Last Friday I walked out of a doctor's appointment after disagreeing with how much I was being charged to have b*tox injections for my migraines. By 5:00 Friday evening, the doctor had called four times and left two messages. Each time she called, I was still too worked up and upset to answer the phone or listen to her messages. But when I finally did, I was pleasantly surprised.
She apologized for the confusion and said that from now on she'd code my injections as an office visit, not a procedure, so I'd only be charged the co-pay and the cost of the medication. Instead of paying $600 for four shots, I'll only have to cough up $250, which, from my research, is pretty standard.
This is proof that being the Squeaky Wheel and standing up for yourself with doctors and health insurance companies can work. I'll be calling the doctor back today to thank her for changing her billing procedure and to make an appointment.
Now on to other bits and pieces.
My cell phone has been missing for more than a week now. I'm pretty sure it's in the house somewhere. I remember getting in the car last Sunday and realizing I didn't have it with me, but I decided not to go back in for it given that Elizabeth and Campbell were standing with their noses pressed against the front window crying because I was leaving them behind.
I have searched the house and have offered a reward to the big girls if they find it. I've looked under beds and in toy boxes and in closets, but no luck.
Much to B's frustration, I almost never carry the thing and rarely use it. But now that I don't have it, I really miss it. Now I'm trying to convince B that I need an iPhone as a replacement, but he's not going for it - yet.
Finally, I had a post picked up by the nice folks over at Deep South Moms blog. It's about trying to find a balance between being a mom and not a coach. Please go take a look, and maybe leave a comment.
I didn't get up to run at 5:30 this morning because I'd been up three times with Elizabeth, who still isn't feeling well. But now I think I'm going to pop her in the jogger and see if I can squeeze in a few miles. It's too nice a morning to miss out on running.
Showing posts with label migraines. Show all posts
Showing posts with label migraines. Show all posts
Monday, April 26, 2010
Friday, April 23, 2010
And then I walked out
As I've written, I had b*tox injections in my forehead back in February in the hopes of getting my migraines under control. The results have been mixed. There have definitely been days where I could tell I was having a migraine, but I just couldn't feel the pain. And then there have been days where I was flat in bed with an ice pack on my head.
The doctor told me that she had given me a fairly low dose of b*tox as a baseline and that the effects might wear off before the predicted three months, and that's exactly what happened. So two weeks ago, I called the doctor's office to make an appointment for another round. Amazingly, the doctor herself called me back to talk about my options. I was stunned at the personal response.
In the meantime, I'd received a bill for $160 from the doctor's office. The original amount of the bill had been $350 but they had reduced it by $140 for the Humana "discount," whatever that was. I called the billing office and asked what was going on. I explained that I had already paid the $50 co-pay and the $200 for the b*t0x itself and asked what this new charge was for. The billing office lady told me it was the cost for the "procedure" of actually doing the injections.
I was stunned - $350 plus $50 for four shots.
When I told the business office lady that no one had told me about the procedure fee and that it pushed this treatment out of the realm of affordability for me, she told me that she'd talk to the doctor and give me an answer at my next appointment.
The appointment was this morning, and before I even paid my co-pay, I asked to talk to the business office lady to see if was going to be dinged the procedure fee again. When she came out and I re-explained my concerns, she said, "There's always a procedure fee."
I turned to the appointment lady and told her to cancel my appointment, and then I walked out and cried in the car for a few minutes out of sheer frustration.
I completely understand that doctors need to make money and cover their overhead. I'm not arguing with that. It's just that I don't think that four shots into my forehead should cost me $600.
So now I'm looking at other options, including calling my primary doctor to see if he has any suggestions. I may even go to one of those shopping mall med-spa places that host b*tox parties. At least there, I can get cocktails along with my b*tox.
The doctor told me that she had given me a fairly low dose of b*tox as a baseline and that the effects might wear off before the predicted three months, and that's exactly what happened. So two weeks ago, I called the doctor's office to make an appointment for another round. Amazingly, the doctor herself called me back to talk about my options. I was stunned at the personal response.
In the meantime, I'd received a bill for $160 from the doctor's office. The original amount of the bill had been $350 but they had reduced it by $140 for the Humana "discount," whatever that was. I called the billing office and asked what was going on. I explained that I had already paid the $50 co-pay and the $200 for the b*t0x itself and asked what this new charge was for. The billing office lady told me it was the cost for the "procedure" of actually doing the injections.
I was stunned - $350 plus $50 for four shots.
When I told the business office lady that no one had told me about the procedure fee and that it pushed this treatment out of the realm of affordability for me, she told me that she'd talk to the doctor and give me an answer at my next appointment.
The appointment was this morning, and before I even paid my co-pay, I asked to talk to the business office lady to see if was going to be dinged the procedure fee again. When she came out and I re-explained my concerns, she said, "There's always a procedure fee."
I turned to the appointment lady and told her to cancel my appointment, and then I walked out and cried in the car for a few minutes out of sheer frustration.
I completely understand that doctors need to make money and cover their overhead. I'm not arguing with that. It's just that I don't think that four shots into my forehead should cost me $600.
So now I'm looking at other options, including calling my primary doctor to see if he has any suggestions. I may even go to one of those shopping mall med-spa places that host b*tox parties. At least there, I can get cocktails along with my b*tox.
