Images of an Invisible Illness

Images of an Invisible Illness

Migraines are often referred to as an Invisible Illness. We Migraineurs master the art of hiding our pain to others. For those who know us well, one look at our face or eyes may be a sign that we are hurting. Some of us experience symptoms similar to having a stroke, which gives “Normals” a clue that something is physically wrong. But a large majority of us suffer in silence without anyone realizing the unimaginable pain ravaging our brains. Unless you’ve been one of the 36 million Americans who live with Migraines, it can be difficult to understand how debilitating this disease can be.

I began having Migraines at age 5, but they were episodic, averaging 2-10 attacks in a year’s time. In early 2011, at age 29, the Migraines suddenly progressed into an almost daily occurrence. For two years, I struggled to find a cure while trying my best to continue working full-time. In March of 2013, under my Headache Specialist’s advisement, I stopped working to focus on improving my Chronic Migraines. I had hoped that during this period of short-term disability, I would be able to regain control of my Headaches. I soon realized it’s not that easy. I have now been away from work for 15 months and recently my doctor and I decided that I will not be returning to my job as a banker any time soon.

When I stopped working, I began taking pictures in the hopes of chronicling my progress as I tried new treatments and therapies. I wanted to capture images that depict what it’s like to deal with the pain. My hope is to give people who don’t have Migraines a better understanding of life with Migraines.

Everyone’s journey in managing their Migraines is different. This is my diary, my photo book, and my documentary of my quest to living a more fulfilled life while managing Chronic Migraines. Hopefully it will also serve as a form of education to those who don’t suffer and provide comfort to those who do, knowing you are not alone.

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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 (45)
  • INKEDKATLADY
    3 years ago

    Katie, your stories are always so informative and you are truly a warrior. I believe that we all are. Thank you for what you do and for sharing with us. You are truly encouraging and while I wouldn’t wish this on anyone (okay, honestly I think everyone should have a major migraine just once to truly understand)it is encouraging to know we are not alone. Keep up the good fight sister! Best wishes.

  • Katie M. Golden moderator author
    3 years ago

    I really appreciate the words of encouragement.
    And I’m with you. I wish everyone had at least one migraine in their life. I actually just wrote an article on that. It should get posted soon.
    Take care!
    -Katie

  • disko
    3 years ago

    Katie,

    I admire the tenacity you display in not accepting with any finality the life disconnects brought on by Migraine. My experience of Migraine has been as a caregiver. Fortunately for me, your world was visited upon me a single time of 3 days in length. At the time I didn’t know what it was except it was the headache to end all headaches. It required an ER visit. The Docs didn’t know what to do, or were scared I was drugging it, but the net result was they literally did nothing even when I came back two days later. But, the Migraine passed, never to return. How lucky am I? Unimaginably so I reckon. My son has made amazing progress in managing his Migraines to the extent he is working and going to college now. He gets an attack from time to time, uses a CBD cannabinoid as his sole abortive and uses regular medical grade marijuana to keep his stress levels down in between attacks. For him, the combination works in tandem with his personal growth. No, he’s not headache free. That is not the point. The point is he doesn’t get 1-3 two day events incl pro and postdrome, every week anymore. I realize he is lucky to have found a degree of relief and I am so thankful. To those who haven’t unlocked their secret yet, but keep going despite the setbacks, know that you are an inspiration to those that are listening. In fact, you are an inspiration to many who are far away. Katie, your art expression rang ALL my bells. Your insights into the disability process and the unending quest to help yourself are models to follow. You are not alone. Thanks so much for sharing.

    Best of Luck.

  • Bruna Kleemann
    3 years ago

    Dear Katie,
    It was kind of relieving to read your story and see that there are other people suffering from the same invisible illness than me. I do not suffer as much as you do but I understand what it is to be forced to quit the office because the pain is too intense and see in the faces of your colleagues that doubtful look, as if you were simply overreacting.

    I don’t remember when the pains started. My mother says that it was when I was 11 of so. All I know is that the pain has been following me for a long time and when I see pictures from the past I say to myself “oh, I remember that moment! I had a ’7 points’ migraine that day” (I also use the 10 points scale for my pain). I try to avoid complaining as I have the feeling that people don’t believe me anymore! But those who know me well can see it immediately when I’m in pain (the melty face).

