I lapsed off of my Mg and B2 in hospital mainly because they couldn't find me Mg, and took a while to find me B2. Took me a few days to get back into the rhythm of things, and in a few days I was back having orthostatic hypotension--though nowhere as badly as a week or two before the hospitalisation.
Wondering about those things is such a drag. I've had a hard time finding B2 especially in the dosages he recommended--I'm way past the RDA (1.2mg) at 400mg daily. From what I can tell I'll just pee out the excess, but I'm reading now that I should be ingesting as much B6 as B2, and that's patently not happening.
My Mg intake is not too far off the normal supplement amounts, so who knows. Probably just coincidence. So many drugs and supplements are using my body as a battleground that I can't tell collateral damage from a random coincidence.
27 July, 2007
My basic goal is to meet my obligations. That means I have to work, since I've made a commitment to my employers, and that's how the bills get paid. That means I have to teach krav, because I've said I would.
Everything else is optional. I medicate with the day job in mind, and tear myself up inside when I can't teach when I'm supposed to.
Right now I'm having a bad headache--I'd rate it at about an 8. On a Sunday night, especially if this sort (these don't respond well to triptans), I'd be wondering about the ER.
I wonder if that makes me weak. Time has either given me worse headaches or worse tolerance, because I go way too often.
But I'd rather spend $75 dollars than miss a day of work. But I hate the feeling of the drugs, the after effect of the drugs, the favours I have to ask, the vulnerability I have to display, and not only am I becoming friends with one of the Century City nurses, so is my escort.
But it's not a school night, and I have acupuncture tomorrow morning which will probably kick this puppy, at least for a few hours. Long enough for me to teach, I hope, and I'll keep my fingers crossed that I don't have to go in to work. Please, project, please finish before 1 and let me get my rest.
I had been making dinner plans for tomorrow, and there is a party I'd like to attend, but maybe dinner can be lunch instead, or postponed, and my simplest ride to the party isn't going, and I should get the rest anyway, since the past two weekends have been pretty much shot one way or another.
That's what it is for me...juggling the optional stuff as best I can. At some point, sleep seems to have made it onto the optional list. Not sure how that happened.
Everything else is optional. I medicate with the day job in mind, and tear myself up inside when I can't teach when I'm supposed to.
Right now I'm having a bad headache--I'd rate it at about an 8. On a Sunday night, especially if this sort (these don't respond well to triptans), I'd be wondering about the ER.
I wonder if that makes me weak. Time has either given me worse headaches or worse tolerance, because I go way too often.
But I'd rather spend $75 dollars than miss a day of work. But I hate the feeling of the drugs, the after effect of the drugs, the favours I have to ask, the vulnerability I have to display, and not only am I becoming friends with one of the Century City nurses, so is my escort.
But it's not a school night, and I have acupuncture tomorrow morning which will probably kick this puppy, at least for a few hours. Long enough for me to teach, I hope, and I'll keep my fingers crossed that I don't have to go in to work. Please, project, please finish before 1 and let me get my rest.
I had been making dinner plans for tomorrow, and there is a party I'd like to attend, but maybe dinner can be lunch instead, or postponed, and my simplest ride to the party isn't going, and I should get the rest anyway, since the past two weekends have been pretty much shot one way or another.
That's what it is for me...juggling the optional stuff as best I can. At some point, sleep seems to have made it onto the optional list. Not sure how that happened.
26 July, 2007
Recomendations include:
breaking a run of headache.
Interestingly enough, I swear this isn't what he told me--I have no idea what Ketoralac is. I thought my ED recommendation was for anti-inflammatory, anti-histamine, anti-emetic, and subcutaneous imitrex.
This is so tiresome.
Oh, that stings
From the Migraine Guru:
I saw (LA MIGRAINEUSE) as a consult for (NEURO) end of May/beginning of
June. I made several recommendations at that time. I am not certaint
that all those things have been tried. I also offered (LA MIGRAINEUSE)
admission to CHS 2 weeks ago (one of my recommendations from the
initial visit) but she declined due to work issues. She was admitted
over a weekend and did have moderate benefit from the D.H.E. She may
need successive treatments considering the duration of her daily
headache (one round/month). If you have access to infusion services in
the 100 building, she would not need admission since she has undergone
a course without difficulty. I had recommended Namenda but it appears
she is not taking that medication. I am not her primary neurologist
and she should continue to see (NEURO) with input from me.
Oh, I'm pissed. I did everything he suggested--why is he acting like I haven't? And the moderate benefit didn't happen!
I'm steamed. Just pissed.
I saw (LA MIGRAINEUSE) as a consult for (NEURO) end of May/beginning of
June. I made several recommendations at that time. I am not certaint
that all those things have been tried. I also offered (LA MIGRAINEUSE)
admission to CHS 2 weeks ago (one of my recommendations from the
initial visit) but she declined due to work issues. She was admitted
over a weekend and did have moderate benefit from the D.H.E. She may
need successive treatments considering the duration of her daily
headache (one round/month). If you have access to infusion services in
the 100 building, she would not need admission since she has undergone
a course without difficulty. I had recommended Namenda but it appears
she is not taking that medication. I am not her primary neurologist
and she should continue to see (NEURO) with input from me.
Oh, I'm pissed. I did everything he suggested--why is he acting like I haven't? And the moderate benefit didn't happen!
I'm steamed. Just pissed.
24 July, 2007
Things my body tells me fall into two camps. Migraine-related, or medication-related. I barely entertain the thought that I can just have a stomach ache or a bad mood or a racing pulse.
I stop myself from going to look at side effect lists when I try a new medication. I don't need any help manifesting physical stupidity. When someone else has a spell of insomnia it's stress or a bad couple weeks. I'm convinced that it's because of a medication change, or a shift in my migraine pattern.
It's like I'm willing my body into total subservience--no straying from the topic allowed.
