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30 Dirty Little Secrets About My Life with Migraine

30 Dirty Little Secrets About My Life with Migraine

I’ve done the “30 Things” meme several years in a row, so this year I’m changing things up. I won’t be following the traditional question format. Instead, I’d like to air a little “dirty migraine laundry.” I realize that by opening up, I’m putting a target on my back, inviting criticism of my personal weaknesses. I am choosing to do this so that each of you will take it easy on yourselves when you fail to do it all just right. None of us are perfect. We forget, make mistakes, and have days when we simply don’t care.

It’s okay to be human!

  1. Migraine is part of my identity and I don’t plan to change that.
  2. Even though Botox is working, I still get migraine attacks every week.
  3. A few times a year I get intractable migraine attacks that make me question my commitment to avoid the ER.
  4. Even after all these years, sometimes I don’t see an attack coming until it’s too late.
  5. During a bad round of attacks, I can go days without speaking to anyone.
  6. My toolkit is big enough to fill a large suitcase.
  7. Yet the only thing that really works consistently is Amerge.
  8. Sometimes I forget to take my daily medicines and supplements.
  9. Occasionally I delay taking abortive medicine even though I know I shouldn’t.
  10. When my TheraPearl ice pack broke, I emptied the contents into Ziploc bags and tossed the broken plastic cover.
  11. Sometimes the best relief comes from tying a scarf around my head as tightly as I can get it.
  12. I really struggle with adequate and consistent sleep.
  13. I’m hooked on Pepsi for life.
  14. Sometimes I eat chocolate when I’m nauseated because I know it won’t taste bad coming back up.
  15. I was relieved to learn that food triggers were not as strong as I thought they were.
  16. From time to time, I get depressed, have pity parties, and take out my frustrations on those I love.
  17. Unfair as it is, sometimes I expect my family to know when I’m having a migraine attack even if I don’t tell them.
  18. It makes me angry that loved ones still don’t keep their voices down when I’m having an attack.
  19. Although outwardly supportive, I’m convinced that certain family members think I’m faking or exaggerating symptoms.
  20. Sometimes I get frustrated when loved ones have migraine attacks that ruin my plans.
  21. Sometimes I worry that all my talk about migraine irritates people.
  22. Even around other people with migraine, I instinctively hide my own symptoms.
  23. After all these years, I still “sneak” my abortives in public as though they were something to be ashamed of.
  24. I still hesitate to ask other people to make accommodations for my triggers because I don’t want to inconvenience them.
  25. Even though I know we’re all on the same side, there are some advocates I just don’t like.
  26. I am jealous of and resent people with less stigmatized diseases.
  27. The phrase, “You don’t really have a migraine if…” pisses me off.
  28. Some days I want to chuck it all and take my chances with just Excedrin.
  29. Sometimes I take unnecessary risks just so I can feel “normal” for a day.
  30. I am secretly terrified that one day my currently successful treatment might fail and everything will come crashing down.

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

  • Sandy S
    4 weeks ago

    Hi, Thanks for this but the only reason anyone should give you flack is thinking you deserve flack lol. All these are perfectly normal . I eat even though I know I am going to throw it up 10 mins later as I can not stand the stomach acid. I get the one about family my dad has experienced migraine with pain sick once and sleep then fine after a good sleep as a child He is a non believer now as his went when he was 14 but experiences vertigo now which is quite usual for men . We are not well so nothing to be ashamed about at all . Fingers crossed for all of us

  • Ellen H
    4 weeks ago

    I don’t think I’m ready to share my secrets, but I have to say that # 14 cracked me up! Thanks. I needed that!

  • mimi
    4 weeks ago

    I loved that you shared all of your “numbers” – I especially loved number 16. I used to feel guilty with a pity party but now I just give myself permission to feel bad and curl up. I still get mad at my husband when he doesn’t understand. You said you can go days not talking to people when you have a bad migraine- I can go days afterwards too. I do not know if part of it is from recovering or waiting for it to come back or both!

  • Author Alexis K
    4 weeks ago

    I can relate to people, even loved ones, not understanding the pain we feel when under attack. You mentioned Excedrin, and I use that along with several other things in my arsenal as necessary. It works sometimes and other times require a triptan of sorts. I can’t tie a scarf around my head because even headbands bring on an attack. Good luck to you and hugs.

  • DinaMay
    4 weeks ago

    I recognize a lot of these, so thanks for sharing! But your number 14 is the best – you’re right, chocolate doesn’t taste bad coming back up. It cracked me up reading that. Ice cream was my go-to for a long time for exactly the same reason.

