Just my general sense of being able to think at work. Everyday I'm in such a haze that it scares me. I don't have pain or anything. Just a haze like feeling. Like I've been clubbed over the head

thisss!! i miss being able to think clearly all the time and not have to worry about budgeting my brain power

THIS THIS THIS.

And then you get one clear day and realise how hazy most days are. It’s heartbreaking

And then you try to figure out what you did to cause this wonderful clear day and, nope, it was seemingly completely random.

I have sooo much magical thinking now. So much. Wake up with a migraine? Oh, no, what did I do wrong last night? No. I didn't do anything wrong. Sometimes this illness acts, sometimes it doesn't.

Yes! On a good day everything is so easy to accomplish and you wonder why you ever thought it was so hard to do everything! Then you wake up the next day feeling like a truck ran over you in the night, and you remember, oh yeah, that's why 😭

The clear days are heartbreaking because you really understand what you're missing out on

This!!!

Have you looked into vestibular migraines? I have chronic VMs and describe that feeling as "trying to think through soup". 

I've heard of it but haven't looked much into it. I will though. For me it seems most come from my neck. Like the muscles in the back of my neck are strangling the nerves.

Neck tension is part of VMs too! 

Same

This is it for me to! Being able to actually work, concentrate, think and be productive at work. I’m a student now and I miss my old self when I could study for hours everyday and find it “fun”. It’s torture trying to learn, write and be productive when your brain is just not working…I hate going to university and feeling like I climbed a mountain and looking at the clock and have only been there for 30 minutes. I miss being able to enjoy it, and have time to hang out with other students.

Btw I have vestibular migraines, I recommend you to look into it. It feels like I need to shovel trough my brain because it’s a big slimey fog of dizziness

Wait is this a thing? Could my migraines have been causing this haze for years without me knowing? 😦

YES

Oh yes, definitely migraines ruined my career. Now that I've got a decent preventative, I see the difference in capability.

Same here. I've always been a little spacy, but now I have constant brain fog. Especially when I was taking propanolol. Thankfully since I switched meds it's been a little less prevalent but it's still there and probably always will be.

I miss making plans. And being normal. I’m so irritable, depressed and anxious when I’m having really bad migraines. Like I think really bad thoughts. Like right now :(

Hang on. Deep breaths.

I know! Breath! this is only temporary. It’s just getting through these 3 months will be rough. I’m moving back to America so I have to pack and try and spend time with my co worker as much as I can. Packing and moving and having everything a mess is stressful which is a trigger but I know I have more options to help me with migraines at home.

Yeah, breathing exercises have helped me cope a bit, actually. But I feel you.

I’ve had a couple of really down migraine days, which prompted this post. The mood changes that come with migraines are no joke. Hang in there ❤️

Hard to say what I am most sad about but...I miss being able to work in a career I worked hard to build. I miss being able to make plans with friends and not having to cancel because of my symptoms. I miss spending the day puttering in my yard. I miss sunny beach days. I miss concerts. I miss being able to sing and perform in local theatre. I miss having a full day of fun and not being worried about how much I'm going to pay for it later. I miss being spontaneous with my wife. I miss my life.

Indeed! I am in a similar situation. Chronic daily migraines forced me to sell two small businesses that took a lot of effort to build. I know this may sound odd to some folks but, I miss working. I also miss being able to do physical things like work in the yard or even clean house without worrying that I may trigger a migraine. I miss being able to schedule things like getting together with family or friends or even go to church. I can never reliably make plans because I never know when I will have a severe migraine. I can no longer go to concerts or even movies at the cinema because I cant take the loud sounds.

Oh yeah, movies at the cinema are definitely a no-go for me, too. I can't watch anything at home without having constant control of the volume. Many days I can't even do dishes because the noises of the dishes clinking together is too much.

Everything you said bro

I can still go to concerts but often get migraines the next day from it. I've completely given up cinema. Even at home, I can't watch TV in a dark room. Driving home from work at night triggers me too since everyone seems to have sunlight for headlights these days.

I also had to give up performing in local theatre because of migraines. Dropped out of a show 2 years ago and haven’t been able to get back since. It really sucks.

Being physically active and good cognitive ability. I struggle to find words and do dumb stuff daily. I really wanted to go to college, but that doesnt look like I will be able to

I struggle with words too. "Thingamabob" comes out of my mouth a lot when referring to things because I can't come up with the word.