    After trying numerous ineffective treatments (acupuncture, anti-depressive, physiotherapy, yoga, dietary rehabilitation, …), I met a headache specialist (6 months ago), who diagnosed a chronical migraine. When I had my first appointment with her, I was lost and feeling totally addicted to anti-inflammatory, paracetamol and anti-vomiting medicine (I used to take all of them at the same time). I had tried several triptans but all of them had terrible secondary effects so I stop using them. The doctor said that the over medication could be one of the causes for my headaches. She prescribed a treatment with beta blockers, which I took for 5 months, and proposed a new triptan (Almogran) and a new anti-inflammatory, that I was supposed to take only if the triptan wasn’t enough. I also started using peppermint oil and I must say that I was surprised with its efficiency, even if it doesn’t completely cut the pain, it helps to make it more supportable.

    After 5 months of treatment with the beta blocker, we decided to stop it, as I was feeling breathless and the pain was still there. The treatment was not completely useless, it enabled me to find out that must of my crisis were linked to my hormonal cycle. The doctor also changed the triptan, as 1 Almogran was rarely enough to cut a crisis. I started using Maxalt but as for the moment I only took it before going to bed, I don’t know what are the (or if there is any) side effects of this one. She also gave me a natural treatment with Vitex (for ladies that have a hard time with their period) which I started 2 weeks ago. The doctor also told me about hypnosis and at this point, I am ready to try anything. I will let you know if it works for me 🙂

    Today is the second day of my period and I had a 3-4 migrane when I started writing this post and at this very moment I’m at 5-6. I know it will get worst as the day goes by and that there is nothing I can do but hang on and hope that the new triptan will not prevent me from working.

    I wish you and all the people who suffer from this invisible illness a lot of courage, as this is what makes us wake-up every day, even if we know that we are entering a war from the moment we go out of bed.

    Kindest regards,
    Bruna

  • 207bawk
    3 years ago

    I have to say I am inspired by your blog Katie. And have printed out your story to show people who don’t understand invisible illness. Im also a recent migraine sufferer. And cannot work until I am able to manage them. Thanks for your blog!

  • Eagle6205
    4 years ago

    Wow Katie I’m just now reading this, you shared some of your story with me about your work and how it affected your college but I didn’t get the full story about the amount treatments and struggles till I read this. I think this is really well put together. Your a Great Author you should definitely consider writing a book on this.

    I’m very stubborn when it comes to medicine and I wont take anything unless it is Absolutely Necessary. So hats off to you for enduring the Gauntlet of medicines and I am happy to hear you did find at least a temporary Solution. Your “Melty Face” though not funny what you were enduring made me laugh that sounds like a funny term. Good way to put a positive spin on such a negative experience.

  • Stace31601
    4 years ago

    I would like to talk to someone about being on disability and when you thought it was time for it.

  • Obitsfan
    4 years ago

    Beautifully written. I had a migraine for 2 1/2 years. We tried everything including ketamine. Now things are better. I’m on daily meds, break through, Botox, emergency., but I’m human again most of the time. At my worst I hat lost 40 pounds, was hospitalized 5 times, spent time in the ICU. I did pick up a good idea from you and will now ask to have my Botox sooner as I do notice that by week 10 I’m waking up with daily migraines. I’ll also discuss with my neurologist having my DHE available at home to avoid ER visits. Thanks for the info, hope you have more good days then bad days…..and treat yourself to a message. Sometimes it helps.

  • Jenni
    4 years ago

    Finally found somebody else who has the salt craving! (A friend of mine craves donuts.) I also get an intense craving for lemon-lime Gatorade. I would eat nothing but potato chips and Gatorade for the rest of my life if the migraines would just STOP.

  • cancan
    4 years ago

    Hi Katie….
    I enjoyed your writing and youthful smarts….keep up the good work.

