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You Have a Friend Request

You have a friend request from Katie. Even though we’ve never met, our lives are similar in many ways – we both have Migraines. Although we probably don’t live in the same city, we have an abundance of friends in common – friends that suffer like we do. We both want the same basic thing in life – to feel better. You may not realize it yet, but we both belong to the Migraine community where we can share our stories and gain support from others who have gone through the same experience. I am joining the Migraine.com team as a regular contributor. My credentials are basic. I have Migraines. I write to help cope with my condition. I hope to contribute a positive view on living with Migraines. I think we can relate to each other through our struggles.

I believe that every Migraineur has gone through The Five Stages of Grief (Denial, Anger, Bargaining, Depression & Acceptance) at some point in their lives. Maybe even experiencing all five emotions each time a new Migraine hits. I was in serious Denial when my Migraines became chronic. I had Migraines since age five, but at age 29, suddenly I couldn’t recover from one before another would hit, knocking me out of commission for weeks on end. I assumed the symptoms would subside after a few days like they had in the previous 20+ years. When the headaches didn’t stop, I figured there was no way this could last longer than a few months, ok, maybe a year at the worst. Unfortunately, next month will mark three years of constant pain.

With each unfruitful doctors appointment or failed treatment, an Anger built inside of me. Every time I had to decline an invitation or cancel on a friend last minute, it was a painful reminder that the Migraines now controlled my daily activities. I had to carefully allot my time, including time for my job. I had to significantly cut back my hours. My mental capacity was not as sharp as it used to be. I’d forget the small stuff and in my frustration, I easily became angry at those around me.

Then I thought I could Bargain. If I tried meditation, gave up my beloved soda, stopped using opioids, napped less often, then surely I would eventually be cured. Bargaining also came in the form of wishing for more pain free hours. If I slept all day today and didn’t schedule anything taxing for tomorrow, then I should have enough energy to go to work for a few hours today. As I threw everything in the book at the Migraines, they stubbornly reminded me they weren’t going away.

Years went by without much change, despite Botox, a cocktail of medications and serious lifestyle changes. Overall I’ve kept a positive attitude about my situation thanks to all the support I have, but I have moments of Depression. Being in bed for weeks on end with no energy to socialize or even talk on the phone can become a very lonely place. Spending time managing medications, appointments and insurance issues can be all-consuming. It’s painful to realize your life is hindered by this disease.

The last stage is Acceptance.  After close to three years of chronic Migraines, I can now recognize that there is no magic cure for me (although I will keep looking for one!). Maybe one day they will stop just as suddenly as they began. Until then, I’ve shifted my focus from finding the cause to learning to co-exist with the pain in my brain.  Through this blog, I hope to share my trials and triumphs, and learn from you as well.

When I first mentioned the idea of writing for Migraine.com, my long-time boyfriend hesitated, which surprised me. He’s been amazingly supportive with my condition and I know he believes in me. His concern was because he was struggling to accept that I was part of the Migraine community and this disease is going to be a part of our lives indefinitely. He’s experienced the Stages of Grief in his own way too. By acknowledging that blogging about my condition was the right next step for me, he had finally reached Acceptance.

The truth is that from my very first Migraine at age five, I belonged to this community. And more importantly, our care-takers, loved ones and friends belong here too. Our stories are all different and how we approach this disease is unique for each of us, but we all speak the same language. Whether you get a Migraine once a year or suffer on a daily basis, we’ve all experienced the Five Stages of Grief in our own way. This site offers education, resources and a judgment-free place to share our journeys. I find it comforting to read that someone else has had a similar experience and that I’m not alone in this. I’m really looking forward to getting more involved in the Migraine community and interacting with fellow Migraineurs. We can learn a lot from each other.

Do any of these Five Stages of Grief sound familiar to you? How has the community given you a new perspective on dealing with these stages?

You can read my bio here and my personal Migraine story here.

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

  • Sally
    5 years ago

    My migraines have been chronic for the past 20 years though I’ve had headaches since my teens. I’m 56. Tried it all. Meds, nerve blocks, acupuncture, Botox. Nothing really makes a difference. Still 4-5 a week. Had a career of 25 years until 3 years ago when my board decided to “eliminate my position”. Was going through a bad phase of daily migraines. A few of the board members convinced the majority I was making it up and using it as an excuse. Since then I have really struggled with depression. As difficult as it was to go to work some days, being home all the time is worse. My life was pretty much my job which was a really high profile position. I am so bored and so lonely.

