Queen of Migraine Town

I have had migraines for as long as I can remember. When I was a child, I remember spending many afternoons laying still across the couch, feeling sick with searing head pain. This happened a few days a month typically. When I was around 11 or 12 I was diagnosed with migraines by a neurologist.

When I was 20 and in college I began to experience terrible jaw pain on the left side, the same side that my migraines attack. The migraine frequency increased to 2-3x per week. This was the first time that pain began to interfere in my daily life. Classes were missed, shifts were missed. I had to explain to teachers and supervisors that I was having a lot of serious migraines that left me unable to function. I saw neurologists, physical therapists and chiropractors again and again.

After I graduated from UCSC I moved to New Orleans and soon began work at Tulane University in the library. One month into my new position I had to take a sick day for a severe migraine. I felt very guilty for it. I spoke to my bosses honestly about the migraines and they were understanding. I did my best to always be there but I definitely used up all of my sick days.

In August 2005 I began a a new position at another library in New Orleans. Two days later, Hurricane Katrina blew through the city. Stressful doesn’t even come close to explain the feeling. Evacuation and a cross country trek back to California followed. I reluctantly returned to New Orleans after about 5 weeks, back to my job at UNO. The commute took me through the Lakefront area of the city, which was one of the hardest hit places. Houses were tilted sideways, abandoned, with the number of dead bodies found in the building spray painted on the front. Boats and cars were overturned in the middle of the street. The city was sad, beaten down. We all did our best carrying on.

This was the time period when I remember starting to have migraines on a daily basis. It was harder and harder to function. I saw more neurologists, got more prescriptions, preventative and abortive. I missed more work. After about a year, the powers that be had to let me go. I understood why but still felt heartbroken. I felt weak and useless. When I told one doctor that I had headaches every single day he told me to deal with it. Most were perfectly nice and wanted to help but just didn’t know how. My scans revealed nothing abnormal.
I went home to Los Angeles for a while and stayed with my parents, visiting headache specialists in the area. I had also been going to therapy, in both cities. Nothing was helping.

I went back to New Orleans and back to work at a coffee shop, trying my best to ignore the headaches that never really seemed to go away. I got through many shifts with caffeine and vicodin or caffeine and imitrex. I could only do that for so long. I realized that I could be getting medication overuse headaches as well as migraines and I stopped working and quit everything. I went to yoga, I tried meditation. I quit caffeine and alcohol. None of this made a difference. I applied for disability and got it.

When my long term relationship ended I left New Orleans the next day. I came back to LA, back to my family. I made one last attempt at working a normal job but it didn’t work. They needed someone who could be there full time and I was too sick too much of the time to handle it.

Back on disability is where I am. It isn’t enough to live on, so I stay with my parents who have been very supportive in more ways than one. I have no intention of remaining on disability for the rest of my life. I have realized that I may never be able to work in an office and I am trying to work around that. I have been taking online classes in graphic and web design. I even did a part time internship at a web design company for a few months til the economy got the better of them. I can get things done on my own time frame and I really do enjoy what I am learning.

It depresses me to say that I still have headaches every day, usually migraines. I take either vicodin or imitrex no more then 2-3x per week. The rest of the time I smoke medical marijuana which offers some relief. I drink one cup of coffee a day and drink alcohol socially. I go to physical therapy, get regular exercise and am on a gluten free diet (which has helped my stomach). I have branched out in the past couple of years and looked beyond Western Medicine, seeing an acupuncturist, nutritionist, hypnotherapist, a TMJ dentist and a cranial sacral therapist. I don’t know what else to try that I haven’t already. I try to stay sane by setting goals for myself as far as gaining my independence back and not taking things terribly seriously. I try to not complain or take my frustration out on other people. I have to tell myself that it won’t always be like this, a constant unwavering headache that only goes from tolerable to absolutely miserable. I can’t possibly have a headache for the rest of my life, can I? Six years now. I’m ready to leave Migraine town.