  • cindilou3
    2 years ago

    I want to scream “LIAR” when people say “Oh I Used to have those!!!” If they ever had a real migrai ne they’d probably fall over dead( lol) oh Just for a laugh I tell my husband all the time if he had my migraines he’d be a big sissy cry baby!!!

  • abbey1997
    2 years ago

    I’ve been getting migraines for 37 (since the age of 10) years so I think I have felt all of these things at one time or another. I think the worst thing is when people don’t understand that A migraine is so much more than “just a headache” and how much energy it takes away and don’t believe in the migraine “hangover”. This site really makes me feel like I’m not so alone

  • coni208
    2 years ago

    I have suffered from many of these… so glad, I’m not alone….
    I still don’t tell anyone I’m hurting… some can see it in my eyes, but I hide it…. when I get home, I’m silent and alone….. For me, steam is my friend, so I spend all day, in and out of the shower… thank goodness we have an electric hot water heater, so we never run out of hot water….
    My Daith Piercing has been a Godsend!! The pain isn’t nearly as bad… Since I got it done, in July 2017, I have taken my Maxalt maybe 5 times, but 1 Motrin usually does the trick! YAY!!!

  • icanseetheivy
    2 years ago

    I thought for years that I was just “sorry” and ” lazy” and held myself in a low esteem, because I did not know about pro-drome, Aura, Headache, and Post-drome. I’m actually A VERY HARD WORKER, and I strive for excellence in everything I do.…but learning about these phases of migraine released me from the lie that I’m worthless for those days when I have to lay around, I can’t clean, I can’t play with my children…….turns out.… migrainuers aren’t just being sorry.… we’re just sick. So I hope that helps clean up another “dirty little secret” about someone else’s migraines

  • Falcon6
    2 years ago

    Just about all of that oertains to me as well and I add:
    Sometimes I will go days without showering because.. I just can’t.

  • livinglife
    2 years ago

    I’ve been lucky enough to get disability but I still work part time, but not this week 3 full days, one extra long day & one little short day. THE PERFECT STORM for me. I had to go get a treatment at the hospital to face this. They give a IV & pump me full of 5 different meds to make my 2 week on and off migraine go away for just this week. What we do to make it through. Day 1 I felt like I took stupid pills, no pain, just no brain. I was so sleepy so my function level was at 2 maybe. Dealing with money at a bank not a great combo. So I completely understand “Dirty Little Secrets About Migraines” I know a lot of them since I’ve been getting migraines the last 18 years.

  • cstars523
    2 years ago

    I used to push through my migraines until my right eyelid would droop to almost closed and I couldn’t handle the pain anymore before heading home from work (usually about 4-5 hrs). That was from 2010-2015. Now the only indication I get is the drooping eyelid, nausea, light sensitivity and neck pain. I haven’t been able to tell my early warning signal yet, which stinks. This week I have dealt with 6 days of migraine pain. I haven’t decided if it’s ended or not. But for me what I wish people would realize:

    1. I don’t make this up.
    2. It isn’t fun staying in the dark for 4-6 hours trying to sleep.
    3 Yes, I eventually give up and play a video game because I need to feel normal.
    4. I don’t enjoy calling out of work, especially when I just start the job because it makes
    me feel worthless and depressed.
    5. It isn’t easy finding a job when you have been out of work for over a year dealing with getting treatment for these lifelong “companions”
    6. I will spoil myself if I can with pizza or something else delicious to eat whether I should or not 🙂

  • Bonnie Troop
    2 years ago

    I love what you have written! Turns out it’s very useful to know that chocolate tastes best when coming up, and I have to add chocolate ice cream is the best. I learned this from being bulemic in my twenties, as well as noticing it when throwing up from migraines. This useful bit of information turned out to be a lifesaver when my daughter underwent chemo treatment. At first she didn’t eat prior to chemo and had awful dry heaves. But then I suggested a chocolate milkshake be drank on the way to chemo and that way there would be something tasty coming up. It worked beautifully and was our ‘ritual’ for the years she was on chemo. Anyways, love your honesty, your humor, and all that you have written.

  • tygermystyc
    2 years ago

    I know exactly how you feel!

  • Loganbacon
    2 years ago

    Oh, so much this, especially #20, 21, 24, 27. And sometimes my migraines just don’t respond to triptans and I have to take tylenol 3 and these days if you need an opioid doctors treat you like a drug addict when I just need something to MAKE THE PAIN STOP.

  • Geordon
    2 years ago

    Oh, but number 19 rings so close to home for me. My wife has a history of occasional hormone-related migraine but I swear that sometimes she thinks I’m faking when I need to go lie down and crash to cope with mine, which are much more frequent than hers.