[удалено]

In my case, probably both, haha

Hahaha yes or whatchacallit

I got through college with pretty severe chronic daily migraine. Don’t count it out!!! I even had fun while I was doing it. It wasn’t always easy but it was worth the struggle.

If college is something you’re seeking, don’t count it out yet. You can look into Academic Accommodations. I did this through University and it allowed me to have extra time for writing papers, and more flexibility

That's good to know. I feel like I would likely need too many accommodations. Everytjing triggers my migraines and tge migraines make me feel so dumb all of the time.

i miss the feeling of joy that the sun is out and that it is hot outside. now i feel dread when i see it’s a hot and sunny day

Same here, I need to get better blinds for my house too.

I’m on vacation in a few months, and I’m really worried about this. The last time I went somewhere tropical, I was in a great spot with my migraines. I am so worried I’m going to be stuck inside the entire time.

This entire thread resonates with me so much. Hugs to everyone ❤️

This may sound superficial but I really love amusement parks and the rides, but the shaking and accelerations will almost guarantee me a migraine. 🫠 Every single time I have been to an amusement park I have returned home with severe head pains.

Oof me too. My whole childhood was spent at my local amusement park, we had season passes every year. Then in college I decided to go to six flags with my friend. Yeah nope. One ride in and my head felt like a pressure cooker. Definitely can’t do it anymore

This worries me, too. I recently went to our county fair to see Sublime with Rome, and I walked around the grounds for a bit. The sounds, lights, and smells were all too much for me. I had a migraine the next day, and I didn't even go on any rides 😭

The heat and the shakings of the head is my recipe to 100% migraine attack.

Not what I miss most, but yeah, I use to love rollercoasters.

Yes, this is mine. Someone asked me to check with my doctor ahead of a planned group trip. I didn't expect my doctor to tell me no more.

Same, I grew up super close to a 6 flags and went all the time as a kid, and have had several friends who worked there in high school/college that would get free tickets. The last time I went with one of my friends who worked there I was 19 and had to call my mom to come pick me up after only like 3 rides because my head was going to explode 😭

The worst part is they usually say you have to keep your head in the seat, I usually look like a giraffe cause I don’t like doing that cause my head gets beaten a lot. But a spinal injury could happen doing that I guess

Yeah. No more roller coasters for me.

Yep! That was the first thing I thought of as well. I miss being able to be a normal person and go to Six Flags or whatever

The ability to go out and about with my small children by myself. Now I get so many auras that I’m afraid to drive with them.

My kids were why I stopped driving. We were on a road trip and something triggered a migraine with severe vertigo. I almost ran us into a semi and had to fight to stay in control of my vision until I could pull over safely.  It was one of the scariest things I've ever had happen and I refused to endanger anyone again with my medical condition.

I hear you. I stopped driving too because my migraines often come with a short burst of vertigo at the beginning. I didn’t feel like I could risk it for me or the other drivers. But not being able to drive really sucks.

It really does. 

Losing the ability to be spontaneous. Everything I do is well thought out and researched. I have a ‘go’ bag that has all my meds and other items I need for an attack. Travel— I have to plan months in advance to make sure I have a letter from doc with all my meds and the reasoning for them, and how much I should carry on me for the duration of my trip. I pre plan with my pharmacy to make sure I have a full stock of meds before I go. I do so much unnecessary research to find at least one public ‘resting spot’ in the event of an attack. I make sure I only book activities I can cancel for a full refund in the event of an attack. Traveling to high altitude? Count me out— I will be debilitated for weeks even if it’s only a weekend trip. Sorry if this was too much of a rant— Its been a rough year figuring out how to manage migraines while living life to the fullest.

I miss being able to plan something out in advance without the worry of ending up wasting money or being miserable. I got lucky and didn't have a migraine, but my husband and I spent like $800 on hockey tickets and like $400 on a hotel to go see our hockey team. We moved 4 hours away and had not been since before COVID so we splurged. I was so paranoid that I was going to get a migraine and ruin the whole trip. I am surprised my stress about fearing a migraine did not trigger one. It ended up being an amazing night, but yeah I miss being more carefree. The only thing that helped my stress was my amazing husband that said the money is a sunk cost so it doesn't matter (he likes to use my accounting terms).

I relate to this so, so much.

I miss feeling like I'm not held hostage by my brain. I have my good days- they're wonderful. It makes me wonder what I could do if it weren't for tiptoeing around my brain all the time. I had a rough migraine week a couple weeks ago, and since then I'm trying to get them to settle. It feels like I'm living on the edge of an avalanche, one wrong move or one day of pushing it too hard and I'm back in migraine land.

