May 2015

Well, March had 27 headache days.  It was absolutely miserable.  April had 18 headache days.  (Of course, I still haven't gotten to the point where I have no head pain, but I'm not counting days with mild head pain.)  The first half of May has been a bit better, with 5 full-blown migraine days, but many days with moderate pain- usually a tension headache that feels like it could turn into a migraine any time.  I'm still being triggered by perfume and weather.  When a low pressure front comes through, a migraine is always triggered.  The weather migraines are intractable, so I just have to ride it out.  Then, still plenty of the migraines still have no identifiable cause, but may be related to my cervical spine or muscular issues.

I've been busy seeing doctors in the last month or so.  My feet became quite painful again, so I had to return to the podiatrist.  He added pads to my insoles, which actually made the problem much worse, and I could barely get around my apartment.  I'll be returning this week, hopefully to get new insoles made.  There's nothing obviously wrong with my feet, so he's calling it arthritis and maybe degenerative changes.  Probably another thing to blame on the EDS.

I need to go back to my allergy/immunology specialist to keep working on my mast cell issues.  I have developed a new sensitivity to sesame oil in the air.  The reaction is very dramatic, and very similar to my response to the hardwood floor lacquer.

I'm also seeing a new neurologist to work on my migraines.  She is board certified in headache medicine and vascular neurology.  So, she's definitely a good doctor to help me with this.  She's also endorsed by several headache foundations.  I've seen her once, so far.  We have a few things we've decided to try.  First, I'll be trying Nortriptyline as a preventive.  I've tried Amitriptyline before, but Nortriptyline may cause less side effects, so it's worth a try.  Next, we're looking into trying Botox again.  It's been quite a few years since I tried it.  I'm working with the doctor's office and my insurance company to get coverage approved for it.  So, I'm not sure exactly when I'll get it scheduled, but maybe within the next month.  Finally, the doctor is trying to arrange for me to try Transcranial Magnetic Stimulation.  (More information here: http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm378608.htm)  It's a really interesting possibility!  But getting insurance to cover it may be interesting.  I would need to see a specialist in Chicago for that treatment.


Despite all of these challenges, we are planning a trip for memorial day weekend.  I'm super nervous about it.  Traveling is a big challenge, and with all of my sensitivities, it will be even harder.  But, we'll give it a try and hope for the best.  So excited to visit my brother and his wife in Boston!  Just nervous, too, of course.