What does Aphasia feel like?

There has been much talk of Complex Migraine, thanks to Serene Branson’s on-air display of aura that resembled a stroke. It’s been mentioned in many posts here on Migraine.com. Here are some examples:

Serene Branson & Complex Migraine: Unraveling the Mystery

What happened to news reporter Serene Branson?

Serene Branson an accidental advocate for migraineurs?

Complex Migraine Is the Verdict For Reporter Serene Branson

Like Serene Branson’s case, aphasia – the inability to use language – can be a part of Migraine with aura. I’m sometimes asked what aphasia feels like. Here is my story of the first time I suffered aphasia:

I was alone, in the middle of the night at my job as an emergency dispatcher. The phone rang and I was able to say “Hello” but after that came one of the biggest surprises of my life… “Sheriff’s Department” came out all wrong. I could understand the person speaking to me, but when I tried to answer them,jibberish was all that came out. I tried a few times to correct myself, but each time nothing made any sense. The person on the other end of the phone laughed at me because they thought I was joking. It seemed like it took several minutes, but it was actually less than 2.

In my mind all I could think of was – this is the sign of a stroke. How am I going to tell someone what is happening? I’m stuck and I don’t know what to do. The person on the end of the phone “played along” and I said “Ummm” and we got through the call.

When the call was over, I sat there, absolutely sure what I SHOULD do, but unwilling to do it. This just wasn’t happening. I knew I needed to call someone to let them know what was going on. If this was a stroke, I was going to need help quickly. But caller ID was fairly new… and who do you call in the middle of the night when you can’t talk?

So, I waited…

My heart pounded in my chest. I felt both sides of my face. I looked in the mirror. I moved arms and legs and pinched myself to be sure there was no numbness. Everything seemed okay, except that I couldn’t speak. I tried to parrot what was being said on the TV in my office. I remember thinking it felt like hearing your recorded voice for the first time, but saying something in another language, or backwards. I kept trying to fix it, but nothing worked. It made no sense to me… what was going on?!

I watched the clock. Whatever it was eventually passed, and by the time anyone else came on duty I was back to normal. I had no Migraine or pain of any kind for quite a while, just the inability to speak. My officers noticed I looked spooked that day, but I waved it off and I suppose they blamed unruly prisoners or rude callers for my strange mood. I told no one for about a week.

I was afraid.

I knew how lucky I was that I didn’t have an officer with trouble, or that an emergency call hadn’t come in. I had visions of some of the bad things that had happened to my officers in the past, and scenarios darted through my brain like fish in a brook. My dad had been a state trooper and he had been injured in the line of duty, so I fully appreciated how dangerous this really was. This wasn’t just about me. I knew what I’d want his dispatcher to do if something like this happened…

Quit.

I was still in a state of shock and disbelief.

That first attack only lasted about 15 minutes. I saw my doctor who immediately referred me to a neurologist who took images and shrugged his shoulders, saying it was probably my Migraine attacks that had caused the trouble. It was the first time I heard the word aphasia. I had to write it down to remember it. I had no idea then that Migraine aura could be so devastating.

Truth be told, I was disappointed that it wasn’t a TIA instead. I thought — “there are things I can do to help eliminate TIA’s in the future, but I get Migraines nearly every day and no preventives are helping me. I never know when they’re going to happen — I have no control over what is happening. “

It was a very helpless feeling when my doctor told me he didn’t know what to do to help me. He said, “Luckily it won’t kill you.” I felt trapped in a body that was failing me. I enjoyed my job, but how can I keep doing it, never knowing if I was going to put someone’s life in jeopardy? This Migraine Disease had already taken so much from me. Was it going to take my job and my voice too??!

My doctor suggested I play the watchful-waiting game and see what happened. He explained this could be an isolated incident. I clung to those words. But he was wrong.

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

View Comments (46)
  • Serendipity
    6 years ago

    Hello, I am a first-time poster on this forum. Until I met with a neurologist today I did not think I had migraines. She says I am in the “family” of migraine sufferers but without the classic symptoms. Briefly, I am a 56 year old white female. I get occasional mild headaches that respond to Excedrin Migraine. In the past couple of years I have had two ocular migraines – at least that’s what a friend of mine who is a Nurse Practitioner said when I told her what they were like. Vision getting dark, difficulty seeing computer screen, lasted 30 minutes each time. About 3 years ago I also started getting vertigo when I would turn my head and look up at a sharp angle. She said that was BPPV, a benign form of vertigo due to a piece of cartilage floating around in the ear fluid. One episode was so bad I had to hang on to the fridge with my eyes closed until it passed. That phase passed, and then recently the vertigo has returned but it is mild and I can avoid it by not twisting my head to look up. Although recently one night I woke up, I was in the dark with my eyes closed and the room was spinning – it was a crazy awful sensation!