  • Beth
    5 years ago

    Hi!! Been having horrible headaches for years..been admitted to hospital 3x for them. Only the last time, in August, did they actually do some testing of my brain. Now I have a name for it…migraine. I’m dealing with them the best I can. I see a neurologist in a week. I’ve been taking some pills that a Dr. prescribed in the hospital. I’m grateful for this sight…I’m learning a lot..like the fact that even tho I’m no longer in pain…this foggy feeling..feeling totally worn out is part of it.

  • LisaJsmith
    5 years ago

    Hello,
    I’ve only discovered this site today. Your story makes me very sad. I’m not sure what ‘stage I’m at’ I’ve always been a migrane sufferer – maybe one or two a month. Then all of a Sudden over night in May 2013 it was like someone had flicked a switch. I walked into work and the attacks were constant. Daily. I didn’t even recognise my own triggers as they were so aggressive I didn’t even know what was triggering them. I wasn’t even sure it was a migrane. I was loosing feeling in my face. My vision was a loss. Tingling sensation in my left arm, mouth eye. I though this shouldnt be happening to me. I was fairly fit and well for an average 24 year old. I thought I was going mental. Day by day week by week they were becoming increasingly worse. I also do a 40 mile commute to my place of work which isn’t convinient when you loose your vision on a daily basis. I had never experienced pain like it. I felt like no one at work under stood or they thought that I was exadurating. It got too much for me I had one attack that put me in the hospital for almost a week. They initially thought it was a brain hemorage. Luckily it wasn’t. I had to have all the routine tests. Nothing showed up. Managed to work out my triggers are enviomental so lights etc I am now so light sensitive some supermarkets are a total no go. Shopping centres are a no go. But my aruras are out of this word. I can’t believe how disabling it can be. After my hospital trip I went to the doctors who refered me to the specialist. Just trial and error with tablets basically. Propanalol. Awful can’t get my arse out of bed with those. Currently on toptrimate they stop the pain but still the migranes with the ararus so got to try something else. I haven’t even had a year of chronic migranes yet – but I read all these stories of 3 to 30 years and I just think to myself how am I going to cope with 30 years of this if it never goes away? – all I did is wake up one day and they were there. I want to wake up again one day and then not be there. The chances of that happening are slim arnt they? …
    Trying to see the positives. I think I’m to early into my chronic migrane journey to be accepting. I Will keep reading all these posts. Everyone is so wonderful and stong. I hope I am! True inspirations.

  • LConlon
    5 years ago

    Wow Katie, migraines at age 5? I can’t imagine. My biggest fear is that my daughter will get them. She is 24. I started getting them at age 27. I’ve had them for 30 years now. Sometimes I’ll have 15- 20 a month and sometimes I can go a week without one. I go to bed at 9pm, no alcohol, no dairy, I rarely socialize, can only work part-time. Taking hormones improved the severity but not the consistency. The moment I feel one coming I take a triptan drug and go about my groggy day. I power walk when I can and eat very little sugar. I kept a diary for a while but I have so many triggers; weather, food, stress & noise. I am sorry for your struggle and all the posts hit home for me. All you can do is keep fighting on.

  • Katie M. Golden moderator author
    5 years ago

    Luvgsd,
    Thanks for reading! I feel your frustration, especially when you’re doing all the right things. I commend you for walking, keeping a consistent schedule, and watching your diet.

    I hope your daughter doesn’t get them too! Here’s to hoping for more pain free days!
    -Katie

  • Vicky Wemyss
    6 years ago

    I completely relate to your story, Katie and I am very grateful that you shared it. My migraines have been chronic for 5 years and I have had them since I was 20 ( I am now 42.) I feel that I have missed out on so much and that I am so unreliable that I now hardly ever make plans at all. Last year I became very depressed and lonely, but I think I have reached the acceptance stage now, too. I don’t want to feel angry about the unfairness of this any more . I have tried all the medications including botox and an occipital nerve block and nothing has given me any relief so now I have decided to learn to live with this condition. This illness has been tough on my husband and children, too. I recently had to leave my employment and take a job that is very limited in hours and satisfaction and that has been really hard. Thanks again for sharing. It is good to know I am not alone.