    After 72 years of suffering….I wish I was younger and able to start over with the new and different treatments. But being 75 plus and deteriorating health, I can no longer continue to find new doctors who have found so many different options there is now, I have been to many over the years, probably 50 or more. In order to have a life, I had to stick with my 2 older doctors who manage to give me the codeine (Fioricet) I have been taking since I was 29 years old. I would give anything in this world to not have to take this abortive med, but the responsibilities I had, could not be pushed out of my life, employment, aging relatives to give care to, children to raise, a husband to help keep going in his profession….I drained all the money I could, seeking help from so many doctors and hospitals. Nothing helped and now we have had 5 generations of migraines in my family… one granddaughter suffers terribly also…along with my daughter. We all take the same med, codeine…to have a decent productive life. I learned early on the codeine must be followed as dosed, so there would not be dependency. We try our best…but still end up in our dark room many times with cold wash cloths on our foreheads. But I did finally find help with Lipoderm patches…through a friend from Vietnam. That is all they use for migraines. They are very expensive, I think about $300 for 30 patches in the US, but I cut them to fit my pain spots, face, neck, back, hips, legs, spine, etc…as I get pain in so many areas brought on by the migraines…..but I have found these patches to be valuable when at home and having to apply them to the face. If going out, I can apply them to other parts of the body if needed, if I’m able to leave my house! Between the codeine and the patches, I am getting through life In my late years but it has not been easy, especially at age 3 in 1942, by any means.
    Banging my head on anything hard confused the whole family, so my mother, dad and 8 year old brother (who I just lost at age 80, the only one left in my family who really understood my migraines, I miss him terribly) would rock me and sing to me, gently caressing my forehead that would finally put me to sleep! When I awoke, I would be free of the pain, and I was told later in life by my brother and mother, I would begin being normal again…..until the next episode. My mother and dad’s family said I was a spoiled child, that was my problem!! Oh WOW!!!!
    But my parents knew different! When at age 8 I was taken to a doctor who said I had a hereditary problem with the brain and spine. That was it! No help, just suffering…but the doctor told my mother, the rocking and singing was the best answer for now/then. And that continued until I no longer wanted to be rocked, I was a big girl now….but still vomiting and crying in pain. That was when the cold wash cloths began, and my mother and dad rubbing and soothing my body until I was a teenager. Then they would talk me though the pain, quietly, in a dark room, no noise, drinking soda and water to make me vomit, so then I could go to sleep for a couple of hours, waking to no pain and being “normal” again…until the next time. The method for help with the cold wash cloths and dark room continued until I was 28 years old, had my two babies (headaches during both births), my high school sweetheart I met at age 15 helping along my way with the painful headaches.
    Then they began to be called migraines!
    A newly medical intern moved in next door to us in 1969, my life saver! He also got migraines, took codeine in order to get through medical school…was my doctor for 40 years. He was wonderful. We both he and I, went to Neurologists, had so many experimental hopefully cures, to no avail.
    I was almost killed twice with overdoses of mixed narcotics…causing convulsions, then causing knee surgery due to “blowing out” my knee during the convulsions, almost sucumbing to a disc being caught in my throat, accidently during the knee surgery. A nurse had not been careful with the backing of a sticky heart monitor that I coughed up after getting home from the surgery.
    My 40 years of wonderful care for our family and myself, our doctor passed away from bone cancer in 2003. Now what to do??? So I went back hunting for help to so many pain and migraine specialists, so much $$$$$ again, to no avail, repeated from many years. Needles in the head, neck, spine…I could not take it any longer, so I suffer more. Then in 2006, I accidently, through a friend…found an older doctor, who still believed in limited codeine….and here I am.
    I know this is long…but I wanted to tell the younger generation how fortunate they are, to be able to seek different types of newly found help…which I know sometimes works, sometimes not…but it is worth a try. If financially you are able….I hope each one out there finds something that works for each of you. I keep encouraging my daughter and granddaughter to try to find different kinds of help, but one is like me…so many other physical problems, the other is not financially able, insurances are not like they used to be. What used to cost me $2.00 for 30 capsules of codeine (Fioricet) now costs $125.00 for 30. Sad. Keep hanging in, I do too. I still am cronic…daily migraines all my life, rarely a day goes by ever, pain free.
    I am now trying to help anyone with just living, I joined an organization to help young ones in their teens who have hard lives. I have always been a caregiver. I was approached recently by an unknown writer, to start writing books on personal subjects. If my eyes hold up, I am considering doing it, just to help anyone who might be going through my similar experiences in life…it has been a rough one, especially fighting pain. I know you all know what that is. Good luck and God Bless…and thanks again Katie for allowing me to expound on your site, I think we have written to each other previously!!!
    ❤️Love, Carolyn

  • alegalbutterfly
    3 years ago

    That is a beautiful story. You are a very blessed woman!

  • Vicki
    4 years ago

    As I am sure many others have commented, thank you for sharing your story, Katie! I can relate to all of this, but thankfully not to the extreme that you have. I definitively feel your pain. My latest challenge has been dealing with the loneliness while suffering at home. Ironically, I did not have many migraines during my chemotherapy treatments for breast cancer for the last year and a half. I was very aware of this and felt so thankful. Now they have come back. I have to figure out how to manage them while keeping my full time job. Good luck to you.