    The “funny” thing is that she also has fibromyalgia and our family has adapted to accommodate her limitations. Sometimes, I get the stink eye because I need to leave something before she is ready to, or that I can’t get up the courage to go because I KNOW that between the people (I have anxiety, as well), their smells (perfumes, deodorants, even shampoos!), or the lighting (floresent lights are the Devil incarnate), I just know that I’ll eventually have an attack and I just can’t face it.

    But, yeah, sometimes I do something that I know is an almost certain migraine because I just want to feel “normal” for a while.

  • Sandy S
    4 weeks ago

    I feel for you as I get the smell thing all the time and washing powders are getting stronger and stronger as people getting nose blind now . And the sweet vaping smells are very bad . Do you get things smelling different as well. Strawberries like manure ,citrus like cats wee which is really horrible as well. Hope we all get a cure or at least something that stops them soon

  • RobinfromCA
    2 years ago

    Fluorescent lighting should be banned from civilization. I could also kick the person who put those hideous bright headlights on cars!

  • gb4yqi
    2 years ago

    I’ve had migraines for over 30 years, I’m 61 years old now… They started out a few times a month… and slowly increased, until I have them daily….. sometimes several in a day. Thank goodness for Imitrex and excedrine.
    I’m afraid my constant use of these meds will damage my kidneys and liver…. but nothing else helps. I’ve spent THOUSANDS in out of pocket,,, test, MR and medsI etc.
    I’m sick of people saying, “You need to try this medication, treatment, herb etc… I KNOW IT WILL CURE YOU…
    My husband gets upset when he has heard me in my AGONY AND SUFFERING say ,” I think dying wouldn’t hurt so bad”..

  • Bonnie Troop
    2 years ago

    I also have breakthrough migraines 3-4 times a day and I also experience this day in and day out, and have for the last 38 years. I often think people do not believe me when I say I have had this going on for so many decades. So take heart, me too. I take an ergot based migraine medication (which can’t be mixed with triptans for 24 hours) and also vape cannabis (which took the vomiting away forever), take Aleve, and eat too much chocolate, and my liver and kidneys etc are all good. So don’t worry so much, do whatever you need to do for your pain and expression of it, and know that not everybody can handle other people’s pain, especially if they have not had a migraine nor the resultant depression from our type of relentless migraines. I do not know you but I love you!

  • John1381
    2 years ago

    Your article and every ones comments made me laugh, cry, feel validated, less sorry for myself and lifted my mood. Nice one.

  • Suzi
    2 years ago

    As I read this article many if them I thought “yup, me too”. Then got to others in the list and thought “oh thank God it’s not just me!”. Thank you for writing and posting this!

  • Suzi
    2 years ago

    As I read this article many if them I thought “yup, me too. Then got to others in the list and thought “of thank God it’s not just me!”. Thank you for writing and posting this!

  • DeannaLynn
    2 years ago

    I relate to so much of what all of you are saying.
    Most of the time I feel like no one understands what I am going through.
    My migraines start in the back of my head and most of the time they come on suddenly. I take a preventative medication that helps me sleep and minimizes migraine symptoms but does not prevent them. Imitrex seems to be the only medication that my insurance covers, thank goodness it works for the most part. I tried botox with no relief. After a year I stopped the injections. Now my doctor is trying nerve blockers in the base of my skull. Had a my first one a few days ago, we will see how it goes.
    I am worse on myself than anyone else. I will work through a migraine because I refuse to give in. Usually I am good for the first two days on the third and fourth days I usaully am to exhausted to do anything. That’s when I get frustrated with myself for not being able to handle it.
    My worst fear is that this is more than a migraine and the doctor’s are not seeing what else it could be.

  • gb4yqi
    2 years ago

    Ditto for me

  • toshia89
    2 years ago

    Spot on. Almost all of these I can say yes I agree 100%.

  • livinglife
    2 years ago

    I can relate to the list also. Another one should be, I feel stupid. I can’t spell basic words, I can’t remember things at work or home life. If one more person says, I told you that or it was in a e-mail. AAAhhhhh…..makes me crazy I’m doing the best I can people!
    The other thing is I’m on this really expensive meds. It’s a nasal spray Dihdroergotamine. Just curious if anyone has tried this. It’s $3600 for 8. I have a next to nothing co pay. It suppose to constrict the blood vessels. It does the trick almost right away. I just got it so I have to give it a better go to see how effective. I got it approve through my insurance because I went through a phase where nothing else worked.

    Another thing I’m curious if anyone can go to the infusion center at the hospital instead of the emergency room. They give me a cocktail of 5 different meds through a IV. It truly has been a life saving for me. I’m going this week & can post the meds. I would hope other hospitals offer this. Of course I need my neurologist to call it in. Good luck to all & God Bless!