So I wonder--is this just a stomache? I mean, I did just add a new med this morning.
I stop myself from going to look at side effect lists when I try a new medication. I don't need any help manifesting physical stupidity. When someone else has a spell of insomnia it's stress or a bad couple weeks. I'm convinced that it's because of a medication change, or a shift in my migraine pattern.
It's like I'm willing my body into total subservience--no straying from the topic allowed.
So I wonder--is this just a stomache? I mean, I did just add a new med this morning.
Meet the new regime(n)
So here are the major changes:
Rescue Meds: I have some. I am in what my Primary Care Physician called a Narcotic Contract. We agree on a certain ceiling of rescue meds a month, and I see him once a month to evaluate how it's going, and most importantly don't ask for more. I am also to be pursuing alternative means of lessening the migraines.
No problem! Can do!
Cedar Sinai Referral: Not as fruitful. I can't be referred outside of UCLA until they determine that they can't help me here. To that end...
Dropping the Neurologist: She'll be glad to hear this. My PCP is willing to run interference with the Migraine Guru for the time being. And he's going to talk to him ASAP.
Scuba diving: He's given me a sign off on it. Yay! It just remains to be seen how I feel.
Anti-depressants: Celexa has been added to my grab bag of meds to see if it can help with the mood. Not looking at therapy again right now.
Rescue Meds: I have some. I am in what my Primary Care Physician called a Narcotic Contract. We agree on a certain ceiling of rescue meds a month, and I see him once a month to evaluate how it's going, and most importantly don't ask for more. I am also to be pursuing alternative means of lessening the migraines.
No problem! Can do!
Cedar Sinai Referral: Not as fruitful. I can't be referred outside of UCLA until they determine that they can't help me here. To that end...
Dropping the Neurologist: She'll be glad to hear this. My PCP is willing to run interference with the Migraine Guru for the time being. And he's going to talk to him ASAP.
Scuba diving: He's given me a sign off on it. Yay! It just remains to be seen how I feel.
Anti-depressants: Celexa has been added to my grab bag of meds to see if it can help with the mood. Not looking at therapy again right now.
23 July, 2007
Threepeat, trifecta, trinity
What is this threesome of threesomes, you ask?
Two doctors and a nurse that treat me like I'm in pain and want to be out of it.
Insomnia, migraines, and depression which tangle themselves together.
Rescue meds, trigger point injections, and anti-depressants.
And that is the short form of two days in my medical life.
Two doctors and a nurse that treat me like I'm in pain and want to be out of it.
Insomnia, migraines, and depression which tangle themselves together.
Rescue meds, trigger point injections, and anti-depressants.
And that is the short form of two days in my medical life.
21 July, 2007
Stating the obvious
Chronic pain is, you know, hard.
I've had the misfortune to be on the suffering end of one other bout of chronic pain. It was suggested then that I get therapy, aside from the physical kind, to help my state of mind.
Which was, in a nutshell, miserable.
My answer to that is "I know what will cure my mood--curing my knee."
Lo and behold, I was right. In fact, my knee was cured twice--once by finding the right meds, and once by getting me off said meds and 100% pain free.
Pretty simple.
I'm older now, and probably either more stupid or less. Thinking of my mood being repaired with my migraines isn't enough. It's not like I had any idea when anyone was going to fix my knee, and in all truth I had fewer friends around and was more physically incapable than I am now.
So why did tomorrow seem less grave back then? Of course chronic pain is depressing, and the knee put me in more pain and on more weighty painkillers for longer.
A Henry Ford study says that migraine sufferers are five times as likely as the general population to develop depression. They have no stats for people with nerve damage to their knees, but I'm going assume the migraineurs take that too.
I won't pretend to know crap about the chemistry involved, but serotonin comes up a lot. One of the angles for treatment of migraine involves anti-depressants (oddly co-incidentally, another angle involves anti-epileptics which put me on Neurontin for the second time--the first being for the aforementioned knee injury). So I've been on more of those than most people.
I used to joke that by any measure of meds I should be way happier than the normal person, but the irony began to wear a little thin.
Plainly stated, it's pain. It's pain that no one else can see, and no one else can properly explain. Treatment is scattershot at best, and so far pretty damned ineffective. If depression is, as I once read, an inability to imagine a different tomorrow, it gets hard to construct a migraine free day in your imagination after a week full of ones that pegged the metre at 7 or above.
I know that psychosomatics can also be a factor here, so I do try my best not to wallow or prognosticate negatively.
And sometimes it works...not necessarily to prevent a migraine, but you'd be surprised at how often they take me unawares. How inbetween them I feel like I must be a whiner, exaggerating.
Yeah. I only wish that delusion lasted longer. More than 24 hours would rock.
There's a middle ground somewhere, where I accept but don't wallow. It's a very good feeling, even though it's gravely realistic. But it's where I can plan, and plan reasonably. I don't reach for the moon, setting myself up for disappointment when I fail, and I don't fall in on myself and foretell my own doom to all and sundry.
That's what I aim for, and that's what I wanted to get out of therapy. All I need is a mental health professional with similar goals--or at least that's where I'd like to start, and why I'm so disappointed in my initial foray into the field.
I need good coping mechanisms. Short and long term. That's what I look for. Complete personality overhauls don't fit within my schedule. Time is short.
In the meanwhile, I just keep reminding myself that everything is temporary. Everything.
I've had the misfortune to be on the suffering end of one other bout of chronic pain. It was suggested then that I get therapy, aside from the physical kind, to help my state of mind.
Which was, in a nutshell, miserable.
My answer to that is "I know what will cure my mood--curing my knee."
Lo and behold, I was right. In fact, my knee was cured twice--once by finding the right meds, and once by getting me off said meds and 100% pain free.
Pretty simple.