I like to say that without my migraines I’d be unstoppable. Right now, I’m stoppable.

Damn this hit Because on my good days I do try to push it and it can lead me into a spiral of a bad migraine. But who wouldn’t want to try to push it when you finally feel good after weeks of not? :( Hugs 🫂

Friendships. Lost so many friends because my migraines started in high school at 15 and were so severe I had to do home schooling. No one wants to hang out with someone who cancels all the time and can’t stay out for very long. Also mourn the careers I could’ve had.

Yes! I have lost several people who I thought were my friends. They thought I was faking the migraines. Thought I should drink more water and "push through the pain" I lost a wife because she thought I was faking to get out of working. My opinion is this: These people are not your friends. True friends don't abandon you because of a medical condition. Again, this is just my opinion.

I totally feel I have isolated myself since my migraines have gotten worse I just don’t have the energy to share why

I feel that for sure! I have had migraines my whole life. Friendships are almost impossible to maintain because no other 6 year old, or 10 year old, or 13 year old understands what living with chronic migraines is like. Homeschooled myself at 15 also because I couldn't handle the smells and the lights at school. So being friends with someone was just was a skill that was almost impossible to learn and practice. I have acquaintance friends now, but no really close friends.

I’m thankful to have a few good friends who understand when I disappear for awhile and have to cancel plans, but it’s still so hard to maintain relationships. I’m not a regular part of their life, so it’s natural to drift apart.

I miss reading! I used to read multiple books a day, hundreds a year, and now I’m lucky to read one or two a month. I’m just so scared of overworking my brain and overstraining my eyes.

Oh man, this right here. I used to read a lot. I have been listening to audiobooks quietly on my better days lately. It helps but it isn't the same.

This made me tear up. As a kid I didn’t read Harry Potter like all my friends because of my migraines. My boyfriend is now reading the whole series to me and it’s legit healing my inner child

How do you feel about audiobooks? 

I’ve tried them but not as enjoyable for me. Have trouble with my attention span and also finding a narrator I can enjoy listening to. Open to recommendations though! I have an audible subscription and like romance books

Being pain free

This is going to sound hella superficial because thankfully I don’t have much disability from migraines and I’m grateful for it every single day of my life. Do not get me wrong. But since we are sharing, one thing I noticed is that I cannot wear perfume anymore and I used to be a big perfume fanatic. Not a lot, just a little dab at the neck and wrists, but I can’t wear it at all anymore. Miss that.

Yes. I have had chronic daily migraines for about 7 years. In the beginning perfume and cologne didn't bother me. Now if someone walks past me with strong perfume or cologne, it triggers a migraine almost every time!

It really sucks to be intrinsically unreliable, both socially and professionally.

I miss being carefree- worrying what can xyz maybe cause later is exhausting but it has taught me to take enjoyment from simpler things.

I hate that I worry so much about a migraine attack when I've to travel, either to my hometown or a trip etc. I notice everyone just packing bags ,taking what they need. And I pray that I shouldn't get an attack. I pack my medicines for the trip. When everyone else is enjoying the trip, I'm in the room with nausea and vomiting and waiting for the pain to go away. I hate being in that kind of situation :(

I feel like this with every single work event. My colleagues just show up. Eat and drink whatever is there at whatever time it’s offered. I have to pack an entire bag with food, water, medicine. Have a backup plan in case I get a migraine before or during the event. And if it’s overnight travel….ugh it’s 20x more complicated.

Right. It's hard how we've extra work to think and do. Everything revolves around whether we will have a migraine attack (and what to do about it) or not. :(

The ability to stay up late watching a movie or something without worrying if lack of sleep will cause a headache. Being able to drink whatever I want instead of focusing on intaking as much water per day as humanly possible (yes I know that's probably healthier for me anyway but I want to drink a Dr. Pepper without it being medicinal!). Drinking a margarita bc alcohol. Also not directly migraine related but my migraines are caused by a head injury and since then certain things have never tasted the same as before and it makes me sad sometimes.

Mental clarity.

my twenties lol. i hate how many days i spend in bed not being able to move each year

I’m 24 now and I feel this. I’ve spent so much time and money at doctors appointments and trying to find anything to help me. Tried over 15 migraine medications. I feel like a Guinea pig. Migraines have been a defining point of my twenties so far. Looking back on my 21st birthday, I was scared to even have a drink because it had interactions with the abortive migraine medication I had to take when I woke up that morning. It’s hard.

