This is not going to be a cheery post. I am not feeling very cheerful; the opposite, in fact. I am feeling sorry for myself and I'm just going to accept that it is how I'm feeling right now. Not to be a Debbie Downer, but I have spent the last month in a constant migraine cycle. April was nothing but RAIN or impending rain or wind or shifting barometric pressure from high to low. One full day of sun, I think. I don't know. I am weary and worn out.
I woke up thinking that having migraines is like being in an abusive relationship. But now I think it's more like having an abusive boss from the corporate office. I don't know when he'll show up to ruin my day, my plans, my life. I don't know how long he'll be there--just for the day or the whole week? Will he usurp my weekend? I don't know how badly I'll be beaten up or if it will just be a low-grade stress and pressure while I'm just trying to get through my day. I don't know how long it will take to recover after he leaves. The only thing I know for sure is that he is always there in the background. Having migraines is like a fulltime job that I pay for and that I can't quit. And everything works around it: my home, my work, my relationships, my life.
And so then I try to placate the "boss" to make him go away or better yet, prevent him from showing up. I bargain: maybe if I stop eating gluten-sugar-bacon. I should eat more greens and phytonutrients. I should be vegan. No, I should be raw vegan.
No, you need an ancestral diet. Paleo is the way to go.
Have you tried Keto? It's the new Paleo.
Have you tried Carnivore? That's the true ancestral diet.
I should stop drinking coffee because caffeine is bad. No, wait, caffeine is good because it helps to constrict the blood vessels in the head. It improves the efficacy of medications. No it's bad because it's a bean and has lectins! Switch to tea--but not black tea, green tea. That's healthier. No wait: NO tea! Because: OXALATES!
I don't eat grains or legumes or nightshades or nuts or seeds--because: gluten, lectins, oxalates. I also don't eat ruminant animal products, including dairy, and my beloved BUTTER, because I have Alpha-Gal.
I don't eat food dyes or additives, processed foods or artificial anything. Things labeled "natural" are also suspicious. I got called "racist" because I said I don't eat Chinese food because MSG gives me migraines. I also don't eat taco seasoning or fast food; none of which makes me racist or anti-American for that matter.
"MSG reactions are just a myth and it is safe to ingest." Thanks Dr. Random, prolly paid by the food industry. My occiput and body beg to differ. Medical gaslighting, much?
I've been asked, "Have you tried __________?"
Acupuncture?
Yoga?
Pilates?
Exercise?
Meditation?
Reiki?
Balancing your chakras?
Affirmations?
Vision boards?
Vitamins?
Magnesium?
Electrolytes?
Magnets?
Massage therapy?
Trigger point therapy?
Regular therapy?
What's wrong with you?
There's nothing wrong with you.
You're just stressed. Stop being so stressed.
You're anxious.
You're depressed.
You're squirrely.
The judgey-ness from people who don't know me--and worse--WAY WORSE! People who do:
I'm ditsy.
I'm spacey.
I'm stupid.
I'm lazy.
I'm irresponsible.
I'm unreliable & undependable.
Accordingly, I should:
have more discipline.
have more willpower.
"build habits like a monk." Yes. Direct quote.
Thank you, Captain Toxic Positivity. I'll get right on that. As soon as the room stops spinning and I can walk again without running into door jams or tripping over my own feet. To quote a line from Sherlock:
Is it nice not being me? It must be SO relaxing.
And so I apologize:
Sorry I cancelled ______.
Sorry I missed ______.
Sorry I can't go to the ________.
Sorry I'm a bit hazy, what did you say?
Sorry I don't remember. Yes, you just said it. Yes, I forget. Yes we talked about it yesterday/last week/whenever. No, I don't remember. Ask me when I can think.
Sorry I can't talk. Words are hard right now.
Sorry, I'm yawning. It's me, not you. No really, it's a symptom in the prodrome phase of migraines.
Sorry I offended you. It really is a symptom and still not about you.
Sorry. Sorry. Sorry.
And then my life is endless catch-up for all-the-things I missed or didn't do. But I can't do too much. I can't overdo it or push myself beyond or I will get another migraine. So I pick The One Thing, the priority for the day or the week or the month. I make a list of things I can do during semi-functional times when I'm not knocked out and in bed. During a migraine, I can't do dishes because of the smells, the noises, the light reflecting on the chrome of the tap. Dishes are very confusing. So is laundry. So is anything that seems like it should be automatic that I've done all my life.
And then there's the brain fog. Hence, the "ditzy-ness." Paperwork? Math? Forget it. I'm just trying to stay vertical and not throw up.
I have to assess: Do I have the energy? Because it's not time management, it's energy management. And it's not just that. On heavy days, my body literally feels heavy. My toothbrush is heavy. Imagine if your toothbrush weighed 30 lbs. Would you think twice about brushing your teeth? Walking feels like I'm wearing a lead suit, or a 50 lb. backpack full of rocks. Like they do in boot camp. Only there's no back pack and no rocks, just my body that is doing its best to move.
But yeah, thanks for the advice to exercise. I'm also fat. Should I "eat less," too? I don't know how much more "less" I can eat without becoming an air fern.
The last time I wrote about migraines was in 2012 when I had hit another low. So much has changed since then, and so much has not. While I have a greater understanding of migraines, it hasn't changed the fact that I still have them.
Here is what I've boiled it down to in terms of causes & triggers:
I have a history of head & jaw injuries (structural).
Weather: sudden temperature changes, increase or decrease of barometric pressure, or windy days are a guarantee that I'm in migraine territory.
Bad dental work: caps not filed down enough that offset my jaw for years.
Toxic mold exposure.
Multiple chemical sensitivities.
Apart from the Alpha-Gal diagnosis, nothing else shows up on a blood test. This has led more than one doctor to tell me that there's nothing wrong with me but "take these anti-depressants." I have declined.
I've had 3 MRI's over the past 2 decades that say the same. My CT scan a few months ago was "unremarkable."
Here's what I think about these "normal" tests:
They aren't measuring or gaging the right thing.
Just because it doesn't show up on a test, doesn't mean it doesn't exist. Before blood tests and scans became the standard for treatment, doctors actually had to listen to their patients and pay attention to their symptoms. Tests weren't the sole provider of information.
The person reading them doesn't know what they're not seeing. "I see nothing wrong, therefore you're normal and healthy."
That last one is what now gives me hope. Dr. Kevin Smith is an ENT who has discovered a connection between migraines and having a deviated septum. He routinely sees things in CT scans that others miss. I know from my most recent MRI, that I do, indeed, have a deviated septum. So I am guessing that he will see something that the radiologist missed. The radiologist is looking for tumors or fractures; not the miniscule artifacts or bone spurs that Dr. Smith knows to look for.
So, I will conclude this on a less Debbie Downer, more Hopeful Hali note. Here's a video of Dr. Smith:
Here's a recent interview:
I especially appreciate what he says about the trigeminal nerve! Like I said, Hopeful Hali. :-)
