Emailing.

I've been looking around for how to convince the FDA to put Darvocet back on the market and came across a few email addresses:

Ralph Nader is a big-shot attorney who was taking Darvocet before they took it off the market, so he understands the issue and could possibly have some pull in getting the FDA to undo their withdrawal.

info@nader.org

Public Citizen is a "consumer advocacy organization".  They're the ones who fought to take Darvocet and Darvon off the market.

hrg1@citizen.org

The FDA is obviously who's ultimately in charge.  I have two addresses for them.

druginfo@fda.hhs.gov

oshi@fda.hhs.gov

I would really appreciate it if you would take a few minutes to email these people.  If you'd like to simply copy and paste the emails I've been sending, that would be okay too.  Just let me know, and I'll send them to you.  The more emails these people get, the more likely they'll listen. 

Bad news.

Bad news number 1:  The only medication I've ever found that helps my migraine pain nearly every time I take it is Darvocet.  In case you haven't hear, it was recently taken off the market.  Thank you, FDA. 

Bad news number 2:  I talked to my pain management doctor about the situation, and he prescribed Vicodin.  I didn't realize until I got home that Vicodin has hydrocodone in it.  I'm allergic.  So then I asked my neurologist for something.  She gave me Thorazine, which made me so sleepy I start slurring my words after a few minutes and then sleep for fifteen hours.  Next try she gave me Talwin.  When I took it I was so dizzy I couldn't even sit up.  So, of course, I tried again.  It took over a week to get in touch with my neurologist.  I left several messages and never heard back.  When I finally did get to talk with the nurse, her message was "The doctor says there's nothing else she can do for you."  Seriously?  Thank you, neurologist.

A little good news...  My mom did a whole lot of Internet searching after they took away Darvocet and found that lots of people who took Darvocet found Ultracet to be almost as effective.  I got the super nice neurologist (whom I've canceled any further appointments with, might I add) to call me in a prescription, and it's actually worked some.  It's not Darvocet, but it's better than nothing.

Exercise, part two.

I was really gung-ho about this exercise thing the last time I blogged.  Unfortunately, a month has passed and I've only exercised three times.  The day after my big decision to start exercising and stick to it, I decided to go to the indoor pool and swim.  I got to the gym, got all ready to swim, and then realized I didn't have a towel.  You can rent towels from the gym, but you have to have your school ID, which I didn't have, of course.  I could have gone back home and gotten one, but I had a meeting in less than an hour and had no time.  I decided to go upstairs in the gym and walk on a treadmill or something since I couldn't swim.  But because I was planning on swimming, I didn't wear clothes appropriate for treadmilling and was sweating by the time I got to the top of the stairs.  So what did I do instead?  Went to Sonic.

I'm terrible at exercising.

Exercise.

I have a terrible relationship with exercise.  Exercising makes me feel so good, yet so bad.  Exercising regularly helps lessen several of my symptoms, but boy, does it give me a headache!  I'm terribly out of shape these days.  I have to sit and rest after vacuuming my tiny living room.  I need to start slow, and that's my problem.  I want to go big right away.  And when it doesn't work, I give up.  I took up swimming this summer.  It was fantastic for a couple of weeks, and then I tried really swimming rather than just kicking around.  When I couldn't do it, I gave up.  Same with walking.  I tried that last year for a while but couldn't stick with it.  It seemed pointless to go to the gym and walk only half a mile.  It's hard to convince myself to exercise when I know I can't do much and that any exertion is going to make my headache worse.  But sitting and feeling sorry for myself doesn't help either.

So this is me committing to finding an exercise regimen I can stick with.  Here are the things I'm going to try:

• water aerobics
• swimming
• walking
• yoga

They're all things I've tried before, but mild exercise is hard to come by.  And this time I'm accepting from the beginning that it's going to be hard and that I'm going to have to take it slowly.  I may have to leave after 15 minutes of the 45-minute water aerobics session, and that's okay.  I may have to swim while holding on to a kickboard or only walk to the end of the block and back or skip the hard moves in yoga.  But all that's okay.  I'll probably get discouraged along the way, and I'll probably want to quit, but I'm going to try.  I need it for my well-being.