I'm older now, and probably either more stupid or less. Thinking of my mood being repaired with my migraines isn't enough. It's not like I had any idea when anyone was going to fix my knee, and in all truth I had fewer friends around and was more physically incapable than I am now.
So why did tomorrow seem less grave back then? Of course chronic pain is depressing, and the knee put me in more pain and on more weighty painkillers for longer.
A Henry Ford study says that migraine sufferers are five times as likely as the general population to develop depression. They have no stats for people with nerve damage to their knees, but I'm going assume the migraineurs take that too.
I won't pretend to know crap about the chemistry involved, but serotonin comes up a lot. One of the angles for treatment of migraine involves anti-depressants (oddly co-incidentally, another angle involves anti-epileptics which put me on Neurontin for the second time--the first being for the aforementioned knee injury). So I've been on more of those than most people.
I used to joke that by any measure of meds I should be way happier than the normal person, but the irony began to wear a little thin.
Plainly stated, it's pain. It's pain that no one else can see, and no one else can properly explain. Treatment is scattershot at best, and so far pretty damned ineffective. If depression is, as I once read, an inability to imagine a different tomorrow, it gets hard to construct a migraine free day in your imagination after a week full of ones that pegged the metre at 7 or above.
I know that psychosomatics can also be a factor here, so I do try my best not to wallow or prognosticate negatively.
And sometimes it works...not necessarily to prevent a migraine, but you'd be surprised at how often they take me unawares. How inbetween them I feel like I must be a whiner, exaggerating.
Yeah. I only wish that delusion lasted longer. More than 24 hours would rock.
There's a middle ground somewhere, where I accept but don't wallow. It's a very good feeling, even though it's gravely realistic. But it's where I can plan, and plan reasonably. I don't reach for the moon, setting myself up for disappointment when I fail, and I don't fall in on myself and foretell my own doom to all and sundry.
That's what I aim for, and that's what I wanted to get out of therapy. All I need is a mental health professional with similar goals--or at least that's where I'd like to start, and why I'm so disappointed in my initial foray into the field.
I need good coping mechanisms. Short and long term. That's what I look for. Complete personality overhauls don't fit within my schedule. Time is short.
In the meanwhile, I just keep reminding myself that everything is temporary. Everything.
20 July, 2007
Here's how my medical care currently breaks down:
Primary care physician. His name may currently be on some of my older migraine meds, like the triptans. He referred me to my neurologist (see below). A couple months ago he rescued me from a crisis with a prescription for Percoset and some trigger point injections. But I don't normally consider him part of the migraine regimen.
Neurologist. Poor woman. I have flummoxed her. She tries, but she can't keep up. She referred me both to a pain specialist (see below) and a migraine guru (see everywhere). She tries to be helpful. Which includes a prescription for very few of a very low dose of Percoset, and an exhortation not to go the ER. So, not the most actual help.
Pain Management Guy. He's given me trigger point injections and done the occipital bilateral nerve blocks. He's also the prescriber of my Lidoderm, lidocaine patches that I apply on my neck or shoulder.
Migraine Guru. Now, he doesn't see patients, per se. He consults with a doctor that sees you more often. He's seen me once, made the protocol for the hospital visit, and the soonest I could get back in to see him is September--and I made that appointment over a month ago. He has half a day of clinic time a week.
Migraine "specialist." Hrrmph. I was sent to her during one of the long waits for Guru. She saw me for about a year and just kept piling on the drugs and the hugs and really wanted me to take more Botox. We've come to a parting of the ways.
I emailed my neuro today with the summation of the post-DHE so far (short form: Ouch, what next?) and asked for next steps.
Contact the guru, she says. Now, I have neither an email address nor a direct phone number. He's House-like, I guess. So I have to leave messages and enter into phone tag at work about the pain.
Ah, well. That's for next week.
Also planned for next week is quite a treat. I've made an appointment with my PCP and I will plead for more trigger point injections. And...a referral to Cedars Sinai. Way less in my neighbourhood, but not prohibitively so. And a little bird emailed me to tell me that they have the area's best specialists.
Maybe they can get me in before September. We'll see.
I emailed my neuro today with the summation of the post-DHE so far (short form: Ouch, what next?) and asked for next steps.
Contact the guru, she says. Now, I have neither an email address nor a direct phone number. He's House-like, I guess. So I have to leave messages and enter into phone tag at work about the pain.
Ah, well. That's for next week.
Also planned for next week is quite a treat. I've made an appointment with my PCP and I will plead for more trigger point injections. And...a referral to Cedars Sinai. Way less in my neighbourhood, but not prohibitively so. And a little bird emailed me to tell me that they have the area's best specialists.
Maybe they can get me in before September. We'll see.
17 July, 2007
The hospital was...miserable is too dramatic, but I certainly feel my weekend was stolen...bleak.
My roomie spent much of her time moaning in pain after an angiogram to work out why she'd had a stroke after some sort of shunt.
Some guy kept wailing "Help! Call the paramedics!" Every outburst of his was followed by an annoyed nurse explaining to him that he was already in the hospital and that the paramedics couldn't help him.
I think they ended up tying him to the bed--I know I heard a few crashes that sounded like him hitting the floor.
They weren't trying to heal me this past weekend so much as they were experimenting on a new treatment and its efficacy. I did not pay attention to that distinction, and had been hoping that they would be all about the total migraine relief.
I have had many panic attacks about hospitalisation--I'm not sure having actually gone in will prevent the next one.
My roomie spent much of her time moaning in pain after an angiogram to work out why she'd had a stroke after some sort of shunt.
Some guy kept wailing "Help! Call the paramedics!" Every outburst of his was followed by an annoyed nurse explaining to him that he was already in the hospital and that the paramedics couldn't help him.
I think they ended up tying him to the bed--I know I heard a few crashes that sounded like him hitting the floor.
They weren't trying to heal me this past weekend so much as they were experimenting on a new treatment and its efficacy. I did not pay attention to that distinction, and had been hoping that they would be all about the total migraine relief.