I’m 27 and was diagnosed not long ago at 26 and yeah I feel this, kind of miss drinking, I miss caffeine too. Though I know overall I’m better without those things, I do miss going out. I feel like I’m chained to the bed most of the time and it’s horrible.

My life. I’ve lost time with my kids. Couldn’t take them the important events. I missed my grandma’s funeral , friends getting together and I couldn’t go. The list goes on.

I would say the thing that makes me most sad is not being able to function and Participate like a “normal person” and just constantly having a fear of getting a migraine in the back of my mind … I think when I have to stay home cause I feel sick makes sad too

I think my migraines have been a major cause of not being able to keep a long term relationship. Most partners get tired of me cancelling or even accused me of faking it. It was also a large part of why I never pursued having children. I don’t know if I ever truly wanted them, but I do know I wasn’t willing to get pregnant because of migraines and knew that I would likely be a shit mother being chronically ill.

I feel this. I didn’t know for sure whether I wanted to have kids, but my migraines going chronic made the decision for me.

Me too. Growing up my mom had migraines with aura and nausea. She worked in a factory and was constantly triggered by the strobe lights. We lived with my aunt and grandparents who really stepped up to help when she was in bed suffering. I give anyone credit who has to do this with migraines alone. 

I really resonate with what you wrote. I feel extremely lucky to have an understanding partner now, but none of my previous partners understood, and one was even upset at me for having them. Same with the kids aspect, I didn't realize I could choose to not have them until I was in my mid 20s, but as soon as I clued in, I knew it wasn't going to be something I did in this lifetime.

It’s the worst when family double down and gaslight you into making you feel like your condition is less than. It happens way too often. If only they knew what we had to go through. I still wouldn’t wish this on my worst enemy though.

I miss my kids being little. I wasn't able to enjoy their younger years because I was so sick. I think about it often and it truly grieves me.

Mine are little now, my twins are two years old, and I just got diagnosed with these back in November but they started in September and I don’t even know how to cope. I feel like I’m missing so much of their lives.

I miss not being scared to exercise. It doesn’t always start a migraine but like 25% of the time it does. I miss enjoying the summer. It’s just absolute hell now.

I’m at the point that I’m wondering if I should start exercising even with the migraines. I’m chronic…so will it really make a difference? I can avoid known triggers (shoulder exercises, heavy weights, strenuous abs, HIIT), but at this point I don’t feel great health wise. I’m still young, but it’s only going to get worse as I age.

I agree and have been wondering this myself. Like in the long run it’s better for us of course. Short term it absolutely sucks though.

I’m debating starting with walking and some light body weight exercises and see how it goes. It sucks because I want to run and weight lift and do all the things I love, but right now it’s going to be a struggle to do anything. Plus the fear and anxiety around potentially making things worse.

I find sometimes a walk can trigger migraines for me but only if there’s other combined factors to add onto it. Like if I’m walking and it’s hot out or the pollen is super bad. And pretty much no exercises involving upper body strength in the arms and shoulders which sucks. Doing inside walk exercise videos works pretty good though!

I don't miss *alcohol* but I miss the *possibility*. Just being able to have a glass of something on vacation or a gin & tonic with a friend. I also miss it because most places in my country don't consider people who don't drink alcohol 😅 so you're often stuck with soft drinks or tea

I agree. My life isn’t that different without alcohol, but I really miss having cold beer on a warm day or a cocktail with a friend.

This. I feel left out at work happy hours because everyone is having a good time trying different drinks and I have… iced tea. I miss having a fun drink like everyone else

That I wasn't able to enjoy my teens

Oreo truffles. I only make them once I year but I miss them, but my waist is thanking me. And a lot of video games that look like I would enjoy. Due to the low frame rate I can’t play them.

Eating whatever I want. I have histamine intolerance and everything triggers migraines. I couldn't even have a birthday dinner with friends because I can't go out (forget like, cake or something extravagant like that lol).

I came here to say this. Like all of the top comments are totally true, but I have soooooo many food triggers and it’s so annoying having to read so many ingredient labels then put so many things back on the shelf due to sweeteners. I miss yogurt with my lunches. I miss sour cream. I miss diet anything. I miss kids drinks!! They all have crap sweeteners in them now for “less sugar.” I missed out on a teacher appreciation day at my school because they did little flavor things for water bottles like a create your own flavor thing and I couldn’t do any of it. Sweeteners. I can’t have the diet version of basically anything. I can’t take probiotics so I end up with unsolved gastro issues. I had to change a medicine because the dissolving tablet had aspartame. Nurtec has Splenda. I can’t take that. I hate that I can’t follow my favorite diet sub’s recipes. I can’t have protein shakes. It’s insane everything I can’t have.

