My mind is feeling ambitious this evening, despite the fact that it is Monday, not usually the most energetic collection of post meridian hours of my week. I want to wash my bird-crapped car, go for a walk and enjoy the long spring evening outdoors, maybe pull a few weeds in the garden before the daylight's completely gone.
But every time I stand up from the couch, my body says bllllaaaahhhh and all the blood rushes to my head and I sit back down again to watch another episode of the Weeds Season 6 boxed set from the library.
It's the Maxalt -- while effective at halting a budding migraine in its tracks (as long as I take it soon enough) side effects include devastating fatigue, heaviness of the limbs and a slightly underwater feeling. But most of the day I fought a slight headache. I doubted it would achieve the status of the Real Deal, the Big M that most horrible of horrors, *migraine* (that is) mainly because I just had a two day killer-diller last week, and USUALLY that means I'm safe for at least a couple of weeks, for some reason. But because lately they've had a way of sneaking up on me, I finally caved in and took drugs just to be safe. I really don't think I could take another two days of blinding pain just yet.
I know I've mentioned my Christian Science upbringing, besides which having, in my middle age, become rather boringly puritanical about drugs and liquor and whores and such (just kidding -- I'm still into whores. No, REALLY kidding, I'm not actually into whores anymore -- I think it's the drugs talking) ANYWAY, what I am TRYING to say and having such a difficult time getting around to is my ambivalence about The Drugs.
Funny thing about that, too. Last year when I had this procedure they gave me a prescription for hydrocodone. I didn't really need it for the post surgical pain, which was kid stuff. Coupla ibuprophen do the trick for that. But I was happy to have it for those occasions upon which I didn't take the Maxalt fast enough and got nailed. The first few times I took it, it almost seemed miraculous, the way it dissolved the pain and sent me into a deep restfull sleep. In fact, it made me a little nervous. As I think I've said here before, strong narcotics and chronic pain seem like an inherently unstable combination.
As it's turned out, however, my aspiring addiction seems to have been squashed in the bud. Probably for the best, but I still have the whole horrible days of debilitating miserable pain thing to deal with, so I'm splitting the difference and calling it an ambiguous blessing.
So here's the deal. Although, as I said, the first few times it worked beautifully, very quickly I seemed to develop a tolerance -- at least insofar as the pain-killing properties of the stuff are concerned. When it came to the nausea, well that's a whole nother story (as we say here in Southeast Texas)!
The time before last when I waited to long to take Maxalt and resorted to hydrocodone in a futile attempt to outwit the migraine, after three hours in which it had yet to do much to blunt the pain, I suddenly was overcome by nausea and puked my guts out. So that was pretty much that for the narcotic pain relief and off I went into two days in migraine land. So this time, although I thought it was possibly a waste of perfectly good drugs, afraid of the pain and hoping for the best, I popped a pill anyway.
This time it was a rather large mistake. Oh, it killed the pain initially, okay. And I slid off into a grateful narcotically-induced blissful slumber. But when I woke up 10 hours later, the migraine was back -- and the nausea was waaaaay beyond anything I'd experienced before. I have NEVER puked so much in my life, and I know it was the hydrocodone and not the migraine, because the pain that first day wasn't even that bad. It was much worse the second day and I only threw up a couple of times. I'm pretty sure I puked 14 times the first day, and the only reason I'm able to make an estimate at all is because it seemed like I was on an hourly upchuck schedule -- and the puke-fest went from approximately 8 a.m. 'til 10 p.m.
So, I'm pretty much at "never again" with the hydrocodone.
Although, I have to admit -- I still didn't go so far as to throw the bottle in the trash. I compromised and tossed it into the back of a bathroom drawer. What can I say? Fear of pain is a powerful thing.
Monday, April 30, 2012
Monday, April 2, 2012
The procedure, part II
I think I started this more than a month ago so I really ought to finish it...
When we last saw our plucky heroine, she was awaiting surgery for a neurostimulator implant at Humble Surgical Hospital in Texas, with great trepidation.
It was strange coming out of the anesthetic.
Before I reached consciousness I remember saying over and over in my mind -- at least I think it was only in my mind -- "I believe. I believe. I believe..." Just what I believed then was a mystery to me when I finally came to completely. God? Modern medicine? Ghosts? Who knows?
My throat hurt and I desperately wanted water, but all I could do was croak "hurt," to which a nurse said she would give me more pain meds -- I said "No, no!" because the last thing I wanted at the moment was more drugs -- I was totally fucked up on dilaudid. They told me about a button I could press for more drugs. I wondered what was to stop patients from overdosing.
It seemed like it was hours before they finally gave me water.
Throughout the night they continued to wake me up at intervals, and each time I remember thinking, "Oh God, I did it. I actually did it." And not in a good way, either.
The next day was beyond awful, but I guess it doesn't materially explain anything about what it's like having this device implanted in my body, so I'll skip it. Suffice it to say I had a bad reaction to the dilaudid and the surgery was probably about twice as difficult to recover from as I'd expected -- the doc told me they could do it as an outpatient procedure, they just recommended the overnight stay "for the patient's comfort." I actually think I'd have been better off at home without the intravenous pain meds, but then, that's that perfect hindsight vision.
