When I was first diagnosed with Behcet’s disease, I did a TON of research.
And not just any old WebMD research either. I went to the big names, the legit sources:
I quickly became proficient in medical research language. Thank God for the numerous research papers that led to my English degree!
See, I didn’t want someone telling me what some study said. I wanted to see it and understand it for myself.
Nowadays, I really don’t do much Behcet’s research unless my rheumatologist and I are thinking about a new treatment or I have some strange symptom and wonder, “Is this X, or is this Behcet’s?”
Like last Saturday. I woke up with a thunderous headache. I remember drowsily putting an extra pillow over my face to hide the sunlight streaming through my windows so I could go back to sleep. And of course, my dear friend fatigue who has really overstayed his welcome lately, was keeping me in bed.
Now, my first thought was, “Man, when I forget my night meds, the headache isn’t normally this bad.”
My second thought was, “Shit… light sensitivity… is this the beginning of an eye flare?”
Once the fatigue loosened it’s grip just enough for me to slide out of bed and slither downstairs, I made myself breakfast (granola and almond milk–the breakfast of rare disease champions) and a strong cup of tea.
I have to eat before I take my pills. Trust me, I learned that lesson the hard way. And, since my body demands some caffeine to get started, I figured this was another way to try to stop the headache.
Once my stomach was full enough to not rebel, I took my meds and waited…and waited…and waited…
No change. I continued laying on the couch because being upright just made the world spin and my head throb. Plus, my aching body and joints preferred being horizontal anyway.
I refused to open the blinds and kinda half-watched TV while fatigue and worry kept warring in my brain–along with whatever else was wreaking havoc up there.
“Could it be a migraine? I’ve never had one before… I know people with Behcet’s often get headaches… but this isn’t like those tension headaches I get on the regular… I hope this isn’t the start of Neuro-Behcet’s… Crap! Is it that type of meningitis my neurologist warned me about?”
So I bent my head forward, feeling a nice stretch on my neck, but not shooting pains down my back. Phew! It wasn’t meningitis!
I started searching “behcet’s headaches” on good ol’ Google to see what I could find.
Can I just pause and complain about how sick and tired I am of so many sites that just give the basic summary of Behcet’s with NO details?! Ugh!
It’s a waste of time! We don’t need another site telling us what we already know! We need a site to tell us what we don’t know!
And then… I found it.
This blog is a treasure chest on the useless beach of Behcet’s searches!
Written by Joanne Zeis, a women who is living with Behcet’s and has published a few books about the disease, Essential Behcet’s is a certified El Dorado of legitimate, authentic, specific information!
- Updates on clinical trials
- Information to get involved in new clinical trials
- Abstracts and links to research papers
If you have a Behcet’s question, I bet this blog will point you in the direction on an answer.
I know it did for me!
See, as I read research papers about headaches in Behcet’s disease (which, now that I think about it, could have actually been making my headache worse…) and looked up the different types of headaches and how they compare with each other, I realized that there was a good chance Behcet’s was causing this headache.
It was the right kind of throbbing pain. And when I could finally take my trusty long-acting NSAID, the throbbing slowly dulled, even if it didn’t go away completely.
Fatigue eventually dragged me back to bed, and once I woke up from a long nap, I did feel better, though not 100%.
Now, does this mean I have full blown Neuro-Behcet’s, that diagnosis we all dread? I don’t think so. But it’s something I’ll be talking about with my rheumatolgoist and neurologist for sure!
In the meantime, I can do my research, stay honest with my doctors, and just keep on listening to my body.
Because a lot of times with Behcet’s, that’s all you really can do. I’ve always said I hate being bored, and man, Behcet’s does have a way of keeping you on…or rather off…your toes.