    And about 5 years ago I developed a headache reaction to chocolate.

    So, that’s about the extent of it. I rarely feel nausea when I have a headache, and when I do it’s mild. No light sensitivity.

    Until, a month ago when I developed the exact sort of aphasia that Ellen described in this blog post. I was by myself, had fries at a takeout place, left that place to walk to a thrift store a block away, felt a bit weird, “not myself” but no specific symptoms. Shopped at the thrift store, then when a guy asked me for advice about a dress his girlfriend had tried on, I understood what he was saying, knew what I wanted to say in return, tried to talk and what came out was a bit garbled. Close enough that he could understand what I was trying to say, and he finished my sentence for me. It lasted about 5 minutes and then slowly I was able to speak clearly.

    I have low blood pressure, my cholesterol is OK, maybe a bit high (it fluctuates). The bad cholesterol is low, and the good cholesterol is high. I just went through menopause.

    So here’s the thing. I saw a neurologist today, all clinical tests were normal, I described my history, and what happened the day I had aphasia, and she said when it’s a migraine-related aphasia the patient usually reports a headache either before or after the incident and I had no headache, so she suspects that I had a TIA, a mini-stroke. Wow.

    Anyway she referred me for a brain MRI and an echocardiogram, but she said that even if there is no sign of damage on the MRI, TIAs often don’t leave any signs of damage behind, so she can’t rule out a TIA.

    My mom had a bad stroke, but she smoked for 50 years and had high BP and atrial fibrillation. Ironically she didn’t throw a clot, she had a brain bleed from amyloid protein deposits in her brain.

    I don’t smoke or drink! My only risk factors for stroke are being post-menopausal, having cholesterol that is a tad above normal, and possibly hereditary amyloid in the brain.

    Oh, and the neurologist said that even though I don’t get “classic” migraines, my symptoms put me in the classification of somebody who’s “on the spectrum toward migraine.”

    So, I’m glad I found this site and am going to look around and see what I can find, because frankly I would rather the aphasia was migraine related than to think I had a mini-stroke at my age, which would great increase my risk of having a major stroke in the future. Thanks for having this forum here.

  • Serendipity
    6 years ago

    PS, one more thing that the neurologist said tipped her to think it was a TIA, was my reporting that I felt “not quite myself” in the 30 minutes before the aphasia. She said that many people who have a TIA report that.

  • Barbara Williams
    7 years ago

    Wow! I have had interventions done on me. I describe aphasia and am told that there is no such thing. If the doctors bother to define it, it probably exists. I am so OVER having these symptoms attributed to alcohol and drugs. It is so much easier for people to believe that it is your fault. This allows them to be cruel while it is happening and you are already frightened. Yes, today I am a hater.
    I remember my first one vividly. I was, of all things, on a blind date. I think I uttered a garbled “stroke” and pointed to the hospital. Many frightened hours later the Doctor explained it to me.

  • Barbara Williams
    7 years ago

    Joanne Bolnick This would be the fourth Doctor who thinks that I should smoke weed and throw out the rest of my medications!

  • Barbara Williams
    7 years ago

    oh. with me it is always the left side!

  • Barbara Williams
    7 years ago

    I am constantly having “interventions” while scared shitless. I am not allowed to be on hormone replacement therapy, because I have anticardiolipensyndrome. I see a specialist tomorrow. I have very little hope at this point and have been threatened because of it. I want to give up but it is not in my nature. I have had tia’s as well. Maybe you can call and yell at me during my next one if i promise to do the same for you! It is imperative to keep a sense of humor when life and people suck.

  • Joanne Bolnick
    7 years ago

    I’ve had two TIAs where the migraine closed off the right side of my body. I spoke in dyslexic gibberish for a half hour. Now that I am off hormone replacement therapy, I have very few migraines!

  • Neil Crump
    7 years ago

    I’ve had migraines for 23 years & have only just discovered this site in its current form. This article is extremely well written & is similar to my own first experience with aphasia.

