Migraine

I added this folder so we could share our successes and encourage others, but haven't taken time to sit down and tell my own story. Well, the time has come...

Eight years ago, Migraine controlled my life. I was having Migraines from hell an average of five days a week; Migraines that kept me in bed all day. No talking to anyone, no work. Just a dark quiet room and a Migraine. I'd seen every neurologist near my hometown. A few years earlier, a neurologist about 90 miles from home had helped me by prescribing Inderal LA and working with me to get it to a dosage that reduced my Migraines to only a few a year. But it quit working, and I was in hell.

My PCP told me about a Migraine specialist in that same city, 90 miles away. I never even met the doctor at my first appointment. A PA reviewed my records, did an exam, and sent me home with a prescription for Topamax and a bag full of triptan samples. It was the first time I'd ever been given triptans. He had said to start with Imitrex. I was so disappointed when it did nothing. (Later, I'd discover that the problem was that they gave me 25mg tablets.) To my delight, Zomig worked! No doctor had told me about rebound, but I'd found out about it on my own; so I knew I could only take the Zomig two days a week. Still, two days a week were better than nothing. Three months later, I went to my next appointment. I'd made no progress. Since I was waking with Migraines, I was scheduled for a sleep study. When diagnosed with periodic limb movement disorder, a med was prescribed for that, but no other changes were made to my regimen. Treating the sleep disorder did stop my waking with Migraines, but I'd still develop them later in the day -- I was still averaging five horrid Migraines a week. Called the doctor's office and explained that I was desperate. I was told to keep my next appointment in three months. So, none months had gone by. The cognitive side effects of Topamax were ruining the one good day or two I had each week. Didn't trust myself to drive even. AND it was doing nothing for my Migraines. Still, this doctor insisted that I hadn't given it enough time, to continue the regimen.

I went home and cried for two days. Then I got angry, really angry. The kind of angry where I speak very softly and calmly, and anyone who knows me steers clear. I called the specialist's office, cancelled my next appointment, and told the receptionist to prepare a copy of my records. She said to let her know what doctor to send them to, that she couldn't release them to me. I told her that she not only COULD release them to me, but that she was required by law to do so. It was arranged that I'd pick them up on Friday, a day when there were no patients in the office, but the office manager was in. As I was leaving with my records, the doctor came out of the office and asked what the problem was. Big mistake. I looked her square in the eye and said, "You are, and you are SO _______ fired."

By that time, I'd started reading everything I could find. In a small town, the library isn't much help, so I hit the Internet. I'd used a few About.com sites and liked them, but they didn't have a Migraine site. It was frustrating because there were no sites that had everything I was looking for, and I kept coming across sites that were absolute nonsense. When I discovered that About.com wanted to start a Migraine site, I applied for the job. On the forum there, a young woman told me about her Migraine specialist, Dr. Young at the Jefferson Headache Center in Philadelphia. I didn't care that it was an eight-hour drive. I needed help. So, I made an appointment, then waited nine months for the day to arrive.

I'll never forget that first appointment with Dr. Young. He looked me in the eyes and said, "You don't have to live like this. I won't give up on you if you don't give up on me." OMG! Was I dreaming? I was taking meds for high blood pressure and depression. Instead of adding meds, Dr. Young changed my bp med and antidepressant. He wanted to change my triptan to Imitrex so I'd have the tablets for "normal" Migraines and the injections for those that hit hard and fast or for times when the tablet didn't work. He thought it hadn't worked for me before because I'd taken the 25mg tablets. He prescribed 100mg tablets. He also prescribed Phenergan for nausea. Our plan was that I would use Imitrex and Phenergan two days a week, and he prescribed a pain med to be taken with Phenergan two other days a week. So, I could now treat four days a week. He asked me to give the new meds three months and come back.

Three months later, there was no change. That was when he said he thought we needed to rule out Pseudotumor Cerebri, aka Idiopathic Intracranial Hypertension. He said there was no sign of it on my MRI, and I didn't have the papilledema in my eyes that can indicate PTC, but that a lumbar puncture (spinal tap) was the only truly definitive diagnostic test. When he did the lp, my pressure was 23 (or 230 depending on the scale). Normal range is 10 - 20. Since we had no way of knowing what was normal for my body, he drew off enough fluid to take the pressure down to 15. We agreed that I'd keep doing my diary and see him in three weeks. At the end of that three weeks, I was able to tell him that my Migraines had been reduced by 50%, and that unlike before, I was able to identify my trigger nearly all the time. The PTC HAD been triggering Migraines. We added Coenzyme Q10 to my regimen. By the time my next appointment arrived, I was down to about one Migraine a week. This continued for a while. I'd see Dr. Young every three months, then every six months.

Then a wrench was thrown into the works. I developed chronic tension-type headaches, probably as a result of having serious eye surgery four times in six months. Dr. Young tried to save me a trip to Philadelphia by calling in a prescription, but it didn't help, so off to Philly I went. He knew I was reluctant to try another neuronal stabilizing agent (anticonvulsant), but asked me to consider Zonegran. I trusted him; I owed him big time. I agreed to try it. Within a couple of weeks, the tension-type headaches were nearly gone. Within three months, my Migraine-free periods had gone to six weeks. Being selfish, I wanted more, so I asked him about increasing the Zonegran. He agreed it was a good idea.

Today, I sometimes get as long as two or even three months with no Migraines. If I'm flying or were in one of those times with lots of barometric pressure changes, I may have two or three in a month. It all averages out to about one Migraine a month.