Friday, February 19, 2010
B*tox report
It's been two weeks since I had my B*tox injections, and they seemed to have worked. There have been two days when I could tell I was having a migraine - I had the weird visual disturbances, nausea, tingling in the back of my neck - but I couldn't feel the usual migraine pain. I was able to get past yucky side effects by taking some advil and drinking half a Coke.
Hallelujah.
As for the visible signs that I've had B*tox - you can't tell unless you know where to look. I can't furrow my brow anymore, which means I can't give the kids my patented stern look. B laughs at me every time catches me trying. Apparently I make a funny scrunched up face when I do it.
I know I said I'd do before-and-after pictures, but I just can't bear to put my goofy face out there for public ridicule.
My doctor said the effects of the injections should last for about three months, which means I'll be ready for another set right before the summer. The miserably hot weather here always makes my migraines more frequent and more severe, so the possibility of spending a summer without pain makes me not dread the coming months quite as much.
I'll just need to remind myself of the benefits of the injections while I'm lying there waiting to have the needles jabbed in my head again.
Hallelujah.
As for the visible signs that I've had B*tox - you can't tell unless you know where to look. I can't furrow my brow anymore, which means I can't give the kids my patented stern look. B laughs at me every time catches me trying. Apparently I make a funny scrunched up face when I do it.
I know I said I'd do before-and-after pictures, but I just can't bear to put my goofy face out there for public ridicule.
My doctor said the effects of the injections should last for about three months, which means I'll be ready for another set right before the summer. The miserably hot weather here always makes my migraines more frequent and more severe, so the possibility of spending a summer without pain makes me not dread the coming months quite as much.
I'll just need to remind myself of the benefits of the injections while I'm lying there waiting to have the needles jabbed in my head again.
Wednesday, November 26, 2008
Not quite a post
Any other month I wouldn't be posting today, but there are only 4 more days until the end of NaBloPoMo, and I hate to give up now. I have a blinding migraine and feel like someone has driven an ice pick through my right eye AND hit me in the side of my head with a shovel. I'm out of Imitrex and can't get any until I see my new neurologist on Monday. Fortunately, I had a refill of the pain meds my OB gave me for migraines when I was pregnant.
Now that I've written my post, such as it is, I'm going back to bed.
Now that I've written my post, such as it is, I'm going back to bed.
Friday, March 07, 2008
Mostly dead all day
I was mostly dead all day yesterday with the worst migraine I've had in years. It started Wednesday afternoon, and I would have liked to go to bed right away, but I had to meet B to take care of some financial stuff and sign a million documents.
Finally, at 8:00 I was able to take a pain pill and curl up in bed with an ice pack on my head. I had to get up early for an appointment with my new neurologist, which went ok, feelings of nausea aside. He countermanded all my old doctor's instructions and told me I could take Imitrex as needed and didn't limit the amount I could take. He also told me I didn't have to give up caffeine or exercise every day. He also didn't try to put me on any preventive medicines, which was a relief. I was glad not to have to argue with another doctor about why I didn't want to be on a daily medicine.
After my appointment I went home and tucked back into bed for the rest of the day. Fortunately, B, bless his little heart, was able to take the day off and stay home to help. He took Lily to her beloved "ballelet" class; it was "Parent Watching Day," so he was able to see the performance they had been practicing.
I emerged in time for dinner, ate some pizza - the first food I'd had since the day before - and immediately regretted it. After bathing the kids, I shooed them into the living room to B and crawled back into bed with another ice pack.
There were times in the middle of night that I truly thought the migraine would never end. I'd taken as much medication as I was allowed in 24 hours, but it hadn't worked. I wasn't sure what I should do next. Fortunately, I fell asleep after a few hours and woke up feeling moderately better.
My migraine is gone, but I still feel completely wiped out. As soon as Campbell falls asleep for his nap, I'm going back to bed for an hour or so. Perhaps I'll feel better then. I'm just hoping it's another few years before I have a migraine like this again.
Finally, at 8:00 I was able to take a pain pill and curl up in bed with an ice pack on my head. I had to get up early for an appointment with my new neurologist, which went ok, feelings of nausea aside. He countermanded all my old doctor's instructions and told me I could take Imitrex as needed and didn't limit the amount I could take. He also told me I didn't have to give up caffeine or exercise every day. He also didn't try to put me on any preventive medicines, which was a relief. I was glad not to have to argue with another doctor about why I didn't want to be on a daily medicine.
After my appointment I went home and tucked back into bed for the rest of the day. Fortunately, B, bless his little heart, was able to take the day off and stay home to help. He took Lily to her beloved "ballelet" class; it was "Parent Watching Day," so he was able to see the performance they had been practicing.
I emerged in time for dinner, ate some pizza - the first food I'd had since the day before - and immediately regretted it. After bathing the kids, I shooed them into the living room to B and crawled back into bed with another ice pack.
There were times in the middle of night that I truly thought the migraine would never end. I'd taken as much medication as I was allowed in 24 hours, but it hadn't worked. I wasn't sure what I should do next. Fortunately, I fell asleep after a few hours and woke up feeling moderately better.
