Mismatched Lego Pieces of Communication: Aphasia and Migraine

By Kelly J.

2 min read

Last updated: April 2023

Recently, while we were on a walk, I was talking with my partner about my migraines because I was having a particularly difficult day getting my words out a few days previous to that day. We discussed my frustrations, his amazing ability to be able to put my garbled words together, even through text, and the patience that it must take to be a partner to someone who struggles with aphasia frequently. I really have anxiety over it because it causes me to completely stop mid-sentence sometimes, and I have to try to say the phrase again multiple times, sometimes altogether.

How is aphasia like lego pieces?

I call them mismatched lego pieces, as well as missing puzzle pieces. My partner is particularly great at putting these mismatched and missing pieces together, whether it be in person, on the phone, using video chats, or even through texts. I refer to them as lego pieces, too, because the aphasia we struggle with often feels painful, like stepping on a lego out of the blue. You never know when one will sneak up on you and oftentimes, you feel embarrassed, frustrated, and left upset. Lego pieces can also cause great physical pain.

How does my partner reduce my anxiety?

I am so thankful for the partner I have and how considerate, patient, and understanding he can be when I struggle with migraine symptoms that leave my brain a bit blank and my mouth a bit “drowsy.” I’m thankful I no longer immediately get frustrated and feel anxious forgetting words and complete phrases backward and incorrect because he doesn’t judge me.

How does my partner support me?

If I laugh, he does too, and if he can tell I’m frustrated, he will give me time to try and re-correct what I’m trying to say. If I’m really struggling and get a little quiet, he will help me by asking a question that might help me reword things. I’m not even sure if he is aware of how much this helps me or if he even knows that he does it, but it helps validate my struggle and get over the frustration a bit quicker. Sometimes it’s frustrating for us when we are corrected, too. I feel like that’s a point that needs to hit home and be validated within our community. We know what we’re trying to say, you know what we’re trying to say - sometimes it’s best to just leave it at that!

Those darn lego pieces. They get in the way of everything, especially when you think things are going smoothly. They always find a way to get in your path and wreak havoc on those who are in your path.

I'm glad I'm walking through life with someone who doesn't mind picking up the legos when I drop them (figuratively out of my mouth and in a text message). I'm lucky to have a partner who is understanding and can make light of the thorn in my side that is getting sentences right on the first try!

Recommended Story

You never forget what it is like to have a migraine.

4 comments

Recommended Story

Perpetual cycle of Migraines, Depression, and Anxiety

7 comments

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.

Join the conversation

Please read our rules before commenting.

