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My migraine story; living my life in the dark

I will start with my first migraine at age 16, I felt like someone was hitting my head over and over again. My grandma packed my entire head in ice and sat with me while I cried due to the pain. She closed all the curtains in the bedroom and kept a cold washcloth on my eyes as well. That was just the beginning of my nightmare. My migraines started out once or twice a year and they all with the same result, I would become immobile and sick to my stomach. Then around 18 the pain became more severe, so the doctor ordered a CAT scan. The tests show nothing and he sent me home with Tylenol.

The medicine didn’t even touch the pain, so I did my best when they hit me. By the time I turned 20 my doctor ordered an MRI and an EEG, but both were normal and the doctor prescribed me Naproxen. The Naproxen did do some help, but it was short lived and I started racking up ER visits. My doctor decided to add something that I would put under my tongue, which would open my blood vessels during an attack. I was also given a list of foods to avoid, I steered clear of all trigger foods and the migraines still came. At 24 I got married and became pregnant and everything changed for the worse. My migraines would wake me up out of a dead sleep and I would have to be rushed to the ER and put in the maternity ward.


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My blood pressure would go up so high, the doctors were afraid that I might have a stroke. In my 9th week, I was deemed “High Risk” and placed on bed rest. In any pregnancy the doctor doesn’t want you taking any medicine that is not needed, in the ER they were still giving me Demerol and an anti nausea medicine. I also had to see a special neurologist, who also placed me on meds for my migraines. During my pregnancy I had a migraine everyday and throughout my delivery. Once my son was born, my doctors had a conversation and suggested that I not have any more kids, due to the migraines I suffered with my first pregnancy.

They stated that I had unstable blood pressure during a migraine and they didn’t think I should take the chance and risk my life. Unfortunately my migraines didn’t lessen after birth; they pretty much stayed the same. I went to my doctor with this mind numbing pain; he said he was giving me a shot of Imitrex. After he gave me the shot, the nurse left a bell by my side and left the room, while I was holding my baby. I started to experience so much pain in my chest, I rang the bell over and over, but the nurse didn’t come. I left the room they had me in, I screamed for help and as soon as the nurse got to me, I shoved my son into her arms and I passed out. Once they got me to come to, the doctor informed me that I was allergic to Imitrex and he put me back on Fioricet. That medicine did help, but it also triggered rebound headaches. So I went to as many specialists as my doctor sent me to, without any relief. By the age 27 the ER staff recognized me by face. Also at age 27; I received several blows to my head. This made it impossible for me to hold my toddler. The doctor had me on valium, due to the anxiety of the trauma and the muscle spasms caused from the trauma. I fell into a deep depression, I loved my baby so much but I couldn’t hold him. By the time I turned 29; when migraines would hit me and if I was at work, I would have to be driven home. The pain totally disabled me.

On average I was missing more than 30 days a year at work. Between 2002-2005 I missed over 160 days of work due to migraines. I had to be taken out of work via ambulance 5 times, driven home unknown amount of times and I lost count on local ER visits. I know I had to file bankruptcy due to all the medical bills, just from my migraines. In 2003 I started to experience a new migraine, along with my regular migraines. I started having ocular migraines; it felt like a hot poker being jammed into my eye. On certain days, both eyes were affected. I finally learned that migraines could pass down through your DNA. Both sides of my family had migraine suffers, so I had a 100% chance of having them. I tried every drug treatment; pills, shots, nasal medicine, preventative medicines, beta blockers, calcium blockers, anti seizure medicine and none of it helped. In 2005 my doctors declared me disabled; I could no longer handle daylight, sounds or smells. I stayed shut up in my blacked out bedroom for days on end. My poor son has had to help me throughout his entire life, but when I had good days, they were spent on him. I also had family that would take him and made sure he never missed out on anything.

So I will bring you to 2009; I am told by my family doctor and neurologist, that I have reached the end of their abilities. I now had to seek help from pain management, within 3 months I reached the end of their abilities. In 2010 the FDA finally approved Botox for migraine treatment, but Medicare stated that they would not cover that treatment in my case. I met all the guidelines and even got my part D to cover the Botox. After fighting back and forth I finally got approved and received my first round of shots June, 2011. The Botox is wearing off; I am starting to have migraines daily again. I have to say though; the Botox helped me a lot and I actually felt normal for once in I don’t know how many years. I get my second round of Botox at the end of August, so once again I am waiting in my blacked out bedroom counting down the days.