My migraine is gone, but I still feel completely wiped out. As soon as Campbell falls asleep for his nap, I'm going back to bed for an hour or so. Perhaps I'll feel better then. I'm just hoping it's another few years before I have a migraine like this again.
Monday, February 11, 2008
Caffeine, wonderful caffeine
Last Thursday I called my neurologist's office to report that her new treatment method of not providing treatment for my migraines wasn't working. I talked with the nurse, who wasn't the regular nurse, and told her that I've been off caffeine for 30 days and following the doctor's recommendation of not using Imitrex more than one day out of seven and taking Advil when I couldn't take Imitrex. She said she'd talk to the doctor and call me back.
Twenty-four hours later she called back to give me the name and number of a different neurologist, one who specializes in pain management. At that point, I got a little hysterical and started ranting about how I didn't feel like Dr. R. was providing treatment and how I might as well be taking Jellybeans for the pain for all the good the Advil was doing me (thanks, Barb, for the analogy).
Well the nurse obviously told the doctor what I'd said, because fifteen minutes later, the doctor was on the phone to talk me down. It didn't go well.
She again asked if I'd consider daily preventive medicine, and I again explained that every time I've taken daily meds, my life has gotten worse, not better. She told me she was at a loss on how to treat my migraines any further and suggested I call the pain management doc and possibly find a new neurologist who was better versed in treating migraines. She offered to call in any and all refills for me - including Imitrex and my pain pills - while I was finding a new doc, and told me I was welcome to take the Imitrex and pain meds as much as needed. WTF? Why did she tell me not to take them, then?
So I think we've agreed to mutually fire each other. And I'll be looking for a new doc.
To "celebrate" I drank a real coke this morning, one with caffeine. I figured that if I can take the meds again, I can have caffeine. The funny thing is, as much as I've craved a real coke during the past month, it didn't taste as good as I expected it to, and I feel rather guilty about giving in on the no-caffeine gig. I've resolved yet again not to have any more caffeine, at least not until the end of lent. Or until my doc gives me permission to have it, whichever comes first.
Twenty-four hours later she called back to give me the name and number of a different neurologist, one who specializes in pain management. At that point, I got a little hysterical and started ranting about how I didn't feel like Dr. R. was providing treatment and how I might as well be taking Jellybeans for the pain for all the good the Advil was doing me (thanks, Barb, for the analogy).
Well the nurse obviously told the doctor what I'd said, because fifteen minutes later, the doctor was on the phone to talk me down. It didn't go well.
She again asked if I'd consider daily preventive medicine, and I again explained that every time I've taken daily meds, my life has gotten worse, not better. She told me she was at a loss on how to treat my migraines any further and suggested I call the pain management doc and possibly find a new neurologist who was better versed in treating migraines. She offered to call in any and all refills for me - including Imitrex and my pain pills - while I was finding a new doc, and told me I was welcome to take the Imitrex and pain meds as much as needed. WTF? Why did she tell me not to take them, then?
So I think we've agreed to mutually fire each other. And I'll be looking for a new doc.
To "celebrate" I drank a real coke this morning, one with caffeine. I figured that if I can take the meds again, I can have caffeine. The funny thing is, as much as I've craved a real coke during the past month, it didn't taste as good as I expected it to, and I feel rather guilty about giving in on the no-caffeine gig. I've resolved yet again not to have any more caffeine, at least not until the end of lent. Or until my doc gives me permission to have it, whichever comes first.
Monday, January 14, 2008
Success! Or, Caffeine withdrawal, day 6
I think I've successfully gotten caffeine out of my system, along for my craving of that morning cup of goodness. The best part is that I haven't had a withdrawal-induced headache since the blinding one on Friday.
Now I just need to get out of the habit of asking for iced tea or coke when I go out to eat. I had to stop myself on Saturday night when I went out to dinner with a friend. I was desperately tired and still had a function to go to later that night - fodder for another post - and I almost ordered a coke, just to wake myself up a bit. But I resisted temptation and had water instead. As a result, though, I only lasted an hour at the after-dinner event before going home and tucking myself in at 11:00.
I really could have used a cup of coffee this morning. Campbell decided that he wanted to party like a rock star at about 4:00 am. I let him fuss in his bed for an hour or so until he started really screaming. I gave in and got him up, stretching out on the sofa with him on my chest. He finally fell back asleep at about 5:30. I however, did not. Fortunately, B was home this morning, so when I put Campbell down for his nap, I ignored my work and took one too. Campbell woke up long before I did, so B kept an eye on him.
Now that I'm off caffeine, I'm feeling quite proud of myself. But I wonder how long it will be before I slip up and have a coke.
Now I just need to get out of the habit of asking for iced tea or coke when I go out to eat. I had to stop myself on Saturday night when I went out to dinner with a friend. I was desperately tired and still had a function to go to later that night - fodder for another post - and I almost ordered a coke, just to wake myself up a bit. But I resisted temptation and had water instead. As a result, though, I only lasted an hour at the after-dinner event before going home and tucking myself in at 11:00.
I really could have used a cup of coffee this morning. Campbell decided that he wanted to party like a rock star at about 4:00 am. I let him fuss in his bed for an hour or so until he started really screaming. I gave in and got him up, stretching out on the sofa with him on my chest. He finally fell back asleep at about 5:30. I however, did not. Fortunately, B was home this morning, so when I put Campbell down for his nap, I ignored my work and took one too. Campbell woke up long before I did, so B kept an eye on him.