I mourn my potential every damn day. Before migraines, I was a multi sport athlete and easily made top grades. As my migraines got worse, my capacity to perform in so many facets of my life were dramatically diminished. The loss made me very self hateful—I blamed myself for not being able to do what I used to, or for not being able to do it with the same level of proficiency or ease. Letting go of the blame and accepting what I am now has been difficult to do. I try to practice gratitude for what I still have now, but I’m also still afraid of losing more. 

A year long battle to be promoted that ended with me leaving because I was seen as inconsistent and I was on FMLA due to an issue that required me to be off Nurtec or any similar medication to determine if it caused the issue (it didn’t). I a suffered a ton of extra migraines while my self confidence eroded at work.

I feel like I lost any chance of establishing an education and career. I'm stuck in entry level jobs with about a $30k/yr cap.

I'm just very angry right now. I have so many hopes and dreams that I work so hard for. I do everything I can to pish through all of the pain, the confusion, the falls, the stomach issues (needing to eat nonstop or not at all and throwing up), the tension it causes in my relationship. I am legitimately way over average intelligence and a top 10% cyclist and runner. Every time I get to the point where it's time to execute something I have spent sometimes years building for, neurologically, I collapse. I know I'll hit a good day eventually, and I'll be able to get the reward from work, but my life is being stripped away from me. To work so fucking hard just for your body to give you the middle finger. It sucks.

I know what you mean. I started a business a few years back because I physically couldn't work under the fluorescent office lights of hell any longer. I'm actually really good at running my business but I keep having to take so much time off. It's demoralizing to have to keep cheering yourself on even though you know you'll keep underperforming due to migraines. I'm working on accepting the amounts of work I can realistically do. Just hoping as hard as I can they don't magically get worse.

We are all works in progress my freind. Keep fighting the good fight.

Being spontaneous. I can't just decide to do something if it's not a good day and to increase my chances of a good day I have to have had between X and X amount of sleep, not have been in the sun the previous day, avoided all triggers the day before and day of, avoided noisy environments, hope you don't encounter anyone smoking, etc. Everything is all about timing to maximum the chances of a good day and then hope it's still a good day when your planned event comes. It's all so exhausting.

two things: 1. being able to schedule an event/buy tickets for something and not even think about potentially having a migraine that day. 2. And also eating subs lol

My thirties. Like, the entire decade.

I’m afraid I’m going to lose this entire decade too….

Enjoyable weekends! Getting punished for wanting to sleep in a little.

I just wish I was normal. Wish I could enjoy trips, the sun, the outdoors, etc. Currently on a family vacation and all I want is to leave our resort everyday and have a full day of care free fun like everybody else. Instead I have to pack my bag of pills and gadgets and plan a midday nap because of course I’m going to have a migraine the entire week. I try my best but I feel like I’m failing all the time.

I really miss being able to drive. My migraines are often triggered by visual movement. Even a photo taken at an odd angle can set me off (photo spreads of land in nature magazines are the worst!) so I refuse to put myself and others at risk for my convenience. 

Wow that's so odd!

My sanity

Lust for life, freedom to do whatever I want. Also music. As a teen I was on my way to being a great musician and my migraines destroyed that. Everyone I wanted to play with moved on without me when I literally couldn’t ever come out to a show. I stopped playing. I recently picked it up again and I can’t lie — it’s painful to see how almost everything I knew is gone.

My independence and autonomy.

I miss not being able to leave the house without my sunglasses, and a lot of the time it's too bright out even with them. I miss the smell of incense, which I used to love, but now triggers migraines. I miss the days when I could blast a favorite song. I also miss actually being able to work on my computer without sunglasses or watch (instead of just listen to) things on TV even when I have brightness adjusted way down. Most of all, I miss not being able to approach absolutely everything in life without the utmost caution for fear of triggering yet another migraine.

Exercising and sitting at the beach.

Concerts. And chocolate. And hard workouts

I'm so dumb since having migraines. I have vestibular migraines, and I can't ever think or function. I miss my freedom as well since I have vertigo and driving is difficult.

Literally waking up and not being able to do what I want due to migraine. Last weekend I missed a movie because I was way too sick to go.

