taking some time

this morning my doctor told me that i needed to be tested for lupus. i've seen house, i know that it's never lupus. so now i just have to convince myself that it's never lupus. i read a lot about it earlier and i honestly don't think that i have it because i don't have many of the symptoms. but i have to wait about a week to get my results. i still really think if it's anything, it's fibromyalgia. but i'm not a doctor. 

i had an EEG this morning also. you're supposed to be sleep deprived for an EEG so i was only allowed to sleep for 4 hours last night. that was poor timing because i only slept about 4 hours the night before as well. thanks, insomnia. anyway, today was pretty awful. i was so tired and emotional about everything that's happening and not happening. last week was very difficult for me in terms of work. i was miserable all week but somehow i managed to get it together to go to work every day. yeah, not this week. i'm actually not working at all this week. i just can't right now. it's too much. 

i'm getting an MRI tomorrow morning which will show nothing. i've had countless numbers of MRIs that were all normal. at this point i would probably die of shock if they actually found something physically wrong with my brain. 

a change of venue

i decided to move all of my serious health related craps back over to my headache blog. i know you want to be kept in the loop so follow it! 

i slept almost 8 hours today after i got home from the hospital. now my parents are at lamberts, then going to see jackson browne and my sister is hanging with some friends. i'm home alone on the couch and will most likely be flipping back and forth between the yankees/red sox game ands svu. not a bad friday night though, really. how are you spending your friday night? probably not catching up on blogs. 

cross your fingers for me

i've tried to keep my weird health related issues out of this blog but i guess that's not always possible for me. last month i told y'all about my anxiety issues that were becoming unmanageable. for several months i've been taking a drug called nortriptyline for my migraines/neuralgia but my doctor said i really shouldn't take nortriptyline with sertraline (for my anxiety) so i stopped taking it. i called my neurologist to see if he could call in something else for me that was also used to treat migraines and neuralgia but wouldn't react poorly with sertraline (i actually know of a specific drug that would be perfect for me). instead of prescribing something new he told his nurse to call me and tell me that it was fine for me to take the two drugs together. my primary doctor and my pharmacist both strongly warned me against doing this! i had already been thinking about "firing" my neurologist because he just doesn't seem to care anymore. for example, i get dizzy a lot and i finally mentioned that to him at one of my check ups and he said, "well keep an eye on that." I HAVE BEEN KEEPING AN EYE ON IT, THAT'S WHY I'M TELLING YOU ABOUT IT NOW. ugh. so after this bullshit with medication i'm officially on the hunt for a new neurologist.

there's one, dr. cain, who i saw several years ago for a while who i really liked. i stopped seeing him because i was doing really well and just didn't need him anymore. then somehow i ended up going to a different doctor, and then another doctor. anyway, i want to go back to dr. cain but it's not as easy as calling and making an appointment. he's probably not taking new patients at this point so i had to give them all of my information regarding symptoms, previous diagnosis, and doctors i've seen in the past. the lady i talked to said she would give it to dr. cain and then they would call me and let me know if i could make an appointment. i really hope he will take me back because i don't even know how to begin to find a neurologist who will work with me.

of all times to be "between" neurologists, i have been having something funky happening recently. i'm not even sure that it's neurological but luckily i have an appointment with my regular doctor on monday so i can talk with him about it. the something funky is that i have been getting a very cold, wet sensation in my left foot, between my first 2 toes. it has happened several times this week and each time i legitimately think i have stepped in a puddle or something has dripped on me from somewhere and each time there is nothing there. i've also had a couple of times where i felt something cold and wet dripping down my leg except, you guessed it, nothing was there. i don't like to dig too far into the internet with questions about these types of things because i'm pretty sure i'll convince myself that i have ms or something. buuuut the things i did read all point towards some sort of nerve problem ie pinched or damaged nerve. or maybe it's nothing. that would be awesome! so, if you could cross your fingers that i get in to see dr. cain i would really appreciate it. i need all the help i can get! my headaches are getting worse and worse by the day because i'm not medicated and i'm not sure how much longer i can do this. i know i could probably ask my primary doctor to prescribe something but as far as dosing and what would work best for my conditions, i should really see a neurologist.