Now that I'm off caffeine, I'm feeling quite proud of myself. But I wonder how long it will be before I slip up and have a coke.
Friday, January 11, 2008
Caffeine withdrawal, day 3
I thought for sure that by day 3 I'd be through the worst of the withdrawal, but I'm not. I didn't crave coffee this morning, but the lack-of-caffeine-induced headache kicked in earlier today than it did yesterday, and instead of having a plain old headache like I had yesterday, I definitely have a full-blown migraine. I popped three Advil liquid gels, just like my doctor recommended . . . and nothing happened. Even though I've already taken Imitrex once this week, I took another one an hour or so ago. I'll risk the possible rebound migraine in exchange for not throwing up all day.
What gets me is that I know it's an easy problem to solve. All I have to do is drink a cup of coffee and all this goes away. But now that I'm three days in, I can't give up. However, if the headaches go on much longer or get much worse, I may rethink that position.
And I promise, no more whiny posts about this. You won't hear about caffeine withdrawal again until I'm successful.
What gets me is that I know it's an easy problem to solve. All I have to do is drink a cup of coffee and all this goes away. But now that I'm three days in, I can't give up. However, if the headaches go on much longer or get much worse, I may rethink that position.
And I promise, no more whiny posts about this. You won't hear about caffeine withdrawal again until I'm successful.
Thursday, January 10, 2008
Caffeine withdrawal, day 2
First, a big thank you to everyone for their words of support and commiseration. I received more e-mails and comments about my posts on giving up caffeine than I have ever gotten before. Turns out it's a hot topic.
Now on to my progress. I decided to go cold turkey today, and it wasn't easy. I made coffee for B this morning, like I do every morning, and I really, really wanted to pour myself a cup. It turns out I really like that part of my morning routine, I just didn't know it until I couldn't have the coffee. My tall glass of cold milk, usually my favorite beverage, really didn't do a good job of taking coffee's place.
Once I got over missing part of my routine, the morning went well, until about 11:00 when I got a headache from hell. I was at my favorite bakery at the time, picking up treats for Barb and her daughters, and I was so tempted to order a large iced tea, knowing that it would be a simple fix for my headache. But I sucked it up and had my friend L bring some Aleve with her to the girls' ballet class.
The Aleve didn't really help the headache. I managed to hold things together through Lily's dance class, but I skipped going to the grocery store on the way home. I couldn't bear the thought of shepherding Lily and Campbell through Central Market with my head pounding like that.
Fortunately, B was at the house when we got home, so he hung out with Lily while Campbell and I took a nap. I slept for about two hours. While my head feels a bit better, I still have a headache.
Despite the headaches, I'm not giving up on getting caffeine out of my system. If cutting caffeine out of my diet will eliminate at least 1/4 of my migraines, a couple of days of headaches will be worth it.
Now on to my progress. I decided to go cold turkey today, and it wasn't easy. I made coffee for B this morning, like I do every morning, and I really, really wanted to pour myself a cup. It turns out I really like that part of my morning routine, I just didn't know it until I couldn't have the coffee. My tall glass of cold milk, usually my favorite beverage, really didn't do a good job of taking coffee's place.
Once I got over missing part of my routine, the morning went well, until about 11:00 when I got a headache from hell. I was at my favorite bakery at the time, picking up treats for Barb and her daughters, and I was so tempted to order a large iced tea, knowing that it would be a simple fix for my headache. But I sucked it up and had my friend L bring some Aleve with her to the girls' ballet class.
The Aleve didn't really help the headache. I managed to hold things together through Lily's dance class, but I skipped going to the grocery store on the way home. I couldn't bear the thought of shepherding Lily and Campbell through Central Market with my head pounding like that.
Fortunately, B was at the house when we got home, so he hung out with Lily while Campbell and I took a nap. I slept for about two hours. While my head feels a bit better, I still have a headache.
Despite the headaches, I'm not giving up on getting caffeine out of my system. If cutting caffeine out of my diet will eliminate at least 1/4 of my migraines, a couple of days of headaches will be worth it.
Wednesday, January 09, 2008
Caffeine withdrawal, day 1
Even though I'm not sure I trust my doctor's recommendation about giving up caffeine, I figured it was worth a try, so this morning I made coffee for B but didn't drink my usual half cup. I did, however, stop at my favorite breakfast taco place on the way home from taking Lily to preschool, and I got a coke and two tacos. A coke has about 1/3 the amount of caffeine of coffee, so I figured drinking half a coke was a good first step in weaning myself.
But no, I currently have a blinding headache. And the Advil the doctor recommended I take for pain? It hasn't even begun to touch it. I think it may have even made my headache worse, even though I treated myself an hour-long nap after taking the Advil.
I was able to take the nap because for the first time since December 20, Campbell and I are back to our normal little morning routine. Both girls are back at school - hallelujah! So when I put Campbell down for his nap, I curled up in bed. Unfortunately, Campbell woke up much too soon for my liking; I could have slept another hour.