I have had many panic attacks about hospitalisation--I'm not sure having actually gone in will prevent the next one.
16 July, 2007
It feels a bit less dire once you've had a chance to pee
::sigh::
Ill-omened from the start, but nowhere near as cold as I had worried.
Let me explain--no, too long. Let me sum up.
I spent the weekend being given doses of DHE and hopefully nothing else to see how my migraines and vital stats were affected (I was hooked up to nifty machines with alarms and an automatic blood pressure reader).
Couple issues:
Freaking loud, and intermittently smelly with chemicals--bode badly for migraines
Lying down for 48 hours is in no way useful modelling of my life, even a bad migraine weekend
You can't make the migraine go very far if you don't tend to the shoulder pain
I was an experiment. I understand that. They are studying DHE's efficacy on me, and lack of me-killingness. Much appreciated. However, this means they weren't tending to my pain--that would mess up the stats.
I did manage to get 1mg of Dilaudid (what I really wanted and thought I'd surely get were trigger point injections, but, no--opiates over local anesthesia) to bring down the shoulder and neck screaming, but the nurse tried continually to talk me out of treating it. "If you can bear it," he'd say, "then don't take anything."
"I can bear anything," I snarled. "I just don't want to. I don't want to end up in the ER because you've let two days of this pain go untreated."
Even then, after what seemed like conceding, he didn't administer it to me until I asked again, a full hour later than he said he would.
Now, it could have been a pharmacy thing. It took me four hours to get admitted because they hadn't been expecting me and the neuros were on rounds with people with actual problems (I'd call my roommate a whiner, but only in the sense that I'd probably whine if I had had multiple strokes in my early 30s). Then it took another four hours to get my first shot of anything.
On the up side, I got to meet a lady from Belize.
On the down side I was never formally discharged because I got fed up waiting for the wheelchair and left--my escort got a $45 ticket for not leaving me until I was admitted, and I really didn't want to inconvenience him any more. I'm paying or challenging the ticket, but still.
Money point: My head hurts right now, but at least I can take meds for it.
Next steps: Gonna make an appointment with my PCP for trigger point injections. Migraine guru can get back to me when he has his epiphany.
Ill-omened from the start, but nowhere near as cold as I had worried.
Let me explain--no, too long. Let me sum up.
I spent the weekend being given doses of DHE and hopefully nothing else to see how my migraines and vital stats were affected (I was hooked up to nifty machines with alarms and an automatic blood pressure reader).
Couple issues:
I was an experiment. I understand that. They are studying DHE's efficacy on me, and lack of me-killingness. Much appreciated. However, this means they weren't tending to my pain--that would mess up the stats.
I did manage to get 1mg of Dilaudid (what I really wanted and thought I'd surely get were trigger point injections, but, no--opiates over local anesthesia) to bring down the shoulder and neck screaming, but the nurse tried continually to talk me out of treating it. "If you can bear it," he'd say, "then don't take anything."
"I can bear anything," I snarled. "I just don't want to. I don't want to end up in the ER because you've let two days of this pain go untreated."
Even then, after what seemed like conceding, he didn't administer it to me until I asked again, a full hour later than he said he would.
Now, it could have been a pharmacy thing. It took me four hours to get admitted because they hadn't been expecting me and the neuros were on rounds with people with actual problems (I'd call my roommate a whiner, but only in the sense that I'd probably whine if I had had multiple strokes in my early 30s). Then it took another four hours to get my first shot of anything.
On the up side, I got to meet a lady from Belize.
On the down side I was never formally discharged because I got fed up waiting for the wheelchair and left--my escort got a $45 ticket for not leaving me until I was admitted, and I really didn't want to inconvenience him any more. I'm paying or challenging the ticket, but still.
Money point: My head hurts right now, but at least I can take meds for it.
Next steps: Gonna make an appointment with my PCP for trigger point injections. Migraine guru can get back to me when he has his epiphany.
13 July, 2007
Guru left a message this afternoon explaining why checking in Friday evening was a bad idea. Not enough manpower, and I'd likely be left hanging. Still...wouldn't it have gotten me out earlier? At least, not later?
Ah, never mind. Escort was set for Saturday morning--he's picking me up at 7:30am. The guru is understandably hard to reach. Apparently he has 1/2 a day of clinic time a week. But the scheduling coordinator doesn't answer her phone until after 4pm, I learnt yesterday. So not going to bother chasing down an earlier tee time.
His message instructed me to not take any more migraine meds because they can interact negatively with DHE. It was just a message, so I don't know if he means just abortives, or abortives and prophylactics. Still, the instructions say to show up empty handed (like, send your clothes back with your ride--so not happening), so I'll just steer clear of both categories of drugs from here on in.
Annoying, because I'm having a migraine. Not the sinusy one of yore, but what I consider my classic--it feels like my eye sockets are lined in sandpaper and my eyes are leaden and heavy.
As long as I can get to sleep, I should be fine.
I'd like to take a moment to wave at my mother--she offered to take on my anxiety attacks for me, since she'd be having one anyway.
Who knows? Maybe it'll work.
Ah, never mind. Escort was set for Saturday morning--he's picking me up at 7:30am. The guru is understandably hard to reach. Apparently he has 1/2 a day of clinic time a week. But the scheduling coordinator doesn't answer her phone until after 4pm, I learnt yesterday. So not going to bother chasing down an earlier tee time.
His message instructed me to not take any more migraine meds because they can interact negatively with DHE. It was just a message, so I don't know if he means just abortives, or abortives and prophylactics. Still, the instructions say to show up empty handed (like, send your clothes back with your ride--so not happening), so I'll just steer clear of both categories of drugs from here on in.
Annoying, because I'm having a migraine. Not the sinusy one of yore, but what I consider my classic--it feels like my eye sockets are lined in sandpaper and my eyes are leaden and heavy.
