I started reading Oliver Sachs’ book, Migraine. He wrote it in the 60s I believe, with an update in the 90s, so I’m not sure how outdated it might be, but…it mentions all the different types of aura’s people may have, and I realize I’m quite lucky with mine being rather rare, and fairly normal and unobtrusive in comparison. But as if reading it put thoughts in my head, I had a sort of new type of aura while I slept last night. I was woken up at 8:30 by the fact that my entire face and lips were numb/tingling as if they had fallen asleep. I’ve had those types of feelings before, but not my entire face, and not while I slept. So I got up and took some frova and tried to sleep again but I felt like that sensation lasted much longer than any other numbness sensation I’ve had before. It worried me, but nothing else seemed impaired, as if I had a stroke. While I slept for a few more hours I did have pain in the right half of my head, but upon getting out of bed I was mostly fine. I drank coffee in hope of it helping, but after that I felt super dizzy and shaky, and I don’t know if it was the caffeine or the migraine, or what. I feel very not well.
I don’t want to only post about how much my head hurts, but my head hurts. It makes me super depressed. Super hopeless. It’s been over a week. I thought I was over the hump of this particular headache yesterday, because it wasn’t very bothersome until late before I went to bed. But woke up with it back strong. On my days off. Again. With plans to see Avenue Q with a bunch of people from work tomorrow. I’m so tired of it.
I’m also even more tired of the election than before. Primary next Tuesday, and NY actually matters as neither nomination has been decided. I still don’t really know who to vote for. I change my mind constantly. I’m angry about it all, all the time. Maybe that’s why my head hurts. haha Trump is coming to Buffalo on Monday, and I really want to go see the shit show, but I’m not willing to call in sick for it. I may go photograph the crowds/protest before work. My mind is still constantly getting blown when I find out people I had respect for, or at least thought were marginally intelligent, are Trump supporters. It makes me sad.
So it goes….
So it turns out I did not “qualify” for the drug trial. My contact couldn’t figure out why because I clearly fit what they needed, with 26 out of 36 days with a headache. I’m really bummed about it. I am never going to get better.
She said there is another different trial coming up in May to try for. If that doesn’t work I’m just going to go to illegal drugs. There is nothing else for me to do.
I hate my head. It hurts all the time. I get no relief from any medicine I have taken, so I’m joining a drug trial. I can’t talk about it on “social media”, so that’s all I say (plus I don’t know anything else about it to say). On one hand, I hope it works. On the other, I hope it doesn’t because once the trial is over I won’t be able to get it anymore, or once it’s released it’ll be too expensive for me to get. Fucking US health insurance. (Of course, once President Trump makes me move to Canada, I’ll be able to get whatever I want).
Should I ever find a “cure” for my headaches, I feel like my life would change. I can’t enjoy anything. I had to leave where we were and go home to bed Wed night because my head hurt so bad. It was fine until I went for my run, then it started pounding at the end and never stopped. So now I’m scared to run again. I’m scared to do anything. It’s always there in the back of my mind, making me worry that I’m going to get a headache any time I do anything – concert, road trip, vacation, work, whatever. Headache free, I could take over the world!! Or at least enjoy life.
But on the other side of the coin, my headaches are so much a part of who I am, if they were gone I don’t know who I’d be. And if I’m honest, they are an easy excuse for me to not participate in things I don’t want to do because I’m an introvert. If I don’t want to go to a party, I can just say I have a headache, and I am probably not lying.
Today I skipped out on the St Patrick’s Day parade with J because 1. I didn’t want to go. 2. I have been so tired lately. 3. Wednesday’s headache is still hanging around, I can feel it waiting to pounce. I probably would have made myself go if not for #3, to be a good girlfriend and a good sport, pretend I’m fun and personable, but I so much don’t want to risk feeling like I’m going to die the entire day, and then at work til 5am.
I hate it. Add it into my general depression and unhappiness lately.
For Thanksgiving I volunteered to make a dessert. Since my baker friend has had several recent tragedies I didn’t want to ask her for pies, and I figured, I am an adult I can do something myself. So I looked at pinterest for a creative Thanksgiving dessert and found an Apple Pie Cake. Looked super easy, yellow cake mix on the bottom, 6 sliced apples spiced with brown sugar and cinnamon like an apple pie, crumbles on top.
I followed all the instructions, even when I thought that 6 apples seemed like a lot. Baked for 35 minutes and the cake batter was still completely raw batter. So I put it back in for 5 minutes at a time for another 15, raw. Then I gave up. The apples just didn’t let the heat get down into the cake mix. An hour later mom suggested I put it back in, so I did for another 25 minutes. Better, but raw. Inedible. Fail.
So I had no dessert to bring because I didn’t have much time to try something else. Mom ended up making an apple pie.
I got my ear pierced 2 weeks ago, a daith, because it was floating around facebook that it “cured” migraines. For 2 weeks it worked!!!! I went 2 weeks with only a few short lived very minor headaches that I could have treated with ibu, but didn’t even bother to. Well that all ended yesterday. Massive massive migraine. It’s completely hormonal, which for me means it’s completely immune to all treatment. I’m hoping that when this episode is over (I may end up at urgent care where they’ll treat me like a drug addict seeking pills, but maybe get steroids, which also are horrible) that the piercing will still continue to work on my “regular” headaches. Then I can go back to Dent and seek specific treatment for the hormone headaches. Internets had some suggestions, though the person I’ve been seeing said they don’t do hormonal treatments. I’m dying though. I can’t take it.