I'll continue the break-up with caffeine tomorrow by going cold turkey. Today's headache is bad enough that I don't want to prolong the agony any longer than I have to. All I can say is this better be worth it! I'd better not have another migraine for months.
But no, I currently have a blinding headache. And the Advil the doctor recommended I take for pain? It hasn't even begun to touch it. I think it may have even made my headache worse, even though I treated myself an hour-long nap after taking the Advil.
I was able to take the nap because for the first time since December 20, Campbell and I are back to our normal little morning routine. Both girls are back at school - hallelujah! So when I put Campbell down for his nap, I curled up in bed. Unfortunately, Campbell woke up much too soon for my liking; I could have slept another hour.
I'll continue the break-up with caffeine tomorrow by going cold turkey. Today's headache is bad enough that I don't want to prolong the agony any longer than I have to. All I can say is this better be worth it! I'd better not have another migraine for months.
Tuesday, January 08, 2008
Farewell, caffeine
I had an odd appointment with my neurologist yesterday, odd enough that I might be looking for a new doctor. Up until this time, I've liked Dr. R. She took over my old neurologist's practice, which I think he may have left just to be rid of me. I left every appointment thinking that he just didn't know what to make of me. Anyway, Dr. R is just a few years older than I, she has three kids, and she gets migraines. Those last two items are particularly important to me - she knows what it's like to be suffering from a migraine AND running after three kids.
Last year, after Campbell was born, Dr. R put me on a blood pressure medicine because it has proved effective in preventing migraines. Unfortunately, like every other preventative medicine that doctors have put me on, the stuff made me feel awful - dizzy, lightheaded, spacey. I gave it 30 days and then stopped taking it. Dr. R looked pretty unhappy yesterday when I told her why I'd stopped taking the medication and why I didn't want to try any other preventive drugs. I have yet to take one that doesn't make me feel worse while I'm on it.
I went for yesterday's appointment because back in December I had tried to get my pain pill prescription refilled, and Dr. R had denied the refill. When I called to find out why, Dr. R had already left for Christmas vacation. I'm ashamed to admit that I got a little hysterical with the nurse about it all. So she talked to one of the other neurologists, who approved a refill for me. But the nurse said I had to come in for an appointment.
Dr. R completely surprised me yesterday by basically going against what she and every other neurologist I've seen has said about treating migraines. First, she told me that I can only take Imitrex one day out of seven. When I asked what to do if I got two migraines in seven days, she told me that I should take three Advil liquid gel caplets. Her reasoning was that taking too many Imitrex in a seven-day period can lead to rebound migraines. When I asked what I should do for pain when the Imitrex didn't work, she again said Advil. Dr. R claims that taking the pain pills more than once every six months or so leads to rebound migraines.
Then she asked me how much caffeine I drink. I proudly told her only half a cup of coffee a day, only to have her frown and say that I had to give it up all together, again because of the rebound effect. Migraines cause the blood vessels in your head to swell, and caffeine makes them shrink. According to Dr. R, every time you drink caffeine, you shrink your blood vessels, but then they open right back up again when the caffeine wears off, leaving you more prone to migraines.
I'm just not sure I buy all this. My first neurologist, whom I loved, told me not to take Advil when I had a migraine because it had blood thinning properties (the same reason you can't take it when you're pregnant), which can actually make the pain worse. My OB-GYN, when I was pregnant with Ella and couldn't take Imitrex, said to drink a Coke when I got a migraine. So now I have a doctor telling me absolutely not to drink caffeine and not to take pain pills and not to use Imitrex more than once a week.
Basically, I left the doctor's office rather stunned and not sure what to do. I almost want to schedule another appointment with her so that I can ask her some follow-up questions, like:
1. Do you follow this protocol yourself?
2. Where and when did you learn about all this? Did you just attend a migraine conference?
3. What do I do if I give up caffeine and pain pills and the Advil doesn't work and I still get migraines?
4. Can I see another doctor please?
As of right now, I'm willing to give the no caffeine thing a try. It'll be a rough day or two as I get it out of my system, but I don't drink enough for withdrawal to be a big deal. I was going to start this morning, but I was scheduled to be helping parent in Lily's preschool class, and I couldn't face the thought of spending five hours with 12 pre-k kids without caffeine. So I guess tomorrow's the day.
But I still think I'm going to look around for a second opinion.
Last year, after Campbell was born, Dr. R put me on a blood pressure medicine because it has proved effective in preventing migraines. Unfortunately, like every other preventative medicine that doctors have put me on, the stuff made me feel awful - dizzy, lightheaded, spacey. I gave it 30 days and then stopped taking it. Dr. R looked pretty unhappy yesterday when I told her why I'd stopped taking the medication and why I didn't want to try any other preventive drugs. I have yet to take one that doesn't make me feel worse while I'm on it.
I went for yesterday's appointment because back in December I had tried to get my pain pill prescription refilled, and Dr. R had denied the refill. When I called to find out why, Dr. R had already left for Christmas vacation. I'm ashamed to admit that I got a little hysterical with the nurse about it all. So she talked to one of the other neurologists, who approved a refill for me. But the nurse said I had to come in for an appointment.
