My LIfe with Migraines

Headaches. Headaches have taken over my life. This is why I have not been posting. It is why so many other things in my life have been dropped or become sources of anxiety -- will I be able to drive my son to that birthday party? Will I be able to go out with friends that night? Will I be able to make it back from visiting family in Mandeville if I have to take medication while I am there? Will I be able to get to work to handle that client meeting?

I have always had headaches, even as a small child. They got much worse and were officially labeled migraines after my dad died when I was 15 (sidebar -- I've been ruminating a lot on that lately with Steve Jobs' death from a similar cancer). But still, for most of my teenage years and early adulthood, they were mainly a nuisance, but not something so severe I couldn't function. I relied on some prescription medicine when a bad one came on, and once every year or two I would have one so bad I would have to go to the ER for a pain shot. They were definitely a hazard and an unwelcome part of my life, but manageable.

When I was pregnant with Henry, I had headaches almost every day for months, but they weren't very severe most of the time. They were diagnosed (incorrectly, it now appears) as sinus headaches. So, when we decided we would try to get pregnant again, I had sinus surgery, hoping that would alleviate the congestion that I thought was causing the pregnancy headaches. But there I was, pregnant with Dean, having daily headaches that were significantly more severe than I had experienced with Henry. That struggle has been chronicled on this blog previously, but suffice it to say that the headaches I experienced, and the anxiety over treatment that came with them, are the primary (though not the only) reason that we have decided not to try for more children.

The headaches got somewhat better after I gave birth to Dean. They were bad in the first few months, probably due to sleeplessness and post-partum depression, and none of the new migraine abortive medications seemed to have any effect. After I started taking an anti-depressant for the post-partum depression, the headaches didn't go away completely, but I went from seeing my neurologist once every two weeks to once every six months because they seemed to be under control. I didn't like being on the anti-depressant -- mostly b/c of a general distrust of pharmaceuticals, but also because I just didn't feel like I needed it anymore -- so after a year, I went off it. The withdrawal was very unpleasant -- brain zaps, lightheadedness, and return of a daily headache -- but I persevered and have been without such medication for a year and a half. The headaches resumed their pre-pregnancy frequency and intensity -- predictably occurring after a period of stress or insomnia, but generally not too much of a cross to bear.

Then last fall the frequent headaches returned. Around this time, my dentist pointed out, as he has done for years, that my bite problems and possible TMJ disorder could be causing my migraines. I dithered about this, given that my neurologist discounted the theory and it would involve a lot of tests and trial treatments to follow through on it. I continued to deal with the headaches until mid-March, when we took a trip to Louisville. I had been prepared for a bad round of headaches, what with flying and dealing with the kids in a hotel, but amazingly, the headaches seemed to vanish. And barely returned for the next two months. I had my life back. Unfortunately, I started dealing with a painful ovarian cyst. I pretty much stopped exercising, except for yoga, and was very distracted by worry and discomfort for most of May and June. And the headaches came back.

I finally agreed with my neurologist's recommendation to go on a preventive medication. I was resistant to getting back on anti-depressants, so we tried Nadolol, a beta-blocker. At the same time, I started weekly acupuncture. The headaches continued, slightly less intense but no less frequent. I pretty much woke up every day with slight pain on my left temple and tension in my jaw, and at least once a week the headache became so bad I had to medicate it, which seriously interrupts my life as I can't drive and have a hard time handling the kids when I am dosed up on Ativan, Vistaril, and an NSAIDs. Speaking of NSAIDs, did you know they cause stomach ulcers? Yep, you probably did. I did, too, in some part of my brain, but obviously not in the part that was repeatedly taking aspirin and advil on an empty stomach. So, after two months of taking this stuff two or three times a week, I ended up with a stomach ulcer. Very unpleasant. Interestingly, during the three weeks or so that I was in near constant discomfort from the ulcer, and also knew I had to avoid taking NSAIDs at any cost, I had very few headaches. I thought I had really reached a turning point (more likely, my body directed stress to the ulcer rather than to my head).