  • Katie M. Golden moderator author
    6 years ago

    Vicky,
    Thanks for sharing your story too. It takes a lot of energy to be angry about the hand we’re dealt and extra energy is something we don’t have a lot of. Like you, it took me a long time to recognize that I needed to learn how to live with this to the best of my abilities. I can also sympathize with not feeling satisfied in regards to the career choices you now have to make. I’ve been on long term disability for almost a year now and I’m very hopeful that I’ll be able to return to work at least part-time soon. Writing for Migraine.com has helped me to fill a void. Maybe there is something out there for you too!

  • Jennifer Schmitt
    6 years ago

    Thank you, Katie for sharing your story. It is a tremendous help to read about others in my same position. Before, I felt as those I was all alone in this…that no one else felt this way. I am glad to know that I’m not the only one whose doctors and medication treatments don’t work. All the doctors, all the numerous medications – from Botox, preventatives, triptans, narcotics, non narcotics, DHE – to ER visits and hospital stays….nothing has brought me relief. I have a fabulous support system, but with a husband and three kids – I feel like I’m not a wife or mommy anymore. Just living in bed, missing out on life. Thanks for these stages!

  • Patty
    6 years ago

    Dear Katie,
    After years of research and countless trial and error experiments, I have gotten my migraines under control. I take the birth control pill “Reclipsen” and I take it consistently (no 7 day break). I also take 75mg of amitriptyline each night. Outside of that I discovered that I have histamine intolerance and the way I verified it was by reducing histamine foods and taking 2 supplements. One blocks histamine receptors and one breaks down histamine in the blood. It’s been months and months since I had the kind of migraine that left me with tears running down my face, severe depression and pain one one side so bad it made me sick to my stomach.I recommend that you google “Histamine intolerance” and read as much as you can about this. See if you think it pertains to you and I’ll be happy to let you know all the ways I combat it. pattykd11@yahoo.com

  • Holly
    5 years ago

    Thank you for sharing about Histamine intolerance, that is something I just recently heard about. I am going to look into it.

  • Noreen
    6 years ago

    I’ve had migraines for 46 years, at first just on the right temple area of my head, but the last few years, they’ve started as a sinus-type pressure over my left eye, & for-head, progressively getting worse, and then moving over to the right side, as the usual right-sided migraine.
    If I take generic Excedrin along with generic Benadryl, as soon as it starts, it will sometimes stop it.
    Quite often, I wake up with the pressure, and have figured out they are a new type of migraine, because the only thing that will stop them are either Imitrex or Maxalt.
    I haven’t looked up “Histamine intolerance” yet, but I am wondering, if these newer type headaches could be from that? I will look into it, but look forward to hearing what you have to say. Thank you.

  • Ellen Schnakenberg
    6 years ago

    nfrede78,

    Please never try to diagnose yourself. There are over 300 different types of headache disorders, and more than one that will react well to triptans. Seeing a Migraine and headache specialist is really the very best thing you can do to make sure you really are getting an appropriate diagnosis and treatment. Most of the time patients see one of these doctors, it becomes a life-changing experience for them. Non-specialists are often just not well educated in how to diagnose and treat these issues. Here is a link that can help you find a specialist nearest you: http://migraine.com/blog/looking-for-a-migraine-specialist/

    It is common for Migraine symptoms to change, even for Migraine pain to change sides. This doesn’t necessarily mean it’s a different Migraine type, but could be a good reason again, to get in to see your doctor for an appropriate diagnosis. Let’s be sure you really know what’s going on. The chances of it being something truly bad are extremely small, but the smart patient will stack the deck ini their favor by making absolutely sure 🙂

    Histamines can play a part in Migraine. Not only can it trigger Migraine, but some doctors are using it to help manage Migraine for their patients! Isn’t is strange how something can hurt us and help us. It all depends on what’s going on that is triggering our Migraine attacks, and this varies from person to person. Migraine is a genetic, neurological disease that is multi-factorial. This is why it’s so hard to manage and treat and why it’s so important to see a doctor who really knows what they’re doing.