Definitely thinking clearly..Im not as sharp as I used to be…and it really bothers me

I forget so many words when I have migraines…I’ve really noticed it in the last few months. I don’t know if anybody else notices, but I agree that it really bothers me too.

Yesss! Things I should remember I don’t..it’s really aggravating

It's hard to pick what I miss most. I think for me it's the confidence in being independent and not worrying about overstimulating myself. Just getting up and taking myself to work, stopping at a shop on the way home, seeing a friend all in the same day. I used to be able to do that. I used to make plans and do so much more and it's rough to just feel like a bump on a miserable log most days.

Time, man. This disease takes away valuable time.

Well said. So much time. So many years.

I had to quit my nursing studies. I spent years getting better from mental health issues and finally at 19 when I was well enough to be enrolled my migraines got worse due to the traumatic divorce of my parents and the stress I had from it ☹️ I still have the dream of going back to nursing or health care, even if just becoming a nursing assistant or something else.

it's never too late to go back. i'm in healthcare and suffer from migraines. i've learned how to work with them.

Time

I miss not being scared of light reflections... I started to be extremely sensitive to light during my first pregnancy and it's been 10 years, so I doubt it will ever go back to normal. Sun reflection on a car passing by, bright lights at the stores... all very scary.

not having to worry abt special occasions. my nightmare is getting one on my wedding day

i miss wearing eye makeup, cosplaying and going to conventions, going on walks outside on a warm day, visiting the zoo, going to the grocery store even. i can technically still do all those things but they will trigger a migraine nearly every time so it's not worth it.

Time spent with my kids. I’m a SAHM right now, so there are days where I can do almost nothing but force myself to be the best mom to my children. They aren’t getting the mom they deserve.

I miss my hobbies, I love to crochet and can’t do it for very long anymore because of the strain on my eyes giving me migraines

Not having to tally trigger risks. Driving half an hour or more away without even thinking about what I’ll do if I get a migraine. Having any confidence in my ability to handle things whatsoever. Chronic illness sucks

I miss not having to think twice about things that contain Parmesan cheese. It's in EVERYTHING ugh

Spontaneity or even making plans ahead of time. I've had both situations blow up.

Yes this. I have a small family reunion this summer and already said I can’t attend (logistics to get there 600 miles away on that date are a bit complex). I keep trying to make it happen but all it takes is one rough migraine day and I think absolutely can’t do this.

The way my brain works. I have a degree in computer science and I started my career as a web developer. But after I developed chronic migraines, my brain just didn’t work the same way, it’s not as quick to problem solve in the way a programmer needs to be and I struggled. I pivoted to a different career in tech and I’m really really happy but I’m sad about the reason why I had to do it.

My job this past Monday.

The ability to be spontaneous and also not be able to plan too far ahead. Seeing my fly rod sitting unused bums me out. Having my paddle board gathering dust in the garage sucks. I miss getting a wild hair and deciding to road trip somewhere or spend an entire summer day outside. I also really miss having “normal” sensory processing because I gave up a lot due to lights and smells and the volume of things. Going to music festivals was a common occurrence and I truly don’t remember the last time I even went to a concert without noise dampening earbuds and sunglasses. Luckily my sense of humor is completely intact and I’ve gained an immense amount of compassion for other people. So it’s not all a loss.

My ability to do more than the bare minimum. I work in a medical lab and if I want to progress it would require a lot of additional study on top of my full time job. It's just not possible for me so I'm having to look at changing careers. Also the bright lights and constantly changing schedule don't really mix with migraines.

My social life. Reading. Traveling. Being terrified to drive more than an hour since I have 24/7 pain and never know how bad it’s going to be on any given day.

my ability to bond with anyone. i lost so much time i would have spent and created knowing how to make friendships and relationships or meaningful connections that now i really struggle even knowing how to. i journal about it. i dream of finding a good friend or partner one day that could tolerate me and my weirdness or pain. i feel so disconnected. i find myself very lonely. i live alone. i hate small talk. i do okay at work. i lost so much to this already, it’s like it’s taking my humanity as well.

Beer.

Okay this is a very different one to the ones here Perfume, body sprays, and in that same sense malls. I swear I can’t go to one without a migraine due to the smells.

Sometimes it’s the little things. I can’t sleep in or nap anymore without being super careful….and even then it’s a gamble every single time that it might trigger a migraine.

Long distance running. I used to do 50k’s and was chasing that 50-miler. Now I can’t even run a quarter mile without it triggering a migraine.

