The Alternate Lexicon
Currently viewing the tag: "migraine"
…is that I like spreadsheets, organization, and Kate Miller-Heidke.
Just got done making a spreadsheet that shows the titles of the songs from which I’ve pulled titles, the songs in the official canon I haven’t used yet, the songs that are official or semi-official canon but are covers, and the demos which have any sort of name. This is actually the third spreadsheet of its sort, as I have one keeping track of the number of times I use a song and one that lists the song, the lyric, and the date.
So I’m feeling a bit compulsive and pleased, now. And tired. Tried to go to the library, but the lights are made of some sort of migraine-creating forcefield that also happens to emit visible light, because within ten minutes my eyes and head ached. I feel sort of spoon-drained now.
I’ll update later today (it’s after midnight, it’s today!) with hair and cat photos, if I don’t completely forget. As you do. It’s snowy snow snowing outside again. Another 4″ on top of the 8″ we had (that, to be fair, had melted down by half at least) over the weekend, with possibly a couple of feet due over the coming weekend. Cannot. Escape. Fast. Enough. I like snow, but I am so sick of the whining and the not having good vegetables and the slush in my house because my door opens in a weird way and there’s no place to keep a doormat.
Have you, O Reader, ever felt like you can’t catch a break? Every time you turn around, something is happening that prevents you from advancing? Yeah. The last few months have felt like that, and I was bitterly convinced that 2010 would be better because it couldn’t be worse. I stand corrected. It can be at least the same level of suck.
Things that have happened in January since my last substantive post:
1. I fell down the stairs outside my apartment, bruised myself up.
2. I told the neuro the gabapentin wasn’t working and got very little help from him (I’m trying a hefty dose of magnesium and will be adding riboflavin shortly, as reccomended in the best book about migraines I have ever read even if she does think accupuncture isn’t a total sham).
3. The glasses I found and wanted were sold out (I ended up buying the ones with the real! wood! sides!, we’ll see if they’re as badass as they seem)
4. I negotiated/weeped my way to a resolution on my MRI bill (short version: Them: “You don’t qualify for the fee reduction because in the past 3 months you made X with would mean your yearly salary is Y, about $8,000 over the limit.” Me: “Can you not see the part where I did, in fact, make a salary under the limit? This is stupid math.” Then some weeping, and an agreement to resubmit my claim in April with all new paystubs).
5. I had to pay over $400 in taxes because my job sucks at doing their job witholding. Seriously, how could I, at around 200% of the poverty level, owe the feds money? WTF?
6. Prosper sprained his little kitteh wrist and was all limpy until the vet gave him (an expensive) shot that made him a little loopy.
7. Dollhouse ended and the finale sucked.
8. I DID NOT HAVE INTERNET AND IT WAS HORRIBLE DEATH. The internet has now been restored. You can tell, because I am alive.
9. At this point I should make a 10 point list, don’t you think? Uh, I had a serious lack of therapy. Further, my asshole insurance decided I probably only need 6 more sessions. This won’t be a catastrophe because of the moving and all that, but if I wasn’t? Jerks. Therapy is waaaaay better than drugs, even if it is more expensive. We’re working on my awareness of my tendency to be rigid and how to think my way through that. We had a really good one this past Monday about thought planning in new social situations that was super helpful. Fuck you, insurance!
10. My job continues to suck.
I am so looking forward to going down to Dad’s next week. Here’s hoping I don’t get snowed in.
Alright, first of all, I would like to whine because it is COLD DEATH HORRIBLE COLD and has been for weeks.
Look, I know that by choosing to live in the mountains of Virginia, I run the risk of both boiling in summers and getting at least one good snow a year in the winters. But it is cold and terrible and death and I think there’s a definite risk of frostbite at this point. I never lived anywhere colder, so having temperatures in the teens and twenties–that’d be in the -12 to -5ish range for you celcius lovers–for more than a day or two at a time brings out unprecedented levels of whining. Also, the radiator? Not so hot. Space heater ftw.
This wasn’t actually intended to be a long whinge about how cold it is, except that that lyric got into my head, so here we are.
What I intended to write about is how much I want some wooden glasses. See, my job does not yet know I am leaving–something I plan to leave to the last minute–but I do. I know that it took me 8 months of varying degrees of intensity of searching to get a job back in 2008. I know that I am pretty much disqualified from buying private insurance because of the migraine issue, not to mention this pesky autism stuff, and I’m too old to get back on my mom’s insurance (also, not a student right this second). Between trying to remember to make a dental appointment and worrying about how the gabapentin, rather than making me drowsy, is making me an insomniac, I got it into my head that I need to drop a couple hundred and buy some glasses.