  • Geordon
    2 years ago

    I can’t speak for the spray, but I have had an ergotamine injection once because of a 3-week long migraine. It helped within 20 minutes. I almost cried with relief.

    But that shot burned like hellfire when I moved my leg!

  • DozenRabidMongeese
    2 years ago

    #30! Yes. I am terrified that one day my preventative meds will stop working. I’m also scared that my insurance might stop covering the birth control that keeps me from getting hormone triggered migraines. Without something to keep my hormones balanced I get migraines every month no matter how much of my other meds I take.

  • icanseetheivy
    2 years ago

    What hormone therapy do you take? I tried progesterone with no positive results. …but I’m willing to try a different option for those hormonal migraines.

  • mammapeaches (Susan McManus)
    2 years ago

    I LOVE #16. Nothing like a good pity party!!

  • k_nelson
    2 years ago

    Oh my. How I can relate. What a good feeling to know that at least someone can feel my pain.

  • Teechur
    2 years ago

    OMG…what a great article! I can so relate. My brain pain is diagnosed as “Chronic Daily Migraine” for want of a better diagnosis. It started 5.5 years ago after I had a subarachnoid hemorrhage. Most days I’m around a level 4-5 on the pain scale, but weather gets me and I live in the PNW. My pain goes up when the weather changes. That’s my main trigger, with strong chemical smells and loud sounds being up there too.

    Here are some of mine…this all still feels new so sometimes I have a lot of self doubt about the entire thing.

    1. I deeply resent the life I have now, even though I am so lucky to be alive. I miss my old self and my old active life where I’d run 3-4 marathons a month.
    2. Sometimes the fact that I do stay fit and healthy becomes a burden because people push me to continue, but it wears me out. I try not to let it show, but I feel like I’m trying to prove I can still do it when really, I can’t.
    3. I don’t think Botox works very well for me, but I’m afraid to stop because what if it does and it gets worse?
    4. Sometimes I think about living like this every day for the rest of my life and wonder why I would even go on? I’m not, thankfully, suicidal, but I’ve gotten close to thinking about it at times when I’ve had bad 8 days 4 or 5 in a row.
    5. No pain killers or abortives work for my kind of pain so I just have to be in pain. I finally got up the guts to try medical marijuana 2.5 years ago or so (yes, I am that big of a nerd, I had to find a youtube video of a teenager demonstrating how to use a bong). It is the ONLY thing that helps at all and now I smoke or vape almost every night.
    6. Because of number 5 I would literally never move to a state that didn’t have legal weed. Who am I?
    7. I think my husband secretly judges me because of that. Neither of us drink nor do drugs…it’s just not who we are, but now I have to for my head.
    8. Even though I deal with this, I still keep myself healthy yet I have had two major health issues, and I’m now having another one. I am normally a very positive, almost Pollyanna type of girl. Right now I am feeling very bitter. The new health problem actually makes my migraines worse.
    9. Sometimes I worry my pain isn’t as bad as I think it is; that maybe I’m over-reacting. I only think this after-the-fact, though. Never during the bad head day.
    10. I’m a teacher and I love love love what I do, but it exhausts me to the point where three or four days a week I have to go straight home to bed. I feel like my job is killing me.
    11. But at the same time I’m afraid to apply for disability. I’m too young to retire. I do have LTD insurance because I got it after my SAH.
    12. If I take LTD it will impact our retirement so badly.. I feel like that would be so unfair to my husband.

  • TBI and still going
    2 years ago

    Yep we have all been there! Well stated! I have learned after 30plus migraine years to enjoy those occasional normal days especially with my kids! Even if it means I may be down for the next day! I also have seizures and a balance disorder so if I have a good day and do too much I am really dizzy! But we can’t stop living and having fun! Hang in there everyone and I hope we all have a migraine free or at least not a killer attack for this last weekend of summer!

  • gertface
    3 years ago

    I can relate to almost all of these. My biggest dirty little secret is that in public my husband supports me and lifts me up. In private he still tells me to just push through because it can’t be that bad, and he criticizes my use of medication.

  • TBI and still going
    2 years ago

    Hopefully over time he will understand. Their are articles and books for family members to read to understand it’s not a headache it’s a neurological disorder and it explains it I full detail. I gave one to my husband when we were engaged! Mine had become really debilitating at that time and no meds were working. After he watched my vomit for 48 hours straight and pass out from weakness and dehydration he realized that it wasn’t just a headache. I ended up in the ER because my mom thought I was having a seizure as well and she panicked. Look into those the are well written and useful. He is a fantastic husband and father and I am now disabled and unable to work because of the dizziness I can’t drive a lot anymore and he doesn’t resent it he is very supportive. My mom and sister also have migraines so my family completely understands.

