It’s been about a month since I wrote a decent update. I’ve been trying to keep my readers entertained with short posts, NY Times articles, and reblogs of others’ writing because I have been in a sorry state ~ mostly because of crippling headaches. I think I’ve said it before: bad headaches are, to me, the number one most evil and debilitating symptom of this disease. I’ve written about them before here and here and here. Don’t get me wrong, PEM is by far the most disabling and cruel aspect of ME (I will write a rant about this one day), but, it is somewhat controllable… Muscle pain can be beyond everything you’ve ever imagined… I’m sure vertigo, if bad enough, would be as incapacitating as these headaches… The complete loss of life force when your mitochondria simply can’t keep up with the energy needs of your organs is more handicapping and terrifying… But, none of those, in my experience, blot out existence like the headaches.
Not only do the headaches affect me, but my family has to tip-toe around, talking softly, closing doors carefully, opening soda cans outside, watching tv with headphones, jumping up to distract the dogs when they bark. One of my neighbours had their hardwood floors sanded and varnished during the last few weeks and I stayed inside with doors and windows closed, griping about the fumes tearing at my brain. Another neighbour seems to have purchased the loudest weed-whacker available and insists on using it on the patch of grass closest to wherever I happen to be sitting, whether it’s in the front or the back of our garden. I texted my husband (who was nearby, but I can’t yell out with this headache and I always try not to get up needlessly because of ME): “There is a $100 bill in my bag. Please, please go give it to whathisname and bribe him to stop that noise. When I get better, I’ll do his yard work for the rest of my life. Can you die from noise?” My husband reminded me that we have the loudest dog on the planet and, so far, nobody has given us any grief. So, I kept the $100 (a birthday gift) and turned my attention to being grateful I don’t live next to the airport or a nightclub or a war.
The headaches alternate between throbbing aches and all-encompassing migraines with blinding auras. They are always accompanied by extreme noise and light sensitivity and never able to be touched by medications. On a day like today, I am able to function, but, as the hours progress, I become more and more grumpy, silent, and still. My body tenses, brow furrows, and I stop being able to communicate. On middling days, I move very carefully, I can try to interact wearing earplugs and sunglasses, staying well away from phone and computer screens. And, on the worst days, I can’t leave bed, I can’t speak or see very well, I have ice packs on my neck and eyes, I pant, I sweat, I moan.
This current journey into headache hell started 22 days ago. The worst of it was a few weeks ago and caused me to stop taking all drugs and supplements in an effort to abort the pain. The multicolored, zigzag aura disappeared and the headache lifted enough to function, but, even today, it’s still a doozy. It is the first thing I noticed before opening my eyes this morning. Ugh, headache is still here.
I had quite a few theories. It started with my period, so I thought it was hormonal, but has continued too long. I started Nasonex about a week before the headache came, so I stopped that (and won’t try it again now that it is “tainted” in my mind), but I’m still suffering 2 weeks later. I thought it was from stopping Pantanase nasal spray after using it daily for a year, so I started that again. I thought it was from the new bottle of Chinese herbs (which looked and smelled vastly different from the previous bottle), but I stopped taking them for 4 days with no respite from the pain. I thought it was from overdoing it in general, so I rested a bit more ~ to no effect. I thought it was due to my chronically messed-up neck, so I used my traction device, my tens unit, tiger balm, hot pads, cold packs etc. Nothing. From sitting in the sun? No, it’s still here on cold days. From being on the computer? No, it’s still here on days that I’ve mostly avoided the computer. All the strawberries I’ve been eating lately? No, I haven’t eaten any in over a week. I refuse to believe there is no reason. I don’t want to take prophylactic migraine drugs. I just want it to go away. So I can continue to enjoy my exhausted, stiff, achy, fluey, brain-fog-filled summer days.
I have a lot of other stuff to report on, but it’ll have to wait. Apparently, it was far more important for me to get some company on this brain pain train. Thanks for joining me!
