Botox For Migraines?

Yes!

An article in the financial section of my newspaper this morning noted that Allergan's stock was up over 11%. The financial market had reacted to news that Allergan had had a positive trial in the use of botox for migraine.

In the trial, the average patient suffered from chronic migraine 15 days per month and experienced both a reduction in number of days per month and in severity of pain per episode with the use of botox injections. As a result, Allergan will be pursuing further testing in order to get FDA approval for the drug as a migraine preventative.

There really aren't very many approved treatments for migraine. There are a lot of drugs used off-label, but surprisingly few drugs approved for migraine prevention or treatment. I know, because I've taken most of them.

I've used botox for years now, and it DOES work. According to my Beverly Hills dermatologist, it actually only works in about 30% of patients on whom he tries it, but for those patients, it is a real godsend. And yes, he believes it is safe: so much so that he injects his son.

I found out about it because I complained about my ever-increasing headaches to my wonderful rheumatologist. I have the best rheumie anyone could want. Around our house, he's referred to as the "divus" (Latin for "divine") doctor. And he referred me to my dermatologist. I drive somewhere around 2.5 hours to see them both. It's worth it.

My derma got into using botox in his practice precisely because it did work on his son. A friend of his, another doctor, had lobbied Medicare to pay for it (successfully) on the grounds that it was cheaper to prevent migraines than to pay for emergency room visits for patients who had frequent, ongoing headaches. When my doctor found what it did for his son, he decided to offer it to his patients. I'm grateful he did.

Botox works for somewhere between 3-6 months on migraines. On me, it's more like 3 months. I know because I keep a headache diary for my neurologist, stating the level of pain I have on a scale of 0-3 morning, noon, and night every day, what medication I use for that pain, and what level of relief I get from it. At the end of the month, I give that month an overall score for pain level. I also note any headache triggers, my cycle, when I get my botox shots, and what preventative drugs I've taken and in what dosages. And I have YEARS of these diaries now.

I can tell that I have the fewest days of migraine pain in the month directly after a set of shots, and the most before a new set of them. My overall pain levels are greatest when my shots are old. Two or three times in the past few years I have missed an appointment with my dermatologist and gone six months between rounds of shots, and that has operated as a sort of control: my number of days with pain definitely increased in months 4-6 and so did my pain intensity.

The logs make it clear that it's worth it to me to go in for the injections. And yes, Medicare pays for it. Medicare gets good value for its dollar, as well, considering that I can also track my E.R. usage when I've had the injections and when I haven't. With injections, I use the E.R. on an average of only three times a year; without them, more than double that. Botox shots cost $300/set of 16 in Beverly Hills. An average E.R. visit for me, including I.V. cocktail of seven drugs, is around $1,300. If the botox saved Medicare ONE E.R. visit, much less 3-4, it would have paid for itself.

For those of you who may be taken in by the advertising for competing products which make a very big deal of "no painful injections" I will say this: I have fibromyalgia and I don't like needles. I also don't particularly like looking like I just walked through a mosquito-infested swamp, which I do for a few hours after my injections. But these shots are NOT painful. I wouldn't get them for fun. Some of them go directly into fibro points. They are uncomfortable. They are not painful. My derma uses a very fine insulin syringe and doesn't take long about it; my entire visit takes about 10 minutes. As soon as the needle is out, the discomfort is over.

I would very strongly recommend checking out a potential dermatologist and making sure that s/he has experience before getting injections. And YMMV. It doesn't work for everybody. Can I swear to you that there can never be any side-effects? Obviously not. But so do the narcs I'd take without the botox to prevent the headaches. So I'll be back in my derma's office on November 10 for more injections.

Have a nice, migraine-free day. And think about buying Allergan. It will be going up when FDA trials are over. :)

Deep Brain Stimulation: hope for treatment-resistant illnesses?

An article appeared in my local newspaper this weekend written by Judith Graham of the Chicago Tribune entitled "Deep brain stimulation offers hope to people with treatment-resistant illnesses". I was intrigued.

Basically, it said that deep brain stimulation is a technique in which doctors drill two dime-sized holes in the skull and guide small electrodes into two brain sites the size of tic tacs or small green olives. A battery pack is then implanted at the base of the skull in the back of the neck, and the electrode locations become the targets of pinpointed electricity. The current from the batteries tamps down brain circuits that are firing abnormally or revs up circuits that are underactive, experts hypothesize.

It is already in use to treat Parkinson's disease, but is in trials for other uses, such as treatment-resistant depression, OCD, epilepsy, traumatic brain injury, Alzheimer's disease, and chronic pain. In some cases, the results are little short of miraculous. One patient had been suicidally depressed for four years before the surgery and now enjoys a depression-free life, but it didn't happen overnight. For the first six months he felt nothing and was devastated. The doctors had to tinker with his implants until they got just the right settings. Then he woke up and realized "the pain, the fear and the anxiety were gone".

I know I could live with that. Deep brain stimulation is still considered a treatment of last resort for those for whom conventional treatments have failed, but in the U.S. that includes approximately 2 million depressed patients per year. It is expensive, costing approximately $150,000 per patient. There are potential side effects, as well, including problems related to medical hardware, brain bleeds or hemorrhages, infections, post-surgery seizures and headaches, pain and severe mood fluctuations, reports suggest. Not something to enter into lightly. But after twenty or more years of suffering, if I had the possibility in front of me of being WELL?

I know I have virtually no shot at being included in a trial because of my other medical conditions ... but I sure would take my chances.