Dr. R completely surprised me yesterday by basically going against what she and every other neurologist I've seen has said about treating migraines. First, she told me that I can only take Imitrex one day out of seven. When I asked what to do if I got two migraines in seven days, she told me that I should take three Advil liquid gel caplets. Her reasoning was that taking too many Imitrex in a seven-day period can lead to rebound migraines. When I asked what I should do for pain when the Imitrex didn't work, she again said Advil. Dr. R claims that taking the pain pills more than once every six months or so leads to rebound migraines.
Then she asked me how much caffeine I drink. I proudly told her only half a cup of coffee a day, only to have her frown and say that I had to give it up all together, again because of the rebound effect. Migraines cause the blood vessels in your head to swell, and caffeine makes them shrink. According to Dr. R, every time you drink caffeine, you shrink your blood vessels, but then they open right back up again when the caffeine wears off, leaving you more prone to migraines.
I'm just not sure I buy all this. My first neurologist, whom I loved, told me not to take Advil when I had a migraine because it had blood thinning properties (the same reason you can't take it when you're pregnant), which can actually make the pain worse. My OB-GYN, when I was pregnant with Ella and couldn't take Imitrex, said to drink a Coke when I got a migraine. So now I have a doctor telling me absolutely not to drink caffeine and not to take pain pills and not to use Imitrex more than once a week.
Basically, I left the doctor's office rather stunned and not sure what to do. I almost want to schedule another appointment with her so that I can ask her some follow-up questions, like:
1. Do you follow this protocol yourself?
2. Where and when did you learn about all this? Did you just attend a migraine conference?
3. What do I do if I give up caffeine and pain pills and the Advil doesn't work and I still get migraines?
4. Can I see another doctor please?
As of right now, I'm willing to give the no caffeine thing a try. It'll be a rough day or two as I get it out of my system, but I don't drink enough for withdrawal to be a big deal. I was going to start this morning, but I was scheduled to be helping parent in Lily's preschool class, and I couldn't face the thought of spending five hours with 12 pre-k kids without caffeine. So I guess tomorrow's the day.
But I still think I'm going to look around for a second opinion.
Wednesday, September 19, 2007
More on the migraines
Some answers to questions I've gotten:
Why wouldn't you want to take a medicine that causes you to gain weight? It seems like a small price to pay.
I did try taking the medicine, and I gained 8 pounds in five days. Not good. Plus, I have a history of, ummm, anorexia. When I get stressed, or depressed, or otherwise feel like my life is out of control, I stop eating. Having rampant migraines AND gaining weight triggered some bad behaviors on my part. So after two months, I stopped taking the medication, lost the weight almost immediately without starving myself, and stopped beating myself up about not being able to fit into my clothes.
What are your triggers?
I've been able to pin down some things that pretty much guarantee a migraine: red wine, strawberries, lack of sleep, allergies, ozone days, and stress. There are other things that might trigger a migraine if the conditions are right, or wrong, depending on how you look at it: running, not running, heat, humidity, margaritas, and chocolate.
Are there different levels of pain?
Yes. I have some migraines that are mostly the side symptoms - like the visual distortions and sensitivities - with pain that's a 3 or 4 on a scale of 10. Those are the migraines that tend to go on for a week or so. Then there are the migraines that go all the way up to 11. Those are the ones that put me in bed in a cold, dark room in a haze of hydrocodone. As bad as the ones that go to 11 are, it's the low-level migraines that last for several days that take the most out of me. I get so worn down from feeling just well enough to function, but not well enough to thrive. Before I had kids, I'd go to bed when I had one of these and sleep it off. I don't have that luxury anymore. I have to save my retreats to bed for the really, really bad ones.
I've had bad headaches before, so I know how you feel.
Umm, no offense here, but if you've never had a migraine, you don't know how one feels. Imagine your worst ice-cream headache. Now multiply it by ten, have it last 36 hours instead of 30 seconds, and just for fun, throw in nausea, sensitivity to light, smells, and sound. Then maybe, just maybe, you'll feel like you have a migraine. My husband, who is really very understanding about my migraines, had a sinus infection last year that was so bad he spent two days in bed. He said later that the sinus pain gave him an inkling of what migraines were like and apologized for any of the times he wasn't as sympathetic as he could have been. And even then, he didn't claim that his sinus pain was close to a migraine in intensity.
Do you have one again today?
Yes. For the record, that's three days in a row. This one's an 8 or so.
Why wouldn't you want to take a medicine that causes you to gain weight? It seems like a small price to pay.
I did try taking the medicine, and I gained 8 pounds in five days. Not good. Plus, I have a history of, ummm, anorexia. When I get stressed, or depressed, or otherwise feel like my life is out of control, I stop eating. Having rampant migraines AND gaining weight triggered some bad behaviors on my part. So after two months, I stopped taking the medication, lost the weight almost immediately without starving myself, and stopped beating myself up about not being able to fit into my clothes.
What are your triggers?
I've been able to pin down some things that pretty much guarantee a migraine: red wine, strawberries, lack of sleep, allergies, ozone days, and stress. There are other things that might trigger a migraine if the conditions are right, or wrong, depending on how you look at it: running, not running, heat, humidity, margaritas, and chocolate.
Are there different levels of pain?
