A Migraine Poem with a Long Intro

It's 12:29 PM. I just got up. No, I wasn't up late last night and no I am not depressed.

I felt a slight "tinge" yesterday while in the car going to the doctor for a TB shot to update my vaccination. There it was again around dinner time. Again before bed. I should have known better.

Not all the hints and feints are precursors of the real thing. You don't want to waste your medicine, which taken in time, can be quite effective.

I didn't take it in time.

I know people who suffer from claustrophobia, or anxiety with a claustrophobia component. They tend often to be thinking, "Now how do I get out of this place if I need to." Even the prospect of being stuck with no escape creates anxiety. It's a little bit like that with migraine. You're always thinking, 'What will I do if one hits? Is there a place to go? How far am I from a dark room and a bed , or a tent, or some private place to be horizontal?" Ah, a tinge of nausea, a small little throb behind the eye - "is it going to be a migraine? Should I take medicine?" This is the migraine life .

Mine woke me up around 5:30 this morning. I am not sure if it was the nausea or the pain. The race to wrest control my brain had gotten started in earnest while I slept, while I was not paying attention. The bad guys had won.

As I write I wonder: is this too private? Should I say anything? If it were you, would you? When such a thing so impacts your life and renders whole days useless and sends you alone into a world so dark and unbearable, would you talk about it? I blog about other things. Is this off limits? Is it too trivial compared to the truly terrible human suffering in the world?

I don't know the answer.

It is hard to describe acute severe migraine. I liken it to a cloud of darkness descending, and oh what a painful darkness! You want to cry, or cry out, but it doesn't help. You lie totally still. Or you writhe. You cover your eyes from light and your ears from sound and your nose from smells. You wrap yourself into a cocoon alone and try to remember that this darkness will in time pass. You pray. Inwardly you are screaming. You feel like "The Scream" looks, but the hell isn't the sorrow of the world it's the dark throbbing in your own head.

Dark and bleak and and horrific as it is inside the cocoon, it's better inside than outside. The few yards to the bathroom seem like a WWI no man's land. Bad things are out there, things you don't want to write about. You crawl, you run, you walk very very slowly - choose your method. You get there just in time.

Nausea is terrible in the best of circumstances. I hate it. I used to get sick every year at the state fair after rides that went in circles. I always thought "it won't happen THIS time," and it always did. No nausea is fun. I've never had morning sickness. I hear it is particularly terrible.

You make it to the bathroom. Sometimes as if to play a joke, the nausea abates. Just sometimes.

Usually it's all you can do to get the lid open. Once it starts you have no control. The muscles in the abdomen squeeze like a boa constrictor. Masses of air shoot through your vocal chords. You make noises to make anyone think you're dying or worse. You hope the windows are closed. The heaves roll one after another like waves. Two, five ten, twenty, you never know.

There are no satisfying chunks of anything because the stomach is empty. Just acid and slime and sometimes a little blood. You look in the bowl and thing, "Damn, all that work for nothing." Well, I look, and I think that anyway, even after thirty years of knowing better.

There are no words to describe what is happening inside your head during this time. You worry. Migraine sufferers are more likely to have stroke, and the pressure during a round of nausea is immense. It's kind of like when you keep you mouth closed and exert all the energy you can muster to blow air out, and your face gets all red and swollen looking. It's sort of like that, like an explosion in your head - with grapeshot added for good luck.

After it's over, the pain subsides, the breathing slows down, and you lie down on the bathroom floor. A short lived peace comes over you. It does not last long but you'll take it. Your throat feels like you swallowed a bottle of HCl, well, because you did, sort of. There will be more. Sometimes I go to the kitchen to drink milk to counter the acid, and to make the next round a little easier on the throat.

It creeps back swiftly. "Swiftly" and "creeps" don't seem to go together. I think of Gollum.

By this time drugs are useless. The triptan medicines are vastly more effective when the migraine is caught early. But I take a Maxalt melt anyway. I would take anything within reach, legal, illegal, good for me, bad for me. The typical migraine answer to "Can I bring you anything" is "Yes, a loaded gun." It's a joke. Kind of.

Back and forth - every 45 minutes to an hour - the same thing again and again. You never know if you've just been through the last round or not. At some point you're so exhausted you fall asleep, and the nausea does not return. You've still got the headache to deal with, but it starts to abate. With the sleep comes some relief. You wake up. The black mist has crawled out of your brain to come back another day.