  • Sandy
    4 years ago

    thank you Katie for opening up to us. my migraine story is too similar to yours. we have all learned so much from your sharing. No wonder why i had initial hair loss and my hair was so frail and breaking off. no wonder why people look at me like I am starring at them or not smiling. they think i am not happy. all i have been able to tell them is “yes, i am happy just trying to concentrate” it is my Melty Face!!!

  • BBalla
    4 years ago

    Katie, you can’t believe how much I have learned from reading this article. I now know the reason for my hair loss – Topomax! Fortunately, I have so much hair that I didn’t really miss it but the drain sure felt the side effects! My doctor has recommended biofeedback and after reading your article I am calling right to give it a try. Just had my first set of Botox injections and fingers are crossed. Best of luck to you and thanks again!

  • alegalbutterfly
    3 years ago

    Oh no, please don’t say it is so. I have been on Topomax for three months now and my hair is very thin already. The last thing I need is for it to start falling out. Is it a given that it will start falling out or is there a way for me to treat it to fight against what the Topomax will be doing ?

  • Katie M. Golden moderator author
    4 years ago

    So glad this spurred you to try something new!

  • Kim Leonoudakis
    5 years ago

    Katie, it’s definitely worth going to a seminar or now I think they have web ones. I flew there a year and a half ago to go to a seminar. Keep us updated.

  • Kim Leonoudakis
    5 years ago

    Katie, this was the best post I have ever seen. Your story through the photos was exactly (almost exactly) my life from 1995 until 2013. My migraines started in my 30’s. I don’t need to explain my story because it’s sounds just like yours. July 18, 2013 I had a neurotransmitter implant. I’ve have had an 80% improvement in my daily chronic migraines. My implant is in my forehead and the back of my neck in the occipital nerves. Please check out the Reed Migraine Center in Dallas website. I finally got my life back. It’s the only thing that has helped me manage my daily migraines. I am so happy to be off all the drugs and other treatments. Please check it out. I wish everyone could have the results that I got from the implant.

  • Katie M. Golden moderator author
    5 years ago

    Kim,
    So glad your neurostimulator has helped you so much! That’s fantastic! I’ve watched some videos from Reed and they seem to be top notch!
    -Katie

  • Chris
    5 years ago

    I. Loved. This. Post. It was like reading about myself. Thank you for sharing.

  • Iloveschnauzers
    5 years ago

    Thank you, Katie, for sharing your story and images. No one else has ever described the “Melty Face” as a symptom to me. I thought I was crazy, or “not normal” even among other migraine sufferers. But now I know I’m not crazy, I’m not alone, and I am as normal as one with migraines can be. You have no idea how comforting it is to know.

  • katbalas
    5 years ago

    Thank you so much for sharing your stories. It does help to know others are dealing with the same situations, though I wish neither of us were dealing with it. I’ve had migraines since I was 17. It’s taken me 10 years to graduate college with a Bachelors degree. I did change my major 4 times, which caused some of the delay, but I also took years off because I couldn’t even get through reading and studying for classes. The severity of my migraines always vary but I usually have a minimum of 4-5 headache days a week. If my migraine is an 8 or less I may not even mention it since I feel like some people may just be tired of hearing me complain. I even feel guilty if I can’t do everything that I should due to my headaches. It is hard for anyone who has never experienced a migraine to understand just how debilitating they can be. I think your photos and stories can help educate them.
    Thanks again for sharing so much!

  • Rick
    5 years ago

    Hi Katie, Rick here again. As you read my letter/comment from yesterday you can see what my migraines tend to do to me. I can write something and re-read it several times and put all the words in the right order in the letter. Some people say that I have other problems, but I know I am worse with a migraine.

    Hope it was readable.

  • AmandaTaylor
    5 years ago

    I can relate to almost every part of this photo journey. I have struggled with migraines since I was really young too. Once I hit my twenties they went into overdrive. Right now I’m coming off a 4 day migraine and haven’t been able to even get out of bed.

    I’ve told my friends many times migraines is a hard illness. It’s hard for friends and family to understand. Plus most of the time I feel like I’m having to keep up an act so people don’t worry so much about how I’m really doing. Every day is a struggle but when I have a good one or two in a row I try to make sure I live my life and live it to the fullest.