Rag and Bone Shop of the Heart 
I’m totally with you on the brain pain train. I suffer from awful headaches too. They go on for days and weeks. Like you I can feel it’s there before I ope my eyes in the morn
LikeLike
(Caught send by mistake sorry!) morning. My doctor thinks they are the result of contracted muscles and trigger points in my neck. Repeated tension headaches lower your migraine tolerance threshold which results in the blinding crippling all consuming migraine headaches that I suffer from and that you suffer from too. Great post, glad you’re back writing. You’re definitely not alone on this train. I love your Barbie picture, that’s exactly how my head feels a lot of the time too.
LikeLike
That’s interesting. I could absolutely get on board with these headaches being something to do with my neck. I just don’t know why they go away for long periods of time. Did your doctor recommend anything for yours? I’ve been told that botox injections work wonders for tension headaches, but, if I’m hesitant to take a painkiller, I don’t know if I could feel comfortable injecting botulism into my body!
Maybe we feel like Barbie, but that smile is a teeth-grinding grimace!
LikeLike
He wants me to have some physio on the trigger points in my neck and shoulders in the hope that will relax everything and therefore ease the head pain. If that doesn’t work he did say something about injections tho I’m not sure what it would be injecting. I do take painkillers, not that they always help, but like you, I’m not sure about injecting Botox or whatever it is into my body, seems a bit extreme but equally my headaches are extreme and I would really like them to stop! Will let u know if the physio is successful, keep your fingers crossed!
LikeLike
At least with the fatigue you can sometimes be too fatigued to worry (or even think) about it.
With head pain there is no escaping it – with pain in extremities you can distract yourself from it but when it is your brain that is hurting there is no distracting from it. I count my blessings that I don’t get migraines.
Fingers crossed that it disappates soon.
LikeLike
Thank you for your finger crossing. I’m convinced putting that energy into the world helps ~ even for people we don’t know, half way around the world. I will keep my fingers crossed that you NEVER experience migraines.
LikeLike
The headaches are the cruelest part for me too, You can get around the fatigue by lying limp on a couch or in bed doing nothing and I use meditation to help with the muscle and joint pain but there is no escaping the headache brain train. My husband knows the days they are worst as I suddenly go quiet and spend the day placing a finger on my lip when he attempts to talk. When they first started I thought if I slept they would be gone when I woke up but I quickly realised its possible to go to bed with an horrific migraine and finally when Ive passed out to wake the following day with an even worse one. I hope your train lets you off at the next stop.
LikeLike
Exactly! You described that perfectly. So sorry that you also suffer from this awfulness. I dream about cranking music up and throwing my head around. 🙂
LikeLike
I think of you constantly and hope mr. Gargoyle can help fight off this horrendous headache!! Love you❤
LikeLike
Thank you so much, honey! Your support and thoughts mean EVERYTHING. The gargoyle is doing his damndest; it’s a big job. 😉
LikeLike
I can sympathize so deeply with the desperate search to figure out what you might have done that’s triggered The Horrible. I’ve been going through something similar myself this past week (not headaches, but my own variety of sudden unpleasantness with unexplained cause), so it was fitting to read this post when I checked in with the computer again. So sorry to hear the crushing headaches returned. I was so happy for you when they seemed to have died down for a while.
LikeLiked by 1 person
I’m not allowed to look at screens after 7pm and it’s past 8 here, so very quickly: Yay! You’re okay! I hate it when my blog friends are gone for weeks and weeks… I’m about to do a Metta/Loving kindness meditation – I’ll send it over to you. May you feel safe, find joy, be pain-free and be at peace (my versions). X
LikeLike
[…] my brain pain train morphed from the high-speed TGV** to a kiddy carnival choo-choo. It still comes chugging through my […]
LikeLike
[…] leave my job and, three months after that, I became housebound. Symptoms have shifted and changed: Pain and sleep dysfunction became my biggest concern, the sweats eventually stopped and the pain abated, […]
LikeLike