  • DonnaFA moderator
    3 years ago

    Hi gertface! We’re happy that you’re here. It’s difficult when our families don’t understand. We want you to know that you’re not alone, we are always here to offer support, or just to listen. -All Best, Donna (Migraine.com team)

  • Annie6579
    3 years ago

    Yes! My list:
    1. I am always afraid that the next attack won’t stop and I will be permanently intractable so I live in fear of triggering the “beast.”

    2. But I still do stupid things like drink red wine and go to concerts because my quality of life is important, too.

    3. Sometimes I cancel plans just because I am very tired. Others don’t understand that, so I tell them I have a migraine when I don’t. Sometimes it’s just depression and sometimes it’s because I feel good that day and want to spend it doing something else because days that I feel good are so rare.

    4. I’m worried that my symptoms aren’t only migraine. My experience doesn’t fit in a box that others seem to, so I worry that I have another problem. I’m only in pain 2 or 3 days per month but have chronic silent migraine that presents with vestibular symptoms, fatigue, confusion and aphasia varying in intensity but always there.

    5. I’m afraid that people don’t take my symptoms seriously because it isn’t always pain. They don’t understand my symptoms.

    6. The thing that scares me the most is losing my cognitive ability and being in chronic aphasia. I had a 6 month time period where I couldn’t read.

    7. I’m often unsympathetic to others with “headaches,” whether I show it or not.

    8. I hide 90% of my symptoms. Unless it’s a very bad day or someone knows me well, no one knows of my condition or that I suffer all the time.

    9. I probably shouldn’t be driving most days as my right peripheral vision is bad and I naturally don’t move my head left to right very often as a compensation for dizziness. I got scared once because I couldn’t remember how to use my turn signal. I haven’t even told my dr this because I’m afraid of losing my license.

    10. I can’t contribute all of my weight gain to migraine meds and inability to exercise. Some of it, okay most of it, is from my desire to replace the pleasures and quality of life I have lost. I feel guilty for this and am insecure in my relationship.

  • pigeongirl
    3 years ago

    Annie, same here, #1,4,5,6,7,8,9, you’re not alone 🙂 mostly i don’t drive, rarely, because more days than not i have symptoms, though my pain isn’t that frequent, really bad dizzy and nausea and feeling out of sorts… and visual and auditory aura (prolonged) make me utterly unsafe! highway speeds can TRIGGER for me, and if i’m in a real state i kinda forget…

  • Joanna Bodner moderator
    3 years ago

    Wow…thanks so much for taking the time to share your touching and personal feelings regarding your life living with migraine. All of your points touch upon sentiments shared by SO many in our community! By revealing such personal pieces, you help to bring piece of mind to others knowing that they are not alone in this struggle. Regarding the symptoms which you indicate are worrisome, if these are new or worsening symptoms, be sure to discuss them with your doctor to rule out anything more serious.

    Thank you again for being so honest & especially for being part of our community. -Warmly, Joanna (Migraine.com Team)

  • Tammy Rome author
    3 years ago

    Thank you so much for sharing!

  • Purity Mason
    3 years ago

    I also, can identify with so many of these “dirty little secrets.”
    One of my most frustrating & shameful secrets is the sheer number of medications & supplements I take on a daily basis. When I travel – I have to use multiple gallon size storage bags to accommodate all of my daily pill bottles. I HATE taking pills & it’s not only disappointing but embarrassing having to take so many.

  • TBI and still going
    2 years ago

    Purty don’t feel embarrassed about ur meds! We all need a quality of life! We deserve to do what we need to do to accomplish that! I take a ton of meds as well! I wish I did t have to either but it makes me able to leave my dark quiet bedroom and watch my kids play sports and enjoy life! We all deserve that and some of us require a lot of pills to do accomplish it! Take them proudly and live life to its fullest!

  • T-Lee
    3 years ago

    I would only add one more dirty little secret about my life with migraine to your great list. That is when my family and friends, on a frequent and ongoing basis, try to get me to see other Doctors or headache specialists! What makes them think harping on me to see any other Doctors will fix me? Even when I have asked them to please STOP this, as I have tried every therapeutic treatment out there in the last 45 years and they just don’t work for me it doesn’t matter! Alright already…enough is enough!

  • Writermom
    3 years ago

    Tammy, I LOVE this post. I’m sure most of us share at least some of this “dirty laundry.” I know I do. Thanks for “putting it out there!”