and my anxiety seems to be getting both better and worse. it's hard to explain but i've developed some lovely intestinal problems as well as some sort of stress/anxiety rash. i get itchy a lot, mostly on my arms, but there's rarely ever a visible rash. the itching isn't contained to my arms, sometimes it's my legs and stomach, but mostly it's the arms. and it's really only when i'm at work or trying to fall asleep. ugh, so annoying.

give me a break, please

when i went back to work today my boss acted like he was mad at me for what happened on friday. in case you missed it, i had to go to the hospital with a headache so bad that it caused me to think i could possibly have an aneurysm. i explained everything to him and then he acted like i was faking it. i wish i had been faking that shit. i was in more pain than i think i ever have been in my entire life. i don't get what his fucking problem is, a couple of weeks ago one of my co-workers had vertigo and missed probably 2 days worth of work. vertigo is like a headache in that it's probably pretty easy to fake having, but no one questioned my co-worker when she was sick. i'm just super irritated with the whole headache thing anyway, having to deal with shit at work is just too much.

i think i might fire my neurologist soon. i just feel like he's not particularly interested in trying to find ways to make me comfortable when i get a really bad headache. he's interested in headache prevention but, um, he's not doing that very well either. obviously i want to prevent headaches but i also want to be realistic and have a plan for when the preventative measures just don't work. going to the hospital and getting an iv full of compazine, dilaudid, and fluids isn't something i want to have to do ever again. i have a bruise the size of a golfball on my arm, it's super trashy looking :(

i don't like to complain about my health stuff here very often but i'm so frustrated right now. i feel like people don't take migraines and other types of debilitating headaches seriously at all. if you've never experienced it, you honestly have no idea how bad it is. and it gets so, so bad. i've been doing this for 15 years and i don't know how much more i can take. i am so very sick of this shit.

hospitals and appliances

i woke up at 1:00 this morning with a frighteningly horrible headache. it felt like a brain freeze on crack. i took maxalt and tried to go back to sleep but it was a pretty restless night from then on. when i got up for good this morning i took another maxalt and still nothing. so then i took my last vicodin and...nothing. i called in sick to work and called my mom to see if she could take me to urgent care or the emergency room. she left work immediately, came and got me, and took me to the hospital.

this trip to the emergency room was pretty much exactly like the time i had to go last april. blood work, an iv injection of dilaudid, compazine, a bag of fluids, and a cat scan. cat scan came back normal but the doc wanted to do a spinal tap. just like last year i told him i didn't think i could handle a spinal tap but if i don't start to feel better soon or start feeling worse then i will go back and have it done. last year they worried it was meningitis, this year they worry that it's an aneurysm. apparently the cat scan is only about 90% accurate in detecting small aneurysms.

after we left the hospital my mom took me to firebowl at my request. as we were eating lunch i thought about how lucky i am to have my parents around when i really, really need them. i don't know what i would have done if my mom hadn't taken me to the hospital. and then she bought me lunch after i made her sit around the smelly emergency room for a few hours? and if you think my mom is amazing for doing those things wait until you hear what she did next...

mom: how badly do you want a fancy mixer?
me: pretty badly.
mom: more than you want a new tv?
me: yes! (my tv is almost dead, btw)
mom: do you feel up to going to target now?
me: um, yeah.

say hello to my beautiful new friend

maybe in a couple of months i'll have to go to the hospital again and i can get that new tv i need. just kidding! sort of. 

a new location

i've decided to keep all the shitty stuff about my headaches out of this blog. i don't want this place to turn into a headache diary. so i started another blog that will be my headache diary. if for some reason you start to miss all of the bitching and moaning i do about my head, you can read all about it here. you can even follow it!

a late christmas miracle?

i don't think i need to go into much of a back story but this is a brief rundown of my headache history. since may i have been on some sort of prophylactic to try to prevent my daily headaches that come as a side effect of occipital neuralgia. the medicine that i was previously taking caused too much fatigue so last week i switched to nortriptyline and it seems to be working okay so far. but, of course, something else is going on now. the headaches i've been having are nearly identical to migraines sometimes but they aren't actually migraines. well, now that i have those headaches under control i'm getting migraines frequently. what the hell? i've had actual migraines in the past but not very many. i think i've had at least 4 or 5 in the last 2 months. last monday i saw my neurologist and he gave me samples of several different medications used to treat migraines.