    In my case, migraines started at age 12 and my first Aphasia episode began at a very inconvenient time: During a history lesson when it was my turn to read aloud to the class. I struggled to see the words (visual aura) and though I could read them, I couldn’t comprehend them or read them back in the right order. The wrong words ‘came out’.

    At the time I didn’t know much about migraine (a common perception at the time was that ‘they only happened to women’) or what was happening to me, but was relieved when it passed. I didn’t tell anybody what happened- I barely knew how to describe what happened.

    Despite this being a one-off, the school reaction was to assume I either couldn’t read properly, or that I struggled with reading to the class. They sent me to a special reading group that I didn’t need for 6 months without any discussion.

    So, it’s very important to me to raise awareness, so that more people can identify Migraine and deal with it properly. The ignorance I’ve seen over the years has been almost as bad as the disease itself, with unqualified people telling me I need glasses and one person at work flat-out telling me they didn’t believe me when I said I couldn’t see during the aura.

    Fortunately the frequency and severity have reduced over the years – I’m now 35 – Which I hope gives some hope to younger migraine sufferers who might read this.

  • Julie Hanson Card
    7 years ago

    thanks for your thoughts- they wanted to put me into the psych ward (my husband absolutely refused) because they hadn’t seen migraine action like this before when I ended up in the hospital. I have found more about migraines etc using an IPAD than any neurologist….

  • Jenny Barber
    7 years ago

    Hi All, Yes I have the very same things happen to me when I have a migraine, I can’t speak at times my words wont come out, during this time I also cant think, it’s an altered sence of Consciousness, my cognetive function declines. Then comes the vertigo! shocking.

  • Valerie Winsor
    7 years ago

    I have just recovered from a wicked migraine with aphasia and ended up in hospital over Christmas. The only doc who agreed that aphasia could go along with a migraine was a young resident. I was very glad to realise it was not a stroke, but I surely don’t want any more of these! I have not had a migraine for at least five years. Why now?

  • Jenny Barber
    7 years ago

    so good to know others out there understand what it’s like and that it’s real!

  • Deborah A. Eberhardt
    7 years ago

    I’ve had aphasia about six times.
    before & it is the scariest thing when.
    you are in the midst of it. I thought
    it was a stroke also. Luckily, it doesn’t happen that often for me.

  • Holly Allen
    7 years ago

    Ellen,
    I know you wrote this article a bit ago but I have been having these attacks more often lately. I had one last night where I could not move my arms or upper body at all I could not get any words out. Thank god I was laying in bed, but at the same time I was laying in bed feeling like I was spinning down the drain in a wierd spiral or something. My migraines have been chronic and I have them more days than not, I am trying to have the most normal life I can. But it seems like the second I try to relax I “spin out of control” right into an attack. My aphasia has become increasingly worse where the words I try to say just get all jumbled or don’t come out at all, I am already out on temporary disability from work and it has almost been a year, my doctor is more concerned with treating the frequency of the migraines than anythig else. I am not sure of what I should do next. I feel like I am in a losing battle with this disease and will end up stuck in bed at the end of the day unable to move or tell my husband where I hurt. There are days where I am pain free and I am thankful for them, having this invisible disease is hard enough.

  • Jonathon McCann
    8 years ago

    This has totally happened to me on multiple occasions. One of the first was at a get together where I would be meeting all of my peers in the Honors College at my university for the first time.

  • Deborah Marie
    8 years ago

    Well, it is amazing how Hollywood can make something popular. I am working on a project to get more awareness out there.
    I have been to the hospital for all of the complex systems, but today I will talk about “aphasia” before I learned that term. I went the hospital with that nothing coming out of the mouth right. They asked my husband if I had a mental problem and those words are polite words. They took a few minutes but it seemed like hours and got me into the er room.
    Then there was no nuerologist on staff and the Dr had not seen this before?
    Finally, after my husband was in tears and screaming for help… They did the stroke test, etc. I had instructions in my purse but I had gone into paraylsis by now. Finally, my husband showed them another hospital instruction….by now a hour had gone by,,,, I thought I would never come out of this.
    This hospital followed the procedure and I came out made as hack. I told them the name of the migraine and learn or go back to school.
    Lastly, I have aphasia now from so many mistakes in doctors offices when this has happened, etc. I am at a specialty hospital for the last 1.5 yrs as outpatient due to error from a doctor.
    My point… If they do not get you better in 5 days like ms Susan…..get another doctor.