As long as I can get to sleep, I should be fine.
I'd like to take a moment to wave at my mother--she offered to take on my anxiety attacks for me, since she'd be having one anyway.
Who knows? Maybe it'll work.
Ugh. Hospitals.
As things stand, I'll be admitted for the DHE infusion tomorrow morning. I am both impatient and reluctant.
Part of me had hoped that this would be a big guns cure, but it seems it's something that is administered repeatedly if the first infusion proves effective.
Well, at least it's not botox, which should have gone in my alternative treatments entry.
Not reluctant enough to not do it, but...hospital. Cold, no personal space, no internet, no cell phone, no TV, no computer? Oy. I have books, I guess, and a brain. Maybe I'll poke through my yarns and see if I have enough for a crochet project.
This is a far cry from my initial reactions to the idea of hospitalisation, with 100% less freaking out. So it's an improvement.
The infusion will be doses every eight hours. From a wee bit of surfing they list anxiety as a possible side effect, and since I get that off of everything...well, I don't want to be a doomsayer, but I won't be surprised if it happens to me.
Now, if they could just render me unconscious for 48 hours, that'd be great.
I wasn't thinking clearly when I asked to be admitted on Saturday--that means I won't be released until Monday morning. I should mention to the boss that I'll be a little late.
Part of me had hoped that this would be a big guns cure, but it seems it's something that is administered repeatedly if the first infusion proves effective.
Well, at least it's not botox, which should have gone in my alternative treatments entry.
Not reluctant enough to not do it, but...hospital. Cold, no personal space, no internet, no cell phone, no TV, no computer? Oy. I have books, I guess, and a brain. Maybe I'll poke through my yarns and see if I have enough for a crochet project.
This is a far cry from my initial reactions to the idea of hospitalisation, with 100% less freaking out. So it's an improvement.
The infusion will be doses every eight hours. From a wee bit of surfing they list anxiety as a possible side effect, and since I get that off of everything...well, I don't want to be a doomsayer, but I won't be surprised if it happens to me.
Now, if they could just render me unconscious for 48 hours, that'd be great.
I wasn't thinking clearly when I asked to be admitted on Saturday--that means I won't be released until Monday morning. I should mention to the boss that I'll be a little late.
12 July, 2007
Alternatives
I've embarked upon a number of searches to find ways to manage my migraines other than medication.
Acupuncture: I still do this, once a week when I feel up to the drive on a Saturday morning. It kills a migraine dead, plus I like my acupuncturist a great deal (he's a fellow krav student). I have no idea if it has any lasting effect, but a short term effect stronger than meds? I'm all about that.
Biofeedback: I probably gave up on these sessions too soon. I admit I balk very quickly when a doctor's front desk people give me grief, but still. I got to the point where I could increase the blood flow to my extremities mostly on demand, and that could help alleviate migraines if done really early on. I still use that now. The problem with the other stuff was that I can't tell the difference without the monitoring equipment. I mean, I managed to do it, but only because I could tell by reading what was working and what wasn't. The memory of the effort wasn't enough for me to be able to duplicate it when unwired.
Pain management: This is totally apart from migraine meds. I've had two things--nerve blocks (2 of the 3 worked really well), and trigger point injections (oddly, the ones given to me by my pain management guy worked less well than the ones from one specific ER doc, or my primary care physician).
Dietary modification: I have some really obvious triggers. Artificial sweeteners and nitrites are pretty much guaranteed to cause a migraine. All the migraine specialists I spoke to said to keep avoiding what I could tell was a problem and to ignore anything more subtle. However people more into dietary mods keep telling me it's gluten or it's yeast or some other thing that would stop me from eating bread. I admit, I'm not that open-minded about giving those things a shot. It's not that I think the solution to the migraine problem needs to be easy--just that I don't know I have the energy to stick to anything that's not. My ER escort, as noted earlier, thinks that more salt=fewer migraines. He enjoyed forcing me to finish my bacon last night. Does that still count as sadism, if it's for my own good? Well, it probably doesn't count as sadism because I got a chocolate cupcake for my troubles. Still, pretty close. (side note: bacon's nitrites have never sparked a migraine, but most other meats will give me the whammy)
Physical therapy: This is either good or bad. On a delicate day like yesterday, they can't really touch me without triggering a migraine. I quit my last PT guy for a number of reasons, but even if I hadn't I was going to make sure he stopped working my neck. The pain bounces right up into a migraine, and he provoked at least one sick day before I bolted. The current PT people--well, I get a light massage, some ultrasound, heat, ice, and electrical stimulation, and then they watch me do my daily exercise. The best thing about them is that I get no grief for last-minute cancellations. My life has to be as cancellation-friendly as possible, sadly.
Psychotherapy: This is pissing me off. This post became more urgent because of the call I just took. I decided to go to a therapist to get coping mechanisms for my response to migraines. The guy decided he wanted to cure them. Admirable, but not the point. Not my point, anyway. I saw him 4 or 5 times, and was never able to get him back on the track *I* thought I needed. So, with the impending hospitalisation, I cancelled my upcoming appointments via phone message, telling him that I'd re-evaluate my direction after the DHE infusion. The bit where he calls me a couple days later to ask me to go over my intentions at least twice? Not endearing him to me. The bit where he tells me that my neuro and migraine guru want me to see a therapist? Not convincing me to make that therapist *him*. I hate being nagged, and he's nowhere near enough to me to get away with it.
Botox: Boy, did I hate this. I lost the ability to furrow my brows. And that's a key part of my teaching style. But seriously--it made no impact whatsoever on the frequency or severity of my migraines, and even the partial paralysis (didn't affect the lower half of my forehead) wore off pretty quickly. Figures, doesn't it? My body killed that toxin right dead.