During the past few months I also decided to investigate the TMJ theory. I saw two dentists and an oral surgeon, trying to get a consistent diagnosis. They all agreed that I do have serious bite problems and TMJ misalignment and that this (exacerbated by stress) is probably why I am having the headaches. I spent more than a thousand dollars, not covered by insurance, on a splint, only to find out that it may have been making things worse so I need to have jaw surgery which should be performed by someone in Alabama, and then have my splint refitted, and then wear braces for years. I was in tears after that visit.

Faced with all of that, I decided to be open to an anti-depressant. My neurologist prescribed Viibryd, a very new to the market reformulation of some established anti-depressants. It is supposedly faster-acting and has fewer side effects. But I seemed to have a pradoxical reaction -- I had not been feeling depressed before starting it (one of the reasons I have been reluctant to go this route), but within a day or two, I was feeling increasing anxiety. By day 6, I was having crying spells and such anxiety it was hard to get through the day. We cancelled the Viibryd. After a few days to get back to normal, I am now on Zoloft, which is what I was on for the PPD, so I at least feel comfortable with it, if not convinced it is necessary.

I then called the biofeedback therapist I had seen for a couple of months when I was in law school. I believe it had helped me before, and in fact that therapist was one of the reasons I became a believer in the HeartMath approach. Those ten weeks of treatment in 2003 really changed my life, but somehow I seem to have gotten away from the visualization techniques and breathing and general attitude toward stress that was so effective back then. I have only had one visit so far, but will be going back on Tuesday, and I feel optimistic.

I have to have hope.

I have avoided writing this post for quite some time, partly because I am self-conscious about laying open how much these headaches have taken over my life (I have had one requiring medication almost every day for almost the last three weeks). And I am self-conscious about people's well-meant attempts to help me -- have you tried this? Have you tried that? Maybe if you just thought less about the headaches they might go away...at least you don't have a life-threatening disease...

I don't want anyone to think I am having a pity party (I am, sometimes, but I recognize that this is both unhelpful and out of proportion). I am so very aware of how fortunate I am - that I have access to and can afford these treatments, most of which are not covered by insurance; that I have a supportive husband who can pick up the slack on the days I can't drive carpool or give the kids their baths; that I have a job that allows me to work from home on the days when I can't make it to the office. If I have to have headaches, I am pretty well situated to treat them.

I just wish I knew how. I wish I knew for a fact that I will get better, rather than relying on hope. If I knew the TMJ was the problem, I'd have the surgery and wear the splint and braces, no problem. But my neurologist, biofeedback therapist, and a dentist whose book I bought (Robert Uppgard) all say that surgery is not the solution, or at least that I should try some less invasive approaches first. So that's what I am doing.

And I have absolutely no doubt about the role stress plays in all of this. That is why I am willing to go back into therapy, despite feeling like I have traveled all this ground so many times before -- I know I am a type-A personality, I know that I am too hard on myself, I know that I compensate for a sensitivity to life's chaos by inventing arbitrary rules and goals that provide me the illusion of control, I know that I over-identify with my work and with external rewards, I know that the loss of my father makes me have a heigtened sense of life's vulnerability -- and I know that I inherited a gigantic dose of my propensity to depression and headaches from him -- he suffered with both all of his much too short life. I know all of this, and I even know how to do certain things to counteract the factors. But "to know the good is to do the good" is a heap of manure, and so now I have to pay someone else to tell me these things all over again because for some reason I will do them if someone else tells me to (hello, did I mention the external rewards factor?).

Argh. I just want to be able to have fun with my kids, to take care of them and not have to rely so much on Matthew or friends. I want to be able to do all the things I tell myself I can do when I am feeling well -- I am currently serving as a fundraising co-chair for my son's school, serving on the board of a neighborhood organization, in charge of mailing heaps of donated stuffed animals to a charity in another state, working on a children's book and a novel, oh, and trying to update this blog on a semi-regular basis. I also work five days a week and have two kids and a husband and a circle of family and friends I'd like to see more than once in a blue moon. And I would like to do all of the above perfectly.

And I wonder why I am having migraines?