My insurance is good, as far as insurance goes. The copays are not horrible, the premiums are not horrible. I have vision and dental, which is more than most people (should have taken advantage of this earlier, but I only remember going to 2 dentists–I’m sure I went to one as a small child in Atlanta, but I have no memory of this–and seeing anyone else scares me). I bought glasses pretty much as soon as my insurance kicked in when I started this job, but since my ‘scrip is stable, I’d like to get another pair before I quit. Insurance pays for 40% of my total, flat. My lenses are cheap, because I am largely not blind, and the only special stuff I like is anti-glare.
After trying on a bunch of glasses and coming across a pair I quite liked, I started to really think about wooden glasses and how badass that would be. My first stop was Urban Spectacles, which involves hand-carved custom awesomeness (my favourite pair are ‘gold star’–love the asymmetrical bridge!). However, apparently prices start at $500, and I’m not even sure if he’s making them any more–even if he is, I doubt he takes my insurance. So. Second stop was Herrlicht, a German site with very little by way of information (linked directly to my pair of choice, in the reddish wood plzthx?); I’ve no idea what they cost or if they’re still operational. Third stop, however, may have been a victory. On page 6 or 7 or 8 of my google search (“wooden glasses”) results there came this website, an online glasses retailer with a pretty good-sounding return policy and super cheap. Yeah, they’re not wood (I’d want them in brown, as it’s most wood-like), but they’re probably the closest I can afford for now. I see no mention of taking insurance, but since they’re about $60 all up I guess I can’t whine.
Is getting two pairs of glasses exhorbitant? I’m thinking yes.
I am so sick of doctors refusing to listen to what I say that I think I’m going to give up on visiting them. Clearly what I say has little to no bearing on their assumptions, so I might as well not go.
In September, my GP told me he wanted me to get an MRI of my brain to make sure that was fine. I said no. I was scheduled anyway, and left with a nearly $600 bill I cannot afford to pay.
He scheduled me for a follow-up with a neurologist for no clear reason. There is a small lesion on my MRI, but it’s very common in women with migraines (especially with auras), and I’m certainly well read on the various treatment options, so it’s not like his personal lack of expertise was detrimental to coming up with possible drug therapies.
The neuro started off quite nice, and seemed to be paying attention to what was coming out of my mouth. I gave him a pretty thorough history. And then came the big moment:
“So you’ve been on Zoloft, for anxiety?”
This question is the last thing I ever want to hear from a doctor. I will never, ever disclose this information again. I will make up an alternate medical history if I have to. This question means my concerns are no longer valid. Once a doctor knows this information, every single fucking thing I might be concerned over, like 4-5 migraines a week, can be attributed to a recurrence of my anxiety–even if I am not anxious beyond a reasonable level because I’m HAVING FOUR OR FIVE MIGRAINES A WEEK.
He asked me a few minutes later if I was stressed, currently. Well, FUCK, yes, I’m stressed. I hate my job, I have no social life, I am physically separated from my girlfriend by a couple continents and the largest ocean on earth, I’m struggling to make ends meet because of a stupid fucking MRI that I didn’t need, my car got hit and runned last week and now I have bills from that to pay, and I’m having four and five migraines a week. OF COURSE I AM STRESSED, ASSHOLE. But because I answer yes, and am not given a chance to elaborate, the answer to curing my migraines is not either of the drugs I was prepared to tolerate as suggestions (one of which is much less shitty than the other, but they were my two preffered choices having researched every single drug used for migraines on the market).
No. I clearly am just anxious and/or depressed again and need a reduction in stress. Have this pill. It will make it better.
“But I’m neither depressed nor particularly anxious,” I point out. “And the last time I took an SSRI, I gained 40 pounds and felt numb emotionally. I am not willing to try an SSRI again because of this. I would possibly consider an SNRI if we have to go down this route. But dulling my reactions to the stress in my life isn’t going to relieve my headaches, because stress isn’t a trigger as far as I can tell from the patterns I see. I told you that the fluorescent lighting at my work is a trigger, that’s why I get them there. Also, even if I bought your theory that stress is my underlying problem to be treated, I don’t want to do that with pills–that’s why I’m in therapy.”
But if you could just lower your stress, I really think–
“NO. I will not take that drug.”
