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Giving up, picking myself up and trying again… over and over and over and…

I’ve had chronic daily migraine for as long as I can remember. I remember my Dad telling me in early high school that if I didn’t stop taking Advil so much, I’d be addicted to heroin before I graduated (I don’t get it either, lol). In my freshman year of college, I was taking 18-20 Advil at once, to the dismay of my roommate.

The summer between my freshman and sophomore year, I finally had an aura, my Mom happened to be visiting me at work and recognized it, and I was FINALLY diagnosed with migraines. Later that summer, my arm went numb during one and I was sent to a neurologist, who realized my stomach aches as a child were migraines and gave me a diagnosis of chronic daily migraine for the first time.

I’ve seen dozens of neurologists since that hopeful day, when I still believed a diagnosis meant a cure or at least a treatment. From the small town I went to college in, to Atlanta, Denver, and now Madison, WI, home of the UW Medical centers. From the HMO neurologists in Denver that thought I was a bored housewife (I work full time in law enforcement, thank you!) and told me I was “breathing too much” to the private headache specialist paid for out of pocket to the tune of $700 for a single appointment. I’ve had CT’s with and without contrast, MRI’s with and without contrast, maxed out on Topamax and couldn’t remember my husband’s name, been injected with Botox all over my head, neck and shoulders, had injections into my occipital canals, and tried everything anyone can think of.

I hurt every day. Some are worse than others, but all hurt to some degree. Nothing fixed it. Nothing fixes ME. I’m broken, malfunctioning. I run an organization of over 80 people now, and every day is a little bit harder. I’m not even 40, but i can’t imagine continuing on this trajectory and being functional in 2 or 3 years, never mind 15!

I get up and keep going because I have a child I cannot bear to hurt. But I dread the day that my pain is greater than that fear for longer than I can hold it at bay. At its worst, I hate myself for waiting until he was old enough to remember me and miss me and hurt.

Every day I muddle through. Every day I watch for a new treatment, a new theory on what causes this agony and how to stop it. Every evening I wait impatiently for him to go to bed so I can escape to sleep for a few blank hours.

Every morning i wish I could bury my head under the covers a little longer (I can get ready for work in under 30 minutes, including shower- anything for 1 more minute in the quiet dark).

I wonder if the pain, and the determination that it has taught me, is why I am running a organization in the top 20%, size wise, in the nation for what we do, and one being pointed to as on the forefront of the industry, at 38. In a traditionally male dominated field, no less. Because I’ve learned to fight through the pain, to keep going, to find the positive in the darkest night, because it is the only way I know to get through the day?

I apologize for being such a downer. If you can’t tell, I have a migraine now, and am in tears of both pain and hopelessness.

Things will be better in the morning. (Now I sound like Scarlett O’Hara!)

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

  • JeffB
    6 years ago

    I’m backing Margaret on the success of the Ontario Migraine Clinic. I haven’t had a migraine in 9 years since I went to see Brandon.

  • margaret
    6 years ago

    Sorry…I also wanted to just point out that he has a 90% success rate!! What drug or treatment can say the same????

  • margaret
    6 years ago

    First let me please address Newdancerco….I have tried all the same techniques, drugs, botox, neurologists etc that you have and that is why I can sympathize. I would NEVER EVER want anyone to suffer the way many migraines sufferers do which is why I’m advocating this alternative treatment. TRUST ME…I have had the same thoughts as you and hundreds out there about acupuncture…been there done that. I tried acupuncture prior to going to the Ontario Migraine Clinic and it didn’t work but this is different. I hate to say that he is the ONLY person that knows this specific technique of acupuncture treatment. Right now in treatment there are women from all across Canada and the United States getting his treatment. None of us would spend the time or money to do it if it didn’t work! All I can say is to give it a try and you’ll be surprised. Brendan Cleary (the acupuncturist) was taught in Sri Lanka for 5 yrs by the late acupuncture guru Prof. Dr. Sir Anton Jayasuriya. I guess this in part answers your question Wayne…I have asked my acupuncturist if there is anyone else who does his techniques but apparently he’s the only one. We are trying to get him to teach someone else but he claims not to have enough patients…(when he was learning he would see over 200 patients a day) that is how he mastered the technique. Sorry for my long winded story but I just feel so passionate about this and I would love to help everyone out of this dark black hole. Best of luck to you all!!!

  • Wayne
    6 years ago

    Is there a consistent acupuncture treatment? I’m in the middle of Iowa, and am curious if there is the same type of therapy without traveling to Ontario.
    I have had migraines for about 30 years. I was on various drug treatments, none very effective. Most of that time I had a migraine about 4 or 5 times a month. Prior to about 2 years ago, I had a period of about 8 years where I only had about 3 or 4 a year.
    I started noticing visual problems on a daily basis. I had it checked with my Ophthalmologist, as I have had macular degeneration (stable for the last 12 years). That checked out OK, so I was sent down the various scans road. I have spent the past 2 years “ruling out” many various afflictions, and trying what seems like about 20 shelves of the pharmacy. I have what I call a “phantom of the Opera” headache constantly. The right side of my face, and down to my neck and shoulder.
    I have been through 4 Neurologists, and spent about 4 weeks off and on at the Mayo Clinic.
    At least I have a diagnosis… now if we could get a treatment. They call mine: Chronic migraine with Aura, Chronic subjective dizziness, vertigo, depression and anxiety.
    I had to take a disability retirement from the best job ever. (I was a Fire Lieutenant) Thankfully I have a minimal pension, but most importantly a Health Insurance plan.