Have a nice day.

Witchcraft and Autoimmune Disease

I was talking to a very old friend this weekend -- a Craft student of mine, in fact. He wanted to know if I'm teaching now. I'm mostly not. The reason isn't obvious, either. It has to do with my autoimmune diseases.

No, they're not contagious. The problem is that they're exhausting. Chronic fatigue is one of the primary SX's (symptoms) of lupus and is a defining SX of fibromyalgia, which, although it is not technically an autoimmune disease (there are no blood markers for it), mimics AI diseases so closely in its SX's that it is often counted among them.

That means I take stimulants all day to function, but by the end of the day, I'm wiped out. Fortunately, if you're Wiccan, you can worship anywhere, anytime, in the middle of a crowded room, and nobody will know. But you can't do most full and new moon rituals mid-day. And even staying awake past dark to do a ritual requires extra rest during the day and extra stimulants for me. Easier in the winter when dark comes earlier. Since my kids are getting of an age to train soon, I'm going to have to figure out an answer to this one.

The diseases have other impacts, as well. Lupus patients have a seven times greater chance than "normal" people of being migraineurs, so my lupus is a contributing factor to my chronic migraines.

As a Ps (priestess), I am supposed to fast before rituals -- something that is likely to trigger a migraine. And because it is, I am absolved from the requirement (we're not inhumane, and we wouldn't want, say, a brittle diabetic fasting), except that I know perfectly well why the rule is there and what a difference it makes whether I do it or not. So I prefer to keep to it and take my chances, which don't always manifest. Or to limit myself to liquids, anyway.

And what if I have a migraine anyway on a ritual day? Fasting includes no sex, alcohol, or drugs beyond prescriptions. Technically, my pain meds are prescriptions, but the point is not to alter consciousness artificially, but to leave it open to magical change during the ritual. You can't do that on Vicodin. So if I'm in pain, ideally I go without pain management, at least for the few hours before the ritual. But if I'm in a lot of pain, I can't concentrate on the ritual. It's a toss-up. I have to make my best call. Again, the disease sneaks in on my magical life.

Nobody ever said life as a chronic pain patient was easy, but probably not that many people are concerned with how it affects their religous lives.

Meanwhile, some very nice people some distance from us have invited our family to rituals at their place, but we have turned down the invitation more often than not because I couldn't stay awake. I enjoy the fellowship. They're even from a cousin tradition to my own. Regrettable, truly.

My friend is right. I should be more proactive. These are my challenges, though, not his. I need to practice what I preach about everything being possible despite these diseases if one is motivated enough...

Guess I need to work on the motivation.

Have a nice day.

Why Do I Do This?

I was IMing this morning with my husband and happened to mention that I'd spent an extra hour beyond my usual two hours a week as a volunteer on a Christian prayerline yesterday. He asked me if I'd minded.

I thought about it before I said no. It isn't obvious what I'm doing on this line in the first place, considering that I'm a Wiccan priestess. The answer is somewhat complex. A number of years ago I had an unusual medical problem and, out of desperation, accepted a friend's invitation to his church's "healing rooms". To my intense surprise, I was healed. There was no other explanation for the "spontaneous remission" of my condition that occurred. In return, I offered service to the Being who had done the healing, and it has taken a number of forms. This prayerline is one of them. I don't feel it's hypocritical. It doesn't matter to me which spiritual language I use to comfort people if they feel comforted, mine or theirs. In any event, Wicca, unlike Christianity, is not an exclusive religion. We believe that all paths are valid, including Christianity, so I'm perfectly willing to accept Yahweh as one form of divinity ... just not the only one. I suspect the organization running the prayerline wouldn't like my, um, religious diversity, however, so I don't tell them.

And that organization had just recently asked me if I was willing to stay on their substitution list. I had stalled answering them. I don't always enjoy the time I spend on the line. Some days I seem to really touch people and it's very worthwhile, but then, there are also those people who call repeatedly, year after year, just to complain and dump on the person who's there to pray for them. I feel like telling them to stop blaming God for their problems and take some personal responsibility for their lives. It gets old. So I had to really think about whether, on the whole, I was doing enough good in the world by spending time on the line that it was worth it.

I thought about some of the people I had talked to over the years who had seemed genuinely touched by their time with me, and why they were. And I realized what I had to offer that was maybe, if not unique, at least mine. I concluded that what I give them, ironically, is my pain. Being on the line turns my pain into something useful, something positive. People who are hurting badly can relate to it because they see someone else who has truly suffered, sometimes IS truly suffering, who gets through it anyway.

Because of faith? YES. Maybe not theirs, but they don't need to understand that; it's irrelevant. Does it matter if I literally believe in the Scripture I use to make them feel better? I don't think so. The point is that bootstrapping yourself out of despair is a process. Someone who is too depressed to reach out to anyone nearby reaches out to a stranger, and leaves feeling less despairing, willing to talk to someone who IS nearby, willing to try again, able to see that there is life not just after the pain but despite the pain, through the pain. They're willing to come back into the light. And I've been there: it IS a process. When I'm that depresssed, it doesn't matter what brings me back a bit, whether it's a poem, a friend's smile, or Prozac. All that matters is that something does it.

If my pain can be someone else's Prozac, it's worth my time after all. Even if most of the time I'm on the line is spent routinely listening to people ask to win the lottery or meet Mr. Right.

Kinda puts my current migraine in perspective. Still sucks, though.

Have a nice day.