i got a terrible, terrible migraine today shortly after i got to work. i had one of the samples (zomig) with me but i was hesitant to take it because the last time i tried one (imitrex many years ago) it made me feel worse than the migraine did. i waited until this evening when i got home from work to take it. i worried that it was too late for the medication to do any good. and, of course, i worried that it was going to cause awful side effects. about an hour after i took it my headache was totally gone and i never felt any of the side effects. it felt like a miracle occurred in my head.

as excited as i am that zomig got rid of my migraine, i am annoyed that i'm getting them so frequently right now. i finally start to get my other headaches under control and now this? why?!

every inch

y'all, i'm being completely serious when i say this, every single inch of my head/neck hurts. every spot that i touch feels like i've been hit with a blunt object. if i had anyone around to drive me, i would probably be on my way to the ER right now. i've been trying not to cry because it just makes everything hurt worse but sometimes, all i can do is cry. i'm just so fucking sick of this. i wish i had interesting things to write about but these days all i have going on is exhaustion or excruciating pain. or both, which is just totally awesome.

i don't know what to do and i can't seem to get my doctor to understand just how much discomfort i am in. i just want to sleep until this all goes away :(

zzzzz

i went to the doctor on thursday to discuss my current fatigue. we decided to experiment with the medicine i take for my headaches. i'm going from 50mg to 25mg each night. the ideal situation would be that the 25mg dose would still control my headaches and it would also make me less sleepy. we don't even know if it's the medicine that's causing it but we have to try everything. he also had the lab take a ton of my blood. i was told to call the results line in "about a week" to get my results. of course that hasn't stopped me from calling twice since then just in case they already processed all of my tests. they haven't. so i'm supposed to take the lower dose for 2 weeks and then see what happens. i'm sad to say that i'm only on day 2 of 25mg and my head has hurt pretty much all day. so even if it is the medicine that's making me sleeping, this dose is probably not strong enough to help my headaches.

my doctor also mentioned that i may need to be tested for sleep apnea. i don't think i have it but if we don't find the cause anywhere else, it's worth looking into. to be honest, my biggest fear is that it is my medicine though. because then i have to make the decision to be tired all the time or have headaches all the time. i finally find something that works and then it makes me unbearably tired all the time? that's just my luck. i know that i'm possibly jumping the gun here but i am just trying to prepare myself for the worst. although, i guess that might not actually be the worst thing we could discover. my doctor did mention anemia which, honestly, kind of made me chuckle. could you imagine a low red blood cell count with my already astronomically high white blood cell count? that would just be weird.

another doctor's appointment

i had yet another appointment with my neurologist (dr. couch) today. he doesn't think i should continue to see the pain management doctor (dr. mahendru). i don't really think i should either. the last set of injections didn't do anything but cause a huge amount of pain and discomfort. i'm actually still very sore from one of the injections. that is not normal. anyway, dr. couch basically said that dr. mahendru is now just experimenting on me because he doesn't know how to stop my pain. i'm not particularly interested in being an experimental pin cushion any longer. i'm sure he's extremely successful at managing pain for some patients but he doesn't know what's wrong with me, thus he doesn't know how to manage my pain. i'm more than likely going to cancel my appointment for the cervical facet injections next week. aside from the cost i just cannot deal with any more of this shit right now. being put under to get shots in my neck just doesn't sound like something i can handle very well.

tonight i started taking amitriptyline, which i will take nightly for a month. apparently it can really help with headaches as well as nerve pain. my brother-in-law was prescribed it a few months ago when he had shingles. anyway, i'll take it for a month and then go back to dr. couch to evaluate my progress on the drug. depending on my results i'll either a)continue to take it at 20mg a day b)begin taking a stronger dose or c)try another drug in that class. i really, really hope this works because i'm pretty much at my breaking point now.

the one where i complain a lot (more)

on monday morning i woke up feeling a little off. i spent most of the day trying to figure out if it was allergies or something more. it didn't quite feel like allergies but i was trying to remain optimistic that i wasn't actually sick. when i woke up on tuesday there was no doubt about it, it was not allergies. if you remember, my headache came back last friday so i was battling some sort of cold/sinus thing and my hideous headache at the same time. i went to work because i knew we were shorthanded and that's just the kind of trooper that i am.