Marcellus Member
Brilliantly written (and my wife is an award-winning historical romance author, acclaimed editor and wordsmith). The analogy to Legos is inspirational, as it helps me, anyway, feel some of the emotions and possibly even the physical discomfort you go through and experience. Maybe it's also because, although my lifelong migraines have never had any 'aura' component, I experience a much more limited forgetfulness of certain key words!?! And I definitely have a great difficulty in recalling names of people I know either personally or they're public figures I've known for a long time. Especially if I've only 'heard' their name. I'm a very strong 'visual' learner, and definitely NOT an 'audio' learner. Regardless, your article clearly spoke to me. I'm thrilled you have a partner who understands your condition, helps aid in your communication (I too am so, sooooo grateful for my 'wordsmith' companion–like having a thesaurus around), and accepts you unconditionally. That's priceless!! Even if you're still left sometimes wishing your aural migraines didn't mess your speaking abilities as it does. Migraines remain merciless tyrants, so often encroaching on our 'normal' otherwise!?! Yet even when we can keep them at bay, through extensive lifestyle modification, a veritable cocktail of meds to keep their worst effects somewhat at bay, vigilance is constant, and some days our best efforts tire of their never ending presence. And in spite of wonderful companions, friends, and family, and ever improving medicines, down deep we still wish we could bid these intruders adieu. [Full disclosure—I grew up since infancy with 'Sporadic Migraines,' as did my oldest sister and our Dad. He outgrew his; we did not. At 41.66 yrs old, mine transformed to 'New Daily Migraines.' After a 15-yr search whereby just about every traditional and non-traditional therapies were experimented with, it became clear that mine had become 'Intractable/Refractory Chronic Daily Migraines.' I still practice a total and permanent avoidance of all common food triggers; same for all other triggers, including a forced early retirement; I maintain a rigid diary using an Excel spreadsheet I've developed and adjusted over time, designed to catch patterns to inform me and my primary migraine and pain management provider of possible changes along the way; I use a cocktail of generally helpful (after extensive experimental approaches over these 26+ years) Rx meds — a preventive, an aborter, pain management and supplemental strategies — designed to manage the worst effects of the disease, and make daily life livable, while avoiding runaway migraines which might land me in the ER (which we avoid like the plague).]
1. Peggy Artman Moderator
 Marcus, Thank you for sharing your journey. I like the idea of keeping a detailed migraine diary on an EXCEL spreadsheet! It sounds like you are very vigilent in trying to find and avoid your migraine triggers. I hope your pain eases up for you soon. ~ Peggy (Migraine.com team)
shaggy78 Member
I spend HALF my day trying to find things I’ve misplaced or lost and during bad weeks or months I feel so stupid because I either forget what I had planned to say before I could turn my thoughts into words or I start speaking and forget what I’m talking about halfway through. My short term memory seems to get worse every day. I am just 42 and had to stop working six years old and both of my parents were laid off of his/her jobs at age 65 and since no company wants to hire Seniors they were both forced to retire at 65. We live off of my Disability check since Texas rejected millions of dollars in Medicaid expansion so I don’t qualify for SSDI - it’s only available to kids and single parents. My parents are amazing and we depend on each other. We all spent our entire life savings (close to $400,000 on my injections, nerve blocks, nerve ablation, and a spinal cord stimulator. When that made my pain worse I was talked into greater & lesser nerve decompression during which they took out the stimulator and battery (NONE of which was covered by insurance. The decompression surgery alone cost $40,000 which the wanted paid up front, promising a 98% success rate which sounded too good to be true. Once my parents are gone I’m not sure what will happen bc I don’t have any friends and our house isn’t paid off... so the survey question about whether or not my doctors ask me about the future. It seems lonely, painful and something which I don’t plan to experience. My reason to continue existing is my Parents and ends with them. Despite hospitals, doctors, neurologists, pain specialists lying to patients and telling us that opiates/opioids don’t help MY kind of pain I KNOW THAT DESPITE THE HUNDREDS OF PREVENTATIVES, ABORTIVES, DANGEROUS MEDS FOR CREATED FOR OTHER PURPOSES BUT GIVEN TO US FOR OFF-LABEL USE, the ONLY TREATMENT THAT HAS EVER HELPED IS OPIODS LIKE OXYMORPHONE & HYDROMORPHONE. However, 95% of practicing Neurologists and pain specialists are too afraid of the DEA to treat patients with compassion and to do no harm. Tolerance and/or addiction are well know side effects of these meds. People who become addicted while being treated with prescriptions know the risk. We also know that addiction is a disease but it is the ONLY recognized disease for which people get no empathy or help. I’ve seen Alchohol start more fights, horrible vehicle wrecks, accidental deaths, cheating, hitting and breaking up relationships and friendships more than all other drugs combined.
1. Peggy Artman Moderator