  • WickedT
    3 years ago

    Your list is fantastic. Many of them hit home. For me, I get frustrated that my family is continually trying to “fix” me or annoyed when I am unable to attend a family function because of a migraine. I would never bail on Christmas by choice. My husband uses the phrase “you pushed through that” a lot when he knows I participated in something where I was in pain but put on a good face just so I, or we, could attend, after which I come home and crash for hours. I try to go to as much as possible, my husband will drive me just so I can attend things. When I do go to an event in pain I will often get criticized for not talking enough or looking “out of it”. Then #19 and #27 come in…and I just want to kill the world. They’re mad if I don’t come, they’re not happy with the me that does…there’s no winning. I’ve dealt with migraines for over 30 years (since I was 12) but it has been really bad since my 20’s. I haven’t been able to work for 13 years now. I wish I could make plans and be reliable. Know that I will feel good that day and be able to go. Instead, I plan and pray, arm myself with an arsenal of meds and hope that I don’t spoil everyone’s day. Finally – I hate all the meds that make you gain weight and the drs don’t tell you in advance that this is a side effect. Thank you for your list…it was honest, especially #29..I think we all want to be #29.

  • nosirrah
    3 years ago

    I love this list and can relate to most of them. I have to add one though. It may be because I also have fibromyalgia, but I go through phases with my migraine and fibro flares where I can’t talk. In some cases words are in my head and I can’t get them out. In other cases, I start talking and suddenly the word I was going to say is no longer there and I can’t think of anything. So I sound like a complete idiot because I’m searching for words. I want to wear a placard that says “I have migraines and fibromyalgia that sometimes causes Aphasia, which means I have trouble speaking. Please be patient with me.” And the worst part of all of this… I’m a technical writer by trade. The hours I have wasted at work because I cannot remember the word that was just in my head.

  • Writermom
    3 years ago

    I hate it that when I’m looking for a specific word, it often won’t come until much later. Drives me nuts!

  • Kendra143
    3 years ago

    I have that too. Glad I am not the only one!

  • Tammy Rome author
    3 years ago

    Good one! I do that, too. My aphasia is only verbal though. So can still communicate in writing.

  • vanessafarias
    3 years ago

    when I say I missed work because of a migraine, someone says “oh, I had one of those once.” Oh, I wonder what it would be like to have one once.

  • vanessafarias
    3 years ago

    I like #7 but I’m amazed how many times medical “professionals” look at me like “what’s that?!” I love Amerge, but gave it up for Imitrex because my insurance would prefer to pay for 3 days of one pill than a pill that lasts 3 days.

  • Tammy Rome author
    3 years ago

    You might want to double check that now. Until just a few months ago, my insurance wouldn’t pay for it either. I was able to find a discount coupon through GoodRx.com for just $50 for 9 pills. Then last month my insurance covered it at just a $15 co-pay. I just had it refilled a few days ago and paid only $7.50…all generic, of course.

  • Charlotte Best
    3 years ago

    Don’t beat yourself up. If others don’t understand, that is their problem, not yours. This all sounds very familiar to me, and I’ll add a few “dirty secrets” of my own:
    •I hoard my pain medication.
    •If there were a tornado, I would grab my pain
    medication before I would grab my grandchildren’s
    pictures.
    •When I get a craving for a banana, I eat one knowing
    full well I might get a migraine. But I’ve been
    lucky and avoided a migraine by experimenting with
    bananas that are somewhat green.

    Thanks for your courage to admit your secrets. It helps.

  • Ter-i
    3 years ago

    Im pill hoarder too. Sometimes i indulge in catastrophic fantasies of being somewhere in wilderness, or vacation that all of a sudden took to long, or post-apocalyptic world, deserted island without medication…i would be an easy pray.
    Green bannanas less harmful? I try those!

  • Kendra143
    3 years ago

    I hoard my pain melds too. Insurance only allows 9 pills a month and I worry about running out… The pharmacy can sell me more at cost and I once had loud words with a pharmacist at the hospital I work at over thus. It ended up with him insisting I call my insurer and me stating loud line” it’s migraine medicine for god’s sake , not narcotics!!! I’m not asking for OxyContin or heroin!!” Not a pretty scene.

  • nosirrah
    3 years ago

    I also hoard my pain meds and typically don’t take it when I should because I’m scared the pain will be worse another day and I won’t have any meds to take. I once mentioned hoarding pain meds to a pain management dr. and she told me that that’s how accidental overdosing happens. WTF? I just rolled my eyes and never went back to her.

  • vickimarie
    3 years ago

    Sounds normal to me. xovm

  • Lgvx9900env
    3 years ago

    A lot of what you wrote I deal with the same thing too. I have a load of laundry I will share. I don’t consider it dirty. It’s the truth about what we go through. And why do we have to hide? Every one should be aware of our illness and what can make it worse. I highly doubt that the people with allergies feel ashamed of what causes chaos for them so why should we be. Here is a peek into my laundry.