wednesday morning i had to get up early (for me) to go get the second round of my occipital trigger point injections. last time i got two shots, one on the left side and one on the right side. this time i got six shots. yes, six. back of head, neck, and shoulders on left and right sides. somehow i survived it though. i was much more calm and relaxed than the last time. i swear, if they had tried giving me six shots when i was there a couple of weeks ago i would have definitely passed out. i went home to spend the next 2 days relaxing, hoping to recover from both the injections and the cold.

when i woke up on thursday my cold or whatever felt quite a bit better so i decided not to try to see my regular doctor about it. it really felt like it was on its way out. my injection sites were pretty sore but a couple of them in particular were ridiculously uncomfortable. i continued to take it easy knowing that i had to work 10-6 on friday. yeah, that didn't happen. when i got up this morning i felt way worse than i did yesterday so i had to call in sick. i hated doing it but i would have been completely useless and i just know there's no way i would have made it through the day.

i reached the coughing stage of this illness today and let me tell you, every time i cough it feels like one of those injection sites is going to explode. it is absolutely horrible. i spoke with one of the doctors from the pain management institute today and he agreed to call in a prescription for some painkillers for me. if i'm still all sore and puffy on monday i'm gonna go in and have them check me out to make sure everything's okay. i tried to get an appointment with my regular doctor to deal with this cold thing but they didn't have any appointments available. at this point there probably isn't much he could do for me anyway. if it is some sort of infection, i'm already on the 5th day so i doubt antibiotics would help much. and it might just be a cold, in which case i just need to let it run its course. the painkillers, which are pretty strong, haven't done anything other than make me feel wonky. the pain is still there! wtf?!

in two weeks i have to go back to get cervical facet injections. i'll be sedated for that one, thank god! hopefully my recovery will go more smoothly after that procedure. i'm a little nervous about it but i'm going to try to chill out about it.

pinhead

on april 26 i had occipital trigger point injections in both my right and left sides. i've had similar injections before and i don't remember them hurting as bad as these did. omg, it was awful. i nearly passed out because it hurt so bad. i was in pretty extreme discomfort for a couple days after but the soreness finally died down. i was still experiencing the pain in my forehead but the headache stemming from the back of my head was gone. hooray! well, it was gone until i woke up this morning. i go back on wednesday to get the same injections again. then, somewhere down the line, i will more than likely undergo a procedure to have my nerve endings frozen. it's not a permanent solution but apparently it can last up to a year.

i really enjoyed the 8 or so days that i was mostly pain free but now i feel completely horrible. i think part of the reason i feel so awful is that i now remember what it's like to not feel bad all the time. does that make any sense?

i guess it's been a while

i'm alive. i'm pretty sure most people who might read this are aware of that but i realized it's been a while since i've posted anything. i had an appointment with a new (to me) neurologist on thursday. he thinks i need to try occipital nerve blocks again. on monday i have an appointment at the central texas pain institute. i hope it helps.

on wednesday night i got to see (and meet) yann tiersen. it was amazing and i'm so glad i was able to go. i missed 2 concerts because i felt so crappy for so many days and i was determined not to miss yann.

that's really all the news i have. i'm pretty boring these days. i won $1 on a scratch off lottery ticket last night.

for anyone wondering

my normal white blood cell count is 11,500 so the count of 16,500 on saturday was high, even for me. what does that mean? well, it means that i have an infection of some kind and i really need to go back to the doctor. i have an appointment with my primary care physician for tomorrow afternoon. if i start feeling a lot worse between now and then i'll probably have to go back to the emergency room. keep your fingers crossed that i don't have to do that. also, keep your fingers crossed that i don't actually have anything serious wrong with me. that would suck.

this isn't about vampires but it is about the weekend

i was supposed to see vampire weekend at stubb's last night. i got the tickets months ago and i've been looking forward to it for such a long time. i went to dinner with some friends who were going to see yeasayer at la zona rosa and by the end of dinner i was selling my ticket to a friend's co-worker because i had a HORRIBLE headache. it was pretty disappointing.

i get headaches often but this one was unbearable. my mom took me to the nearest urgent care clinic around 9:30 last night but it was closed. wtf?! we went to another, which was also closed. i call a couple more and got recordings of their hours but none were open. so it was off to the emergency room at the nearest hospital, seton northwest. luckily there was only, like, one other person there when we got there so i didn't have to wait too terribly long to be seen.