Acupuncture: I still do this, once a week when I feel up to the drive on a Saturday morning. It kills a migraine dead, plus I like my acupuncturist a great deal (he's a fellow krav student). I have no idea if it has any lasting effect, but a short term effect stronger than meds? I'm all about that.
Biofeedback: I probably gave up on these sessions too soon. I admit I balk very quickly when a doctor's front desk people give me grief, but still. I got to the point where I could increase the blood flow to my extremities mostly on demand, and that could help alleviate migraines if done really early on. I still use that now. The problem with the other stuff was that I can't tell the difference without the monitoring equipment. I mean, I managed to do it, but only because I could tell by reading what was working and what wasn't. The memory of the effort wasn't enough for me to be able to duplicate it when unwired.
Pain management: This is totally apart from migraine meds. I've had two things--nerve blocks (2 of the 3 worked really well), and trigger point injections (oddly, the ones given to me by my pain management guy worked less well than the ones from one specific ER doc, or my primary care physician).
Dietary modification: I have some really obvious triggers. Artificial sweeteners and nitrites are pretty much guaranteed to cause a migraine. All the migraine specialists I spoke to said to keep avoiding what I could tell was a problem and to ignore anything more subtle. However people more into dietary mods keep telling me it's gluten or it's yeast or some other thing that would stop me from eating bread. I admit, I'm not that open-minded about giving those things a shot. It's not that I think the solution to the migraine problem needs to be easy--just that I don't know I have the energy to stick to anything that's not. My ER escort, as noted earlier, thinks that more salt=fewer migraines. He enjoyed forcing me to finish my bacon last night. Does that still count as sadism, if it's for my own good? Well, it probably doesn't count as sadism because I got a chocolate cupcake for my troubles. Still, pretty close. (side note: bacon's nitrites have never sparked a migraine, but most other meats will give me the whammy)
Physical therapy: This is either good or bad. On a delicate day like yesterday, they can't really touch me without triggering a migraine. I quit my last PT guy for a number of reasons, but even if I hadn't I was going to make sure he stopped working my neck. The pain bounces right up into a migraine, and he provoked at least one sick day before I bolted. The current PT people--well, I get a light massage, some ultrasound, heat, ice, and electrical stimulation, and then they watch me do my daily exercise. The best thing about them is that I get no grief for last-minute cancellations. My life has to be as cancellation-friendly as possible, sadly.
Psychotherapy: This is pissing me off. This post became more urgent because of the call I just took. I decided to go to a therapist to get coping mechanisms for my response to migraines. The guy decided he wanted to cure them. Admirable, but not the point. Not my point, anyway. I saw him 4 or 5 times, and was never able to get him back on the track *I* thought I needed. So, with the impending hospitalisation, I cancelled my upcoming appointments via phone message, telling him that I'd re-evaluate my direction after the DHE infusion. The bit where he calls me a couple days later to ask me to go over my intentions at least twice? Not endearing him to me. The bit where he tells me that my neuro and migraine guru want me to see a therapist? Not convincing me to make that therapist *him*. I hate being nagged, and he's nowhere near enough to me to get away with it.
Botox: Boy, did I hate this. I lost the ability to furrow my brows. And that's a key part of my teaching style. But seriously--it made no impact whatsoever on the frequency or severity of my migraines, and even the partial paralysis (didn't affect the lower half of my forehead) wore off pretty quickly. Figures, doesn't it? My body killed that toxin right dead.
And how long have you felt this way?
I've been having migraines for 30 years now, give or take. Since I was 8. I'm not sure when I decided they were migraines, and I know that at some point in my late teens I decided they weren't migraines, but cluster headaches.
How did people self-diagnose before the web? Wherever could I be getting my incomplete information?
I think I doubted them because I had no aura, and that always sounded like the big thing that separated the sheep from the goat.
The pain was very strongly lateral in those days, but I didn't know then that that was a migraine symptom too.
Of course, I haven't been "persistent and intractable" for all 30 years. Just a couple. They were pretty intermittent up till recently. Hell not only did I not know people went to the ER for severe migraines, I didn't even know about migraine-specific medication.
Boy, have I made up for lost time, or what?
I get auras now...I'm getting most of the symptoms, but thankfully not all at once. I've been asked by how long the auras precede the migraines, but to be honest it's very hard to tell. It's a bitch to take triptans for the very same reason--they're supposed to be taken as early as possible, but I rarely notice the start of a migraine. It's more like "Huh. Been feeling this crappy for an hour or two, eh?"
The first time I noted auras, I thought I'd unknowingly detached a retina. Because it was that same sort of visual interference--a ball of white light running up and down the outer edges of my vision. Occurs to me now that my self-diagnosed detached retina a million years ago may have actually been a precursor aura.
Ah, well.
The nature of my headaches has changed a lot. I used to get clarion clear pre-migraine symptoms: a craving for ginger and fish. These days there isn't enough space between them to have a "pre-migraine" period.
Learning that sinus headaches and migraines were linked was a bit of a revelation. Because I get a lot of those too. I'm in day three of one now, if you don't count the more traditional migraine of yesterday evening as starting the clock all over again.
They're a clear, bright, unilateral pain, and feel like...feel like someone's scraping a dry spoon across the inside of my brain pan. You can imagine that, right? Like a metallic version of nails on a chalkboard, with associated vibrations that run down your body?
None of the meds really work on these. Napping gives me a break, and they go away on their own.
How did people self-diagnose before the web? Wherever could I be getting my incomplete information?
I think I doubted them because I had no aura, and that always sounded like the big thing that separated the sheep from the goat.
The pain was very strongly lateral in those days, but I didn't know then that that was a migraine symptom too.
Of course, I haven't been "persistent and intractable" for all 30 years. Just a couple. They were pretty intermittent up till recently. Hell not only did I not know people went to the ER for severe migraines, I didn't even know about migraine-specific medication.