    Thanks for sharing this article. It’s good to know there are others that understand the struggle.

  • Tim Autry
    5 years ago

    Hi Katie,
    Great story. I too started with migraines back when I was 5 years old (before I started grade school – 1965). It was until 1994 after seeing tons of military doctors (I was in the USAF until 1992) and a few civilian ENT doctors that I was sent to a neurologist that diagnosed me with episodic migraines and started a treat regiment. Soon around 2001 or so, they developed into chronic migraines. In 2010 I spent about 3 months out of work on disability (I am/was a computer programmer) when I was sent to a headache specialist. The migraines were controlled somewhat as they would not be as intense until September of 2013, where I had to work around the clock one weekend (Fri-Mon) without any sleep or rest to put in several upgrades to our system – of course the was good for business, but bad for me, I never really quite recovered and in mid November the headaches intensity rose to a constant 5-8 on a daily basis. I didn’t trust myself to drive due to the tunnel vision I have during an intense migraine, not to mention the numbness on the left side of my body – it could be just the face, or hand, or it could be a combination or all. At the time in November I had been experiencing insomnia since the weekend in September. My neurologist has sent me to sleep study that shows I need a CPAP machine, when I sleep on my back, but I don’t sleep on my back, either in the fetal position on my right side or my stomach – either way the mask will not seal. I tried the nose only mask, but since I breath mainly through my mouth when sleeping that didn’t work. Along about mid Feb this year, I could no longer function, couldn’t do my job (cognizant and intense logical thinking no longer exists), so I’ve been out on Short Term disability since. Other complications of stress included my mother having cancer/surgery, my mother-in-law being diagnosed with Alzheimer’s, my single daughter getting pregnant and having to give up the baby for adoption and finally my wife has been hospitalized on/off for several months. For me the world is crashing down all around me. I can hardly use a computer more than 15-20 minutes at a time, and then only a few times a day – a large departure from what is required for my work. I was also sent to a psychiatrist and now a therapist to help me deal with all that is happening around and to me, but the outlook looks bleak. The preventative meds interfere terrible with my intellectual part of the brain, and some have been changed, but some I have been on for decades and the damage has been done, and learning new things a really difficult. If it were not for the “WAZE” software on my smartphone, I would constantly be lost, trying to get to appointments for myself or wife.
    I am too the point where I don’t see much light at the end of the tunnel and should be contacted about long term disability from my employer within the next few weeks. It really hurts though, it feels wrong to take money for not working, it just doesn’t seem ethical to me. I know I paid the premiums all these years, but still. Next after that would be SSD/SSDI, again, it makes me feel bad. I continue to work with my neurologist and looking at me from day-to-day you wouldn’t know I have an almost constant 5-6 headache all the time unless I told you. Only my wife can look at me and see how much pain I’m in. When the headaches start upward from a six, it is definitely time for the recue meds and dark cool room – I mean no light whatsoever. I’ve got so many different meds for different stages of migraine that my wife says we have our own pharmacy, and still I have the pain almost constantly everyday. Physical exertion makes them worse, and I struggle to maintain the yard of our home as required by the home owner’s association. Well that is about it, I pray for the pharmaceutical companies to start researching for preventative meds (most of mine are off-label prescribed) for those that suffer from an “Invisible Illness”, such as migraines, mental and nervous system ailments.
    Thank you for your story.

  • Katie M. Golden moderator author
    5 years ago

    Tim,
    You have been through quite a lot, especially lately. I’m really sorry that you are out on Short term Disability. It was such a hard decision for me as well. The only thing I can tell you is to listen to your body. If you need to apply for Long Term, don’t hesitate. You only get one life and you should be as comfortable as you can be. And that’s why these programs exist.

    I was only 32 when I had went out on disability. This is never what I thought I’d be doing at this age. But I’m making the most of it. And with the income I receive, finances are not as much of a stress or burden that it could be. It’s hard to ask for help, but you deserve to focus on you and your health! Keep fighting, we’re all here for you!
    -Katie

  • April H
    5 years ago

    Hello Katie,
    I am new to the group.. As of March 2014. I too started my migraine
    intensity in 2011 and quickly Upgraded to chronic migraines.
    As I read your story in the newsletter, I was brought to tears..! Honestly,
    your story is my story..

    I never read that so clearly before even my husband agreed.  I’m starting
    disability process now. However, I’m still pondering on work situation.