In any case, a technician came and programed the device for the first time before I was discharged. I was given a handheld device that controlled the programs, of which I was given four at first. The programs controlled the intensity and the frequency (I guess that's what it is, anyway) of the stimulation, and I could control each of the four leads separately, if I wished to.
Once I got up and around, I found the wires in my head much more painful than I had realized they would be. It felt something like wearing a tight, rather heavy wire mesh cap on my head.
The pain from the incision in my butt wasn't that bad -- in fact, I barely took the pain killers they prescribed for after the surgery. I took half of one maybe 3-4 times. Mostly the dilaudid had made me so sick I wasn't really in the mood for more medication.
It seemed to be helping at first. I don't recall having any major migraines the first couple of months -- but I think it was a fluke. I think I was just in one of my good phases, which I do have from time to time, happily. But I liked to think that the device was actually stopping them before they even started. So I was prepared to make peace with the infinite weirdness it was sharing my body with a foreign device.
The stimulation itself feels a little odd as well. In some ways reminiscent of the pins and needle tingling of a limb that's fallen asleep. At low levels it's somewhat pleasant, but when turned way up (which I do when a headache starts) it can get a bit uncomfortable.
This might be the moment to say I was raised in the Christian Science faith, and although my family wasn't fanatical about it -- we went to doctors and took medicine for colds and such -- there was a certain underlying mindset that health was a more or less spiritual condition, mind over matter, that sort of thing. Sorry I'm not explaining it better, but I'm not sure how much a theological discussion will add to this already lengthy blog post...
Anyway, I just wanted to explain how extreme and intrusive this all seemed to me. I have crazy scars on my scalp (which are covered by my hair, but they still feel really weird) and you can actually feel the wires under my skin and even see them faintly in my forehead. I wear bangs to cover it up. There are also ugly scars in the middle of my back and of course on my butt, which doesn't thrill me.
However, as time went on and the wires and device healed into place, it became slightly less uncomfortable. Full recovery from the surgery took at least a couple of months and going back to work the week after it was a mistake. Taking two weeks off probably wouldn't have been excessive. I didn't really feel the doctor adequately prepared me for what to expect, but I don't know if my experience was typical. Knowing me, it probably wasn't.
I hadn't had the thing very long when all of a sudden the two front leads stopped working. The programs with those leads wouldn't load, for some reason. A couple of programs controlling only the back two leads worked, but pretty soon (by September --I had the procedure in June) I started having migraines again. I went in once and the tech was able to get all four leads up and running, but it wasn't long before the front two conked out again.
When I went back, she couldn't get them going again, and she told me I'd have to have a revision -- basically go back in for surgery, which I dreaded.
Fortunately, the revision was an out patient surgery and they didn't have to mess with the wires in my head -- only the incisions in my back and butt were reopened.
So we did that, got them working again, did more programing -- and by the next month I was back to the same old routine. After the first surgery the tech had told me it might take a few months to tinker with the programming to get it working for me, so I tried not to get too discouraged.
But I've gone back for programming a couple of times since then, and it pretty much seems like I'm taking about the same amount of medicine and spending about the same amount of time in agony as I ever did.
I'm going to go back again for more programming (I've been putting it off because a.)I don't have much hope it's really going to help and b.) I haven't felt like driving over to The Woodlands, which is where Dr. Chapman's office is. But if I still don't see some substantial results, I'm going to look into having it taken out -- which I am also putting off because hello, surgery, not fun!
There are a few more details and odds and ends, but I'll leave that for another post.
Adios, fellow migraineurs -- may you stay one step ahead of your migraine demons, or something like that.
When we last saw our plucky heroine, she was awaiting surgery for a neurostimulator implant at Humble Surgical Hospital in Texas, with great trepidation.
It was strange coming out of the anesthetic.
Before I reached consciousness I remember saying over and over in my mind -- at least I think it was only in my mind -- "I believe. I believe. I believe..." Just what I believed then was a mystery to me when I finally came to completely. God? Modern medicine? Ghosts? Who knows?
My throat hurt and I desperately wanted water, but all I could do was croak "hurt," to which a nurse said she would give me more pain meds -- I said "No, no!" because the last thing I wanted at the moment was more drugs -- I was totally fucked up on dilaudid. They told me about a button I could press for more drugs. I wondered what was to stop patients from overdosing.
It seemed like it was hours before they finally gave me water.
Throughout the night they continued to wake me up at intervals, and each time I remember thinking, "Oh God, I did it. I actually did it." And not in a good way, either.
The next day was beyond awful, but I guess it doesn't materially explain anything about what it's like having this device implanted in my body, so I'll skip it. Suffice it to say I had a bad reaction to the dilaudid and the surgery was probably about twice as difficult to recover from as I'd expected -- the doc told me they could do it as an outpatient procedure, they just recommended the overnight stay "for the patient's comfort." I actually think I'd have been better off at home without the intravenous pain meds, but then, that's that perfect hindsight vision.