Boy, have I made up for lost time, or what?
I get auras now...I'm getting most of the symptoms, but thankfully not all at once. I've been asked by how long the auras precede the migraines, but to be honest it's very hard to tell. It's a bitch to take triptans for the very same reason--they're supposed to be taken as early as possible, but I rarely notice the start of a migraine. It's more like "Huh. Been feeling this crappy for an hour or two, eh?"
The first time I noted auras, I thought I'd unknowingly detached a retina. Because it was that same sort of visual interference--a ball of white light running up and down the outer edges of my vision. Occurs to me now that my self-diagnosed detached retina a million years ago may have actually been a precursor aura.
Ah, well.
The nature of my headaches has changed a lot. I used to get clarion clear pre-migraine symptoms: a craving for ginger and fish. These days there isn't enough space between them to have a "pre-migraine" period.
Learning that sinus headaches and migraines were linked was a bit of a revelation. Because I get a lot of those too. I'm in day three of one now, if you don't count the more traditional migraine of yesterday evening as starting the clock all over again.
They're a clear, bright, unilateral pain, and feel like...feel like someone's scraping a dry spoon across the inside of my brain pan. You can imagine that, right? Like a metallic version of nails on a chalkboard, with associated vibrations that run down your body?
None of the meds really work on these. Napping gives me a break, and they go away on their own.
The nose may know, but it sure doesn't remember
Allergic rhinitis is one of the few things I was tested for that came out positive. I'm an eerily healthy woman suffering from "persistent and intractable migraines."
But I am allergic to dust mites, and a little to grass.
The anti-allergy meds are so hard for me to remember. They're not fittable into a nifty pill case and taken with me wherever I go. No, I need to remember, morning and evening, to double-squirt the Nasonex, and one squirt each nostril of the Astelin.
I have no idea if the allergy contributes to the migraines, but I can't argue with less congestion.
I'm half-assedly managing for dust mites at home. I have a Roomba now, because that's the only way the place can get vacuumed more than once a week. Mattress is esconced in a noisy mattress cover, and the stuffed toy is periodically frozen (I'd wash it in hot water, but the poor thing is delicate these days--certainly won't stand up to weekly washes).
We'll see.
But I am allergic to dust mites, and a little to grass.
The anti-allergy meds are so hard for me to remember. They're not fittable into a nifty pill case and taken with me wherever I go. No, I need to remember, morning and evening, to double-squirt the Nasonex, and one squirt each nostril of the Astelin.
I have no idea if the allergy contributes to the migraines, but I can't argue with less congestion.
I'm half-assedly managing for dust mites at home. I have a Roomba now, because that's the only way the place can get vacuumed more than once a week. Mattress is esconced in a noisy mattress cover, and the stuffed toy is periodically frozen (I'd wash it in hot water, but the poor thing is delicate these days--certainly won't stand up to weekly washes).
We'll see.
11 July, 2007
Med-Go-Round
Right now my prophylactics (daily meds to minimise (in theory) the severity & number of migraines) are:
Depakote, 3x150mg --it's an anti-epilepsy drug
Elavil, 1x1000mg --it's an anti-depressant
Vitamin B2, 1x500mg
Magnesium, 1x500mg
I couldn't tell you how any of them are working. I couldn't even tell you side effects. I think I'm just used to feeling weird, one way or another.
This particular mix is a few weeks old. Drugs I've come off of include:
Neurontin
Topamax
Wellbutrin
Cymbalta
Probably more. It's hazy by now. But basically anti-depressants and anti-epileptics. There is another popular option of beta blockers, but I have crazy low blood pressure (escort opines all my migraines can be fixed with some good old NaCl, but having had a bag of chips yesterday, I don't know if I could live that way...) so those are out.
Abortives, drugs taken once the migraine is on include:
Imitrex (15 or so a month)
Maxalt (15 or so a month)
Frovatriptan (9 or so, so far)
Eh. None of them work reliably, but they're better than nothing so I keep going through the mechanics.
My insurance company hates me. I think they would rather I took no more than 9 of just one of those triptans a month.
Hey, me too. But let's accept the impracticality of that. I had to get dispensation to fill 18 Maxalt and 18 Imitrex. Then I get prescribed 18 Frovawhatsits, and they're just not happy. Hell, even for the Imitrex and Maxalt I have to fill them twice a month, instead of 18 at once.
I figure they're a lot cheaper than ER visits, but I'm not in charge here.
Rescue medications (taken in case the prophylactics allowed the migraine to start and the abortives failed to stop it--mostly I'm trying to be unconscious):
Percocet
Flexoril
Ambien
I'm not on any of them these days. I had an initial 50 pill presciption of Percocet, plus assorted leftover Flexoril and Ambien. I tossed the leftover drugs in a fit of toeing the line, and my neuro won't give me a prescription of Percocet in a high enough dosage to even touch my pain. So I have nothing--if I need rescue, I either suck it up or call for a ride to the ER.
ER drugs (the first 5 are the migraine guru-recommended combo):
IV Compazine--massive anxiety attacks. Can't take this unless it's with
IV Benadryl
IV Toradol--it's an anti-inflammatory
IM Imitrex (the abortive, but shortcut)
IV Dilaudid--I've had up to 10mg, and that was just awful, and there was no added relief once I went past 6. Escort won't let them give me more than that.
IV Demerol--just no. That was horrible. Escort had to keep me talking throughout the paltry 2mg because when I stopped talking I fell asleep and then woke up with a horrible start because I'd stop breathing
IM Dilaudid--yeah, that was by mistake because the IV slipped. So very miserable.
IV Phenergan--sometimes given to me when escort informs them of the adverse reaction to compazine. Don't have a clue what it does.
The dilaudid has anxiety side effects too, and I've finally discerned (with some reading up) that the anxiety attacks I have the day after are probably med-related. Doesn't make them go away, this knowledge. But it does make them a wee bit more bearable.
