I went to see my new headache specialist about a week and a half ago, and the appointment went incredibly well. I posted about it on the MMC forums if you'd like to read the full story; I don't have the energy to recap it here again.
I was so impressed with the doctor and his staff that I wrote him a thank you card, which I will be dropping in the mail tomorrow. This is what I wrote to him:
Dear Dr Elliott,
On May 21, I came to your office for my first visit, in my ongoing search for treatment for my chronic migraines. You are the third doctor I've seen in the Seattle area since February 2007, but the first I have felt the need to thank.
From the first time I spoke on the phone with your office staff, I felt truly welcomed and respected as a patient and person. Everyone I have spoken to at Virginia Mason has been courteous, polite and caring - more so than I've seen anywhere else. At my appointment, your staff made me feel very comfortable in an otherwise anxiety-producing situation. And they smile!
You and I spent an hour discussing all of my history, symptoms and concerns during my appointment. You took the time to answer all of my questions and explain anything I didn't understand.
For the first time, I feel a renewed sense of hope that together, we can work to find an effective treatment regimen and I can live my life again.
So thank you for your thoughtfulness and compassion. It is all too rare to find a doctor willing to work with his patients as equal partners, and even rarer to find one with such an excellent staff.
While it still may take some time to find an effective treatment for my migraines, I now feel confident it is possible. Thank you for renewing my sense of hope, and please thank your staff for me as well.
Sincerely,
MJ
Showing posts with label headache clinic. Show all posts
Showing posts with label headache clinic. Show all posts
Sunday, June 1, 2008
Wednesday, April 23, 2008
terminology
The end of last year, when I was still seeing neurologist #2, I remember questioning the need for an accurate diagnosis. After all, chronic head pain is chronic head pain, and I need to find an effective preventive regimen regardless of what kind it is. It was about this time I began to wonder if I needed to consult with an actual headache specialist - someone who dedicated their practice to the study and treatment of headache and migraine - rather than just a neurologist. Since neuro #2 began to run out of ideas, I decided a fresh pair of eyes on my case wouldn't hurt, and I asked for a referral to a specialist, AKA neuro #3.
I was fortunate (I thought) to get in with neuro #3 in about two weeks. She was just coming back early from maternity leave since the other neurologist in her practice was leaving, and had not scheduled any patients yet, so I was at the top of the list. So I had virtually first pick of appointments and was able to schedule fairly quickly. The first appointment went well, and after looking at the list of five preventives I had trialed and failed, she wanted to try me on Botox, her main interest and area of research. If that didn't work out, we would retry me on Topamax, since I hadn't given it enough of a trial the year before.
After two months of waiting around, my insurance rejected the pre-authorization claim for Botox, labeling it "experimental". After a number of phone calls, she had finally agreed to write me a script for the Topamax, and once the insurance rejected the Botox I scheduled another appointment with her to discuss my options.
I had this appointment with her about a month ago. I went in well-prepared with a list of questions, and brought DBF with me in case he had any questions. For some reason, this appointment didn't seem to go as well as the first. Neuro #3 went over all my questions with me, but was completely unwilling to even discuss the possibility of rescue meds - saying simply that "they don't work" - and didn't want to discuss any treatment options for my daily migraine pain. When I asked her the difference between chronic daily headache and transformed migraine, she said they were different terms for the same diagnosis, and implied that my ongoing migraine is simply a headache - an implication I did not pick up on right away.
After the appointment, I had a weird sense of hopelessness I couldn't immediately pin down. The following week, my daily pain spiked again, so I decided to call in to try for an IV treatment, which neuro #3 had reluctantly offered to me as an option when I questioned her about it, with the caveat that it wouldn't do much for my "regular daily pain". It took me five days to get in for this treatment because of her irregular schedule: she typically only works three days a week. This scheduling mess, coupled with the feeling I couldn't shake that she had given up on me when the Botox was denied, finally pushed me to fire her. (My mom later pointed out to me that since I couldn't do the Botox, my doc had demoted me to her B-list of patients.)
Fast-forward to this past weekend, with all these strange symptoms I've been having. I called into the nurse's line early Monday morning to leave a message about the new symptoms that cropped up over the weekend. I got a call back - which I missed, of course, so the nurse left a message - saying that they would pass the message along to my doc on Tuesday when she was back in the office.
Tuesday (yesterday) afternoon, I finally got another call back - which I missed again, because they only ever call when I'm in a meeting at work - with a message from a different nurse. Neuro #3 said the symptoms were probably not from the latest IV treatment, and "may be" related to the "headache". If I still had some concerns, I could schedule an appointment with her nurse practitioner, and here is her phone number. Click.
Are you kidding me??
This short message confirms my instincts in firing this doctor's sorry butt were correct. She will not even call this migraine a migraine, only a headache. But now it makes more sense why she was so unwilling to offer any treatment for it, since she thinks it is only a headache, not worthy of any treatment.