    Thank you for sharing!

  • Rick
    5 years ago

    Congrats Katie on your success with your Migraines. I have been on Depakote for many years for a preventative for migraines and Naproxin for the pain reliever. If I had to pay for the depakote out of my pocket I would probably be homeless now. It used to be about $510 for a months supply of 150 caps. Lord only knows what it cost now.

    I have ordered some Ausanil(?) to try for my headaches. I hope that will me more relief with mine. I am retired now and sure if I can get disability for my migraines now or not.

    Good luck with you journey and much success with your migraines.

    Richard

  • Jayne Moline
    5 years ago

    My life with migraines is so much like yours. I felt like I was reading about myself and the pictures and descriptions were right on. I recently found a Chiropractor that made some big adjustments to my cervical vertabrae. He taught me about a pressure point that has been incredibly useful. It’s below the ball of your right foot. When you have a migraine starting up, it hurts like the dickens to touch, but by massaging it, you can stop or slow down a migraine. It has actually been very successful for me, but it really does hurt to do; a golf ball under your foot works great (Hint-I check that spot daily to see if I’m getting a migraine). Last week, I started acupuncture, and I am very hopeful. I also bought an Occipivot which is a hard wedge that presses into the pressure points at the base of my occipital lobe – the base of your skull. Although I am on at least as many meds as you are, plus supplements, I added in CoQ10. I am always on the search for more ideas.

  • April H
    5 years ago

    Jayne, I experience the nerve pain in my feet, hands, and arms at the start of an intense migraine as well. These last 3 years of daily pain have been horrible.

    Praying for you as well.

  • Staceymae
    5 years ago

    Thank you for sharing your story with me. I saw a bit of myself in your journey. What a great idea to chronicle the path you are on. I understand your willingness to try everything! Each new medication or treatment is a risk in itself, as you know. We never know how, or if, treatments will affect us, and if so, if it will be a positive experience or another waste of time. I’m glad you mentioned botox, it’s the only thing I haven’t tried, however, I am using a new migraine headband, recently approved in the USA by the FDA that is supposed to work in a similar way with electronic stimulation. I wish you the best as you search for peace in this difficult fight.
    Stacey Mae

  • kristisprague
    5 years ago

    Hi, Katie.
    Thank you so much for doing the work to create this awe-inspiring piece. It allows others to witness your journey and get a sense of how that journey might be for many of us.

    Your writing and photos brought tears to my eyes. The words with the images touched me deeply and also resonated as true to my own experience. I have tried many of the treatments that you have, even the less traditional avenues.

    I would love to share this with my family, and hope it is okay to do so. They struggle to understand elements of Daily Migraines (Chronic, Daily Intractible Migraines with Myalgia! : ) ) such as a strange and unpredictable sleep schedule. Lots of judgements are handed out regarding my sleep. Another topic you touched on, getting out and doing things, is beyond the grasp of many. I have, over the past 10 years with Migraines, slowly lost dear friends due to inactivity and canceling plans.

    And, like you, I am not about giving up on myself. You are so right that you deserve to enjoy life as much as possible! In order for that to happen, you’ve been through tough medical procedures and have been a great advocate for yourself.

    Thanks, again, for this powerful story. It is the best I’ve read on this site! Congrats!
    Kristi, Madison, WI, USA

  • Katie M. Golden moderator author
    5 years ago

    Kristi,
    Please do share with others! I’ve found that is really a great way for the people in your life to understand that what you’ve been saying for years also happens to other people. Sometimes hearing it from a third-party can validate what you say. WE can help change minds one at a time!
    -Katie

  • Hyena8
    5 years ago

    I had an ablation 2 years ago. Best decision ever! The migraines dropped dramatically due to lower hormone levels. I would recommend this surgery to any woman (after research and talking to your doctor of course. I also take Elavil 25 mg. per day and 160 mg of Inderal for high blood pressure. Without these medications I would have migraines 24/7.

    I try to hid my migraines as much as possible I don’t want people to know I have them!

  • Katie M. Golden moderator author
    5 years ago

    Hyena- That’s fantastic to hear that your ablation was helpful in managing your headaches!
    -Katie

  • labwhisperer
    5 years ago

    Thank you for sharing your struggles and survival with migraines.

    I started with hormonal migraines about 20 years ago. Over the past two years, I have been averaging 2 migraines a week. When I showed my headache journal to my doctor, she was amazed at the number of migraines and the severity I was dealing with and still working.