 shaggy78, It sounds like you have been through a lot. I'm so glad you have such wonderful parents for support. I know its frustrating when medications don't work and our pain continues. Do you have a neurologist or a Headache Specialist? Headache Specialists specialize on only treating migraine and headache disorders. If you don't have a local one, you may have to find one out of your area. This type of doctor may have some more ideas for you. You can use this website to find a Headache Specialist. You will also find useful information on this site. Please keep in touch and let us know how you are doing. ~ Peggy (Migraine.com team) <a href='https://americanmigrainefoundation.org/find-a-doctor/' target='_blank' rel='noopener noreferrer ugc'>https://americanmigrainefoundation.org/find-a-doctor/</a>
migraineprisoner Member
Your story hits home. The sneak attack is the best description of this frustrating and embarrassing symptom. When I find myself in the throws of aphasia I'm so focused on trying to get the words straight in my head that I confuse myself even further. I'm an excellent communicator and a wordie, so when I lose my words I'm almost in a panic, making the episode doubly difficult. It is not until the gen pop understands and accepts that migraine is a neurological health issue and not just a headache that any we will feel validated as migraineurs. I have the dubious distinction of heightened sense of smell. It's a common occurrence for me to pick up a fragrance, odor, etc before anyone else does; and if I mention that I do, others generally look at me kind of funny only to discover it themselves a short time later. I learned to keep my mouth shut and let someone else say it first; and then when no one is looking, I give myself a resounding 'YESSSS!'
1. cattfink Member
 <inline-mention username="Holly Harding" user-id="3755969"/>, Thanks for your kindness and reassurance. It's a gift to be seen. I absolutely experience phantom smells. I've cycled through several over the years. Currently I catch ghost scents of gasoline or paint thinner maybe and what I can only describe as Victoria's Secret Love Spell (I find this one especially unpleasant). My coworkers know when they see me wandering with my nose in the air, to roam around and search for the source to confirm or deny the reality and help me figure out/prepare for a possible impending attack. Their compassion helps to cope with the wide world of triggers and people that don't understand.
2. Holly Harding Moderator
 <inline-mention username="cattfink" user-id="3696214"/> So interesting about the phantom smells. I think that is a wild symptom of migraine. I'm glad to hear your coworkers give you compassion rather than judgment. This is an unfortunate rarity. I'm assuming you've done some work to help them understand what migraine is all about. So glad you're with us- please stay in touch. Warmly- Holly <a href='http://-migraine.com' target='_blank' rel='noopener noreferrer ugc'>-migraine.com</a> team
julee Member
I can't get my words out, so I just pretty much stay quiet. My husband knows when I'm overly quiet I'm in pain. He does everything possible to help, but as we all know the missing word guessing game is not very easy. Thank you for your awesome articles 
1. Cheryl Picerno Moderator
 <inline-mention username="julee" user-id="3781649"/> I'm glad the article resonated with you. Being in pain is hard enough without having to also deal with aphasia! I commend your husband for being there for you and giving you whatever support he can. There's a special place in my heart for people like that 😀. Warmly, Cheryl <a href='http://migraine.com' target='_blank'>migraine.com</a> team
sandy-v Member
I often thought i was loosing my mind after a migraine the loss of words, i know what im trying ti say but cant get it out. This alone becomes frustrating then add on making a drink, putting it on my table then wandering off to speak to the kids.. you guessed it making another drink convincing myself that was what i was about to do and there it is sat on the table. The pain intensity of migraine seems to be worse now with being in the the throws of menopause so preventative meds amiltryptaline given. Well they alone make me feel like a space cowboy, forgetfulness weepy and grumpy at all once and uncontrollable tiredness during the day but broken sleep at night. But I really never knew that other people suffer the feelings of frustration not being able to remember what i was saying or not being able to get the words out. Im so glad you have an understanding partner, the analogy of lego bricks…. Simply brilliant . 
1. Rebecca C Moderator
 <inline-mention username="sandy-v" user-id="3864602"/> Having the grace of a partner who allows you that space to find the lost words, the confusion of thinking you haven't made your drink, or when menopause and preventative medications make you a raging zombie is the best medicine you can ask for when "stepping on those darn legos". Hoping you have someone you can depend on to pick up and put those legos together for you without feeling frustrated. Rebecca (comm advc)
dinamay Member
I used to have bouts of aphasia that terrified me and worried my husband no end. Now he’s in a nursing home and I don’t worry about the aphasia, just wait it out. When the words won’t come, they can’t be forced. But they’ll come along in a few hours, or days, depending on the whims of the migraine monster. Sweating it won’t speed that monster along, I’ve discovered. So I just wait it out. He’ll give it a rest eventually and speech will return.
1. Nancy Harris Bonk Moderator
 <inline-mention username="dinamay" user-id="3907903"/> Thank you for reaching out and sharing. I hear how difficult and frustrating it is to live with bouts of aphasia. It sounds like you have a great plan for dealing with this. I try to be patient with myself when this happens. Some days are easier than others. Wishing you a peaceful day, Nancy Harris Bonk, Patient Leader/Moderator <a href='http://Migraine.com' target='_blank'>Migraine.com</a> Team