In any case, a technician came and programed the device for the first time before I was discharged. I was given a handheld device that controlled the programs, of which I was given four at first. The programs controlled the intensity and the frequency (I guess that's what it is, anyway) of the stimulation, and I could control each of the four leads separately, if I wished to.
Once I got up and around, I found the wires in my head much more painful than I had realized they would be. It felt something like wearing a tight, rather heavy wire mesh cap on my head.
The pain from the incision in my butt wasn't that bad -- in fact, I barely took the pain killers they prescribed for after the surgery. I took half of one maybe 3-4 times. Mostly the dilaudid had made me so sick I wasn't really in the mood for more medication.
It seemed to be helping at first. I don't recall having any major migraines the first couple of months -- but I think it was a fluke. I think I was just in one of my good phases, which I do have from time to time, happily. But I liked to think that the device was actually stopping them before they even started. So I was prepared to make peace with the infinite weirdness it was sharing my body with a foreign device.
The stimulation itself feels a little odd as well. In some ways reminiscent of the pins and needle tingling of a limb that's fallen asleep. At low levels it's somewhat pleasant, but when turned way up (which I do when a headache starts) it can get a bit uncomfortable.
This might be the moment to say I was raised in the Christian Science faith, and although my family wasn't fanatical about it -- we went to doctors and took medicine for colds and such -- there was a certain underlying mindset that health was a more or less spiritual condition, mind over matter, that sort of thing. Sorry I'm not explaining it better, but I'm not sure how much a theological discussion will add to this already lengthy blog post...
Anyway, I just wanted to explain how extreme and intrusive this all seemed to me. I have crazy scars on my scalp (which are covered by my hair, but they still feel really weird) and you can actually feel the wires under my skin and even see them faintly in my forehead. I wear bangs to cover it up. There are also ugly scars in the middle of my back and of course on my butt, which doesn't thrill me.
However, as time went on and the wires and device healed into place, it became slightly less uncomfortable. Full recovery from the surgery took at least a couple of months and going back to work the week after it was a mistake. Taking two weeks off probably wouldn't have been excessive. I didn't really feel the doctor adequately prepared me for what to expect, but I don't know if my experience was typical. Knowing me, it probably wasn't.
I hadn't had the thing very long when all of a sudden the two front leads stopped working. The programs with those leads wouldn't load, for some reason. A couple of programs controlling only the back two leads worked, but pretty soon (by September --I had the procedure in June) I started having migraines again. I went in once and the tech was able to get all four leads up and running, but it wasn't long before the front two conked out again.
When I went back, she couldn't get them going again, and she told me I'd have to have a revision -- basically go back in for surgery, which I dreaded.
Fortunately, the revision was an out patient surgery and they didn't have to mess with the wires in my head -- only the incisions in my back and butt were reopened.
So we did that, got them working again, did more programing -- and by the next month I was back to the same old routine. After the first surgery the tech had told me it might take a few months to tinker with the programming to get it working for me, so I tried not to get too discouraged.
But I've gone back for programming a couple of times since then, and it pretty much seems like I'm taking about the same amount of medicine and spending about the same amount of time in agony as I ever did.
I'm going to go back again for more programming (I've been putting it off because a.)I don't have much hope it's really going to help and b.) I haven't felt like driving over to The Woodlands, which is where Dr. Chapman's office is. But if I still don't see some substantial results, I'm going to look into having it taken out -- which I am also putting off because hello, surgery, not fun!
There are a few more details and odds and ends, but I'll leave that for another post.
Adios, fellow migraineurs -- may you stay one step ahead of your migraine demons, or something like that.
Sunday, March 25, 2012
Oh, the places you'll puke!
Here's a little known thing about migraine for people who don't have migraines (you know, those people who think it's "just a headache"): Nausea and vomiting are a signature motif of the migraine experience.
It's something I don't talk about too much, cause it's kind of gross, really, so what better place than here to spew? (So to speak...)
This weekend, when I spent a great deal of time staring into my toilet bowl (only to realize it was disgustingly dirty -- one of the first things I did when I came out of it was to give a good scrubbing) I started thinking about all the places I've puked.
There's my apartment, of course, but that's to be expected. During a bad migraine I usually make a little nest of blankets or towels on the bathroom floor so I can rest up before dragging myself back to bed.
I pulled over and puked out the car door on my way home from work one day. I puked in a restroom stall at work once. I was just happy no one walked in mid-puke -- I'm sure they would have thought the worst.
By far the nicest place I've puked was the Crowne Plaza hotel in Alexandria, Va. If you're going to have a migraine, I recommend the Crowne Plaza. The bed was comfortable, the room was dark and cool and smelled nice, and the bathroom was beautiful and immaculate. Also, they let me check out late when I explained about the migraine situation.
The worst place I've puked was in a port-a-potty in Austin, Tx, but maybe it's not fair to include that because it was from food poisoning, not migraine. Worst place I've puked from migraine was probably a roadside in Louisiana. That or a rest stop in Louisiana. It's a toss up. Nothing against Louisiana, however. I have a great affection for the state otherwise. That Napoleonic Code rocks!