Waiting.

I'm a little less hopeful than I was the last time I blogged.  I had Botox; it may have helped a teensy bit but nothing outstanding.  I decided not to try the stimulator yet because my neurologist suggested I try Botox again before knocking it.  Sometimes it helps more the second time than the first.  I can't have it again until March, though.  So I'm back to waiting.

I do have a plan of action, which should be encouraging, but I'm a little less than encouraged right now.  Those teensy moments when the Botox did help, I was pretty much pain-free, which is a big deal.  However, I still had all the other migraine symptoms, like nausea, dizziness, just plain feeling bad.  A treatment like Botox or a nerve stimulator will only take away the pain.  The other symptoms--which are often just as bad as the pain--will always be there.

So I feel like I'm sort of at a dead end.  All that's left to do is wait.  But I'm prepared to wait.  David writes in Psalm 39:7, "And now, Lord, for what do I wait?  My hope is in You."  I'm ready to wait for relief, yes; but I don't have to wait to live my life.  My hope is in Him, so I have everything I need right now.  I may not be able to live a full life according to the world's standards, but the Lord has a plan.  I don't have to spend my time waiting; He's fulfilling His plan right here right now.  I have to depend only on Him, and He is already working.

Pain management.

I went to a pain management doctor for the first time last week, and I think he might just save my life.  I go back tomorrow for Botox injections and a TENS unit.  The doctor doesn't have much faith in either of the two, but he doesn't want to skip over any less invasive procedures before moving on to more invasive ones.  If the Botox and TENS don't work, we'll begin the process of trying a nerve stimulator.

The biggest hurdle to cross with the nerve stimulator will be getting insurance to cover it, because it isn't FDA-approved.  If my current insurance won't cover it, I'm changing insurances in January and will try it again with the new insurance.  I'm really hoping I can have it done before January, though.  I begin a teaching internship in January and will be in a classroom full of high schoolers everyday.  That could make for a really big headache if I don't find some real relief before then.

I'm keeping my fingers crossed that one of these procedures will work.  Things look more hopeful now than they have in a long time--or ever, really.

Where I've been.

In my quest for a cure--or relief of any sort, really--I've been through several doctors and many medications.  Here's a list of the medications I've tried:

1. Midrin
2. Elavil
3. Topamax
4. Cymbalta
5. Paxil
6. Inderal
7. Zomig
8. Maxalt
9. Imitrex
10. Treximet
11. Axert
12. Zonegran
13. Flexeril
14. Dolgic
15. Ultram
16. Lortab
17. DHE
18. Toradol
19. Reglan
20. Verelan
21. Tylenol 3
22. Demerol
23. Phenergen
24. Dilaudit
25. Stadol
26. Darvocet
27. Zofran
28. Lamictal
29. Prednisone
30. Morphine
31. Depakote
32. Seroquel
33. Piroxicam
34. Migrelief
35. Vitamin D
36. Nadolol
37. Lexapro

Yes, thirty-seven. After these thirty-seven medications, my current doctor deemed me "unresponsive to medication."  That's not quite what you want to hear when you're in constant pain--especially when all tests have returned normal and no one can find a cause.

Which brings me to where I am now.  I'm still on a few preventatives, none of which offer real relief, but they do allow me to carry on a pseudo-normal life.  I take Darvocet, Piroxicam, and Zofran when the pain and nausea get unbearable.  I recently had occipital nerve injections, which offered a day or two of relief each time.  Because the injections helped some, I may be eligible for an occipital nerve stimulator, which is implanted under the skin and sends electrical impulses to the nerves so they don't feel pain.  I have an appointment with a pain management doctor in a few weeks to be evaluated for a stimulator.  I'm praying this is the answer.  We'll see.