Try some gabapentin, then.
I had dismissed gabapentin from my list of possible stuff to try very early on, and was annoyed that my experience of my migraines was being dismissed for some alternate cause, so I couldn’t remember quite why I rejected it. Then I got home. Now I remember.
These are the common side effects I get to look forward to:
“Back pain; changes in vision (double or blurred vision); clumsiness; constipation; diarrhea; dizziness; drowsiness; dry mouth; nausea; stomach upset; tiredness; vomiting; weight gain.”
The full list of side effects is horrifying. This is also an anti-epileptic, like topamax, which worked for a few months before becoming unbearable in its side effects. I don’t grasp how a different anti-epileptic for NOT SEIZURES is supposed to make any fucking difference.
Because I was already upset that he was ignoring my suggestions of triggers and ways to fix them, I let him write the script, and had it filled on autopilot. Now I have these drugs that I’m terrified to take and a follow up in two months to talk about them.
I never want to practice medicine with an office and patients and all of that bullshit. I think it must make you stupid, and an asshole. Every doctor I’ve seen seems to be–they start off nice, and then stop listening about halfway through and reccomend treatment for something other than why I’m there.
I am not taking this shit. It’s $10 wasted that I really can’t afford to waste, but I refuse to take this horrible medication. And I’m cancelling my follow-up with him, I think. Doctors who can’t be bothered to respond to any of my suggestions do not deserve my business. I just hope I don’t stroke, or kill anyone, from all the migraines.
Dear Drugs.com,
I love you. Thank you for inadvertently giving me a suggestion for how to not keel over and die. I am in need of both migraine and allergy control, and thanks to your comprehensive interactions tool and reviews section, I learned via researching that I totally need to look into periactin/cyproheptadine. It works for both migraines and allergic rhinitus. WIN.
Love,
Me
PS – I know I said you could email me about new migraine drugs, but can you quit emailing me scary copy about how I’m totally going to stroke? Thanks.
So, I went to the doctor for my 2 week follow up after discontinuing topamax last Friday (the 2nd).
He was still pretty skeptical of my claims of possible seizure activity. I haven’t had another event with the nystagmus and all of that, but I’m still having daily rounds of hiccups (fun) and some interesting scintillations. I’ve kept a headache diary, by which I mean I’ve written them down in my planner with details about sensitivities and auras, and I’m back to between 1 and 3 migraines a week (though excedrin helps about half the time, which is excellent). If I have an aura, the excedrin will almost certainly help, which makes me wonder (haven’t brought this up with the doc) if I’m having a different sort of headache sometimes. My migraines almost always begin in the occipital region, mostly on the right but a moving towards being bilateral, and spread along my side until they my temples and sinuses, at which point all bets are off because my head fucking hurts. I try to get to them before there is sinus involvement. Sometimes, maybe 1 in 4 or 5, I notice the right temporal pain before the occipital pain. The pain is pretty variable–if I have an aura, it’s going to hurt less. I would say they’re all moderate, between 4 and 7. I sometimes have tension headaches, which start as an all-over pain and are a 3-4, and these go away without trouble with the application of any pain med–excedrin, tylenol, ibuprofin, whatever’s on hand.
The doctor wanted me to see a neurologist, which I’m not super enthusiastic about. I know that I probably should, but I’m concerned for insurance costs and making my life even more difficult trying to get insurance if I change jobs. He decided that we’d try an opthamologist and an MRI, first; I was so tired that I was willing to do most anything he reccomended.
The opthamologist was nice, but scary. I do not think I will go into opthamology, though I find the actual anatomy interesting. I freaked out when they touched my eyes and I’m lucky I didn’t scratch my corneas. We discussed the possibility of acute angle glaucoma from topamax (he claims to have had 2 patients with it right out of med school, so he suspects it’s more common than is claimed), but I’m free and clear (I didn’t expect to be told about surprise glaucoma, anyway). He believes strongly that everything is just a side effect of my meds and will go away with time (gee, thanks, nothing we can do to fix it now?), in a way that made me wonder what my doc had written in the chart he sent over. “Crazy girl thinks she’s having occipital seizures. Did I mention she goes to therapy? Cah-ray-zee.”
Oh! My appointment with him was a surprise appointment. The doctor’s office said they’d make my appointments for me, which I wasn’t really excited about but felt was a good idea (I cannot remember to call places to make appointments to, probably literally, save my life). So on Monday the 5th, while getting ready to go see KATE!, I got a call telling me my appointment with him was tomorrow afternoon. Ha! And my MRI was on Friday.