STORY UPDATE:
My lasted update to my story; I received my second round of Botox on Aug 30th. The Neurologist stated that he injected almost the entire alotted amount. As of Sept. 7, my migraines have calmed down, but I am still suffering from fatigue. Bright lights, scents and loud noises still bother me too. Another bright point is that my appetiete has lessened, which is great. For the month of August I could only stomach 1 thing, a cheese sandwich.

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

  • Tara Lane
    8 years ago

    I thought my saga was bad but it pales in comparison to yours. My heart goes out to you. My head hurts just reading about it. I have had migraines for 43 years, and you are right, as much as you want to stop, there is nothing to do but keep going. I gave Botox a couple a chances, but perhaps I should try it again, because every medication has come to the point where it no longer works, I live in the dark, and see very few people. I feel very isolated and alone with daily pain. I understand about not eating as well although at the moment my appetite, although not great, is better than a cheese sandwich. At one point it was vanilla pudding and cottage cheese!

    You give me courage to keep going and I guess that is what these blogs are for. To give each other courage to keep going in spite of all the pain we endure. I went for a biopsy for a small area of basal skin cancer I have on the left side of my nose and eyebrow. The last 3 weeks of the tx caused acute migraines that responded to no rx I had and I was in excruciating pain for most of the time. My dermatologist was not convinced it was the chemo that was causing the problem, but I was. The triggers and symptoms were too classic. I finished my first tx and will likely have to undergo more. Although it is not a very dangerous form of cancer, it is still aggravating to the disease I already have, and making life more miserable. As my dermatologist was doing the biopsy she was surprised that I did not flinch for either the anisthetic shot or for the scraping of skin cells to get a sample for the pathology lab. I told her it was barely a pin prick compared to what any migraineur went through on a daily basis. I guess you have to be one to know what it feels like.

  • Julie Clark
    8 years ago

    Thank you for being candid about how chronic migraines can effect daily life. I completely understand.

  • Sonja Jones
    8 years ago

    Botox treatments have been more and more effective for me with each treatment. I’ve been getting injections every three months for almost 3 years, and though I still get migraines, it’s a few times a month instead of daily, and the pain is not as severe (thank God!) It took close to a year before I felt like a real person again, but it works! Hang in there.

  • Barbetta Reedy
    8 years ago

    If you get botox watch out where you get it I had that done by the Veteran’s Administration for a charlie horse that I have in my neck the botox gave me acid reflux disease because the shots they were giving me were too close to the throat. I had this done 7 years ago using the botox for pain. Watch for side effects from it. Hope it works for you.

  • Brenda Rivera
    8 years ago

    No one can understand your pain except for a fellow migraine sufferer it is unbearable and disruptive to life. I literally feel your pain! I hope you get better and I hope they (researchers) can find treatment for us soon, something that finally works! Sometimes I just want to give up but I can’t, it’s not an option! You inspire me to continue forward with treatments.

  • Kathy Allen Casella
    8 years ago

    My story sounds so much like yours. However, I actually had a stroke from a migraine headache. Basically, I’ve had a constant headache, with the exception of ONE DAY, for over 3 1/2 years. I’m almost totally bedridden, in the dark, away from my family, friends and Church. I wish someone could help.

  • Allison Dodgen Culler
    8 years ago

    wow. That’s a great thing for a Dr. to tell a patient. “you have reached the end of their abilites?” REally? now, that’s real compassion. I, as a fellow sufferer, feel your pain, but I don’t think any doctor should just essentially give up…….GG.

  • Debra Nemeth
    8 years ago

    The iitial round of Botox…isnot the full ddose. Initially, you get a small dose..to beware of any raections. 2nd is a FULL. dose. Hang in there.

  • Sherri Anderson Inabinet
    8 years ago

    I deal with migraines and have read many of these stories…..your story has been the worse and most astonishing. I wish you luck!

  • Tracy Brooks
    8 years ago

    Amen! Your story is so similar to mine that I thought I was reading my own biography minus the pregnancy……Thus far botox has been the only thing that provides minimal relief from my daily chronic migraines and fibromyalgia….God Bless and I hope this treatment works for you.

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