So, it's on to neuro #4. I have an appointment scheduled with him on May 21, four weeks from today. I am much more encouraged by his office than by that of neuro #3. His staff is much more polite and helpful. I received my new patient information packet in the mail within a few days of my appointment being scheduled - rather than the day before my appointment - and the forms are much more detailed, including a depression screening form. I'm just very glad I didn't wait to move on to a new doctor and went with my instincts about neuro #3.
Now, I just need to get through the next few weeks.
I was fortunate (I thought) to get in with neuro #3 in about two weeks. She was just coming back early from maternity leave since the other neurologist in her practice was leaving, and had not scheduled any patients yet, so I was at the top of the list. So I had virtually first pick of appointments and was able to schedule fairly quickly. The first appointment went well, and after looking at the list of five preventives I had trialed and failed, she wanted to try me on Botox, her main interest and area of research. If that didn't work out, we would retry me on Topamax, since I hadn't given it enough of a trial the year before.
After two months of waiting around, my insurance rejected the pre-authorization claim for Botox, labeling it "experimental". After a number of phone calls, she had finally agreed to write me a script for the Topamax, and once the insurance rejected the Botox I scheduled another appointment with her to discuss my options.
I had this appointment with her about a month ago. I went in well-prepared with a list of questions, and brought DBF with me in case he had any questions. For some reason, this appointment didn't seem to go as well as the first. Neuro #3 went over all my questions with me, but was completely unwilling to even discuss the possibility of rescue meds - saying simply that "they don't work" - and didn't want to discuss any treatment options for my daily migraine pain. When I asked her the difference between chronic daily headache and transformed migraine, she said they were different terms for the same diagnosis, and implied that my ongoing migraine is simply a headache - an implication I did not pick up on right away.
After the appointment, I had a weird sense of hopelessness I couldn't immediately pin down. The following week, my daily pain spiked again, so I decided to call in to try for an IV treatment, which neuro #3 had reluctantly offered to me as an option when I questioned her about it, with the caveat that it wouldn't do much for my "regular daily pain". It took me five days to get in for this treatment because of her irregular schedule: she typically only works three days a week. This scheduling mess, coupled with the feeling I couldn't shake that she had given up on me when the Botox was denied, finally pushed me to fire her. (My mom later pointed out to me that since I couldn't do the Botox, my doc had demoted me to her B-list of patients.)
Fast-forward to this past weekend, with all these strange symptoms I've been having. I called into the nurse's line early Monday morning to leave a message about the new symptoms that cropped up over the weekend. I got a call back - which I missed, of course, so the nurse left a message - saying that they would pass the message along to my doc on Tuesday when she was back in the office.
Tuesday (yesterday) afternoon, I finally got another call back - which I missed again, because they only ever call when I'm in a meeting at work - with a message from a different nurse. Neuro #3 said the symptoms were probably not from the latest IV treatment, and "may be" related to the "headache". If I still had some concerns, I could schedule an appointment with her nurse practitioner, and here is her phone number. Click.
Are you kidding me??
This short message confirms my instincts in firing this doctor's sorry butt were correct. She will not even call this migraine a migraine, only a headache. But now it makes more sense why she was so unwilling to offer any treatment for it, since she thinks it is only a headache, not worthy of any treatment.
So, it's on to neuro #4. I have an appointment scheduled with him on May 21, four weeks from today. I am much more encouraged by his office than by that of neuro #3. His staff is much more polite and helpful. I received my new patient information packet in the mail within a few days of my appointment being scheduled - rather than the day before my appointment - and the forms are much more detailed, including a depression screening form. I'm just very glad I didn't wait to move on to a new doctor and went with my instincts about neuro #3.
Now, I just need to get through the next few weeks.
Friday, April 18, 2008
(IV) drugs? yes, please
This week was rough, even by my high pain tolerance standards. I started the week with a bout of depression, which isn't unusual for me. Migraine and depression are comordid conditions, meaning the two often exist together but one doesn't necessarily cause the other. In my own experience, I tend to have mild depression when my migraines are out of control, with occasional more severe depression.
That's what happened earlier this week. Depression bad enough I didn't even want to get out of bed and go to work. I knew it was the migraine beastie, zapping my serotonin levels, but knowing it doesn't ever make it go away. It mostly passed by Wednesday, just in time for a couple nights of severe pain.
Both Wednesday and Thursday nights the pain was bad, up to an 8 out of 10, and with some bad dizziness and nausea. I had exhausted my week's allowance of Imitrex, an abortive medication, which my doctor has me combine with ibuprofen to increase its effectiveness. I can only take
Imitrex two to three times a week before I risk medication overuse headache (MOH). Because my pain is daily, I have to carefully track when and how often I take any abortive medication. So I was stuck with nothing but my comfort measures - ice pack, essential oils, Altoids. I also have promethazine (generic for Phenergan), an anti-nausea med, that I can take.
This morning I called my fired specialist's office to see if I could get in for an IV infusion treatment. I had tried this once before earlier this month, and while it didn't get rid of my pain (nothing has), it did get it down to a much more tolerable level. The first time, I had DHE, Toradol and Reglan for the nausea. The Reglan gave me awful anxiety, and made me woozy.