I couldn't tell you how any of them are working. I couldn't even tell you side effects. I think I'm just used to feeling weird, one way or another.
This particular mix is a few weeks old. Drugs I've come off of include:
Probably more. It's hazy by now. But basically anti-depressants and anti-epileptics. There is another popular option of beta blockers, but I have crazy low blood pressure (escort opines all my migraines can be fixed with some good old NaCl, but having had a bag of chips yesterday, I don't know if I could live that way...) so those are out.
Abortives, drugs taken once the migraine is on include:
Eh. None of them work reliably, but they're better than nothing so I keep going through the mechanics.
My insurance company hates me. I think they would rather I took no more than 9 of just one of those triptans a month.
Hey, me too. But let's accept the impracticality of that. I had to get dispensation to fill 18 Maxalt and 18 Imitrex. Then I get prescribed 18 Frovawhatsits, and they're just not happy. Hell, even for the Imitrex and Maxalt I have to fill them twice a month, instead of 18 at once.
I figure they're a lot cheaper than ER visits, but I'm not in charge here.
Rescue medications (taken in case the prophylactics allowed the migraine to start and the abortives failed to stop it--mostly I'm trying to be unconscious):
I'm not on any of them these days. I had an initial 50 pill presciption of Percocet, plus assorted leftover Flexoril and Ambien. I tossed the leftover drugs in a fit of toeing the line, and my neuro won't give me a prescription of Percocet in a high enough dosage to even touch my pain. So I have nothing--if I need rescue, I either suck it up or call for a ride to the ER.
ER drugs (the first 5 are the migraine guru-recommended combo):
The dilaudid has anxiety side effects too, and I've finally discerned (with some reading up) that the anxiety attacks I have the day after are probably med-related. Doesn't make them go away, this knowledge. But it does make them a wee bit more bearable.
A tale of two ERs
When I have a migraine crisis, I have a practical choice of two emergency departments. Century City Doctors' Hospital is a nearby boutique-style hospital that has short waiting times. UCLA Westwood is also nearby, and has many more doctors at its disposal, but everyone and their wounded aunt goes there--the wait time is markedly proportional to the severity of your issue, and really, how much does a headache count? All of my inside bits are still on the inside, and the outside bits both attached and outside.
However, my ongoing care is from doctors in the UCLA Medical Centre network. It'd be silly to live where I do and go anywhere else for neuro, GP, pain management, etc.
I don't care about them during a crisis (defined as a headache that's going to mess with my ability to go into work the next day--so I don't have Friday or Saturday crises, and I rarely have crises before 7 or so--those are just really painful headaches). I just care about making the pain get gone.
So I end up at Century City more often than not.
I have to say--some of the care I've received there is excellent. Nurse P is amazing. He's probably taken the most detailed medical history of my headaches any medical professional has tried to get. He cares, and he remembers. The last time I was in there, he spotted me in triage and came out to hold my hand and look sadly at me as I snivelled.
I don't worry about feeling like a drugseeker around him, or around a couple of the other doctors that have seen me before.
However, the single worst migraine-related ER visit was also to Century City, and my ER escort will probably visit his wrath on Dr K, should their paths meet again.
CC won't tell you who's on duty. I've tried calling to ask. Perhaps next time I'll call to ask for Dr. K and see what happens.
The level of care at UCLA Westwood isn't bad, don't get me wrong. I just hate hospitals, and it's hospitallier than most, and I've fallen through the cracks there and ended up spending extra hours just waiting. Given my propensity for anxiety attacks from the various meds, well, that's pretty unpleasant before you get to the part where I'm asking a friend to sit with me and wait too.
But I'm picking up the level of my ongoing care, and the migraine guru wants me admitted for a DHE infusion, and that'll be at UCLA. Also, at UCLA they didn't think I'd been doing that badly, since my visits there were sparse.
Yeah.
That.
My hope is to be admitted this weekend, to UCLA, and maybe we'll call that starting from scratch. Get 48 hours of DHE and see what happens.
I'm currently at 10 days between crises, and that's so not on.
However, my ongoing care is from doctors in the UCLA Medical Centre network. It'd be silly to live where I do and go anywhere else for neuro, GP, pain management, etc.
I don't care about them during a crisis (defined as a headache that's going to mess with my ability to go into work the next day--so I don't have Friday or Saturday crises, and I rarely have crises before 7 or so--those are just really painful headaches). I just care about making the pain get gone.
So I end up at Century City more often than not.
I have to say--some of the care I've received there is excellent. Nurse P is amazing. He's probably taken the most detailed medical history of my headaches any medical professional has tried to get. He cares, and he remembers. The last time I was in there, he spotted me in triage and came out to hold my hand and look sadly at me as I snivelled.
I don't worry about feeling like a drugseeker around him, or around a couple of the other doctors that have seen me before.
However, the single worst migraine-related ER visit was also to Century City, and my ER escort will probably visit his wrath on Dr K, should their paths meet again.
CC won't tell you who's on duty. I've tried calling to ask. Perhaps next time I'll call to ask for Dr. K and see what happens.
The level of care at UCLA Westwood isn't bad, don't get me wrong. I just hate hospitals, and it's hospitallier than most, and I've fallen through the cracks there and ended up spending extra hours just waiting. Given my propensity for anxiety attacks from the various meds, well, that's pretty unpleasant before you get to the part where I'm asking a friend to sit with me and wait too.
But I'm picking up the level of my ongoing care, and the migraine guru wants me admitted for a DHE infusion, and that'll be at UCLA. Also, at UCLA they didn't think I'd been doing that badly, since my visits there were sparse.
Yeah.
That.
My hope is to be admitted this weekend, to UCLA, and maybe we'll call that starting from scratch. Get 48 hours of DHE and see what happens.
I'm currently at 10 days between crises, and that's so not on.
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