Three five, eight, eleven hours of your life gone. But you're alive. And until the next one hits you feel perfectly normal. Well, I do. Some people have these things for days. I don't know how they do it.

Migraine brains are hyper sensitive. By that I don't mean in the way that a person is "sensitive" as in easily offended. Migraine brains are sensitive in that they do not respond well to biochemical changes. These changes may be brought about by changes in barometric pressure, certain smells, changes in sleep or eating pattern (too much or too little), bright lights, loud noises, hitting your head, too much exercise, or certain foods like chocolate or red wine. It could be one of a thousand things. Nobody knows why or how such a diverse array of "triggers" can cause the same symptoms of expanding (and contracting) blood vessels in the brain, which then bear upon nerves the way they do.

The reason I bother writing this is to help you love and understand the people in your life who suffer from this debilitating illness. Take it seriously. They're not faking, exaggerating, or lazy. And they don't have the words for how they feel. It's usually worse than they describe.

I started writing this today because I had a TB shot yesterday and when my six hours of hell ended I was curious about whether TB shots have migraine as side effects. They don't. But in the process of looking it up I stumbled across a web site devoted to the subject of migraine, and which had had a migraine poetry contest. Some of them are really quite good. Poetry has a superior way of speaking as compared to prosaic stuff like I write. Read a few of the poems. And if you have a loved one who suffers from migraine share it with them - ask them if that's what it's like. they will probably say yes.

I liked this one:

Mystery of Misery

by Betsy Blondin

after all these painful seconds, minutes, hours, days

of desperately searching to discover your secret

all these weeks, months, years

of steadfastly seeking the key to you

to open you wide for me to understand, for all to see

your hideousness, unbearable pain, sickness and grief

that drive me to darkness

all the minutes, hours, and days of my life

you have stolen, for nothing

while I tried to pierce your heart with needles

destroy your soul with potions and pills

follow the firing neurons, blood vessels, chemical stew

that create you

I stop struggling, experimenting, hating

and instead surrender, accept, live around you the best I can

do what I can when I can

until you attack again with fresh fury, leave a new clue

or I read of more brain science, studies, promising treatments

and wearily, grudgingly, resentfully reach for my sleuthing tools

to begin again my Sisyphean challenge

of solving you

my mystery of misery

A Medical Morality Tale

The six weeks leading up to my mother's death on February 27, 2001, were perhaps the most difficult of my life. I had the deep blessing and privilege of reconnecting with my mother in a new and deep way, and then she was taken. I have not talked very much about the circumstances of her death, but I think it is time to put the record out there. The purpose of this is not to bring grief to anyone, but to encourage everyone to be vigorous and proactive when dealing with members of the medical profession, particularly surgeons. The qualities needed to make them good surgeons are not those which make them easy to talk to.

After mom died, for the sake of my family, I wrote a letter to the doctors laying out the questions we had. I never sent it. They would not have answered them no mater how many wavers I signed agreeing not to sue were they to admit to anything. But here it is, the story of mom's demise in the form of a letter to her doctors:

(I've added a paragraph at the end as a response to Mary Johnson's wise comment)

Dear Doctors,

My name is Joel Gillespie. My mother. Mrs. Maurine Gillespie, was a patient of yours. As you know she passed away on Tuesday February 27, 2001, while under your care.

On behalf of myself and my three siblings, I want to express my gratitude for the care extended to my mom by all of her doctors and nurses during this terrible ordeal. We know that everyone tried very hard to get my mom through her ordeal, and that you are saddened by her death, as we are.

On our side, four adult children have lost a dear mother, and eleven grandchildren a dear grandmother. As we go through the process of grieving our mother’s loss, we find that that grieving process is somewhat hindered by the questions that accumulated along the way. It was often hard to have time to see and talk doctors, and have concerns and questions addressed. Some of these questions just sort of hang there without resolution, and this makes it harder to move on.

As we deal with our own grief and look to a future without our mother and our children’s grandmother, it would be most helpful for us to have as much understanding as possible about the course of events which led to her death. These questions may well point to our own medical ignorance. We simply don’t have adequate grasp of some of the anatomical issues and physiological processes and treatment realities involved. Some of our questions have to do with simply wishing to understand better how one thing led causally to another. Other questions have to do with why certain treatment decisions were made, and whether certain events could have been foreseen. Finally, some questions have to do with whether risks were adequately outlined prior to her surgery.