i really wish i was a normal healthy human. so treatment for my head continues. the nerve block failed, which turns out to be a good thing because my high deductible insurance plan means that it cost $300, a bill which i did not receive until after i would have received the 2nd shot, and thus a 2nd $300 bill. so thank god for small favors. dr put me on topamax, another anti epilepsy drug to try. i’m now on the full dose of 4 pills, with little response. the goal is less than 9 headache days a month. i am still at less than 9 headache free days a month. topamax came with a list of side effects including nice ones like less sweating and weight loss, and not nice ones like depression, tingling of the hands feet and face, exhaustion. so of course i get the not nice ones, and none of the nice ones. so when it does seem to work, and i have a headache free day, i still don’t feel good. i’m tired as hell, i am depressed, don’t want to do anything and don’t want to leave the house. if not for having to go to dice class and work, i wouldn’t leave the house, for real. so awesome. i go for a follow up in a few weeks. given that my insurance won’t cover pretty much anything, botox treatment is going to be unaffordable and thus out of the question. that leaves my only treatment options as further playing with medication. the dr mentioned adding in small doses of elavil again, which i was sort of against because stopping the elavil last time was hell, but she says the combination of elavil and topamax can really help. plus elavil being an antidepressant, maybe it would counteract being depressed from the topamax. who knows, but…i don’t know what is worse…at least when i have a headache and am not depressed i can force myself out of the house to do things. feeling headache free but without the motivation to do anything kinda sucks.
yesterday i spent an hour or so cleaning the house. sprayed and wiped the bathroom sink. sprayed and washed the kitchen counters and stove. vacuumed the tile floors, bathroom, bedroom and living room carpet (with one of those powdered perfume baking soda sprinkle products). Then washed the tile and bathroom floors, and bedroom hardwood with the sponge mop and lysol. then i spent an hour out in the garden pulling garlic, sweating to death. came back in, took a shower, and afterwards started getting a migraine.
visual aura started on the left visual field, a sort of big line right in the middle of my vision. i made some tea, took some excedrin, quickly tried to eat some mashed potatoes. they didn’t seem to help. the aura seemed to go away for a bit as i tried to watch some tv, but then it came back on the right side of my visual field. that’s never happened before. my head started to hurt and i knew i wouldn’t be able to go to work so i called in. tried to fight it, staying on the couch and watching tv but it got to be too much so i went to bed.
the pain kept getting worse. i kept having to go to the bathroom every 10 or 15 minutes, which is too often considering i only had a cup of tea. on one trip to the bathroom i realized my left hand and up my arm was completely numb. went back to bed where it stayed numb for a while before switching sides to the right hand/arm. my lips got tingly as well as my tongue, though not much, and then my teeth/gums. that’s new. they sort of felt like they were going to fall out. more getting up to go to the bathroom, more numbness that kept switching sides.
i figured i should see if i could still talk, so i sat on the bed and tried to say things. i couldn’t really think of anything to say. i tried to say “i can still talk” but it didn’t come out right (or maybe it did and i couldn’t hear it right). i believe i was using wrong verb tenses, like “i can still talked”. i kept trying to say it, and think of other simple sentences to say and they all had weird verb issues, or i’d put extra sounds at the end of words. i couldn’t say my boyfriend’s name, though i could spell it (i think!). i definitely was not speaking babble or jibberish like when this happened this badly in senior year of high school, but i definitely was not speaking right.
back to bed, i think i fell asleep for an hour or so. by 5 hours in the aura problems seemed to have gone away. my head really really hurt, there were some eye issues where they didn’t feel right yet, but the other things had straightened themselves out. i wasn’t very tired and couldn’t sleep so i actually did things on my phone and read. J brought me spaghettios and stayed for a few hours, went to proper sleep around 4am until 1pm. afraid to get out of bed, the pain is still hanging around, esp when i move or sneeze.
i’m sick. massive migraine. fever. cold sweat. i can’t sleep good to save my life. missing yet another event at the terminal. back to bed.
actually had some fun exploring today. matt and katie were in from mass. and wanted to see bct. well no go, closed until the 16th for a movie shoot. so the day brought transfig, orphanage, bmalting, and a new one for me, north office. transfig is always beautiful but i’m out of shots there. orphanage, boring. still. haha. bmalting wasn’t as interesting as i remember it from 2003, but that’s ok. north office…so wonderful. must go back soon.
i so want to call in. so tired, only 5 hrs of sleep before going out to meet them. last night work was brutal. i wanted to go home sick so badly, but i was lead on tokes. just a wicked wicked headache, and it was so hot in there. when i was telling someone that i need to do something about my headaches, that i haven’t been able to get rid of this one for 2 weeks now, they mentioned hitting the deer. and yeah…it really has been since i hit the deer that my head’s been so bad. but i didn’t hit it head on, and i didn’t even feel it hit the side of the car. i can’t imagine i got whiplash or anything from it. but still… strange. so far today, even tho i gave my granola bar to a lady who accosted us outside transfig asking for money cuz she was so hungry, no headache. but i know as soon as i walk in to the casino it’ll scream of pain. and i’m sore everywhere else now. and got some weird cuts that i’m sure will get infected from bird poop diseases etc. drowning them in peroxide haha.
big BIG plans for wednesday night. get the bail money. 🙂
victoria beckham’s – aka posh space – hair is so fucking hot…wish mine would look like that if i got it cut the same way.
i am beyond frustrated and irritated with all the terminal drama as of late. i’m not gonna get into it…just…it’s 2004 all over again, and our season hasn’t really even started yet. minus the art thefts.
i think i have a brain tumor. the rest of me feels fine now, just my head. took 4 prescription painkillers today, feel a bit high, but please please please, i beg of them, please work to finally kick this headache out. i fear it won’t work. if it doesn’t, tomorrow is painkiller detox, since i’m off and have no plans, in an attempt to stop any rebound effects. ug. i may stop taking the iron supplements, because in the past i had gotten headaches from higher doses of iron, which apparently the ones i bought are more than the ones i used to take (that have been discontinued).