Oh, and I puked on a sidewalk in Washington D.C. A lady looked at me like I had the plague, but I suppose that's to be expected when one vomits on the sidewalk. Funny thing about that was, I felt like upchuck was imminent, so I crouched down, but nothing came up, so I stood again. I took two steps and water just started shooting out my mouth. That was actually one of the more pleasant vomiting experiences I've had, because I'd been drinking a ton of water. Water (in large amounts) is the easiest thing to puke, followed by vanilla ice cream or milkshake. Lentil soup is awful to barf up, as are jalapenos. Oddly, cranberry juice makes for an unpleasant puking experience. Really, most foods are significantly worse coming up than going down.
I puked in a park near my house (same trip at the Louisiana rest stop barf break -- tried to make it home to the privacy of my own toilet, but no dice).
I puked at a Texas truck stop -- fortunately it was a fairly nice, new, clean truck stop, so it wasn't so bad.
Puking and travel seem to go hand in hand, and I think I know why that is -- I've noticed activity and exposure to light tend to increase nausea, so if I have a migraine while I'm traveling, I'm a lot more likely to be in situations where I'm forced to be up and around and out in the harsh light of day.
There are actually a couple of good things about puking during a migraine. For one, it breaks up the monotony a little. When you're lying in bed and you keep looking at the clock and every minute feels like 10, taking a puke break eats up some time, and changes the scenery a bit. Also, it is tiring so sometimes I can fall asleep for a little while after a good puke, which also passes the time painlessly. Other than that, there's really not much to be said for it.
It's something I don't talk about too much, cause it's kind of gross, really, so what better place than here to spew? (So to speak...)
This weekend, when I spent a great deal of time staring into my toilet bowl (only to realize it was disgustingly dirty -- one of the first things I did when I came out of it was to give a good scrubbing) I started thinking about all the places I've puked.
There's my apartment, of course, but that's to be expected. During a bad migraine I usually make a little nest of blankets or towels on the bathroom floor so I can rest up before dragging myself back to bed.
I pulled over and puked out the car door on my way home from work one day. I puked in a restroom stall at work once. I was just happy no one walked in mid-puke -- I'm sure they would have thought the worst.
By far the nicest place I've puked was the Crowne Plaza hotel in Alexandria, Va. If you're going to have a migraine, I recommend the Crowne Plaza. The bed was comfortable, the room was dark and cool and smelled nice, and the bathroom was beautiful and immaculate. Also, they let me check out late when I explained about the migraine situation.
The worst place I've puked was in a port-a-potty in Austin, Tx, but maybe it's not fair to include that because it was from food poisoning, not migraine. Worst place I've puked from migraine was probably a roadside in Louisiana. That or a rest stop in Louisiana. It's a toss up. Nothing against Louisiana, however. I have a great affection for the state otherwise. That Napoleonic Code rocks!
Oh, and I puked on a sidewalk in Washington D.C. A lady looked at me like I had the plague, but I suppose that's to be expected when one vomits on the sidewalk. Funny thing about that was, I felt like upchuck was imminent, so I crouched down, but nothing came up, so I stood again. I took two steps and water just started shooting out my mouth. That was actually one of the more pleasant vomiting experiences I've had, because I'd been drinking a ton of water. Water (in large amounts) is the easiest thing to puke, followed by vanilla ice cream or milkshake. Lentil soup is awful to barf up, as are jalapenos. Oddly, cranberry juice makes for an unpleasant puking experience. Really, most foods are significantly worse coming up than going down.
I puked in a park near my house (same trip at the Louisiana rest stop barf break -- tried to make it home to the privacy of my own toilet, but no dice).
I puked at a Texas truck stop -- fortunately it was a fairly nice, new, clean truck stop, so it wasn't so bad.
Puking and travel seem to go hand in hand, and I think I know why that is -- I've noticed activity and exposure to light tend to increase nausea, so if I have a migraine while I'm traveling, I'm a lot more likely to be in situations where I'm forced to be up and around and out in the harsh light of day.
There are actually a couple of good things about puking during a migraine. For one, it breaks up the monotony a little. When you're lying in bed and you keep looking at the clock and every minute feels like 10, taking a puke break eats up some time, and changes the scenery a bit. Also, it is tiring so sometimes I can fall asleep for a little while after a good puke, which also passes the time painlessly. Other than that, there's really not much to be said for it.
Tuesday, January 24, 2012
The intrusive medical implant experiment, part I
Even after nearly eight years of dealing with this problem, there are still times -- usually when the pain is getting ready to show me who's boss -- that I find myself kind of surprised by it. Maybe surprised isn't exactly the right word. It's like I'm thinking, 'when did my life get like this?'
I suppose what I mean is that I don't understand. Migraine is such a game changer. What am I trying to say? God, I don't know. I took a hydrocodon a couple of hours ago and it's just starting to kick in. Maybe not the best time to try to blog. I was mindlessly watching TV and my cat came in and seemed to be trying to tell me something. I'd sort of been feeling like an impending migraine and strong narcotics were no excuse for sitting around like a vegetable, so I got up and came into my room. This seemed like about the most productive thing I could manage, so here I am.