my main symptoms were a slightly elevated temperature (99.2 while my normal temp is around 97) extreme head pain, neck pain/stiffness and an intense sensitivity to light. they only turned the light on in my room when it was absolutely necessary so most of the time the room was lit by a small light above the sink.

the doctor finally came in and told me that his main objective was going to be to determine whether or not i had meningitis. one way to look for meningitis is a ct scan but that is only about 94% accurate. the only real way to rule it out is a lumbar puncture. i declined the lumbar puncture because, honestly, i don't think i could handle it. i had to be put to sleep to get a bone marrow biopsy and that apparently isn't shit compared to the l.p. 

while i waited for my turn to be seen by radiology they hooked me up to an iv. first i was given some anti-nausea medication, then fluids and dilaudid. dilaudid is crazy, you guys. holy shit. 

i sat in bed for a while until a nurse came in and informed me that my iv was too small for the contrast dye i needed to be injected with during the ct scan. so that meant that i got an even bigger iv stabbed into my right arm. luckily this was after the dilaudid kicked in so i didn't really feel anything. finally, i was wheeled down to radiology for my scan. i've always heard that when you get the contrast during a ct scan it feels like you're peeing in your pants. my friend david had one a few months ago and he told me that it just feels "warm" or something but let me tell you, i thought i peed my pants twice! no one warned me about that sensation either. i'm really glad that i knew in advance because i might have freaked out a little thinking i was peeing all over myself.

after another 30 minutes or so the doctor came in and said that my ct scan was clear but that my blood work (oh did i mentioned before i got the first iv they took a million viles of my blood? yeah, they did that) showed a high white blood cell count, which is a sign of infection. i explained to him that i just naturally have a high wbc count and that eased his mind a lot. they hooked me back up for more dilaudid and an anti-inflammatory and i went home about an hour later.

tomorrow i'm going to call my regular doctor and find out what my wbc count normally is because i don't actually know. i know that it's "slightly elevated" but that's as much information as i have. a normal wbc count is between 4,300-10,800 and last night mine was 16,500. that seems more than slightly elevated but what the hell do i know? if i find out that 16,500 is high for me, i might re-evaluate my decision not to get the lumbar puncture. i realllllllly don't want one but i also don't want to die because i had an undiagnosed case of meningitis.

oh btw this hurts like hell still. 

head history

i am a chronic headache sufferer and have been for about 14 years. i go through phases where i don't have many headaches, and then phases where it seems like my head hurts ALL the time. some of the headaches are pretty dull and others are unbelievably debilitating. when i first noticed i was getting frequent headaches in 7th grade, my doctor told me they were probably tension headaches. then, a few years down the road, i started getting migraines. i saw neurologists but was never able to find any relief from them. there are times when i know i'm going to get a headache (if i eat a lot of chocolate or drink wine, and if the atmospheric pressure changes) but lots of times i get them for no reason at all. a couple of years ago i went to see a "headache and pain" specialist. after getting an MRI (something i've had done a million times over the years) he informed me that i have occipital neuralgia. so that explains why migraine treatments never really worked for me.

the headaches i had when i was younger probably were tension headaches, but when i was 14 i was in a car accident where i hit my head on the windshield. that most certainly caused the damage to my occipital nerve. several years later i was in another accident where the car i was riding in was rear-ended by someone driving about 70mph. i didn't hit my head that time but that accident mostly likely caused even more damage.

when i was 16 i had a seizure while waiting in line for the master blaster at schlitterbahn. i had never had a seizure before and went through several tests that summer to try to find a cause for it. we never found out what caused it and i haven't had one since then. i have, however, had at least two transient ischemic attacks. i also had some strange episode when i was in pre-school but i don't really know what that was. i actually have a vague recollection of that day but i have no idea what was happening to me.

so, my head is sort of a mystery. the diagnoses of occipital neuralgia was helpful but the treatments are awful. a cost/benefit analysis of the treatments led me to stop receiving them. and by cost, i mean, the amount of pain it caused me. it is an awful, awful experience. however, i've been having some really terrible headaches recently and i've considered starting the treatments again. ugh, i just don't know. i wish there was an easy solution to this condition that i've been suffering from for so many years.