Yes. I have some migraines that are mostly the side symptoms - like the visual distortions and sensitivities - with pain that's a 3 or 4 on a scale of 10. Those are the migraines that tend to go on for a week or so. Then there are the migraines that go all the way up to 11. Those are the ones that put me in bed in a cold, dark room in a haze of hydrocodone. As bad as the ones that go to 11 are, it's the low-level migraines that last for several days that take the most out of me. I get so worn down from feeling just well enough to function, but not well enough to thrive. Before I had kids, I'd go to bed when I had one of these and sleep it off. I don't have that luxury anymore. I have to save my retreats to bed for the really, really bad ones.
I've had bad headaches before, so I know how you feel.
Umm, no offense here, but if you've never had a migraine, you don't know how one feels. Imagine your worst ice-cream headache. Now multiply it by ten, have it last 36 hours instead of 30 seconds, and just for fun, throw in nausea, sensitivity to light, smells, and sound. Then maybe, just maybe, you'll feel like you have a migraine. My husband, who is really very understanding about my migraines, had a sinus infection last year that was so bad he spent two days in bed. He said later that the sinus pain gave him an inkling of what migraines were like and apologized for any of the times he wasn't as sympathetic as he could have been. And even then, he didn't claim that his sinus pain was close to a migraine in intensity.
Do you have one again today?
Yes. For the record, that's three days in a row. This one's an 8 or so.
Tuesday, September 18, 2007
Migraine, Migraine go away
I'm currently in the throes of my second migraine in two days. Right now I'm getting about two a week. For the past few weeks I've maxed out on the number of Imitrex pills I'm allowed to take in a certain number of hours. Actually, now that I think about it, I should probably say that I've had the same migraine for two days, with a few hours' respite in there somewhere.
Usually, my migraines come on in the afternoons, which is what happened yesterday. We had a house full of friends - including lots of kids - for an impromptu party for Campbell's birthday. We had a big one a week ago while my folks were here, but the girls insisted that we have another party ON Campbell's birthday, so we did. Anyway, the migraine hit me like a mac truck, no warning signs, no visual distortions. I took an Imitrex and felt marginally better in the evening, but I was in bed and asleep by 9:30 or so.
When I woke up I felt like it would be a bad day, but I went for a run anyway, hoping that doing so would help. Sometimes exercise gets rid of minor migraines. It seemed to work this morning, but as the day wore on, and the rains rolled through, the migraine returned.
I've had migraines since I was a child. I vividly remember having them when we lived in Massachusetts. I remember lying curled up on the family room sofa feeling like my head was going to explode. I remember having lots of them after we moved to Florida, having to go to the nurse's office because I was in so much pain. And then there were the headaches in high school - maybe that's why I did so poorly in calculus. Hmmm.
I've had people ask if I'm upset that my parents never did anything about my headaches when I was little, but I'm not at all. I don't think migraines were well known then, and who would think a little kid would have them. Mom would give me aspirin and send me off to my room to rest, which is about all anyone could have done. Sometimes she gave me some flat Coke to drink, and since caffeine can sometimes help, that was actually a good thing for her to do.
In college I read an article on migraines and realized that the description in the article exactly matched what I had - intense pain behind one eye; sensitivity to light, sound, and smell; and nausea. I went to the doctor at the student health clinic and told him about my symptoms. His response? "That's not what a migraine feels like." He told me I had a sinus infection and sent me on my way with antibiotics. So for the next 8 years, every time I had a migraine that lasted three days, I'd assume I had a sinus infection and either take decongestants or go to the doctor for antibiotics.
Finally, when I was 26, after two rounds of antibiotics and no relief of the pain, my doctor ordered a sinus x-ray, which revealed clean sinuses. I should note that it was summer, and the migraines are always worse in the heat and humidity. I can go day after day with blinding headaches. The doctor, after getting the x-rays back said, "I think these might be migraines. I'm sending you to a specialist." I broke down in tears in his office out of sheer relief.
It took some tinkering with medications - there was the stuff that made me pass out every time I stood up and the stuff that made me throw up endlessly - before we settled on Imitrex. This neurologist also sent me for biofeedback sessions to help me learn to control the pain. I still do some of the breathing exercises when the pain is intense. The exercises keep me from getting so tensed up, and I can usually relax enough to fall asleep.
The doctor also gave me a prescription for pain pills to take when the Imitrex didn't work. Unfortunately, there are times when not even the hydrocodone works, and all I can do is retreat to a cold, dark room with an ice pack on my head. My sister has gone to the ER a few times when her migraines have gotten to be too much and the pain pills don't work. I can think of a few headaches where I probably should have done the same thing.
The migraines get worse when I'm pregnant because I can't take the Imitrex. I've tried chiropracty and accupuncture as ways of relieving the misery, but they never offered real results. Unfortunately, when I'm pregnant and I get a migraine, I throw up, a lot. With Lily I suspected I was pregnant before I took the test because I had had a migraine and had thrown up.
My friends probably get tired of hearing that I have headaches, but in all honesty, there are many, many times when I don't admit to anyone, not even B, that I have one. There are days when I just don't have the luxury of going to bed. So I take the Imitrex, grit my teeth and hope for the best. I keep myself going with the memory of what life was life before I knew what the headaches were. I soldiered on then without the help of any medications because I had no choice.