Reading what I've written, I think it looks like things were pretty easy and that this regimen was arrived at pretty quickly. Neither is true. Overall, it took nearly four years of working with Dr. Young to get to this point. It was worth every minute, every mile driven. I stuck with him because we were making progress. He always talked to me about anything I wanted to discuss. In an online chat, Dr. Young was asked about educated patients. His reply was, "An educated patient is a better patient. I'd far rather have a treatment partner than a dishrag." You've heard me talk about being treatment partners. Dr. Young is where I learned that. I will always be grateful to him. Once, I thanked him for giving my life back to me. He reminded me that we did it together.

I wanted to share this today in hopes of giving you hope, of letting you know that there are doctors out there who can help, that there are many treatments to be tried.

love and hugs,

Thanks for posting that, Teri.

I knew the story, but somehow, seeing it in print is like a mental tuneup. I will get things better than this.

While I'm doing so much better than before, this is not a goal. This is a good starting point for starting to swim the next lap, or run the next leg of a marathon.

Thanks for this post right now. A reminder that we can have more migraine free time, and DESERVE it, even, is absolutely inspiring, and motivating.

, this is just wanted I needed to hear today.

Teri,

Thanks for posting the details of your success story.

I also needed to hear this today.

I hope one day, I too, will be able to be a success story! I need to find the right doctor though, so far, I haven't.

Jenn

teri --

i can't thank you enough for all you do for this site, and am so pleased to read your story all the way through. it is (in some ways) so similar to what i'm experiencing now -- it gives me hope that even though it's been 2 1/2 years, i could still return to normal life. if i didn't know other people had done it, i don't know that i'd believe it. thank you.
emily

Thanks Teri. Reading it and hearing it from you always make me smile.

LOVE the picture of Dr. Young. It was so COOL to meet him in person at the conference. Thank you for sharing that experience with me.

{{{{{{{{{{{hugs}}}}}}}}}}}}}}}

Jamie,

You're very welcome. One reason I wanted to share it was knowing that there are people here who NEED to know we can get better. I never lose sight of what things used to be like for me, and I'm very grateful to be able to try to help others make the same journey I have. I'm also mindful that there may well come a time when my regimen doesn't work so well for me and I'll have to start again. There are certainly no guarantees that my treatment will be this effective forever.

quote:

Originally posted by braindrane:
Thanks for posting that, Teri.

I knew the story, but somehow, seeing it in print is like a mental tuneup. I will get things better than this.

While I'm doing so much better than before, this is not a goal. This is a good starting point for starting to swim the next lap, or run the next leg of a marathon.

Thanks for this post right now. A reminder that we can have more migraine free time, and DESERVE it, even, is absolutely inspiring, and motivating.

You're very welcome. Glad it helped!

quote:

Originally posted by Migraneur:
, this is just wanted I needed to hear today.

Jenn,

You're very welcome. Don't even consider giving up. It can be done. You keep coming here when you need help and support. We'll be here waiting.

hugs,

quote:

Originally posted by JennC:
Teri,

Thanks for posting the details of your success story.

I also needed to hear this today.

I hope one day, I too, will be able to be a success story! I need to find the right doctor though, so far, I haven't.

Jenn

Oh, Emily, honey. You're very welcome. You keep at it. There is hope. You'll get there!!

big hugs,

quote:

Originally posted by SassyLime9:
teri --

i can't thank you enough for all you do for this site, and am so pleased to read your story all the way through. it is (in some ways) so similar to what i'm experiencing now -- it gives me hope that even though it's been 2 1/2 years, i could still return to normal life. if i didn't know other people had done it, i don't know that i'd believe it. thank you.
emily

Nancy,

You're very welcome - for everything. It was such a pleasure to be able to introduce you to Dr. Young, the man who helped me get my life back. I've told you why I like and respect him and some of the other doctors so much, but now I think you have a far better feel for it since you've met them yourself. You had a chance to see the kindness in Dr. Young's eyes and to experience the passion of these doctors first-hand now.

love and hugs,

quote:

Originally posted by Nancy Bonk:
Thanks Teri. Reading it and hearing it from you always make me smile.

LOVE the picture of Dr. Young. It was so COOL to meet him in person at the conference. Thank you for sharing that experience with me.

{{{{{{{{{{{hugs}}}}}}}}}}}}}}}

Teri, thanks for sharing your success story with us. It is inspiring, but I was also discouraged realizing that some of these meds (Imitrex in particular) aren't working for me. Maybe I'm just too new to this & we need to try some other things.

LisaB

Thank you for posting your migraine story. On a day when I like there is no hope for me, it gives me some.

Monica

Lisa,

You're welcome. Please don't get discouraged. Imitrex doesn't work for everyone. There are seven triptan drugs. They each bind to different groups of serotonin receptors to make each work a bit differently. It's well worth asking your doctor about samples of the others and giving them a try.

As difficult as it may be, we must be patient. It took four years working with Dr. Young to get to where I am now. If I'd given up, look at what I'd have missed out on.

gentle hugs,

quote:

Originally posted by LisaB:
Teri, thanks for sharing your success story with us. It is inspiring, but I was also discouraged realizing that some of these meds (Imitrex in particular) aren't working for me. Maybe I'm just too new to this & we need to try some other things.

LisaB

Hello, Monica,

Have I welcomed you yet? Welcome! If I'd already welcomed you, you're doubly welcomed.

Absolutely, there's hope! Just tie a knot in the end of your rope and hang on.

quote:

Originally posted by Monica:
Thank you for posting your migraine story. On a day when I like there is no hope for me, it gives me some.

Monica