I know you just told me this… but…

Another story? Another story!

Okay, the most embarrassing thing about migraines hands down is the memory issues. I can’t remember people’s names anymore. I often find myself saying, “I remember you, and I know you told me your name, but I can’t remember it.” I forget things constantly. At first I thought it was just from the rebound headaches, but apparently it’s not.

It’s worse when I have a migraine. I honestly can’t remember anything during my attacks (part of the reason why I do most of my writing on here during an attack). But what’s worse is when I don’t have a full-blown migraine. When I’m dealing with prodrome or postdrome and forget things. You tell me your name yesterday? Well I had a migraine today, so I’m going to ask you again in two days because I completely forgot!


I try to tell friends and family, and responses are infuriating. All I get is, “Well, you better remember people’s names! It looks like you don’t care if you don’t remember!” I just want a sympathetic response, some advice about remembering these things, or SOMETHING! Just not an overly critical reply. I’m trying. I’ve never been bad with remembering things before. I’m just bad at it NOW! I’m not used to this world.

What’s worse is I LIKE to learn. I told to people about new ideas. I take online classes to learn new skills. I like asking people about their opinions to gain a new outlook on matters. But I can’t be that person anymore. If I don’t zone out (another annoying symptom) then I forget! What’s the point in being an academic if you can’t learn anything?

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 (20)
  • aks868
    1 year ago

    Oh absolutely! The memory/ word retrieval aspect is the worst part! I hear you and feel your pain. Just know it is not your intellect, just your migraine. I know that doesn’t take away the pain and embarrassment, but you could say to people who are cruel that just as having a stutter doesn’t make a person stupid or insensitive, neither does having migraines. Or, no one would call a person with diabetes rude for not eating someone’s home-made dessert, so why is it rude if you need to ask someone to repeat something because your brain has a neurological illness?

  • mammapeaches (Susan McManus)
    1 year ago

    Wow! So glad to read this and realize I’m not alone. I’m not on any preventatives that I can blame, but being peri-menopausal certainly adds to the mix! It’s the hardest for my daughters who are both in their 20’s. They just don’t understand why I can’t remember things anymore. It has gotten to the point where I am afraid to ask about something I know they told me about because I want to avoid the scrutiny. Makes me so sad.

  • 1scarlett13
    1 year ago

    Topomax (dopamax (my Neuro calls it) does create horrible brain fog. I’ve taken it myself. But I’ve been off Topomax for years. Can’t remember words, losing train of thought, memory loss…those are all common symptoms of Chronic Migraine Disease. I just don’t want anyone thinking only drugs do these things to Migraineurs.

  • blueangel1980
    1 year ago

    I forget things constantly. It makes me feel stupid. People treat me like I can’t comprehend anything ago the time. The just don’t understand.

  • LoadedCamera
    1 year ago

    Forgetting a name, or a place. Unable to find the word, or in my case, using the wrong word in a sentence. Trying to laugh it off as a comical slip, getting frustrated on the inside, while trying to smile on the outside. Yup, just another aspect of the world we live in as migraine sufferers.

    I work in a very technical job, that requires great precision and accuracy. When I am under an attack, and I’m trying to talk to a support vendor and substitute the word marshmallow for memory (multiple times).. or can’t find the word for something I’ve been working with for years and have to stop, and think for 30-45 seconds to find the stupid word. It doesn’t make me look very professional.

    It’s a war that we all face. In different ways, with different battle fronts. The enemy is the same, the fighting methods are different.

  • faeriefate author
    1 year ago

    Thanks for all of the replies! I’m kinda shocked I’m still getting replies, but it helps to know people relate so hard.

    Note to self, no topimax or topirimate. I can’t imagine my memory getting any worse than it already has due to my migraines!

  • eberry1954
    1 year ago

    I have the same memory problems. I took topamax as one of my first preventive drugs and loss of memory and loss of concentration were both side affects. I stopped taking it but I was told that even going off the drug won’t bring it back. Add to that that I also have thyroid disease (slow) and am in menopause the memory and concentration issues are off the chart. I used to love to read books, now I can’t remember what I read on the previous page. What I do read I can remember the gist of the information but no details or where I read it. At work I write everything down or print all emails that require any type of action because I can’t remember to go back and open the emails. I had no idea that having migraines was also affecting my memory. I have learned so much on migraine.com since I subscribed several years ago. I feel validated.

  • John1381
    1 year ago

    This website has helped me so much too. Sensible advice and caring opinion. I did topiramate too, it was awful, shocking memory loss and 1 3/4 stone loss in weight. I was giving a presentation at work while on Topiramate and told my boss that I didn’t think I could do it due to memory problems, I was told told to do it anyway – with predictable results! My boss looked at me across the table and in front of everyone said ‘well that wasn’t very good’. It really dented my confidence even though I knew it was the topiramate.

    This thread has been really useful to me, thanks all.

    John.

  • Carolelaine
    1 year ago

    This is so relatable, I worked retail selling furniture, I could never remember the names of the pieces or where they were on the show floor. People would come in and say you helped me a few weeks ago, I wouldn’t have a clue what they were talking about. I did a lot of faking! The worst was the times that I couldn’t get word out or when I couldn’t find the correct keys on the computer. It made me look so incompetent when in reality I was the top selling part time sales person in the store.
    I just recently left the job because of the stress in my life (a story for another time) and it’s negative effects on my migraines and overall heath. I’m hoping to be able to get things under control and get back to work. I really don’t like the migraine brain that I have, I don’t like looking incompetent, I hate living in a fog. I would like a “normal” life.