    1. I have never had neck surgery but I wear a neck brace when my migraines cause my neck to hurt really bad.

    2. I get highly upset when people that have no idea what I am going through treat me like I am being a wimp.

    3. I get highly up set when people think I am being lazy because I am a prisoner in my room.

    4. I don’t like the idea that I may be stuck with migraines the rest of my life and on meds for it.

    5. I don’t like it when doctors want to take my meds from me. (EX) my pain killers. I have tried all the preventative meds and none work. So I rely on the meds that stop them. Maxalt, Promethazine, Norco 10-325, Cyclobenzaprin have always worked and so far the only thing that dose work for me.

    6. I hate it when people say it’s just a headache.

    7. I don’t like not being able to live a “normal” life.

    8. I am depressed a lot.

    9. I miss out on a lot of family time.

    10. I feel worthless when I have a migraine attack.

    That’s some of my laundry.

  • pigeongirl
    3 years ago

    other than 1, and 8, and sorta 5 (different meds for me) i’m with ya. no i don’t take ‘too many pills’ i take just what i need to, when i have to! i miss out. people don’t understand, it’s worst when they say ‘ i know what it’s like trying to ____ sick’ and i’m like NO, you Don’t, because you ____ and i can NOT! you’re not alone! i think the only reason i don’t get depressed is i’ve had attacks since childhood and becoming chronic came on slowly for me…. and while i resent not being more able more often and ‘half living’ i really appreciate what i do have, a lot, and feel fortunate that we have hot running water, toilets, and food, being ‘under attack’ is something i just got used to! frankly- we are allowed. we didn’t choose this!

  • Catbalou
    3 years ago

    I would love to go to a pot luck and be able to eat something besides the dessert. Seems like everyone cooks with soups that have MSG in them. I can’t have sulfites, nitrites, raw onions, chocolate, peanut butter, etc. Eating at a restarant is a chore as well.

  • Macbeck
    3 years ago

    I LOVE you list!!

  • rjboyle
    3 years ago

    I loved your 30 dirty secrets. I can relate to almost everyone of them. What gets me is when you go to her headache specialist and they are as baffled as you are as to why you have migraines and say “well, OK, see you in 3 months.” As you pay for the visit, I cannot help but to get the feeling that “was a waste of time” and that my life is going to be run/controlled by my migraines. I wish someone/something would help.

  • Kendra143
    3 years ago

    No kidding – I love my neurologist but hate that she reads my diary and says huh, well keep it up, maybe something will stick out next time besides the weather, try to get more sleep, reduce stress, blah blah blah. See you in three months. Good job!

  • nicolamady
    3 years ago

    Can totally relate to the dirty 30 list Tammy! I’ve been looking into Botox treatments recently but noticed you said that you still get migraines even having this treatment? Can I ask whereabouts you get the injections and would you recommend them?

  • Tammy Rome author
    3 years ago

    Yes, I still get migraine attacks…but…I get 5-8 a month instead of 15-20. That’s a huge improvement, so it’s worth it. In fact, it’s the best result I’ve ever had from any preventive…and the fewest side effects, too. Make that NO side effects.

    My doctor was trained by Allergan, so I get the full Botox for Chronic Migraine protocol of 31 injections. Here’s a few articles that tell my story…

    https://migraine.com/blog/from-skeptic-to-true-believer/
    https://migraine.com/blog/10-tips-for-getting-the-most-from-botox/

    I realize that Botox does not work for everyone. However, if you’ve tried several preventives in each class of medicine and nothing is really making a dent, it might be an option worth discussing with your doctor. My headache specialist actually sent me to a different doctor to get Botox because he wanted me to get the treatment from someone who was an expert and did a lot of the procedures. Talk about complete lack of ego! 🙂 So now I have TWO headache doctors.

  • Macbeck
    3 years ago

    I actually got my latest Botox injections today. The last round didn’t last quite as long as usual, but then I’m also dealing with a shoulder injury, so I’m pretty sure that played into part of it. The location is basically all over the head and depends somewhat on the individual practitioner (my current neurologist uses a slightly different “pattern” if you will, from my last neuro). I do not enjoy the actual injection process but they definitely relieve the pain of migraine for me. They do not help my ocular of vestibular migraines, but it’s amazing how much easier it is to deal with them when you’re not in severe pain.

  • Jani8
    3 years ago

    I laughed out loud when I read number 14! I’ve done that before! And a lot of the other ones.
    I have felt in the past that people (including my Dad) didn’t take me seriously when I said how much pain I was in. If you haven’t had a migraine, you can’t really understand it.

    My least favorite comment is, “But you look good.”
    Grrr…

    I can relate to a lot of your comments. Thanks for sharing!