  • Karen Stanley Haack
    8 years ago

    That is what we went through with Sami the paralysis is so frightening. They found her one time without a pulse passed out in the hall way and with leg paralysis. It is so scary. What is worse however is the way they treat you at the ER. Our taxes are $5,000 a year to fund this particular hospital. What to do? We get treated like crap with the worse doctors in the world. The doctors at Halifax Hospital in Port Orange all need to be shit-canned because they are useless.

  • John Gerber
    8 years ago

    For me I get confused words I know that I know I can`t remember the meaning or spelling I keep trying to think and can`t I keep saying I know this I know this. Words I know the spelling to I can`t remember. It is frustrating.

  • Kathleen Bair
    8 years ago

    Very well wriiten. This is exactly what I go through several times a week with aphasia and what ultimately cost me my job, my fiancee and landed me on disability. Thanks to Serene Branson bringing migraines to the attention of neurologists nationwide I was finally taken seriously and given a diagnosis other than conversion disorder or depression. I was diagnosed with hemiplegic migraine after six years of episodes.

  • Deborah Marie
    8 years ago

    God bless you….
    That conversion disorder was used on me but finally after 3 years … I got the right doctor; the 2nd cognitive test that eliminated all mental illness and conversion disorder.

  • Stormlaughter
    8 years ago

    I don’t feel much of anything when it happens. So far,
    it’s always been before the pain phase and it’s so distracting,
    I never remember any physical symptoms. No warning either.
    I guess that’s partly why it’s so distressing.

    The first time I can recall an episode was when I was
    married. Nowadays, someone will call “oatmeal” when it
    happens. Absolves me from any and all nonsense coming out
    of my mouth!

  • Karen Stanley Haack
    8 years ago

    Sami use to get thosel…….When they said her headaches were from depression and gave her prozac….Never take anti-depressants they are poison.

  • Rebecca Atchison
    8 years ago

    While I can definitely sympathise with the UTTER HAIR-TEARING FRUSTRATION of having a doctor dismiss/misdiagnose one’s symptoms as “depression” because they can’t find a proper diagnosis, that’s kind of a sweeping statement. Certainly you don’t need to be taking them if you don’t need them, but anti-depressants are certainly not poison to those of us with chronic depression or bipolar disorder–in many cases they’re the only thing keeping us afloat. Please don’t lash out at things that are meant to treat other problems just because some crackhead doctor misused them. 😉

  • Karen Klein Crow
    8 years ago

    Just last week, I had a migraine that was starting to get out of control, but it was coming and going. I started a new med Wednesday evening (has a half life of 8 hours), and by Thursday morning, I couldn’t speak right, couldn’t think straight, couldn’t see straight, and couldn’t walk straight either. Somehow I managed to make myself get to work where the problems only continued to increase as the day went on, and I was finally sent home by one of the managers. I called neuro’s office, and told to lay off the new med and wait and see what happened. I was in the ER the next day because the symptoms had not improved…guess it wasn’t the new medication, was it?

  • Karen Stanley Haack
    8 years ago

    Allergic reactions from medications can take up to several days to clear your system if you have any kind of metabolic disorder. Sami has been sick for 2 months from an MRI with contrast. However it was not an allergic reaction. It is an adverse side effect. Those Halifax Hospital doctors couldn’t make a correct diagnosis to save their lives. They always run the same tests no matter what the symptoms. Plus they are not the kind of tests that need to be ran when she was having these symptoms.. (what idiots.)

  • Andy Honaker
    8 years ago

    I too, have had instances of aphasia related to my migraines. I can’t speak properly and the right side of my body becomes numb in addition to other effects. One startling symptom is that I am able to use my left hand to speak using sign language. While I am unable to use the right.

    I have found a couple of apps for aphasia that work on cell phones. Both iPhone and Android apps are available. These programs allow you to choose a phrase and it is spoken for you.

  • Deborah Marie
    8 years ago

    What are the apps?