My neurologists have tried some preventive medications, including depacote, which has the potential for horrible birth defects if taken when pregnant, but I've gone off all of them voluntarily. Everything I've tried has made life worse, not better. One medication gave me regular headaches. And while I can function if necessary with a migraine, a regular headache absolutely knocks me out - I don't know how to cope. Another medication made me gain weight. Still another made me overheat when running, to the point that I nearly collapsed on a run. So now I just say no when the doctor suggest another possible prevention. Sometimes the cure is really worse than the disease.
My greatest worry is that my kids will get migraines. Last summer Ella complained of migraines every day after school, and I panicked. It turns out she was just dehydrated - I'd pump her full of water in the car on the way home, and she'd bounce back without a problem. But I still worry. I wouldn't wish these on my worst enemy.
And now I'm off to bed with an ice pack on my head.
Usually, my migraines come on in the afternoons, which is what happened yesterday. We had a house full of friends - including lots of kids - for an impromptu party for Campbell's birthday. We had a big one a week ago while my folks were here, but the girls insisted that we have another party ON Campbell's birthday, so we did. Anyway, the migraine hit me like a mac truck, no warning signs, no visual distortions. I took an Imitrex and felt marginally better in the evening, but I was in bed and asleep by 9:30 or so.
When I woke up I felt like it would be a bad day, but I went for a run anyway, hoping that doing so would help. Sometimes exercise gets rid of minor migraines. It seemed to work this morning, but as the day wore on, and the rains rolled through, the migraine returned.
I've had migraines since I was a child. I vividly remember having them when we lived in Massachusetts. I remember lying curled up on the family room sofa feeling like my head was going to explode. I remember having lots of them after we moved to Florida, having to go to the nurse's office because I was in so much pain. And then there were the headaches in high school - maybe that's why I did so poorly in calculus. Hmmm.
I've had people ask if I'm upset that my parents never did anything about my headaches when I was little, but I'm not at all. I don't think migraines were well known then, and who would think a little kid would have them. Mom would give me aspirin and send me off to my room to rest, which is about all anyone could have done. Sometimes she gave me some flat Coke to drink, and since caffeine can sometimes help, that was actually a good thing for her to do.
In college I read an article on migraines and realized that the description in the article exactly matched what I had - intense pain behind one eye; sensitivity to light, sound, and smell; and nausea. I went to the doctor at the student health clinic and told him about my symptoms. His response? "That's not what a migraine feels like." He told me I had a sinus infection and sent me on my way with antibiotics. So for the next 8 years, every time I had a migraine that lasted three days, I'd assume I had a sinus infection and either take decongestants or go to the doctor for antibiotics.
Finally, when I was 26, after two rounds of antibiotics and no relief of the pain, my doctor ordered a sinus x-ray, which revealed clean sinuses. I should note that it was summer, and the migraines are always worse in the heat and humidity. I can go day after day with blinding headaches. The doctor, after getting the x-rays back said, "I think these might be migraines. I'm sending you to a specialist." I broke down in tears in his office out of sheer relief.
It took some tinkering with medications - there was the stuff that made me pass out every time I stood up and the stuff that made me throw up endlessly - before we settled on Imitrex. This neurologist also sent me for biofeedback sessions to help me learn to control the pain. I still do some of the breathing exercises when the pain is intense. The exercises keep me from getting so tensed up, and I can usually relax enough to fall asleep.
The doctor also gave me a prescription for pain pills to take when the Imitrex didn't work. Unfortunately, there are times when not even the hydrocodone works, and all I can do is retreat to a cold, dark room with an ice pack on my head. My sister has gone to the ER a few times when her migraines have gotten to be too much and the pain pills don't work. I can think of a few headaches where I probably should have done the same thing.
The migraines get worse when I'm pregnant because I can't take the Imitrex. I've tried chiropracty and accupuncture as ways of relieving the misery, but they never offered real results. Unfortunately, when I'm pregnant and I get a migraine, I throw up, a lot. With Lily I suspected I was pregnant before I took the test because I had had a migraine and had thrown up.
My friends probably get tired of hearing that I have headaches, but in all honesty, there are many, many times when I don't admit to anyone, not even B, that I have one. There are days when I just don't have the luxury of going to bed. So I take the Imitrex, grit my teeth and hope for the best. I keep myself going with the memory of what life was life before I knew what the headaches were. I soldiered on then without the help of any medications because I had no choice.
My neurologists have tried some preventive medications, including depacote, which has the potential for horrible birth defects if taken when pregnant, but I've gone off all of them voluntarily. Everything I've tried has made life worse, not better. One medication gave me regular headaches. And while I can function if necessary with a migraine, a regular headache absolutely knocks me out - I don't know how to cope. Another medication made me gain weight. Still another made me overheat when running, to the point that I nearly collapsed on a run. So now I just say no when the doctor suggest another possible prevention. Sometimes the cure is really worse than the disease.
My greatest worry is that my kids will get migraines. Last summer Ella complained of migraines every day after school, and I panicked. It turns out she was just dehydrated - I'd pump her full of water in the car on the way home, and she'd bounce back without a problem. But I still worry. I wouldn't wish these on my worst enemy.
And now I'm off to bed with an ice pack on my head.
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