  • Nanci333
    1 year ago

    So sorry to hear of your difficulties but know that you are certainly not alone. I have suffered from migraines for 30 years now. Memory issues has slowly become a problem over the last 10-20 years. I believe a lot of it has to do with medication I have taken like topamax. Even after I stopped taking, my memory did not get better and is worse than ever. I have been tested for my memory issues and now take medication that people with deminsia take. I urge all of you out there to seriously review/research medication before you start taking them. Everyone is searching for a cure for pain, and when your in pain you don’t care about side effects as much you just care to help lessen the pain. I completely understand. But please check and really research medication.
    I also began studdering 4 years ago after taking 2 new medications for a week and although I have never studdered before, now I do daily especially when my migraines are worse. So not only do I have CRS (can’t remember shit) I also can’t get words out of my mouth that my mind can say fluently.
    Memory is something I have had to learn to make adjustments in my life. My phone calendar is my life saver! If I don’t something in my calendar I will not remember it. I also use my phone reminders all the time which helps also. Photography has become my new passion because I can remember things better when I look at a picture. Creating my own memory book.
    Hope these suggestions help you. It is extremely difficult having to adjust to these changes but unfortunately it is part of the disease. We have to accept our limitations and be grateful of all the things we do have. Surround yourself with people who are supportive and understanding. Know that “you are not alone”

  • BrownT
    1 year ago

    Thank you for sharing. I thought the memory issues were just me, although the they have worsen as the chronic pain has taken over my life. I have always been somewhat challenged to remember names. It is like I never created a memory of a name to store and retrieve. Words themselves are getting more challenging the longer I suffer with chronic pain.
    I have learned when retrieving a word, that I can spell the word out in my minds eye and read it back to myself. This takes a moment and on bad days can make conversation choppy on my side.
    I tell myself the story that this memory and retrieval part of my brain is starved for blood and therefore oxygen with my migraines.
    Even something as trying to remember my log in password to this site can be defeating.

  • oliver3712
    1 year ago

    I took topiramate as well and stopped because not only did it do nothing, but I noticed I had problems with my memory. It never came back even when I stopped taking it. My memory has gotten progressively worse the longer I have had migraines. I used to have the most amazing memory. Memory loss has caused me a lot of anxiety and embarrassment. I have been to doctor after doctor and none have confirmed that the migraines are causing memory loss. It feels so good to hear that others have been suffering as well.It is nice to know that I am not alone.

  • Angiestl
    1 year ago

    I have always been forgetful also, but when I had to start taking topiramate, slowly my memory became ridiculous. I’ve become the type of person who starts searching the whole house for the set of keys in my hand!! Similar things happen to me on a daily basis, at the least. I knew the topiramate was causing memory problems, but also it caused hair loss (which I found out from migraine.com, thank you all for the answer to a problem I tried to deny was happening!!) and some aphasia. I’d lose words, but I could describe the word that I wanted. It was a difficult way to try to work in a retail setting. Now, I sometimes can’t remember something that happened 5 minutes before, at least that’s what my parents tell me. Frustrated doesn’t even begin to cover how I feel. So know that you are not alone!

  • not so joy
    1 year ago

    Oh honey, forgetting words or switching words has been a family trait for as long as I can remember. But I was the only one blessed with migraines, so I got a double whammy. I haven’t called anyone by their name (unless I’ve known them very well for more than two years) in almost a decade now. There are a lot of honeys, dears, loves & young mans out there that I have gotten along with quite well (& only a few realized I couldn’t remember their name).

  • John1381
    2 years ago

    I understand, I have terrible trouble remembering names and have realised that it is part of the migraine. I didn’t understand this until the last couple of years and just assumed I was thick – as I was told many times school. I have taken over a week to remember a plant in the marsh, it is one I know well but could not recall it.Today it popped into my head no problem, just got over a 5 day stinker and have a few hours while the next one is fermenting. Identifying plants was part of my job until I was ill health retired 6 weeks ago because of chronic migraine, I used to get so anxious that I couldn’t recall simple things. It is definitely the migraine, and we just need reminding when we can’t work things out because we are under attack.

    Thank you all for sharing.

    Take care,

    John.

  • Luna
    2 years ago

    That is part of what gets me so upset about the videos that say 3-5 words then freezes the speaker in a stupid expression for long enough for me to forget what was said. When it comes to names I have always had trouble remembering a name unless I use it often. Now I have to ask again 20 minutes later (or less). Just try to remember that your brain is under attack and busy surviving. Cheerio

  • DonnaFA moderator
    2 years ago

    Hi faeriefate, we love your stories, and your willingness to share yourself with the community. You’re not alone, many members, (including myself) have some cognitive effects. Thanks for being here! – Warmly, Donna (Migraine.com team)

  • faeriefate author
    2 years ago

    Thank you. I can’t really share my stories in my daily life, so sharing them here are extremely therapeutic. My sister recommended that I find a group to talk about my migraine issues with, and I really appreciate how understanding you guys are.

  • DonnaFA moderator
    2 years ago

    We’re so glad that we can be that place, faeriefate. We are so glad you found us and appreciate your contributions to the tribe. We’ll be looking forward to the next story! -Warmly, Donna (Migraine.com team)

  • Tamara
    2 years ago

    I have a cellular, molecular microbial biology degree, got half way through a holistic nutrition degree and now I have trouble spelling simple words. I talk like a elementary student now and have lost most of my vocabulary – although I am in love with autocorrect. I would die if I had to go through university or any course now. I had to drop my nutrition degree because I can’t remember 90% of what I’ve learned and can’t even read above youth level because I forget the sentence I just read.

    I was bad with names before migraines became chronic and basically every person I have meet since in the last two years I do not remember. And I switched church’s in this time …… I only have been able to learn about 10 names and still once in a whi,e I still forget. It suscks and I hate it!

  • Poll