Kitty has settled down, so I guess she agrees.
So what I've been thinking is about what I STILL haven't written about.
Let me start from the beginning.
About a year and a half ago, I was going through a fairly bad spell with frequent, intense and long lasting migraines disrupting my life on a fairly regular basis. The Maxalt seemed to be waning in effectiveness, and feeling desperate, I started researching narcotic pain killers.
The very first article I read was on a science website and it was about a study suggesting that the use of narcotic medication was correlated with chronic migraine. Well duh. But even still, it gave me pause. I've had trepidations about strong painkillers for a long time. Pain killers plus a chronic condition pretty much seem like a recipe for addiction -- and addiction scares me.
The trouble is, the pain scares me worse.
Anyway, on the very same page as this scary study was an ad for a company called Ascendant Neuro and it promised relief from debilitating migraine. So I clicked on it and started reading.
The treatment consisted of an implanted devise called a neuro-stimulator. There were testimonials and the site said the device had gone through medical trials and was found to be effective for about 90 percent of patients in relieving migraine. It also said the treatment was often covered by insurance -- a not inconsiderable inducement to look into it further. I figure if insurance covers it, it can't be too out there -- you know how health insurance companies are about anything "alternative."
Anyway, it said on the site that prospective patients had to attend a seminar and that there was one scheduled in Houston in about two months. So I signed up. What did I have to lose?
I went and a doctor, Dr. Jack Chapman, got up and explained the treatment and various details. He said a small battery powered device was implanted in the patient's buttock and wires went under the skin along the spine, branching out to four leads, two of which were connected to the occipital nerves (in the back of the head) and the other two to nerves at the front of the forehead -- maybe the supraorbital nerve? I don't remember exactly. He said there were no side effects to speak of and it had a high success rate. I remember one man who was there with his wife asking skeptical questions, and I knew he was right to do so -- but I also knew I wanted very, very badly to believe this could give me my life back.
There were videotaped testimonials as well, and these were persuasive.
I filled out a form with my medical history and all the treatments I'd tried for my migraines (it filled up a lot of the page!) and I went up and spoke with him afterward. He said I sounded like a good candidate. He seemed very warm and compassionate. I felt good about it.
I signed up.
It took several months to get all my medical records together, go through the evaluation and get approved by health insurance. And that was just for the first step -- a trial run. The trial run was a surgical procedure in which incisions were made in the scalp and the leads were inserted and attached with tape. I was given a hand held device that attached to the leads (which were very bulky and intrusive)with a number of different programs.
I had it for about a week. What am I saying? It was exactly a week. During that week, the results weren't exactly dramatic. I didn't have a bad migraine, and there were two occasions when I felt one might be coming on. But, I couldn't say conclusively whether the headache really would have developed. It seemed likely, as it was during the phase of my cycle when I was most prone to attack. On one of the occasions, the headache went away before getting really bad, and on the other, it got bad enough that I went to bed early (about 7 p.m.) and seemed like the type to set in and hang around for a couple, miserable days.
But when I woke in the morning, it had passed. I took this as a good sign, though hardly proof positive. So I was on the fence, a little. But I didn't have to decide right away. After the trial, they had to apply once again for insurance approval for the real deal, and that was expected to take at least a couple of weeks. They asked me if I wanted to talk to another patient who had the device and I said Hell yeah!
They gave me a number of a woman about my age in the Dallas area who had had hers about six months. I called and asked her questions and she told me about her experiences, which (of course) were good. I mean, it's not like they would hook me up with someone who had a bad experience, would they?
I think the thing I most wanted to know was whether the permanent device worked better than the trial had. She said yes, definitely.
I finally decided to go ahead with it.
But the day of the surgery (no surprise here I guess) I had cold feet. I was afraid and I strongly felt like I shouldn't be doing this. But I had come this far and had waited so long. It had been six months since the seminar -- eight months since I had first seen the ad. Anyway, I told myself it was normal to be nervous and I steeled myself to go through with it.
I'm getting tired and feeling a little nauseated from the pain killer.
Consider this chapter one of this particular adventure in medical treatment. Suffice it to say, after five days in a row of taking prescription medication to avert a migraine, I'm not feeling incredibly great about the success of this device, which I've had now for seven months.
More to come... stay tuned, bat fans.
I suppose what I mean is that I don't understand. Migraine is such a game changer. What am I trying to say? God, I don't know. I took a hydrocodon a couple of hours ago and it's just starting to kick in. Maybe not the best time to try to blog. I was mindlessly watching TV and my cat came in and seemed to be trying to tell me something. I'd sort of been feeling like an impending migraine and strong narcotics were no excuse for sitting around like a vegetable, so I got up and came into my room. This seemed like about the most productive thing I could manage, so here I am.
Kitty has settled down, so I guess she agrees.
So what I've been thinking is about what I STILL haven't written about.
Let me start from the beginning.
About a year and a half ago, I was going through a fairly bad spell with frequent, intense and long lasting migraines disrupting my life on a fairly regular basis. The Maxalt seemed to be waning in effectiveness, and feeling desperate, I started researching narcotic pain killers.
