Saturday, September 15, 2007
This week is National Invisible Chronic Illness Awareness Week.what a mouthful.
but seeing as how migraines (esp. daily ones) fit well into this category, i'd like to acknowledge it. more information can be found here, here, and here. Plenty of good reading about this week, and invisible chronic illnesses in general.
on a totally related note, i thought i'd give a little summary of my most recent doctor's appointment, to see a headache and migraine specialist. thankfully, this was not just a consultation (like last time), but she's going to continue to see me. hallelujah!
so the things we changed were these:
1- back to only treating w/meds a maximum of 3 migraines per week. sad but true.
2 - changed the tegretol to tegretol extended release. hopefully this will keep a more consistent level of the drug in my blood, and therefore help me feel better more consistently. we'll see.
3 - added nortriptyline. i can take it at night and it makes me sleepy, also she is hoping it helps my mood. could possibly help prevent migraines. we'll see.
4 - i need to spend five minutes 4 times a day exercising - on top of my pilates. usually i walk for 5 minutes. it's such a short time, it's hard to even get into it. she wants me to be more active, and believes it will help me to do more, and possibly help prevent migraines (are you seeing a theme here?)
5 - keeping a headache journal. i hate these, but am willing to do it.
soooo that's a lot of changes. but you know me, i'll try anything if i think it'll help! so far the nortriptyline is definitely improving my sleep - getting to sleep is easier. i feel like i've been able to do more, also. truly, the thing i'm most excited about is that she said she's going to continue to see me - and that she also believes (like me) that migraines which are difficult to treat are not necessarily a result of psychological difficulties. thank goodness.
she also mentioned (as i have been told several times before) that the longer i go on in daily pain, the less likely we are to be able to 'fix' it. that's somewhat discouraging, but honestly i would be ok still being in -some- pain everyday. i just would prefer much less. :)
Labels: headaches, meds, neurologists, pain issues, pain relief
link | posted by Emily at 12:04 PM
Tuesday, July 24, 2007
i've been neglecting my dear blog lately.i'm about 3 doctor's appointments behind. without further ado....
1 - GP who's been helping me w/my acne. she gave me another combination of things to try, as well as a referral to a dermatologist. you can only IMAGINE how much i want another specialist to see. :) yeah, not much. but this latest face concoction seems promising. we'll see.
2 - neurologist. this appointment was the impetus of my deciding to switch neurologists. as usual, it didn't go well. as usual, he seemed out of ideas and went on to explain that he saw many headache patients, etc., etc., and that when the medications don't work, it becomes clear that they aren't normal headaches or migraines. instead, something emotional is causing them. we've been over this several times before. i even went to see the pain psychologist -- for several months. i told him that, and that she (the pain psychologist) didn't feel like there were any emotional/psychologist issues that were causing or contributing to my migraines. his response? well, sometimes the issue can be so deep down, you don't even know what it is.
sigh.
i did get two useful things out of the appointment -- first was a prescription for another preventative drug - lamictal. even though he feels it's useless to try, i have continued to push him, and he humors me. also a referral to the sleep clinic. i don't know that it'll help, but it can't hurt. even if sleep isn't a contributing factor to my migraines, it would be great to get some suggestions and ideas for better sleep. but who knows, maybe sleep problems *are* contributing to or causing these migraines.
3 - the pain clinic. this went well. sadly, one of the fellows who's been seeing me had his last week and will be going out on his own (private practice). but this appointment went well, we're trying a new long-acting painkiller. so far it's going well -- the only side effect i've noticed has been some drowsiness between doses. it works pretty well, but could be better. there is still some time in between doses where the pain returns fully. but there's more time that's nearly pain free, so that is fabulous. :)
if you've made it to the end of this loooong post, you deserve a star on your forehead, really.
thanks for reading. :)
Labels: doctors, headaches pain clinic, neurologists, nonsense
link | posted by Emily at 11:04 PM
Thursday, February 22, 2007
here is my blog's word cloud. interesting.it's doctor venting time.
so nearly 3 weeks ago, i called my neurologist. he had ASKED ME to call him when i was done w/my med trial. **sigh** you can see where this is going, right? well it took a week and a half to get him on the phone. he was busy. fine, fine -- i don't think i'm unreasonable, i'm just in pain and want you to return my phone calls, darnit! so he calls back. i tell him how the trial went (no help whatsoever). he says he'll have to 'look at my chart and call me back'. what?! why on earth are you calling me now w/o looking at my chart? ridiculous. so i call back today, b/c it's been at least another week since that gem of a phone call, and ask his assistant to page him for me.
so my neuro calls me back today. gets on the phone and asks if i had been taking the baby aspirin with the verapamil. like i'm out to sabotage this or something. of course not. i took the baby aspirin. he seems surprised by this, and then says that since we've 'tried everything dr. (migraine expert) suggested, i will send you back for another consultation with her.'
at this point, i'm thinking dude, you never even looked at my chart did you? unreal.
i tell him that dr. migraine expert actually had another suggestion, involving CoQ10 and a few other vitamins/minerals. my neuro (the guy i'm on the phone with) says, 'let me go look at your chart, hold on just a minute.'
you have got to be kidding.
this guy doesn't even remember from one appointment to the next (with me sitting in front of him) who i am or that i have DAILY HEADACHES. he thinks he can call patients back w/o looking at their charts?!!?!? winging it? so ridiculous.
he gets back on the line, says, 'yes i see her recommendation w/the CoQ10. i don't use that as a migraine preventative, so i'll need to have my assistant call her office for the dosages to use. my assistant will call you back.'
so if i were dealing with this nonsense and had some adequate pain control, that'd be one thing. but the meds they're giving me aren't preventing the headaches, and i only have one abortive that really helps! people, do i have to beg? just help me!
Labels: doctors, frustration, headaches, migraines, neurologists, pain
link | posted by Emily at 4:40 PM
