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Faking it to Make it- for too long

Faking it to Make it- for too long

To explain how profound my loss, I must first explain what I once had. I had a brain that was amazing. I had friends and family who respected and trusted my words and decisions. I had been placed in honors or gifted programs my whole life. I didn’t get my first migraine until I was a senior in college. It was a classic with a visual disturbance and pain 20 minutes later. I asked my pharmacist for answers and prepared for the future. I went on to be top of my department in grad school with only a few migraines in two years. I did start getting a bunch of headaches toward graduation, though. How do I know? My friends pointed it out. I was too busy writing a book for teachers of immigrant children and doing work for the State Education Department. I was hot stuff. Right! What a perfect time for the universe to give me a reality check.

The summer after I graduated, I was back in my home town to start my first teaching job, set up an apartment, and help my sister get ready for her wedding. One morning in August, I woke up with a level ten, fully formed headache. I had been dreaming the aura. I had a blindness in one eye. Shortly after waking, I vomited. I tried to treat this as a migraine. It didn’t work. I became less capable of making good decisions. I also became much slower at processing through my senses and my humor disappeared. I tried to do the new teacher orientation. I can’t say I remember it. I do remember the terrible bus ride they made us take where I tried not to vomit on everyone. When I got off the bus, I drove straight to the hospital. I was admitted for a week and a protocol was used, but no one could help me.
I had that terrible headache for seven years, night and day, with no break. I saw more doctors than one person should see in a lifetime. I don’t remember my sister’s wedding, though I was the maid of honor.

Finally, someone decided (“what the heck?”) to try a spinal tap. So much fluid came poring out of me, they didn’t have enough containers to catch it. I had/have, by the old term, pseudo tumor cerebri or ,as it is referred to, IIH. Forgive me. My brain cannot remember what that stands for. But I can tell you that the reason it wasn’t caught was because every time a doctor looked into my eyes to check the pressure, it appeared fine. There was no swelling of the optic nerve. I hope I said all of that right.

It seems like a good place to say: And they all lived happily ever after. Except we didn’t. Of course, you know this was a family affair now. All were involved. After so much continued pain, handfuls of new drugs from each different doctor, weight gain from the drugs, side effects endured, jobs lost, self esteem crushed, sleep cycle ruined, etc. (honestly-do you really need me to go on? You’ve been there.). I was a mess. I got put with a doctor that new my condition and continued the spinal taps. But then I began to break down everywhere. I’d like to ask the community about that sometime, but for now I will say that the biggest new problem I faced became chronic migraine and trying to exist with this new illness. I decided long ago that I would not have children. I would not risk passing the horrific gene combination I own to anyone. That also meant no more men. I could barely take care of myself, let alone date and possibly let down someone looking to have a family. I have two rescue cats and they are almost more than I can take care of. They are not peaceful and calm. Like many of you I fake it as much as I can at my job so that I can continue to keep the health insurance that helps to pay for my care. I do not want this life. I cannot think. My family doesn’t trust my choices or decisions. I will never be smart and quick and sparkling with personality again.

What I am good at is being an at home movie-critic, microwave chef, e-book reader/editor, and internet shopper.

Thank you for reading my story.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • lissamill
    2 years ago

    Let me start by saying I’m so sorry you have to endure this. I’ve had chronic migraine with constant pain for the past 5 years. From your story, I truly relate to your schooling experience. I’m 21 years old and studying to become an early childhood teacher. I’ve always been a top student, but since the migraines it is incredibly difficult to function at top level. It’s even more difficult to be in a field placement with screaming preschoolers. I’ve known I wanted to be a teacher since I was 12. Is it possible with chronic migraine? Why should migraine take away our lives and our personalities and our plans?
    I will keep you in my prayers and I truly hope that something improves for you. Keep us posted!

  • sick-of-it author
    2 years ago

    Thank you for your note. However out of my whole story, you seem very focused on my choice not to have children. August was the 17th anniversary of the day I woke up with the excruciating headache that did not end for seven years. It was caused by a rare disease that only 1 in 100,000 get. It is considered an orphan disease because there are no telethons or big drug companies dedicating time and resources to medications or treatments. I am even more rare because when the doctors look in my eyes they do not see the problem, as they should. They should be able to diagnose increased pressure. I made the decision before developing chronic migraine and, now, many other problems to resist passing this on to future generations. Even if the chance was one in a billion, it would stop with me. Does that make sense?

  • Trisha27
    2 years ago

    I can relate to your story, but please do not give up on having children! I started my migraine journey when I was 36 years old. I am now 58 and still have migraines. No one in my family that I know of has migraines but me. There is hope since I have two children who do not have migraines yet! One is 25 and one is 30. I will confess, it was not easy to raise them with migraines pounding at times in my head. It was so worth it. I did not ask my husband for help. I was a great actress! Now I do tell him, and he does try and help me. My children give me so much joy at times when migraine makes life very dark. Once when my son was 6 or 7, he drew me a picture with a heart, telling me he hoped I would feel better. It made my year. It made me stronger. They both are fine young men. I did not ruin their life because I suffered with migraine. Both are more sensitive to others suffering I believe. Please do not give up! You may not pass migraines to your children. Your migraines may have years that are better than others. Take that chance, it is so worth it! Good luck to you.

  • sick-of-it author
    2 years ago

    Trisha27, I replied above. Thanks!

  • Amanda Workman moderator
    2 years ago

    You’re story sounds so much like mine. My chronic migraine started while I was finishing up my college and nobody took it seriously because they said it was just stress. It is definitely not an easy life and I am so sorry that you are having to deal with this life as well. It can be so frustrating at times. You can make it though. I do hope you know that. I met my husband after being chronic and while we are not having children (he has some from a previous marriage), we still have a successful marriage. I want you to know you’re not alone. I’m always around as are many others with the team. You are not alone. I’m sending you much love and strength
    Amanda Workman (Moderator & Contributor)

  • John1381
    2 years ago

    My heart also breaks for you. We have also decided to not have children for fear of passing on chronic migraine. It is prevalent in our family. I feel so sad for not being able to give my wife what she would dearly love.

    Thank you for sharing your story.


  • Marijo
    2 years ago

    My heart breaks for you! I have only recently been diagnosed with migraines. Your title about faking it intrigued me so I had to read it. I believe I was faking it for a long time. May you have an opportunity to find permanent relief!

  • Erin
    2 years ago

    I an so sorry. My life started going that way 15yrs ago. Before that I was awesome. My brain worked so well, and fast. Now I forget my thought in the middle of a sentence. It has gotten very scary. I want children. But possibly passing these killers on is a horrible thought. I wish I had a man in my life. Right now, I have no one. Two rescue cats have saved me. I love them both dearly. Again I’m sorry this has happened to you. Hang in there, you are not alone.

  • Jojiieme
    2 years ago

    Oh gawd I miss my memory. 🙁 I know it’s there in my sorry mushy brain, I just wish I could access the bits I want, and get them to work properly, when I want them to – not haphazardly, and not at 3am when I’m trying to sleep!
    But then, all of a sudden, I’ll have wonderfully clear days like last Friday – I woke up knowing that it was August 25th, so meant it [schoolfriend’s] birthday, and also the plumber was due… I’ve been trying to remember that friend’s birthday for over 31 years!!!! And today I’ve just remembered another’s!
    (Still can’t do math, though…)

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