  • TBI and still going
    2 years ago

    Purty don’t feel embarrassed about ur meds! We all need a quality of life! We deserve to do what we need to do to accomplish that! I take a ton of meds as well! I wish I did t have to either but it makes me able to leave my dark quiet bedroom and watch my kids play sports and enjoy life! We all deserve that and some of us require a lot of pills to do accomplish it! Take them proudly and live life to its fullest!I am glad Botox worked for some of u! Did nothing for me so after three rounds and the last putting me down for 10 days requiring my neurologist to call in 4 different blocker meds to break my migraine cycle I stopped Botox. He said it didn’t cause my migraine but it occur immediately after the 38 injections and was so bad I almost had my husband take me to the ER. I haven’t gone to the ER since 1998 because of how they treat migrainers like we are crazy they actually asked if I was hearing voices in my head! Wtf? And like we are drug seekers! I have suffers for 30 plus years since I was a child and I have to feel like I am dying to even consider the ER. I now have two injectable meds and if they don’t work my neurologist calls in meds!

  • Therese
    3 years ago

    Thank you so much, Tammy! I think we can all relate to at least parts of your list. I love that you are always willing to open yourself to criticism, if it means helping others. You’re very brave and a true champion for other migraine sufferers!

  • Tammy Rome author
    3 years ago

    Thank you. I must admit that this article almost never left my computer. It WAS risky. I’m just grateful that it is resonating with so many of you.

  • SamanthaAnn
    3 years ago

    I think the biggest things that would be on my list would be: 1. The fact that my bf is very religious and is constantly trying to get me to use prayer as my “secret weapon”. 2. He also thinks that talking about migraine will somehow cause an attack so he will try to change the subject if it comes up. So frustrating!

  • Tammy Rome author
    3 years ago

    Is he willing to be educated? You might find this post helpful in communicating with him. https://migraine.com/blog/its-mine-and-i-will-talk-about-it-if-i-want-to/

  • akilman
    3 years ago

    I feel like you have granted me forgiveness for doing all these things too. Thank you.

  • Tammy Rome author
    3 years ago

    There is nothing to forgive!

  • Gypsynurse
    3 years ago

    That’s it, the crux, you get me without knowing me. You wrote 99% of me. I know my family means we’ll but….so getting out of bed, doing am ablutions and just be are goals. Migraine may define me but I choose.

  • bluebird
    3 years ago

    I just saw a medscape presentation for physicians who care enough to learn- the third in a series on treatment of migraine. Altho it was useful and did include chronic migraine in the discussion, the expert referred to migraine as “above the neck”. I am increasingly wanting physicians to know that migraine is a disease that affects the body as a whole and that there are many without head pain who continue to suffer from a genetic disease that has many other important symptoms beyond inquiry about level of head pain.

    My secret is I live in a sensitized body with a sensitized neuro-endocrine internal environment and I get tired of responding to the weather.

  • bluebird
    3 years ago

    Thank you for your response Tammy. I am fortunate to have have known many of the experts in the field. I have had the privilege of receiving assessment and care from brilliant and committed physicians, some now deceased or retired, who have through their personal commitment managed to train other caring professionals who now are carrying the ball. That is why the Medscape training video upset me so. This sets up health care professionals to continue along a path of unfortunate assumptions or emphasis…and that can hurt people in their care. Maybe you folks can send a message to them?

  • Tammy Rome author
    3 years ago

    I’ve heard that “above the neck” comment from doctors before, too. Fortunately, the headache experts who are leading the charge to understand migraine, find better treatments, discover the cause, and hopefully, one day, a cure totally get that it is a whole-body experience. I wish that each of you could meet one of these brilliant, caring doctors at least once in your life. We do have champions who are fighting for us!

  • Holly H.
    3 years ago

    Human-ness happens! Thanks for sharing, Tammy.
    Since I have become over-reactive to everything including all preventatives and interruptives, a Coke and Tylenol is my only choice for any lessening of pain. So I’m with you on #13.
    And #29 for sure, as sometimes helping my heart by adding just a little bit of life to my life… shoot, I can live on the joy of that for days.

  • Maureen
    3 years ago

    When I’m on a bad jag (days on end, not just one bad day), I sometimes eat bananas, which I love and are a big trigger, because avoiding them doesn’t seem to have made any difference anyway. So I just take advantage of the bad day to eat the yummy food. Better luck tomorrow (or next week)on feeling better.

  • MaddieG
    3 years ago

    Maureen: everyone always thinks I’m crazy when I say bananas give me migraines! I miss them so much! I do the same thing, when I have a really horrible migraine, I might as well get some joy out of it!

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