The very first article I read was on a science website and it was about a study suggesting that the use of narcotic medication was correlated with chronic migraine. Well duh. But even still, it gave me pause. I've had trepidations about strong painkillers for a long time. Pain killers plus a chronic condition pretty much seem like a recipe for addiction -- and addiction scares me.
The trouble is, the pain scares me worse.
Anyway, on the very same page as this scary study was an ad for a company called Ascendant Neuro and it promised relief from debilitating migraine. So I clicked on it and started reading.
The treatment consisted of an implanted devise called a neuro-stimulator. There were testimonials and the site said the device had gone through medical trials and was found to be effective for about 90 percent of patients in relieving migraine. It also said the treatment was often covered by insurance -- a not inconsiderable inducement to look into it further. I figure if insurance covers it, it can't be too out there -- you know how health insurance companies are about anything "alternative."
Anyway, it said on the site that prospective patients had to attend a seminar and that there was one scheduled in Houston in about two months. So I signed up. What did I have to lose?
I went and a doctor, Dr. Jack Chapman, got up and explained the treatment and various details. He said a small battery powered device was implanted in the patient's buttock and wires went under the skin along the spine, branching out to four leads, two of which were connected to the occipital nerves (in the back of the head) and the other two to nerves at the front of the forehead -- maybe the supraorbital nerve? I don't remember exactly. He said there were no side effects to speak of and it had a high success rate. I remember one man who was there with his wife asking skeptical questions, and I knew he was right to do so -- but I also knew I wanted very, very badly to believe this could give me my life back.
There were videotaped testimonials as well, and these were persuasive.
I filled out a form with my medical history and all the treatments I'd tried for my migraines (it filled up a lot of the page!) and I went up and spoke with him afterward. He said I sounded like a good candidate. He seemed very warm and compassionate. I felt good about it.
I signed up.
It took several months to get all my medical records together, go through the evaluation and get approved by health insurance. And that was just for the first step -- a trial run. The trial run was a surgical procedure in which incisions were made in the scalp and the leads were inserted and attached with tape. I was given a hand held device that attached to the leads (which were very bulky and intrusive)with a number of different programs.
I had it for about a week. What am I saying? It was exactly a week. During that week, the results weren't exactly dramatic. I didn't have a bad migraine, and there were two occasions when I felt one might be coming on. But, I couldn't say conclusively whether the headache really would have developed. It seemed likely, as it was during the phase of my cycle when I was most prone to attack. On one of the occasions, the headache went away before getting really bad, and on the other, it got bad enough that I went to bed early (about 7 p.m.) and seemed like the type to set in and hang around for a couple, miserable days.
But when I woke in the morning, it had passed. I took this as a good sign, though hardly proof positive. So I was on the fence, a little. But I didn't have to decide right away. After the trial, they had to apply once again for insurance approval for the real deal, and that was expected to take at least a couple of weeks. They asked me if I wanted to talk to another patient who had the device and I said Hell yeah!
They gave me a number of a woman about my age in the Dallas area who had had hers about six months. I called and asked her questions and she told me about her experiences, which (of course) were good. I mean, it's not like they would hook me up with someone who had a bad experience, would they?
I think the thing I most wanted to know was whether the permanent device worked better than the trial had. She said yes, definitely.
I finally decided to go ahead with it.
But the day of the surgery (no surprise here I guess) I had cold feet. I was afraid and I strongly felt like I shouldn't be doing this. But I had come this far and had waited so long. It had been six months since the seminar -- eight months since I had first seen the ad. Anyway, I told myself it was normal to be nervous and I steeled myself to go through with it.
I'm getting tired and feeling a little nauseated from the pain killer.
Consider this chapter one of this particular adventure in medical treatment. Suffice it to say, after five days in a row of taking prescription medication to avert a migraine, I'm not feeling incredibly great about the success of this device, which I've had now for seven months.
More to come... stay tuned, bat fans.
Wednesday, December 28, 2011
P.S.
The only trouble with the wonderful giddiness of migraine recovery is I usually have difficulty falling asleep the first night. Not sure if it's some weird serotonin glitch leftover from the attack or just that I'm so high on life I can't come down...
Not that I'm complaining, mind you.
Just sayin'
Not that I'm complaining, mind you.
Just sayin'
ambiguous blessings
Cold apple juice tastes like nectar at the end of a 48 hour attack.
The only emotion stronger than the absolute terror of the (inevitable) next attack is the utter joy of not being in pain. Of being free to walk around, talk to people, eat, go online, do the 1,001 things that add up to so little, but mean so much.
I haven't been here in a while.
Unfortunately, it isn't because I've found a cure, or maybe just gotten through this long, painful season of migraine.
I could speculate about why, but who really cares?
It was the taste of that apple juice last night, drunk standing in the light of the open refrigerator door, that inspired this. I've seldom tasted anything so perfect.
But does it make the hours of immobilizing pain, nausea and vomiting somehow worthwhile? Oh Hell No.
But -- I guess it's something.