    Three weeks ago, I had sinus surgery, which seems to have helped some.
    I guess this is a pretty long vent!
    The chronic nature of the pain is perhaps the worst. EVERYDAY having a background level of pain at 4 or 5 on a ten scale I actually can function about half the time with the pain. The really debilitating part for me is the visual issues. That really determines if I can be at all active. I have gone from very active, to being almost unable to exercise or do anything physical as it increases the visual and dizziness issues.
    It is hard to fight feeling helpless, and needing to ask for help, instead of being the person who provides the service.
    Oh… I guess I should state that I am in the smaller percentage of migraine sufferers, as I am male. (That doesn’t make my helplessness better, either. Unfortunately, whether just me if not other men, I struggle separating my identity from my career.)
    Wow… Sorry for the long rant. If anyone has acupuncture info I would appreciate it.
    Thanks,
    Wayne.

  • Newdancerco author
    5 years ago

    Wayne,
    I’m female, but spent 15 years working in law enforcement as a Forensic Chemist in various states, and have picked up that mentality. This summer I was let go due in large part to my migraines (and to the fact I’m female, divorced, and not Catholic – don’t get me started on the things my bosses said about women in the workplace or what he wanted to do to people who accepted other religious beliefs).
    I am bereft, lost, without my identity. I too loved my career, lived for it, and was proud that I walked the walk, making the world a little bit safer. I’m now learning who I really am, as opposed to what I did for a living, but it is a struggle every day. I don’t want to meet people because I am still looking for a new job and am ashamed of my unemployed status. I never knew I was so shallow…
    I guess my point is that you aren’t alone in that fight, either, and we will find solid ground under our feet yet.

  • JeffB
    6 years ago

    There is a 2nd clinic that offers the same treatment but no idea where it is. You can check his site or call them. Although Brandon eliminated my migraines, I don’t believe it was the acupuncture. When he sticks the needles in you, he has you do a breathing exercise. It’s a physiology & breathing issue. (my opinion of course)

  • Wayne
    6 years ago

    Sorry….Margaret.

  • Wayne
    6 years ago

    Suzy,
    Click on Martha’s name. Takes you to her comment, then click on “read my story”

  • Suzy Snyder
    6 years ago

    I’m unable to find the “Article that saved my life”. Could you share a link?

  • Nancy Harris Bonk moderator
    6 years ago

    Hi Newdancerco,

    Welcome and thank you for sharing your story with us. You aren’t being a “downer” just expressing how you feel. Many of us can relate as migraine can leave us feeling frustrated and isolated. You’ve found a safe place with caring, compassionate people who truly understand what you are going through.

    I hope you don’t mind me asking, but do you take something every day to try and relieve the head pain you are experiencing? One of the tricky problems we can run because we just want the pain to go away is called medication overuse headache or moh. This can occur if we taken certain migraine abortive medications (like Imitrex) and/or pain relievers more than two to three days a week. If we have moh our migraines will be more difficult to treat and we can end up in a daily cycle of pain that is just miserable. May I share information with you on this topic; http://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/.

    We look forward to hearing more from you,

    Nancy

  • JeffB
    6 years ago

    I was taking 15 Imitrex per month until my drug company told my doctor I might go blind from taking so many & that most my headaches were moh. Rebound was half my battle during my treatment as well.

  • Newdancerco author
    6 years ago

    MOH and I are old friends. They feel different. Besides, I have done the “clear your system, no drugs for 6 weeks, and you will be fine” charade at least a half dozen times (I talk about it in the “Don’t Call Me That” message string), to no avail.
    Yes, I take preventatives. I’ve tried everything anyone wants to throw at it, from butterbur to Topamax (aka Dopamax because it made me stupid) to Botox to occipital channel blocks to acupuncture to massage, to chiropractic to antidepressants to calcium chanal blockers, beta blockers, zonisamide, pramepaxole, to… you get the picture.
    Yes, I take abortives. Imitrex ahots made my body go numb on the side of the shot, the pill made me act drunk. Midrin worked until they changed the formula, Maxalt, occasionally worked, benadryl and the antinausea stuff was a joke, etc, etc, etc.
    I’ve seen at least 7 neurologists and headache specialists, over a dozen PCPs, dozens and dozens of Urgent Care doctors, nurse practitioners, and ER doctors.
    I kind of assumed that it was obvious that they each out me through the wringer of tests and experiments again, not trusting the past doctor’s results, so, yeah.
    I’m going to shut up before I get sarcastic…

  • margaret
    6 years ago

    Hello…I have read your all too familiar story and I just ask that you read my story “The article that changed my life”. As a previous migraine sufferer my heart truly goes out to you. I’m a mother of a 11 and 2 yr girls and I know the struggles of working, raising a family and living with migraines. Please just know that I have gone from 15 migraines a month to 1 and am still not done treatment. Please look at the links in my story and if you have ANY questions please let me know. Best of luck! Margaret

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