New Diagnoses: Resisting the urge to Google

“You might have central nervous system Lyme disease,” a doctor told me last week. After a few migraines last fall, I developed daily migraines that haven’t left since January. Because of the sudden onset, doctors have been trying to figure out if there’s a root cause or if I have migraines simply because I have migraines.

Sinus infection. Allergies. Brain clot. Leaky aneurism. Brain tumor. PTSD. Pseudotumor cerebri. Pituitary tumor. Poor posture. Hashimoto’s. Celiac. Heart leak caused by Ehlers Danlos. Vascular abnormality. Computer screens. Cushing’s syndrome. Parasites.


Riding the migraine merry-go-round of diagnoses, I’ve been careful to inspect every pony passed my way. Whenever a doctor tosses me a new disease to try on for size, I diligently open up my browser and search. I try to focus on credible sources, opting for the mayo clinics of the web over the webmds.

In some ways, my searches have been helpful – I’ve learned more about migraine than I thought possible and I’m becoming well versed in the language of the disease, largely with the help of this site. I go to my doctor appointments armed with a list of questions about medications and treatment.

For the past seven months, all the tests came back negative. This brought immense relief, and the relief was always buoyed by the fact that I had could pause the restless nights I had spent fretting over the eventualities of my hypothetical disease.

Now back to my most recent doctors visit, where I was told that I’m positive for Lyme. I now need a spinal tap to determine if its central nervous Lyme, creating the neurological symptoms, or if its classic Lyme disease that triggered migraines I’m genetically predisposed to have.

And so now, against all natural inclinations, I’m resisting the urge to Google. The vast sea of knowledge accessible online can be an amazing resource, but it can also be an impediment to recovery. While trying to navigate the grey area between disease literacy and worst case scenario expertise, I’ve realized that, for me, Dr. Internet might be breaking rule #1: do no harm.

So I’ve momentarily sworn off Google and I’m wondering – Have you puzzled doctors with your symptoms, and received a variety of scary potentialities? What are your techniques for arming, not harming, yourself with knowledge?

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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  • Katie M. Golden moderator
    4 years ago

    Carrie,
    So sorry you’re going through this. I feel your pain. I went through the same thing when my Migraines turned suddenly from episodic to chronic. I searched for the root cause by visiting every specialist I could find. After a year, I was unable to pinpoint a specific cause so I switched my focus to trying to managing the Migraines.

    Not only can Dr. Google be scary, but advice from all your friends who think they are being helpful. I try to say thank you for the advice and then continue on my journey. The only real advice I can give you is that unfortunately you have to be patient to go through the trial and error process. And each person has to go through their own journey- do it at your owon pace and don’t let others tell you what to do-only you will be able to determine what is right for you.

    You do now have a potential cause of the headaches and that
    S promising. But in the end, it won’t change the fact that you still have Migraines, so until you know for sure, don’t spend the precious time you have worrying. I think your approach of not googling Lyme disease is good until you know. I hope you find out soon and only then will you be able to really come up with a treatment plan for you.
    -Katie

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