Posted 2/11/2009 5:43 PM (GMT -7)
I'm going on year 7 of my constant migraine so I really understand why you feel that doctors and medication won't get you anywhere but I really want to urge you to rethink that.
As things stand now the best that my pain gets is 8/10. I've suffered from depression and anxiety too, also AFTER the migraine started. But even though my pain level and frequency of the 10/10's are the worst they've ever been now I'm actually starting to get close to getting back to work after 3 years of being unable to and trying to finish my degree. I'll tell you why in a moment.
I started treatment with a headache specialist only a month or so after the headache started. And I've been having monthly visits at some of the best headache clinics in the world for more than three years. about 18 months ago the Jefferson Headache Center team told me that they had tried every treatment for NDPH (new daily persistent headache, my diagnosis) and that they had nothing new to try. In the years prior I had also seen other specialists like sleep disorder specialists, acupuncturists, massage therapists and physical therapists, pain specialists, eye doctors, dozens of psychiatrists and psychologists and even more. I've tried every class of drug used for headache and then some, had Botox injections, Lidocaine IV treatment, bodine infusions, nerve stimulator implants, three planned hospitalizations adding up to nearly a month and a half and a whole lot more.
This July I was the second person to try the new experimental protocol for Ketamine IV treatment for headache at Jefferson. Like all of the prior treatments it didn't reduce my pain level, even when they went past the highest safe dose. However, due to the nature of the drug, I was in a state of inebriation for a bit less than a week. It was just like being drunk. I could only concentrate on one or two things at a time. So while my pain stayed high, for 4 or 5 days I was much less aware of it. A lot of things about that helped. Having the first period when I could almost ignore my headaches in 5.5 years did wonders for my mental health and gave me some time for some clear thought without severe pain poisoning my perspective. Though temporary, I felt like I had some control over my headache for the first time.
So, thinking about how that helped me, having my pain be just as bad but being actually happy, I really changed perspective about how I need to treat my headaches. As I've said, drugs and medical treatments wouldn't get rid of the pain, but I would be doing a lot worse if I stopped taking them. Some months prior, when I was told that I had run out of options, I started (or restarted rather) taking continual opioid pain medication. This did (and continues to) improve my quality of life, even though it was still quite bad. So, thinking about all of this and having had many discussions with my great neurologist I realized that, even though my pain was still very bad, some help was better than none. I had been told for years that I needed to control the things that I can in my life and not obsess over the truly uncontrollable things. It took me a long time to be able to do that.
Now I am still on a dozen or so daily meds and continue to look for new options but I accept that they are unlikely to get rid of my headache. Similarly, I know that my concentration and mental acuity won't get back to the level that they were at before the headache. But doing things that improve my quality of life, even if they're small steps and I rarely am able to do some of them, has made my life a lot better than it was a year ago. My philosophy is that, while you shouldn't stop looking for new treatments, you should find the daily protocol that makes things least bad for you and then take every step that you can to have a better life and not obsess over the steps that you're not currently able to take. One of the greatest tools that I've found recently is cognitive-behavioral therapy. I've known of this school of psychology for years but I never gave it a shot. I think that my exposure to therapy in movies and TV instilled an idea in me that therapy isn't real therapy if I'm not sitting on a couch talking about my childhood, feelings and/or dreams. Unlike that sort of therapy (psychoanalysis--which I tried for years), CBT focuses on the present. When I meet with my therapist we come up with strategies to help me achieve my goals. For example, when I moved into a new apartment recently I realized that I was having a lot of trouble loading up our stuff from storage in the morning and then moving it to the apartment. So we figured out that I do much better when I load up the car the day before, spend the night at the new place and do the unloading the next morning. It really helped me have the energy to get our new place together. It's just a small example really but it was important to me. I read a quote in a Saul Bellow book the other day saying, "No! Live or Die--just don't poison everything." That exemplifies my new attitude: if you're not doing everything you can to make your life the best it can be then you're hardly living at all. And you're letting the headache win. For years I was so intimidated by my failures that I just stopped trying. But the reality is that even though the pain does put limitations on your abilities, if you try your hardest your life will at least be better than it is now (or was). For example, I won't be able to go to medical school like I had wanted to before the headache started. But, despite what I've thought in years past, that doesn't mean that I can't have ANY career. So I'm working toward finishing my degree and getting certified to teach Biology. I probably won't be able to go back to school full time but I'll eventually get there even if I can only manage 1 class a semester.
So try not to give up on medicine. unfortunately it can't always cure all ills but that doesn't mean that it can't be helpful. Doing something is a lot better than doing nothing, even if it's not everything that you wanted. As my therapist says, "Activity breeds activity and lethargy breeds lethargy." Start small, control what you can and I know that your life will improve.
DX: NDPH, Recovered CRPS
RX: Lamictal, Provigil, Clonazepam, Ambien CR, Emsam, Namenda, Oxycontin, Oxycodone
PRN: Haloperidol, Zyprexa, Lodine, Zofran, Skelaxin