  • Ann M Dow
    8 years ago

    I am so sorry for you ellen! but I am so glad you had the courage to speak up here as I too suffer complex migraines with occasional apashia…that I’m not alone is both good and bad…wish no one had to suffer migraine or related things ever but what a thing to know someone else knows how I feel! my last attack with serious aphasia happened in the er with both my 15 yr old daughter and my sis-in-law present…and a young resident who looked especially worried and thought I might have had menegitis…through my fog of pain and nausea I told them all that no I just was having a really bad migraine and the meds wrent working…then they asked me a question and I answered…the minute the words came out I could tell it was happening again…aphasia…they all kinda cocked their heads to the side like I’d begun to speak another language and they looked at me like I’d grown another head….ahhh you don’t know how it gives me comfort knowing I don’t have a brain tumor, have not had a stoke and there are people like me who have what I have and are willing to share so a big thanks from maine!<3.

  • Ann M Dow
    8 years ago

    thanks ‘nissa and hugs back…its not fun but it can be managed and lived around! 😉 keep the faith grrll!! <3

  • Anissa Landry Grant
    8 years ago

    I cannot even imagine, Ann….< >

  • Bonita Harrison
    8 years ago

    my son was dianoised with compex migraines is there any treatments out there he is only 20 he goes pralize on his side it last for hour emt swear hes having a stroke but doctors say know its complex. the 1st time it happen it was very scare lots of thinks go on when it happen hes even hadde chest pains.

  • Bonita Harrison
    8 years ago

    ty

  • Deborah Marie
    8 years ago

    Sometimes you have to go out of state to get a doctor that is good. There is another website or maybe this website has a doctor list. The other is mymigrainconnecton.com
    Pls do not wait long

  • Bonita Harrison
    8 years ago

    we live in arkansas what doctor best treats this and what r you taking for them

  • Lacy Smith
    8 years ago

    That’s what I do when I have my migraines go numb andor throws me n2 a seizure!

  • Teresa Spence
    8 years ago

    Bonita I have complex migraines. Is your son seing a specialist or a Dr. who treats migraines? I take medication now that prevents the stroke like effects.

  • Migraine.com
    8 years ago

    Ellen describes her thoughts and feelings when she suffered her first complex Migraine with transient aphasia.

  • Kelly Hamer
    8 years ago

    I have this quite ofen as well. My neurologist keeps blaming hormones, but no medications are helping me.

  • Susan Mueller-Bissell
    8 years ago

    Amy I have the same problems you have with a migraine and so does my 17 y/o son. I was told this are all symptoms of a migraine, plus I get auras too! I get flashing lights behind my right eye, the side my migraines are on.

  • Deborah Marie
    8 years ago

    It had for me .. My left hemisphere is damaged per my doctor and I have to let people know I have expression aphasia where it is hard to get the words out sometimes. I am on disability now at 55 years young.

  • Ellen Schnakenberg
    8 years ago

    Leigh Ann, I have had the same issue to a degree, and no tumor. So has my son. It just never seemed to come back completely, and has gotten slowly worse throughout the years. Thanks to video, we have both of us recorded years ago when we were “normal”, and when compared to our halting, searching speech now, it is a really interesting study on what this disease can do to us that nobody seems to really fully understand yet. Word searching is a particular problem for me even now, although I’ve gotten really pretty good at covering it up most of the time. I have a really good vocabulary, and sometimes I can find other phrases or words that suffice when something doesn’t come to the tip of my tongue… Leigh Ann, if you are concerned about something else going on, please seek the help of a headache specialist or neurologist. It’s always best to be safe than sorry…

  • Leigh Ann Saldivar
    8 years ago

    Mine have gotten worse too over the years,,,esp the last few months…i am starting to wonder if I ahve a brain tumor.

  • Karen Klein Crow
    8 years ago

    Had this happen to me just last week!

  • Amy Quinn
    8 years ago

    *ment stumble a lot

  • Amy Quinn
    8 years ago

    i dont know if this is the same thing, but i can not think or talk right when i have a migraine. its like i cant get the words out at all, or i stubble a lot. kind of like stuttering. i noticed over the years its gotten worse and even typing is affected. i have been wondering if over the years if migraines cause brain damage? i seems to be happening worse with a migraine, but i always took it as just a symptom of the migraine… like unable to concentrate. but i am noticing it is happening without a migraine now. all things i do plan to address to my doctor on april 4th.

  • Teresa Spence
    8 years ago

    These are the migraines I get. I have also lost my memory and all feeling in my left side of my body. I have a wonderful Dr. now and take meds. that are preventing these attacks.

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