I am incapable of being brief, so please excuse my verbosity here. I have a history of fairly minor migraine, going back about 20 years now (mixed-tension migraine, my NP said), easily controlled and rarely more than annoying. The times I was wiped out in bed for hours at a stretch were very rare, thankfully. Mainly I’d just get light-headed, spacey, and very tense in my neck and back, frequently accompanied by photophobia and head pain, but not always. Maybe an average of 12 migraines a year, too, so it really wasn’t bad. No medication needed. Then in mid-April of this year (I think; my time sense was murdered and buried in the back yard by this god-awful brain fog) I developed a bad case of shingles. Uncomfortable, yes, but I knew it would end so I just got through. My husband was able to fill in when the nerve irritation got too bad, especially when it came to cooking for and managing our 6 year old twins. And when it was over I had one glorious day where my nervous system worked as it was supposed to. Then… it just went crazy. I had two days of increasingly bad dizzy spells and then I was just laid flat one morning over breakfast pancakes, and it didn’t stop.
For two weeks I had persistent, active vertigo and could barely get out of bed. I was on medication to control the nausea and was just slightly more useful than your average house plant. I couldn’t look at my kids because they were just constantly moving and it made me overwhelmingly dizzy when they would gesture or shift their feet all the time, and there were multiple times when my husband had to intervene because I just couldn’t process what they were saying anymore or became overwhelmed with the constant auditory and visual stimuli and had to decide between yelling at them to just STOP or bursting into incoherent tears. I hated myself a lot. They had already been without normal mommy for a month with the shingles, and now I had trouble being around them for a new, much more confusing reason. At least with the shingles I could show them the lesions and explain that it hurt to be touched. It was harder to explain that my brain was being overloaded because of something as abstract as “vertigo.”
Eventually I was able to walk around more and vaguely function. You know, fold laundry sometimes, cook sometimes, that sorta thing. I moved through doctors quickly, each one helpfully crossing off possibilities and then passing me on to someone more knowledgeable. After about 2 months I got the formal diagnosis of VM, and my neurologist says that from what she can tell from my history I was actually suffering from chronic migraine for a while, probably years, and hadn’t realized it. Joy. I started nortriptyline, vestibular therapy (the only reason I am able to function at the level I am currently, which I know because if I miss one of my 2x daily exercise sets I start to backslide noticeably), and cut out the short list of common triggers I was given from my diet.
I got better, to about 90-95% normal, but I backslide frequently, had to start a second medication a little over a week ago because I’m still not where the neurologist thinks I should be, and have picked up a second physical therapist (to work on strength and flexibility in my neck, because there seems to be neck involvement somehow), and have an appointment in mid October with a neuro-optometrist (I didn’t even know that was a thing!) because my new PT thinks my eyes may also not be tracking properly anymore.
I also bought a copy of “Heal Your Headache,” and have tried to start following the dietary recommendations there. But I am feeling very overwhelmed and stressed. My daughter, when she was 3, was diagnosed with a metabolic disorder that requires daily medication and dietary restrictions too. Those restrictions, like the ones for migraine, are not obvious and intuitive (she needs to avoid high copper foods) and requires careful balancing. She, at least, is thrilled that I now have to avoid chocolate and nuts like she does, and also that for once she can eat something someone else in the family can’t (pizza in this case; which we make at home every Sunday), but there are a lot of other things that are polar opposite requirements in our diets now. Add to that my husband’s nightshade allergy, my son’s refusal to eat leafy greens (except for small amounts of raw spinach sometimes), and the fact that my kids are 6 and therefore go through frequent picky phases… and I just want to lie down and give up. I won’t, obviously, but that’s how I feel. Ya know, I had thought my days of crying in grocery stores and stressing out over “safe” and “unsafe” foods were behind me. I guess not.
It doesn’t help that 3/4 of my current diet is out and that I can now safely say that one of my triggers is a drop in blood sugar levels (I’m not diabetic so I’ve never really considered my food’s glycemic index before). Got a migraine the other day after eating a home-made hash brown, and yesterday from a “migraine-friendly” white flour biscuit I made. I always knew too much sugar would get me on an empty stomach, but my sensitivity has gotten ridiculous. I know there isn’t any choice BUT to figure this out, but I honestly have no idea how it’s going to happen.
Anyway, that’s where I am right now. Most days I can focus on the positive, but today and yesterday have been rough. Just reminding me how quickly my life can be snatched away again, and how awful I can feel sometimes because of this condition. So I figured that rather than stare anxiously at my (mostly blank) meal plan or totter dizzily around my house I would look into online support networks. I’ll feel better tomorrow, and I have been seeing a therapist for over a year now anyway (we learned last year that my daughter may have another disorder as well, and the options of what it could be include some that are untreatable, painful, and probably fatal if she is developing them young; but we won’t know what she has, if anything, for months or even years, until she develops more symptoms, so dealing with that particular Sword of Damocles at least gave me an at-hand support network for this, so… silver lining I guess?), but today I’m pretty low. I probably shouldn’t post an intro story when I’m feeling low, but, hey, I’m sure dumber decisions have been made before, yeah?
Anyway, thanks for reading my novella, and maybe I’ll see you all around the forums.