azreynolds Member
<inline-mention username="cattfink" user-id="3696214"/> , <inline-mention username="Holly Harding" user-id="3755969"/> Yes, aphasia and hyperosmia are so challenging to live with! The first thing that comes to mind regarding the aphasia is whether or not medication can be adding to the problem. When I was on high amounts of triptans because of daily migraines, I developed stammers, aphasia, and fainting. The neurologist did not connect the dots! I figured it out on my own after I was laid off from my job thanks to my migraines and my health insurance stopped. I could no longer afford to buy my migraine meds. My suggestion is to review all your medications and see if this side effect is listed. Regarding inability to tolerate fragrances, or in my situation, hypersensitive sense of smell known as hyperosmia, which causes me to smell people's perfumes and clothes detergents from 30 ft away. Mine was brought on by a brain injury as a child, but worsened over time. It's almost impossible to have this and live in today's world. I too have stopped house fires and gas leaks, but I've lost count on how many times I've stopped I've Living with hyperosmia with these detergents that everyone uses nowadays is absolutely impossible. That's why I lost my job in 2015, because I cannot get around the strong detergents. The reason for my severe reaction I think is because of the polymers that they use which makes the fragrances so strong and last so long. These fragrances are made from petroleum byproducts and are cancerous. They are not good for us! I feel like the canary in the coal mine. I'm warning everyone, but nobody is listening to me. The way that I live with this is by living in isolation 90% of the time. But in reality we have to go out in public from time to time. We have no choice sometimes, like going to the doctor or picking up medication at the pharmacy. I discovered during the pandemic that certain N95 masks can help reduce the fragrances. I put on N95 masks anytime I leave my car. I put it on inside the car and so I am wearing it as I step out because you never know who has left a vapor trail. But not all in in 95 masks are created equal!!! The only one that I have found that keeps smells out pretty good is made by 3M. It fits snuggly on your face, has a metal band to bend it tightly over your nose and covers tightly under your chin too. It's called 3M Aura 9205. I've attached the picture so y'all can see it. There's another one made by al-Shields that works a little bit, but it's just not quite as good. I highly recommend trying these if you have hypersensitivity to perfumes or multiple chemical sensitivity. You can purchase these online and they are inexpensive! Only $10 for 10 of them. So wearing a mask helps, but how do you eat dinner? Simple. Eat in the car, or take it home. Sometimes if you go to a restaurant during off hours, you might be able to eat indoors at some places, but you have to scope out the restaurant before hand. But even then, most likely you can't go in the restroom without risks, so I keep a mask in my purse, and put it on before entering the restroom. I carry my own scent free hand soap too...which my husband has to also use or else he'll set me off in the car returning home. Last year my family amazed me. They all followed my "perfume protocol" just so I would come visit them because I hadn't seen most of them in 10+ years, some even longer. I hadn't met any of the new spouses because I can't go to weddings. All of them bought scent free detergents, shampoos, conditioners, deodorants, soap, hand soap, etc. just so they could visit with me and give me hugs. (I'm tearing up right now remembering the huge effort they all put in!) You must realize, we're talking about 8 families doing this!! And believe it or not, they're doing it again so I can visit next month! It's humbling to me. I'm so grateful! 
1. Holly Harding Moderator
 <inline-mention username="azreynolds" user-id="3677307"/> Hi dear! Good to hear from you and hoping you're continuing to heal well from the fall. I appreciate so much your sharing your experience and wisdom related to navigating life with hyperosmia. I found your suggestion about wearing a mask most interesting and helpful. So grateful you are with us! Warmly- Holly <a href='http://-migraine.com' target='_blank' rel='noopener noreferrer ugc'>-migraine.com</a> team 
2. Melissa Arnold Community Admin
 <inline-mention username="azreynolds" user-id="3677307"/> What an incredible gift to have family that is willing to rally together to include you. It's so hard when you're on the outside and don't fully understand someone's illness, but they are clearly showing their concern and love in this way. I hope it all goes perfectly and you get so many hugs. You deserve it! Wishing you continued recovery and peace. -Melissa, <a href='http://migraine.com' target='_blank'>migraine.com</a> team
azreynolds Member
Sorry, I failed to attach the photo of the 3M Aura 9205 N95 mask that helps keep fragrances and some chemicals out. However, I do not see my earlier posting from just a moment ago. If it doesn't come through I will happily retell my story because I hope it will help other people too.<img src="/content/images/2023/07/17/b3d04751b9e00a6c30533c3b6ba5f2c8_medium.jpg" alt="3M mask" class="uploaded-image"/>
1. Cody Leach Community Admin
 <inline-mention username="azreynolds" user-id="3677307"/> Thank you for sharing what's been working for you 😀. I approved your image so that others can see it. I also noticed that your other post went through, so you should be all set. Wishing you a great day, - Cody (Team Member)

Community Poll

How many medications do you take to manage your chronic migraines?