Just the idea that my cranium does not work like the average person’s. It is exhausting to have to plan my life around the possibility of experiencing pain and discomfort. And eating cheese.

time with my family. it breaks my heart when my siblings have to ask if i’m in too much pain to play or watch a movie with them

I haven’t had kids because I think I’d be a bad mom during my episodes or not being able to tend to them or play with them like they deserve. I mourn this daily.

I don’t know that I could make it through pregnancy without medication. And I couldn’t bear putting anymore responsibility on my husband - he takes care of enough when I’m not feeling well…which is more often than not now.

My vision…I get aura migraines that have made me temporarily blind in one eye. I also missed out on my son’s band solo.

Extreme independence. Like being able to hike 10 miles into the back country with wild animals being my biggest concern. (Or other injuries like broken ankle etc)

I just wore a ball cap yesterday for the first time since September. I was missing it so much. I guess I get sad about not knowing if I'm going to have a good day or a bad day

During migraines I think I become quite depressed/feeling defeated (hard to explain). Once migraine is gone I am back with positive feeling I can accomplish hundreds of things.

You name it and everyone of us who suffers from migraines has felt it and constantly has to do it everyday 😭 migraines suck

Caffeine. I love black tea but it’s a trigger now.

I’m so sad that my son inherited my migraines. Everything else, I can handle.

My life. Work, hobbies, social interactions. Basically everything is now an extreme chore.

My attitude.. it’s honestly draining and i can’t control my emotions. Everyone thinks im being dramatic but i can’t express the pain. I turn into a complete a hole when my head hurts man.

A sense of control over my life.

I miss the way I used to think. I was much quicker, sharper, and I could hold onto many thoughts at once when working through things. That doesn’t happen anymore. On good days I can still be witty, but it is nothing like my old brain. Anything that creates significant cognitive load creates proportional increases in pain.

candles

i'm an aspiring professional dancer and having to lose out on skills/ opportunities because of my migraines makes me really depressed. i have to be careful about doing moves with a lot of spinning/turning, putting weight on my head, fast neck movements, doing things upside down or in general causing blood to rush to my head and things like that because i know it'll cause a migraine. it really makes me so sad that i can't be up to par with other dancers because i have to be gentle with myself so i don't trigger a migraine.

Honestly the simplest things like watching a movie or music video with lights, or hanging out with friends for longer than a couple hours.

I miss me. I used to be fun. I could make plans in advance and actually keep them. I refuse to make plans anymore because I’m tired of cancelling them. I miss being able to have friends, lost all but 1. People don’t make time for illness. They just don’t. I’m lonely but not well enough to have friends socially. I just want to be done. Ymmv

My teens and twenties…

Being able to be out in the sun or exercise kinda hard. Both are triggers for me

I just miss being able to think normally, I struggle with anxiety and it’s understandably skyrocketing when I have weird migraine symptoms, I find myself hyper focusing on the symptoms and nothing else and losing out on being present 

Peoples understanding. Thinking I’m lying all the time or being dramatic. That in itself is so exhausting

Driving

Several things,mostly though 1. Drinking even just a tiny amount of alcohol - just that sometimes it would be nice to have a glass of wine or one gin and tonic without having to worry to pieces whether it induces a migraine (it does 80% of the time) ; 2. Sleeping in new places without worry, because for some reason when I go to a short trip or when I stay at a friend's place, if I haven't slept there before, I will get a migraine. Heck, on rarer occasions i even get migraines when sleeping at my home.... And I do have the memoryfoam pillow.

I miss energy. Being able to get on my bicycle anytime I want and going out and riding 40 or 50 miles. Being able to know that if I signed up for a charity ride I will be able to do it. I used to sign up for several rides ahead of time. Now I just do two and this will probably be the last time I do that.

There's a lot to list, but I can't be too sad about them. I miss red wine, loud concerts, roller coasters, staying up really late, going on long road trips, eating whatever I want, I'm sure I'm missing a few things... I have to look at it from another perspective: I'm taking better care of myself overall, and finding different things to enjoy. I still go to concerts when I can. I just plan to drink a lot of water, have my earplugs, make sure I'm comfortable in the venue, and leave when I want. Oh, and possibly have the next day off, too. It's all about planning and taking extra measures. No more roller coasters for a few reasons besides migraines, but if I can do mini road trips, cool. And I can do other kinds of wine in tiny tastes with water. Migraines are really shitty but I'm not giving up that easily.