Today when I got to work I was still in recovery mode. I think it's more the dehydration and the fact of not having eaten anything for a couple of days than any lingering effects of the tumult in my head -- but my head did feel slightly odd.
The best way I can describe it was it felt borrowed -- like an unfamiliar car I'm slightly nervous about driving.
I don't know what else to say.
In between the last time I posted here and now, I've read Andrew Levy's migraine memoir, "A Brain Wider Than the Sky."
I had every intention of reviewing it here, as none of the reviews on Amazon quite expressed my feelings about the book. Some liked it and identified it ("Oh my God I have migraines too and it was so great to find someone who understands!") some objected to the flowery language and others were disappointed because they didn't find any new remedies between its covers.
The flowery language didn't bother me (mostly) and a lot of the historical stuff was pretty interesting, but I found the book increasingly difficult to keep reading.
I felt challenged to, oh, I don't know, accept my migraines find some higher meaning or purpose to them, go out and write a heartbreaking work of staggering genius (sorry Dave Eggers) -- and it was hard.
As it to do much of anything when under siege of the big M.
I mostly just hate and fear them, it, whatever.
What I was thinking this time was how much it felt like being held hostage. Held hostage by something that hated me.
I remember, in a half asleep state, suddenly thinking that the problem was this body -- get rid of the body and I'd be fine! That seemed like a brilliant solution in my half dreaming daze. The idea has merit, as anyone who suffers migraines could attest.
I like the way Joan Didion puts it best: "That no one dies of migraine is, to someone in the midst of an attack, an ambiguous blessing." That might not be the exact wording, but I know it's close.
But then, also, given the way I twist and dodge to avoid them, with whatever arsenal of drugs and other devices (more about that later... oh soooo much more)its arrival felt like -- like some profound, implacable fact that I continue to avoid.
Levy said mysterious and cryptic things to the effect of migraine being somehow intentional, being a messenger of some sort -- of being purposeful.
Well, lets just say I took all that with a grain of salt. Having frequent, severe migraine can make you a little goofy. Toward the end of this last bout I remember thinking that I would lose my sanity if it went on another day. I also recall thinking that I was probably being dramatic, but seriously, the severity and duration of the pain... it's hard to imagine not being on some level fundamentally altered by it.
But -- as I was saying, I did start to wonder if there were some psychic source of this hideous malady. If I were indeed somehow bringing it on myself by my actions or lack thereof. If it did indeed have some agenda, something to teach me.
If so, couldn't it just send an email?
The only emotion stronger than the absolute terror of the (inevitable) next attack is the utter joy of not being in pain. Of being free to walk around, talk to people, eat, go online, do the 1,001 things that add up to so little, but mean so much.
I haven't been here in a while.
Unfortunately, it isn't because I've found a cure, or maybe just gotten through this long, painful season of migraine.
I could speculate about why, but who really cares?
It was the taste of that apple juice last night, drunk standing in the light of the open refrigerator door, that inspired this. I've seldom tasted anything so perfect.
But does it make the hours of immobilizing pain, nausea and vomiting somehow worthwhile? Oh Hell No.
But -- I guess it's something.
Today when I got to work I was still in recovery mode. I think it's more the dehydration and the fact of not having eaten anything for a couple of days than any lingering effects of the tumult in my head -- but my head did feel slightly odd.
The best way I can describe it was it felt borrowed -- like an unfamiliar car I'm slightly nervous about driving.
I don't know what else to say.
In between the last time I posted here and now, I've read Andrew Levy's migraine memoir, "A Brain Wider Than the Sky."
I had every intention of reviewing it here, as none of the reviews on Amazon quite expressed my feelings about the book. Some liked it and identified it ("Oh my God I have migraines too and it was so great to find someone who understands!") some objected to the flowery language and others were disappointed because they didn't find any new remedies between its covers.
The flowery language didn't bother me (mostly) and a lot of the historical stuff was pretty interesting, but I found the book increasingly difficult to keep reading.
I felt challenged to, oh, I don't know, accept my migraines find some higher meaning or purpose to them, go out and write a heartbreaking work of staggering genius (sorry Dave Eggers) -- and it was hard.
As it to do much of anything when under siege of the big M.
I mostly just hate and fear them, it, whatever.
What I was thinking this time was how much it felt like being held hostage. Held hostage by something that hated me.
I remember, in a half asleep state, suddenly thinking that the problem was this body -- get rid of the body and I'd be fine! That seemed like a brilliant solution in my half dreaming daze. The idea has merit, as anyone who suffers migraines could attest.
I like the way Joan Didion puts it best: "That no one dies of migraine is, to someone in the midst of an attack, an ambiguous blessing." That might not be the exact wording, but I know it's close.
But then, also, given the way I twist and dodge to avoid them, with whatever arsenal of drugs and other devices (more about that later... oh soooo much more)its arrival felt like -- like some profound, implacable fact that I continue to avoid.
Levy said mysterious and cryptic things to the effect of migraine being somehow intentional, being a messenger of some sort -- of being purposeful.
Well, lets just say I took all that with a grain of salt. Having frequent, severe migraine can make you a little goofy. Toward the end of this last bout I remember thinking that I would lose my sanity if it went on another day. I also recall thinking that I was probably being dramatic, but seriously, the severity and duration of the pain... it's hard to imagine not being on some level fundamentally altered by it.
