Another “Invisible Illness” Diagnosis

At 28 I consider myself a “pro” with describing and dealing with illness. I figured I could handle a diagnosis, seeing as I had one before. In 2006, I was a healthy and active. Then I suddenly fell ill with terrible abdominal pains, weight loss etc. After a few horrific months I was diagnosed with colitis and began treatment for it. I educated myself about the disease and worked hard to learn how to cope with it. I even shared the information with my friends and discussed candidly with them and family how it made me feel so out of control and unsure what the future would bring. Eventually, a friend and I even gave it a name, “Stan”, so that when out in public I could communicate that I was feeling unwell without everyone knowing the issue (ex: “I have to go, Stan is calling.”) It’s much more acceptable for people to think I have an awful boyfriend or relative then to know I’m having tummy issues.

Then, a few years ago I started suffering from what I thought were sinus/ allergy issues. I would have times where my head would just be in awful pain, noise and light bothered me and I would feel ill and exhausted. Seeing how I already had a pre existing condition I didn’t have insurance and could only rely on clinics and ER rooms. I would be told that I had a sinus infection and given medication. As it became more frequent the doctors would hint that I would probably need some sort of sinus surgery after I got insurance. That, at least, gave me the ray of hope that it would end. But no…

Thanks to Obamacare I was able to get insurance and the first thing I did was see an allergy doctor. She ordered a CT scan and the results showed a deviated septum. She ordered me to an Ear, Nose and Throat doctor who took one look at my CT scan and declared “very minor… no surgery needed.” When I protested that there was something very wrong he told me to come back when I felt the symptoms. A few weeks later I was back and after an exam and listening to me he stated he felt I had migraines and should see a neurologist. Months with insurance and still no real answer. I waited a month and a half to see a neuro doctor who ordered an MRI, and into the machine I went. It showed nothing so he gave a diagnosis of “chronic migraines.” Finally! An answer… but… he put me on several medications all of which made me crazy. Topomax made me so confused I couldn’t remember what to feed my pet lizard, Imitrex made me too groggy to do anything after a migraine, Prednisone did nothing for me but gave me withdrawls when I went off and another one made me feel exhausted (something I already feel from migraines!) and unable to breathe when I was active. So now I’m at the point where I’m waiting for my next appointment to discuss my next options.

I figured when I got the diagnosis I would feel free and more in control. But that has not been the case. I’ve had between 15-17 migraines a month, some so intense that I’ve stayed in bed for 2 days. Some friends have been helpful and offered to listen but as an intensely private person it’s difficult to discuss. Even now I can’t help but cry and worry for my future. I’ve dreamed of going to Grad school, adopting a child and traveling and now I can’t help but wonder, can I even do that? This diagnosis and the difficulty of treatment has shook me to my core because it is all so unknown. How do I explain my frustration, anger and fear with others who have never been in my shoes?

Little by little I’m starting to learn. I try to remind myself that I am still new to this and to take it day by day. It has taught me to slow down and take care of me and I enjoy and take advantage of the days I feel good now. I try to think that in time things will be more clear and maybe, when it is easier, the migraines will even get a name and I will not be so ashamed or afraid of them.

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

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  • JustinMonk
    5 years ago

    I’m currently writing a book about living with chronic migraine, from patient’s’ perspectives, including telling my own story, as well as providing resources and information for chronic migraine patients. I’d love to have people who are interested in telling their stories to please email me privately at justinmonk.author@gmail.com. I would anonymize your stories, only indicating your city, state, country if you desire, or completely anonymous. I plan on publishing the book myself via amazon.com as an ebook with options for printed versions as well thru print on demand.
    The more of us tell our stories, the more public awareness we can create about this horrible migraine disease many of us suffer from, and also potentially bring greater funding and research to migraine specific treatments, instead of being given hand me down “oh maybe these 50 epilepsy drugs will work” that many of us are SO tired of. Please conraxt me if you’d like to be part of this book project. Thanks, justin

  • kaciwhisler author
    5 years ago

    I wrote this story so long ago now. I really didn’t think it would show up again, but there it is. So much has changed since then. I took a temporary disability from work, started receiving botox treatments and though it took awhile I have more of my life back. I’m in Grad school, a dream I thought was gone, I’m living closer to my family for support and I continue to get botox every 4 months or so. Sure, I still deal with migraines but so much less now. I will happily take one a week on average compared to the 3-4 a week I was having. I haven’t forgotten how bad it was (and still can be, I mean a few weeks ago I went through 4 days of constant migraines)but it’s so much better now and I don’t take it for granted.

  • CrystalB
    5 years ago

    I too have suffered from “allergies” for a few years now. I take 2 Allerga a day or I’m sick as a dog. I have done the allergy test (but have not allergies), have had 3 sinus infections this year (one was acute and I ended up at an ENT) but it wasn’t until I had the worse migraine of my life and had to stop working that it was even consider part of the equation. I take topiramate -generic Topamax (it sucked for a month but its ok now I’m fogging anyways because of the migraines) I have the worst type of migraines…intractable with a prolonged aura. I don’t drive, I have panic attacks. And now I take BP meds along with the topiramate. My goal is to never see the neurologist again.

    I am trying the migraine diet and going off caffeine. I recommend reading, “Healing your Headaches”. Just punch it up on Amazon. It is a 3 step program. I have only been on it for a few weeks but without caffeine I don’t feel as foggy. I have a long way…I know. And it is sad to see people who deal with this for years while mine has only been for a few but diet changes and drugs changes are important. Its smart. He discussed in the book about allergies…I swear he wrote the book about me. I went through a lot of misdiagnoses before coming to migraine conclusion (MS, slip disc, possible brain tumor, thyroid disease, etc.) It sucked. But he also discusses how pain meds can mess with your preventatives and not let them help your situation. I hope this helps. I too have a hard time being open about my situation because I’m a private person too but I’m learning lots of people are suffering from migraines and there isn’t a lot of knowledge about it out there.

  • Achinghead
    6 years ago

    As Arden stated, you have to give each new drug several months to see if it will be helpful. Using it for a short while is not long enough to truly find out the benefit of the drug.

    I would strongly suggest that you try to find a Headache Specialist in your area if possible. They are Neurologists who only deal with patients who suffer from headaches. They keep up with the very latest in prevention and treatment of migraines and other types of headaches.

    I have been working with a Headache Specialist for the past 2 1/2 yrs. She has helped me to work through trying various medications to find the right preventative for me, as well as the correct triptan for me (I had several TIAs which limited what I could take). She also educated me in the proper manner to take the triptan, at the very beginning of a migraine, or it won’t work.

    I wish you success in finding the best doctor, medication, etc to reduce your chronic migraines.

    I did eventually have to have nerve decompression surgery for my migraines. I have gone from 30 migraine days a month to about 20, and it’s only been 3 months since my surgery. I expect further improvement.

    Go luck!!

  • arden
    6 years ago

    Nothing to be ashamed of and fear will only worsen the condition. Use your intelligence to research, ask, evaluate until you find some solutions for yourself. There is no “cure” so you have to be willing to experience a small side-effect if it is less annoying than having a migraine! Imitrex at the first sign and in smaller doses has helped me avoid a baddie.
    There are so many possibilities available. Dont get your hopes up on every kooky idea that crosses your path, but be willing to try things for at least a few months before discarding.
    Check your diet, your mealtimes, your sleep habits, your environment – all of these things can play a part. Above all, dont get discouraged or depressed. I’ve had migraines for 55 years and there ARE ways to improve your condition. Its not the end of your world.

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