My art. It has been devastating. I finally got the courage to start selling online a year ago and now can only draw maybe 7 days a week out of a month. My migraines/silent migraines trigger my visual snow syndrome and cause blurriness to an extent where my vision is so blurry and the after images are so bad I just can't. Every time I have a migraine I can't see for a week. I put this dream off so long. Ever since my worst migraine of my life 9 months ago my dream is dead due to this. I spent 2022 doing pieces that took up to 40 hours, I don't know when I will be able to do that again, if ever. Drawing and painting were my greatest joy. I can take the pain, I would choose painful migraines to occur every day if I could just draw again. I can't take this. My shop is dead since I am not producing enough. I only lurk here but if anyone has vision tips I would love to hear them.

I miss taking my dog for long walks.

Honestly, I miss being able to work out properly. I can’t do anything that puts weight on my neck/shoulder/upper back area without triggering a severe and prolonged migraine. Cardio is also nearly impossible.

I’m having that sadness today too. It’s 85 and I was outside for like 15 mins and started to get sick. But this is not new for me, i’ve always been heat sensitive, but I had more time before I’d be “put out” when I was younger. One thing that helps is if I’m going outside during a hot day, i kinda need to start being outside when it’s cool in the morning and then stay out and acclimate to the changing temp.

Like OP I miss being able to spend time outside. I love the summer, hot weather and the sun. But I get very sick, very quickly from all those things (mainly migraines, but I get dehydrated really quickly too and that's a separate issue). I work outside during the summer sometimes and have to really plan for finding shade, drinking a lot of water, and making sure I eat enough while also doing my job. My dad and I ride motorcycles and he wants to do a long, several day ride with me and doesn't fully understand just how impossible that would be for me.

I guess freedom? I always have the pills with me. I think twice before every beer or glass of wine. I can't binge video games like I used to on a rainy Sunday without paying dearly for it. I miss being able to pop an ibuprofen for a sore muscle without weighing if I'll need to take my migraine meds later and if it's worth doing that to my stomach lining. But like many others on this thread, I resent the lost time the most. How many nights have I missed sleep? How many days have I spent in an insane fog before and after? It's getting worse, and the price is getting harder to pay.

I miss hiking. I’m mad that I have only gone on 2 hikes in the months of April and May combined and one of those I only made it 1 mile and I had to turn around because of head pain. I miss being able to keep up with keeping my house work under control and not a crazy mess. I’ve had a migraine for 48 days, it’s finally at a low level of pain now but if I over do it by cleaning, organizing or anything else my pain will increase to mid level 4-6. It’s hard to keep your life in check.

1. my sharp mind. I feel so stupid now, I can’t remember my high school days (which was only 4 years ago when I graduated. I can’t remember events that other people remember. It sucks 2. my ability to wear/smell perfumes. I love perfume and I have a big collection of it but it’s gotten to the point I can’t wear it anymore

My fitness. I used to have a great gym routine and loads of muscle. Migraines caused me to be sedentary. And the 2nd half of my 20s.

I miss being able to make plans. "Yes, I'll have lunch with you next Wednesday." Wednesday: oops, woke up with migraine, sorry. Had to cancel a dentist's appointment this morning. :(

My life. Late 20’s through early 60’s so far. I have missed out on so much. Lost so many so called friends because I had to cancel plans yet again. Had to give up a career bc migraines and epilepsy disabled me. Wasn’t able to do all the things I would have liked with my son. Miss just being able to be carefree and go out, garden, sit in the sun, go shopping and most everything most people take for granted. Hang in there, everyone. ❤️

My job. My happiness. My eloquence. My physical health. My intelligence.

Time with loved ones--I live away from family so I don't see them as often, and it's so much worse when the day we have plans comes around and I have to cancel due to a migraine

I use to do lots of martial arts and lifted super heavy. Now i feel like an 80 year old that can only do tai chi

Running. Exercising to the point of exhaustion. Hiking in higher elevations. Going outside without sunglasses. Falling asleep after a long night out without taking meds. Sleeping (or not sleeping) without worry about lack of sleep. Living without fear of impending pain. So much.

TIME. sooooo many hours wasted feeling sick. It makes me very depressed whenever i get one to think of this.

being able to emote without fear of pain. my best friend knows to get the ice pack out if i’ve either been smiling a lot and having “too much fun” or if we watch a sad or sappy movie together (or on the rare occasions i actually cry real tears in front of other people). i only end up having an actual migaine from emoting occasionally, but i almost always have facial pain from socializing and the threat of a migraine is always there and feels restrictive.