    I too, try to live and contend with the migraines as they come. The medication and treatment journey has begun and I find myself trying to strike a balance between drug side effects and pain relief.

    Please continue to share your journey.

  • Heather Benton
    5 years ago

    Great and interesting way to present this horrible monster!
    I am in the middle of a 3 day one (so far) and I am at my wits end. Schools out, getting damp, warmer, more life things to do..(I am from Atlantic Canada..very humid damp summers – big trigger) Our hospital does nothing, makes you wait up to 8-10 hours, gives you nothing worth the wait and would never keep you ‘B/C they have no beds’! Our doctors no longer have ‘RIGHTS’ at our hospitals so if you go you would never get to see your doctor or get your records there anyway!! Frustrating!! So many advances that are in the US that will liking never make to my area, where it easy to access. Canada as small as it is, lol, is so EXPENSive to travel between provinces!!
    I enjoy your articles! Reminds I am somewhat normal, many many of my extended family have migraines as well as my oldest son(19) and my youngest(13 not sure how bad yet)!
    I was going to add that one other factor that has me in twice the pain is I also have Fibromyalgia…thought of it when you said that you SLEPT up to 18 hours and WOKE RESTED! I don’t remember what a good night sleep was and have never in my memory as far back as I can go (as young as 5) remember waking feeling rested. Wait I do when I was in my 1st trimester of my pregnancies and didn’t have migraines while I was pregnant either!
    Didn’t mean to babble, it was that or cry, missing another Baseball Game, still getting over the 5 I did go to on the weekend. Still it hurts.
    xox Keep doing what your doing and making all of us feel not alone. Keeping us informed 🙂

  • MigrainePuzzlePieces
    5 years ago

    Fabulous book Katie!!! This will go a long way in raising awareness. Thanks for doing this. We all benefit.

    Oh and thanks for sharing on Migraine.com

    – Skylar

  • Nancy Harris Bonk moderator
    5 years ago

    Hi Katie,

    What a wonderful project! Thank you so much for sharing it with all of us!

    Nancy

  • Jennifer Elliott
    5 years ago

    Wow in America it sounds like they do a lot more for you then they do in the UK.

  • Heather Benton
    5 years ago

    I had the same thought as you! I am Canadian, and we have *FREE* health care, but not great (especially from the part I am from. So frustration as I can relate in every area of Katie’s stories and think ‘IF only that was available, or this was available to try…or never even heard of that before”

  • Mary G.
    5 years ago

    I am 67, and have suffered with migraines my whole life, although I did not get a diagnosis until 1986 when I was forty. Peri-menopause and menopause exacerbated them until I, too, had to take disability leave from work. I was hospitalized for treatment and withdrawal from opiods and triptans at Jefferson in 2003. After that treatment, prophylactic 100 mg daily doses of Topamax helped with frequency and severity, with nasal Migrainal as my rescue med. My big breakthrough came in 2005, however, after I was diagnosed with uterine cancer and had a radical hysterectomy. Not only am I alive to tell this story, but real puking screaming migraines only happen now about once every six weeks. I tapered off the Topamax about a year after surgery, and now manage with Excedrin and Migrainal, and very occasionally anti-nausea suppositories. Truthfully, my head still hurts every day, but not to migraine level. I am sure you have read the research about how pain trains our brains to be in pain. A long, painful, and exhausting journey. I hope yours does not require surgical intervention. Best to you.

  • Heather Benton
    5 years ago

    Which a hysterectomy you always have that 50/50 chance of getting rid of your migraines!!! I had once at 35 and I was the glass half empty part of that 50% 🙁
    Glad to hear your over all health is much better!

  • Katie M. Golden moderator author
    5 years ago

    Mary G,
    Life has put you through the ringer and you’ve managed to come out on top! I am truly inspired by your story. I absolutely agree that the more pain you are in, it’s hard for the brain to not know anything different. It takes hard work to manage the pain, but it’s so important to not let it defeat you.
    Thanks again!
    -Katie

  • kmripple
    5 years ago

    Good for you Katie! Through all the pain and suffering, mental anguish, exhaustion and everything that comes with feeling plain rotten a whole bunch of the time, you have found the strength to persevere and try to make something good out of the bad. Kudos to you. That is hard to do! I am glad to hear that the severity of the migraines has gone down and that you can be productive some hours of the days. Hoping for better days for you and for continued strength, hope and optimism!

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