So the MRI was fun. I mean, I’m pretty entertained by medical procedures, because I have a fairly good layman’s grasp of what’s going on and am well-versed enough to understand when other things are explained. I’m probably a super obnoxious combination of enthusiastic, curious, and anxious.
I got to the hospital at the ass-crack of dawn, just after getting off work and changing into metal-free clothes. They only other time I’ve had brain imaging (a CT) was in Melbourne just after getting diagnosed with migraines, a precautionary “You don’t have brain tumours, right?” measure. It was without contrast and showed pretty much nothing; this time I got an IV for contrast.
Hey, guess what? I HAVE A BRAIN. It’s amazing, I know.
I’ve looked at all of my films, and there’s one set where I guess I moved. Unless they’re supposed to look like that. The internet is down at home, so I can’t compare easily. In the rest, it is evident that I have a brain, and no apparent giant tumours or anything. That’s pretty much the extent of my diagnostic skills.
As far as withdrawal from topamax has gone, the palinopsia is mostly gone (though it persists on bright things next to a darker background, like my chair against my dresser), and I’m still possible-seizure-creepiness free. I’ve had a few tunnel vision and scintillation bursts, which remain unexplained. My appetite (and weight) are back up–my appetite possibly more than when I started the topamax. I lost 10 on it, and have gained 5 back, so I hope this is where it ends. My word-search and forgetfulness probelms are getting a lot better, though I never expect them to be “normal”–I still have pronoun issues when I’m really relaxed! It’s asking a little much to reach normalcy.
On the subject of word searches, did you know you can make at least 855 words out of the phrase “the very hungry caterpillar”? Stupid restaurant only gave me 10 blanks for this challenge, so I had to prove them wrong. I think I definitively have.
Shit, maybe the topamax was actually doing something–I’m at the onset of migraine number two for this week, and am aware of two things:
1. I should have guessed, given I slept for 10 hours (my prodrome invariably involves sleepiness, as do the actual headache, and the postdrome–I’m basically not sleepy when my migraines are well controlled and all other times are no-go).
2. I do not have imitrex with me, because, shit, I already had one this week, and I was not expecting further issues for at least another day or two.
This one involved a very minor (very, very) aura, but the main feature is occipital pain and sinus pain, so far. I want a nap.
Edit: Excedrin. This is why I always have it with me. Fuck this ‘scrip shit. Within an hour, I was merely tender, and within two it was gone.
Still tender and vaguely headachey in the occipital region, almost exactly 4 hours after I took the imitrex (about five after I started noticing the onset of pain, while we were at the vet’s and driving home). I’m also currently having a hiccuping fit. I should have included them in my description of seizure-like bizzareness. Who the hell hiccups for ten minutes straight without precipitant? Apparently people having simple partial seizures. I really hope they go away as I withdraw from the topamax over the next day or two–it’s even become something of a joke at work (well, I’m not entirely certain I’m not the butt of a joke in this case, but I’m not offended, so it’s harmless?) that I hiccup often and without cause. Light sensitivity has receded. Frankly, I’ve had as good or better pain management on excedrin. Mom reccomended chasing with ibuprofin, as she thinks it’s what’s in the newer formulation–I’ll check drugs.com and see.
Aaaaand here comes my first migraine. I can feel it starting everywhere in my head (it’s one of those, great–did you know “sinus headaches” are usually migraines?), from above my cheekbones to the backs of my eyes to, no surprise, the occipital region of my skull. It is a rare migraine for me that doesn’t have some occipital involvement, whether in the form of pain that ends up centred there or scintillations (which I’ve learned is the correct word for the flickering white/irridescent lights–maybe if I was using it, I wouldn’t get the crazy look?). It’s funny to read all this stuff about how migraines are usually unilateral, because mine so rarely are; they often start on the right side, but within the first few minutes are bilateral.
Since a) I haven’t had a basilar type in almost two years and b) this started as a sinusy-type (I forget the right word for it, which I think is fair given my head fucking hurts) and is quickly moving into an all over the head kind, I’m going to try this imitrex stuff. And see if I can eat and have some coffee (both usually also help).
Just got back from the doctor and pharmacy. This was my six month med check on topamax/topiramate, which I have been increasingly disliking.