But -- as I was saying, I did start to wonder if there were some psychic source of this hideous malady. If I were indeed somehow bringing it on myself by my actions or lack thereof. If it did indeed have some agenda, something to teach me.
If so, couldn't it just send an email?
Wednesday, March 2, 2011
Weird new pains
Well, sadly, the beneficial effects of the CoQ10 seem to be ebbing -- as everything else that ever helped seems to have done eventually. I got two-three good months out of it, so I guess that's something. Also, I'm not sure if it helped with my chronic low-grade depression or if that came about because of the relief from pain...
Anyway, today has been, well, not terrible, but just kind of trying.
I had a fun assignment out at a wildlife refuge for most of the morning, but the whole time had the nagging throb of a threatening headache that skimmed a bit of the fun off the surface.
By the time I got back to the office, the signs were unmistakable and it was time to take maxalt. I got it out of my purse and held the packet in my hand, sat there looking at it and thinking about how much I hated the way it made me feel and set it down on my desk. I thought, "well, maybe nothing much will come of it, and if it does, I'll just call in sick tomorrow if I have to. I still have one sick day left to get me through to April 1, when the clock starts again on sick time (yeah, I know, that's a strange timetable for sick time -- too complicated to explain).
But it kept intensifying and thinking about how much worse a full blown migraine feels than the unpleasant side effects of triptan drugs finally persuaded me to just take the damn thing. I did, but when it hadn't had much effect in an hour, I started to think maybe I'd waited too long and braced myself for the onslaught.
It never quite came. I went home and laid on my bed for a while and felt things shifting about inside my skull. Couldn't tell quite what direction things were headed. Now, a couple hours later, I'm feeling the sensations of the maxalt starting to work -- but there's something slightly worrisome: I'm feeling this weird pain at the back of my head, starting near the top and kind of branching down the sides. Not sure what that is and it's something new.
Anyway, it's disappointing about the coQ10 -- I really hoped that might be of some lasting benefit, but I'm back in one of those phases where I've been fighting a headache for about the past 10 days and I start getting worn out with it and worrying about how much worse things might get. I hate myself for all my worrying. It doesn't help anything, and in fact probably makes it worse.
As I said, I'm looking into another option, but I haven't had a chance to get around to making an entry about it here. I will, I promise. But in the meantime, here's a link to a news story about it:
http://www.mlive.com/living/kalamazoo/index.ssf/2009/10/nerve-stimulation_implants_eas.html
Anyway, it seems a little extreme, but I can't say as I really feel that great about taking triptans 10-15 times a month. The literature that comes with the prescriptions says something about an increased risk of stroke, which is something that concerns me.
Soooo... I will try to get to that post about neurostimulation soon, I promise, oh my vast audience of avid followers!
Anyway, today has been, well, not terrible, but just kind of trying.
I had a fun assignment out at a wildlife refuge for most of the morning, but the whole time had the nagging throb of a threatening headache that skimmed a bit of the fun off the surface.
By the time I got back to the office, the signs were unmistakable and it was time to take maxalt. I got it out of my purse and held the packet in my hand, sat there looking at it and thinking about how much I hated the way it made me feel and set it down on my desk. I thought, "well, maybe nothing much will come of it, and if it does, I'll just call in sick tomorrow if I have to. I still have one sick day left to get me through to April 1, when the clock starts again on sick time (yeah, I know, that's a strange timetable for sick time -- too complicated to explain).
But it kept intensifying and thinking about how much worse a full blown migraine feels than the unpleasant side effects of triptan drugs finally persuaded me to just take the damn thing. I did, but when it hadn't had much effect in an hour, I started to think maybe I'd waited too long and braced myself for the onslaught.
It never quite came. I went home and laid on my bed for a while and felt things shifting about inside my skull. Couldn't tell quite what direction things were headed. Now, a couple hours later, I'm feeling the sensations of the maxalt starting to work -- but there's something slightly worrisome: I'm feeling this weird pain at the back of my head, starting near the top and kind of branching down the sides. Not sure what that is and it's something new.
Anyway, it's disappointing about the coQ10 -- I really hoped that might be of some lasting benefit, but I'm back in one of those phases where I've been fighting a headache for about the past 10 days and I start getting worn out with it and worrying about how much worse things might get. I hate myself for all my worrying. It doesn't help anything, and in fact probably makes it worse.
As I said, I'm looking into another option, but I haven't had a chance to get around to making an entry about it here. I will, I promise. But in the meantime, here's a link to a news story about it:
http://www.mlive.com/living/kalamazoo/index.ssf/2009/10/nerve-stimulation_implants_eas.html
Anyway, it seems a little extreme, but I can't say as I really feel that great about taking triptans 10-15 times a month. The literature that comes with the prescriptions says something about an increased risk of stroke, which is something that concerns me.
Soooo... I will try to get to that post about neurostimulation soon, I promise, oh my vast audience of avid followers!
Subscribe to:
Posts (Atom)