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 (8)
  • Nancyjo Casmere Sobolewski
    7 years ago

    I also either have a Bad Bad headache, or Migraine Every Day of my life! I have to lay with Ice on my head! I already had A BURST BRAIN ANEURYSM, once! & am always waiting for the 2nd one, it hurts so bad. The Doctor’s do not understand Us! The Pain is horrible, and we suffer, but nobody can help us! I AM ALWAYS TRYING TO FIND AND ANSWER…….

  • Jenn R
    7 years ago

    I know exactly what you mean. Migraines are so debilitating and frustrating. I’ve two days without a migraine this week, usually I have at least a mild headache all the time. I’m excited to have two full normal days. I’m sick of my life being controlled by annoying headaches, nausea, and medication. People that don’t understand or have migraines don’t have a clue what this is like. I almost laugh when I say something about having a headache and someone says I have tylenol…if only it were that simple. Hoping for relief or a better treatment regime for all of us! Stay strong everyone =).

  • Katherine Corley
    7 years ago

    If my migraines continue the pattern I have experienced for many, many years, I’ll be on disability whether I “plan” on it or not. I cannot work any kind of job.

  • Sherri Franklin
    7 years ago

    I can relate to this all the way. Seven yrs going and I’m 24.

  • juliannealley
    7 years ago

    Have you tried Botox? Nerve blocks? Radio-frequency nerve ablation? Just a few suggestions. I hope you find something that can give you relief.

  • Ellen Schnakenberg
    8 years ago

    momo,

    Thank you so much for sharing your experiences here. I know many will identify with them and the action you’ve taken to live your life the best you are able.

    A few questions:

    Are you seeing a Headache Specialist yet? These neurologists are specially trained in the diagnosis and treatment of headache disorders and really are the best places to go when you’re dealing with a chronic problem such as yours. Their help is truly invaluable.

    What did the dentist tell you about TMJ? Were you able to see a dentist that specializes in these kinds of problems? As you probably know, dysfunction in this vital joint can trigger headaches and Migraines in those who are susceptible to them. There are some patients who really do well when they address their TMJ problems. You might even consider an appliance trial just to see if it makes a difference in your pain.

    Is your pain always on the same side of your head? I can’t help but wonder about Hemicrania Continua. This is basically a one-sided headache that can range from mild to excruciating. The pain doesn’t let up though and can literally go on for years. Usually HC is treated with indomethacin as it responds fairly well to that particular drug. This is where seeing a headache specialist could really make an enormous difference in how you are able to live your life.

  • Monica author
    8 years ago

    Hi Ellen,

    Thank you for your response. To answer you questions:
    Yes, I have seen three different Headache Specialists in Southern CA. One of them put me on indomethacin but there was no change. I saw a TMJ dentist about six months ago for the first time. I was fitted for a $2000 device which I wore for a bout 5 months with no change. My Physical Therapist then suggested I remove it for a while and see what happens. Again no change.
    I am so frustrated.

  • Ellen Schnakenberg
    8 years ago

    Oh momo I’m so sorry these changes haven’t helped you yet. I say “Yet” because I still think a headache specialist is the best doctor for you. Sometimes it takes a long time to finally find something that works, especially if you’re like me and not a lot helps. Sticking with a doctor so you don’t have to start over from scratch with each new doctor, is sometimes the key to finding the right management tool. This simply means that lots of tools have to be pulled out of the bag before you’re probably going to find one that helps. There are very few people who have literally tried *everything* because there are literally hundreds of medicines and combinations of therapies that may help… so although it may take lots of patience and work, it is well worth it to A. know that you have given everything an appropriate (and sometimes lengthy) trial and B. find something or combination of “something”s that will eventually help you.

    Remember that each failed attempt at a therapy/treatment is never a step backward. It isn’t really even a failure, because you learned something vital! You now know one thing that doesn’t work for you. This is a step forward and actually good news. Eventually you’ll take enough steps forward to get you to your destination of appropriate Migraine management.

    If you have a question for our Migraine specialists, I would encourage you to write to them and see if they might be able to help you in your quest for better treatment: http://bit.ly/fZjuv6

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