I began having migraines when I was 13 or 14, and they were pretty irregular; I had very few while on zoloft (one of the few plusses of remaining on that med longer than otherwise necessary). In July of 2007, I had a sudden, unexpected and unexplainable upswing in frequency, from one every six weeks or so to, at the worst of it, three and four a week (it was a nice, slow exponential curve towards that point). I saw a neurologist and was given a beta blocker, inderal/propranolol, which thankfully dropped me back down to one a monthish. We agreed that was a manageable level and I didn’t pursue further treatments.
In March of this year, after slowly watching the number of migraines per month creep back up from maybe one to two or possibly three, I went to the doctor. My blood pressure was tolerable, but my heart rate was quite a bit too low to add more beta blockers (which is what I was hoping for going in); 52 is apparently unacceptable. We started topamax then.
The side effects have been varied and interesting. They’ve been neutral, by and large, with the exception of what appears to be a ten pound loss–definitely positive. There’s been some parasthesia in my lips and fingers when I’m cold (which is pretty unpleasant but tolerable), and some really interesting visual disturbances when I wake up. I can best describe these as ghosting effects, or perhaps what it’s like when the shutter on a camera is too slow for a moving object. Motion blur. Except that everything that moves, or which I move in relation to, has them. FUN. (not fun) This started out as being a very transient thing which lasted up to five minutes after waking and happened once or twice out of the week; now it can last up to an hour and happens probably four or five days out of the week. At the very start, but not so much now, I had organized patterns of moving very small white/irridescent lights in my peripheral vision–now I do sometimes get brief flashes of the white lights on white or lightly coloured walls (I get them when I first get to work if I nap before going in, I find), but not in the same organized patterns as before.
All of this has served to make my doctor think I am very mildly crazy. Well, I can’t exactly blame him. I’m reporting visual phenomena which can’t be validated and probably do sound a little crazy, except that I have a definite start date for them which coincides with the start of this med (also, they look like my migraine auras, which are rare but distinct–and it makes sense to me that the med would affect the same area of my brain).
Twice in June, again in July, twice in August, and then last week coming home from Boo Gardens, I had what I am tentatively labelling seizure-like events (my doctor did not like my tentativeness, either–”You’re not very decisive!”). On all five occasions, I was up waaaaay too late (in the neighborhood of 24-35 hours) because of the way my work schedule ended up, or had only napped for 2-3 hours after getting home from work and then continued on my merry way. On four of the five, I was late getting my meds because I was so late getting home and to bed, although I take my pills when I feel like it, at this point, so I don’t really see how that makes too much of a change.
If I was, in fact, having seizures, they were simple partial in nature. I was concious each time and acutely remember each event (which involved nystagmus and visual disturbance), but not being distressed or feeling like I was in any danger. They were probably occipital in origin–funnily enough, where my migraines tend to start (the migraines that just burst into existence, at least–about a third begin their lives as sinus headaches).
My doc doesn’t buy that the topamax could be causing them, as it’s an anti-epileptic. I say that my body is perverse that way–benadryl doesn’t put me to sleep, either. Either way, he agreed to take me off the topamax and we’ll recheck in 2 weeks to see if the rest of my side effects have dropped off. I want to antagonize the possible seizure activity, so I guess I need to stay up next week. Hmm…wonder what I can do to make that happen? I’ll work something out.
Edit: Oh, balls. Imitrex is contraindicted for basilar migraines, which I have had (apparently so is my beta-blocker, which I didn’t know). I guess I’m bookmarking this and bringing it in with me in two weeks.
Edit again: The ghosting effect is called palinopsia, and I am experiencing the positive variety. I WIN AT WIKIPEDIA.
My name is Ali, though sometimes it's Eliot.
I have many tumblrs, which you are welcome to also visit:
The Polite Yeti - My personal tumblr, full of silliness.
Fuck Yeah, Kate Miller-Heidke - the only active Kate fan site, which is baffling.
The Branden Rose - the only active Monster Blood Tattoo fansite, which is less baffling.
I also have a semi-successful etsy shop, which you should visit, below.
Please buy things from me:
A brief history:
- January 2012
- December 2011
- November 2011
- October 2011
- September 2011
- August 2011
- July 2011
- June 2011
- May 2011
- April 2011
- March 2011
- February 2011
- January 2011
- December 2010
- November 2010
- October 2010
- September 2010
- August 2010
- July 2010
- June 2010
- May 2010
- April 2010
- March 2010
- February 2010
- January 2010
- December 2009
- November 2009
- October 2009
- September 2009
- August 2009
- July 2009