    Let us know how you’re doing…

    ~Ellen

  • Cathy Minga
    6 years ago

    Katie, I too have had Migraines since childhood with them amplifying during adulthood. I agree with your stages of grief… however I just warn you about your time on the computer. I had to give up my job which had me in front of a computer for 8 hrs… the flashing screen and lights did a doozy on my headaches. My time now is limited to 1 hr incriminates a day.

  • shantahardy
    6 years ago

    Wow, almost similar story. I’ve had chronic migraines for over 2 years now. Despite every possible type of med from botox and others its still there. Everyday pain and wishing. My pain affects my left side; walking, talking, numbness, & almost like a stroke. Im divorced and I have three children (boys) that finally understand my pain and there for me. However, I can’t live a normal like date or go have fun much. Everything seem to be a trigger. I go through the five stages constantly! This is my life!

  • Brooke Collins
    6 years ago

    I enjoyed this piece! I’m wondering if, with chronic migraine, though, we don’t continually cycle through these stages?

  • Jan Piller
    6 years ago

    Yes – I cycle through these stages every week. But I have to admit I’m getting tired cycling through these stages. My life is centered around the migraine, then recovering from the migraine, then rushing around to do everything I possibly can before the next migraine comes 48 hours later. I don’t really have a life. No quality of it anyway. My sister dumped me because of a migraine. So this grief cycle is just a never ending loop. The only thing that keeps me going is my most awesome husband and a job I love and look forward to each day. Pretty pathetic when your best moments are centered around work and not a life of my own. When I retire, there won’t be much left for me.

  • Writermom
    6 years ago

    Hi, Katie! Wow! Since you were 5? The earliest I remember mine were when I was a senior in high school. Everyday I came home from school and had to lay down with a dark cloth over my eyes and sleep for a couple of hours before doing anything else. Then they got better and were only occasionally. I worked through them when I was working and they were a couple of times per week. Now I am retired and they are the worst I’ve ever had and they are daily. I’m learning more about them each day, though, and some of the meds from my neurologist have made them less severe, but not stopped them. Glad to meet you, but sad we are both migraineurs, especially chronic ones. Be seeing you around migraine.com.

  • Jenny
    6 years ago

    This sounds like my life exactly…even worse is when people around you don’t look at it as a disease and say “what’s the big deal..everyone gets headaches”…these are not just headaches…they are debilitating…I don’t leave my house for days…I’m in bed or vomiting in the bathroom…so far no help…I’m 41 and nearing menopause has worsened by migraines X 10….I’ve been through all the stages and kinda stuck on depression because so many people just don’t understand or believe how often they can occur and how truly sick they make you….in meantime…hoping for an answer and a cure!

  • Jan Piller
    6 years ago

    I understand Jenny. People on these kinds of migraine sites are my lifeline. I don’t think anyone can understand a migraine if they’ve never had one. I’m lucky to have an awesome doctor also. I don’t know what I would do if I din’t like my doctor!

  • Dori Fritzinger
    6 years ago

    Welcome Katie:
    I have had headaches as long as I cam remember. I got the migraines at the age 9. My daughter age 13 and my grand-daughter age 11.

    Now after 5 years with life alternating side effects and of ever specialist in many different areas. Getting a name and starting to learn how to keep this stuff under some form of control.

    We now know what it is and changes my in my life it has Who would have thought a Migraine causing so many life threating health conditions – I am 54 years old and in a daily battle with my migraine disease – acceptance – I don’t know if that will truly happen.

  • flojo
    6 years ago

    Hi Kate
    My story is so similar to yours expect I’m not at the acceptance stage yet very much depression stage and your article helped me feel that at least someone else knows why I feel like this, when I try to talk to health care professionals and explain I have migraines every day if not the fear of when the next one will happen they just don’t understand and with no end in sight how do you keep fighting ?

  • Diane Fox
    6 years ago

    Thanks Katie for an amazing blog. I never looked at my emotional state that way before. I have been through all of these stages without realizing it, and they still cycle back around. After 11 years of chronic migraine, I am finally approaching the acceptance phase. It feels like a relief even though the migraines have not improved. Thanks for putting the last 11 years of emotions in to words.

  • Cindi
    6 years ago

    Welcome to the community, Katie. It’s always nice to have someone who understands!

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