like a nutcase trying to explain it.

  • ucchrismarie
    1 year ago

    I have had chronic, disabling migraine since January 2014. When my headache is especially severe, my family members report that I look like I have two black eyes. They also reprt that one eye is dilated more than the other. I also slur my words and have a terrible time with word retrieval. Since I am always in pain, i feel like my symptoms, especially speech related ones impact my daily functioning.

  • litoria76
    1 year ago

    I have had chronic intractable migraine and get such intense pain in my eye & orbital area that i have to keep my eye closed during an attack. I also have double &/or blurred vision, hallucinate smells and “music”, have almost constant tinnitus, severe photophobia, severe nausea, and suicidal thoughts about having to spend the next 90% of my life in this agony. At least i know I’m not alone…

  • PaJeane
    9 months ago

    Yes! Finally others who hear music. I’m not crazy in addition to having migraines.

  • skipper
    6 months ago

    @PaJeane, count me in. I hear music 24/7.

  • Katie M. Golden moderator author
    1 year ago

    Sorry jlynnegarrett! I actually was talking to my dad lately who was complaining of the same thing and thinking he was just getting older. Knowing he was on a certain medication, I told him it I had been on the same med and in my 20s it really messed with my memory. It can be really scary. So sorry this is happening to you. I keep at least 2 notebooks going all the time because if I don’t, I will completely forget what I have to accomplish. Yet things are still forgotten!
    Best wishes,
    -Katie
    Migraine.com team

  • jlynnegarrett
    1 year ago

    OMG I thought I was losing my mind. I have trouble focusing before a migraine, my speech, searching for words, memory, sleep pattern ( I’m an insomniac anyway). There are some really weird things too. Thank you for this article. I look forward to reading the rest.

  • lobug
    1 year ago

    Tempoary blindness sometimes one eye or can be both before pain starts. I take 75mg of topamax daily. Specialist say ocular migraines. Does anyone else go blind.

  • PaJeane
    9 months ago

    Before the pain starts my vision blurs, I lose partial sight in one eye, then get the aura. I know I have about 20 minutes before the pain hits.

  • litoria76
    1 year ago

    I experience blurred or double vision with halo effect, auditory and olfactory hallucinations, memory loss, incoherent speech, nausea, dizziness, and severe photophobia with my chronic migraine, usually 25/30 days per month. Between the pain of the migraine and the aura symptoms it makes life almost unbearable. I’m in the fight with Social Security to get disability so I can qualify for Section 8 housing and be able to support myself… Chronic migraine sucks!!!

  • Katie M. Golden moderator author
    1 year ago

    Litoria76,
    The entire social security disability process is so difficult. Are you working with an attorney or a non-profit? I used the Advocator Group and they were incredibly helpful in keeping me organized. And they didn’t get paid until I was awarded benefits. If you need help, I highly recommend them or any other similar service- just make sure that you don’t pay them a dime up front!

    Good luck!
    -Katie
    Migraine.com Team

  • parmes
    1 year ago

    My husband can usually tell if I’m in a lot of pain because I start repeating myself, like I’m in a constant loop, I just can’t remember what I’ve managed to say out loud and what I missed.
    We jokingly call it “Mojoing”, based off of Mojo Jojo from the old Powerpuff Girls show. Not this new one, blech. Way too flashy and loud, I can’t stand even 2 minutes of it and it’s complete garbage compared… But I digress haha!

  • Katie M. Golden moderator author
    1 year ago

    I like the term Mojoing- I’ll have to start using that one when I find myself in that same cycle! Best of luck!
    -Katie
    Migraine.com Moderator

  • Tamara
    2 years ago

    I’m curious about Namenda – I also can remember anything when in a migraine. I literally have that day removed from my memory – almost like the mind is helping from getting rid of the memory of the severe pain, and all the other migraines symptoms. But of course when I still have to push through and get things done during those days (which are more days than not), I mess up.

    Most of the time if you lost something you can sit, work through the steps you took and (nor,ally) are able to figure out what/where you put somonthing. I can’t do this at all – can’t tell you ANY details of what I did on pain days. I have lost numberous things and recycled important papers during this time.

    I was suppose to do an exercise for depression – at night “walk thorough” your day and think of 5 good things that happened that you missed. Worked amazing on extremely mild pain days because I could do it. But I literally could not if it was a migraine day – I could not recall the food I ate, the shows I watch etc.

  • Newdancerco
    1 year ago

    I could cry reading this. I’m the same way, and was worried about early onset dementia/Alzheimer’s. My father is in the process of getting diagnosed for something along those lines, which will give me family history of some sort of dementia (we have no doubt he has something, just not which yet), and my neuro just shrugged and dismissed the possibility when I asked if it was a new migraine symptom.

    I’ve got chronic daily migraine, and I never know what parts of my day (or days) will simply disappear.
    It leaves me lost, not even really living, just existing.

  • Katie M. Golden moderator author
    1 year ago

    Newdancerco,

    I can sympathize. Last night I stayed up until 6am, but I couldn’t tell you what I was doing. Or I will walk into a room with such purpose until I get there and have no clue why it was so important 5 seconds ago to go in there. It’s a little frustrating and a bit scary. Post-it notes and notebooks are my best friend.
    I’m so sorry you’re going through this.
    Best wishes,
    -Katie
    Migraine.com Team

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