My appointment was scheduled for 1:00, but they didn't take me back to the exam room until almost 2:00. Let me pause here to say one of the things I hate most about this clinic is that there are fluorescent lights everywhere. Being in the architecture field, I can understand more than most why this clinic would have ended up with them, but they haven't done anything to mitigate the problem. At the very least, they could have put some desk lamps in the exam rooms or something. Nope. Instead they will turn off the lights for you if you ask, but then they have to leave the door open so it's not pitch black in the rooms. (HIPAA issues, anyone?)
This time I made sure to ask for a different anti-emetic, and they gave me Phenergan. I didn't get the anxiety, but the wooziness was worse and it actually made me more nauseous. So they tried Zofran, a med usually used for chemo patients, but with a much better side effect profile. Bingo! Now I know which one to ask for. I also got Toradol and DHE, same as last time. The nurse who did my infusion this time was much more experienced than the one who did it last time, so she infused the meds more slowly and with more time in between than the first time I went. I napped for a little bit while I was there, since the Toradol and Phenergan both made me sleepy. I didn't leave there until 4:30.
DBF was kind enough to come with me this time. He sat with me the whole time, talked with me, and held my hand. He went to find a nurse when the side effects from the Phenergan were making me feel sick. When we came home he got me settled on the couch in the living room and sat with me for a few minutes until I fell asleep, and warmed dinner up for me.
My pain isn't gone, of course. It never is. But it is down to a 2, which is lower than it ever is on its own, and lower than I can get it with any of the meds I have on hand. I think I may talk to my new specialist about injectable DHE as an abortive option. (I'm putting it on my list of questions right now.) I have a new Relpax prescription waiting for me at my pharmacy that I will also be trying next week.
It's nice to have some relief tonight, after a particularly tough week of depression and severe pain. I don't know how long it will last. Last time I only got about 8 hours, but even that was a nice break. I'll be seeing my new specialist in about a month, which, all things considered, isn't too far off.
That's all for now. Here's hoping for a low-pain weekend.
-MJ
That's what happened earlier this week. Depression bad enough I didn't even want to get out of bed and go to work. I knew it was the migraine beastie, zapping my serotonin levels, but knowing it doesn't ever make it go away. It mostly passed by Wednesday, just in time for a couple nights of severe pain.
Both Wednesday and Thursday nights the pain was bad, up to an 8 out of 10, and with some bad dizziness and nausea. I had exhausted my week's allowance of Imitrex, an abortive medication, which my doctor has me combine with ibuprofen to increase its effectiveness. I can only take
Imitrex two to three times a week before I risk medication overuse headache (MOH). Because my pain is daily, I have to carefully track when and how often I take any abortive medication. So I was stuck with nothing but my comfort measures - ice pack, essential oils, Altoids. I also have promethazine (generic for Phenergan), an anti-nausea med, that I can take.
This morning I called my fired specialist's office to see if I could get in for an IV infusion treatment. I had tried this once before earlier this month, and while it didn't get rid of my pain (nothing has), it did get it down to a much more tolerable level. The first time, I had DHE, Toradol and Reglan for the nausea. The Reglan gave me awful anxiety, and made me woozy.
My appointment was scheduled for 1:00, but they didn't take me back to the exam room until almost 2:00. Let me pause here to say one of the things I hate most about this clinic is that there are fluorescent lights everywhere. Being in the architecture field, I can understand more than most why this clinic would have ended up with them, but they haven't done anything to mitigate the problem. At the very least, they could have put some desk lamps in the exam rooms or something. Nope. Instead they will turn off the lights for you if you ask, but then they have to leave the door open so it's not pitch black in the rooms. (HIPAA issues, anyone?)
This time I made sure to ask for a different anti-emetic, and they gave me Phenergan. I didn't get the anxiety, but the wooziness was worse and it actually made me more nauseous. So they tried Zofran, a med usually used for chemo patients, but with a much better side effect profile. Bingo! Now I know which one to ask for. I also got Toradol and DHE, same as last time. The nurse who did my infusion this time was much more experienced than the one who did it last time, so she infused the meds more slowly and with more time in between than the first time I went. I napped for a little bit while I was there, since the Toradol and Phenergan both made me sleepy. I didn't leave there until 4:30.
DBF was kind enough to come with me this time. He sat with me the whole time, talked with me, and held my hand. He went to find a nurse when the side effects from the Phenergan were making me feel sick. When we came home he got me settled on the couch in the living room and sat with me for a few minutes until I fell asleep, and warmed dinner up for me.
My pain isn't gone, of course. It never is. But it is down to a 2, which is lower than it ever is on its own, and lower than I can get it with any of the meds I have on hand. I think I may talk to my new specialist about injectable DHE as an abortive option. (I'm putting it on my list of questions right now.) I have a new Relpax prescription waiting for me at my pharmacy that I will also be trying next week.
It's nice to have some relief tonight, after a particularly tough week of depression and severe pain. I don't know how long it will last. Last time I only got about 8 hours, but even that was a nice break. I'll be seeing my new specialist in about a month, which, all things considered, isn't too far off.
That's all for now. Here's hoping for a low-pain weekend.
-MJ
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