We would like to would request an audience with the various physicians who attended to our mother during her last weeks of life and have them answer for us as many of these questions as they could. This would be advantageous to our moving forward. We will be in touch regarding setting up such a meeting. Perhaps it would be good to meet with Dr. Orlandini, her primary cardiologist, Dr. Beard who preformed the ablation, and one member of the surgery team who worked with my mom, perhaps Dr. Sutton Jr. who met with my mom before the surgery.

In order that you might have opportunity to remember the details, and in order for such a meeting to be as fruitful as possible, I am going to try my best to articulate the questions as they stand as of this writing. I will try to write these out as straightforwardly as I can, and of course you must forgive any medical naivete which may reveal itself as I go along. I am writing rather clinically and ask you not to read tone or anything into the questions. There is no tone intended at any point.

Our first question has to do with the decision to take my mother off the medications prior to the ablation procedure. We understand that she needed to be symptomatic in order for this procedure to be successful. However, in going off the medications several days before the procedure, my mom was left in a very vulnerable state. He tachycardia intensified to the point that she was admitted to the hospital with a pulse in excess of 200 and a dangerously reduced blood pressure. Her lungs had significant fluid build up. The emergency room doctor noted that she was in failure. She likely had been in this state for some time. In our judgment she should have been more closely monitored during this period of time. Could such an extended period of time with such elevated heart rate so stressed her heart and heart valves that it contributed to her mitral valve failure?

In the ablation procedure the doctor identified two primary “bad” pathways. One of these was close to the “good” sinus node pathway. Our understanding is that in trying to knock out the bad pathway the good pathway was impacted, which ultimately led to the necessity of getting a pacemaker. In other words, he missed. Is it normal to try to take out a bad pathway so near to good pathway?

The process of getting her pacemaker to work properly was quite frustrating for my mom and for us. The pacemaker could not be made to stick. It kept coming unhooked from her heart tissue and then just dangling inside her heart, causing her heart to beat in all kinds of irregular ways. t would help us to understand better what sorts of things can contribute to such difficulty, and whether any of this could have been related to her subsequent mitral valve problem. In particular, could problems such as perhaps improperly coordinated contractions of her atriums and ventricles have contributed to her mitral valve failure?

At one point one of the nurses made comment about something “funky” having gone during the pacemaker procedure. We are curious as to what this might have been.

It seems probable now, after the fact, that the problem with getting the pacemaker leads to “stick” had to do with the friability of her heart muscle tissue, a friability caused undoubtedly by her long term use of prednisone for her late onset asthma. It was, in the end, this tissue friability that killed her, and which we believe should have been predicted. Perhaps the pacemaker problems in addition to the fact of her long term use of prednisone should have caused increased concern about her surgical risk after the mitral valve blew out.

One thing that has concerned us as well is the fact that there was knowledge of a “murmur” of some kind noted in the primary cardiologist’s records both in July and December. My mom had no history of heart murmur or of mitral valve problems. Should not this murmur have been checked out earlier through ultrasound? Could it have been early signs of valve trouble and could this have impacted the decision to proceed with the ablation? Did Dr. Beard know about this murmur?

After the catherization procedure revealed the blockages and confirmed the ultrasound’s finding regarding her mitral valve, it was explained by the surgeon that my mom indicated for valve replacement and bypass surgery. Risks were outlined to her as 8-10%, with the usual risks of stroke and heart attack (etc.) mentioned. Because of her history of asthma and prolonged use of prednisone the issues both of her lung capacity and problems with tissue healing were discussed, which also imposed risk as to her recovery, risks which were also rated at 8%. Her decision to have the surgery was difficult and calculated based on the information she received from the doctors prior to surgery.

After my mother managed to get through the bypass/valve replacement surgery and off the heart lung machine, the surgeon commented that when he got into her heart he found that its anatomy was very unusual, that the walls of the heart were thickened and that there were fatty deposits like little tumors in the heart, and that as a result it had been quite hard to get the tissue valve seated. Because of the time spent attempting to place the tissue valve, and then the additional time spent putting in the mechanical valve, she was then on the heart/lung machine much longer than was good, which had terrible consequences for her eventual recovery, particularly the four days spent on the respirator due to having to wait three days to close up her chest.

Prior to her open heart surgery, my mom had an ultrasound taken in the emergency room (which I refer to below as the “external” ultrasound). This ultrasound showed evidence of valve problems. The catherization procedure undergone the next day also showed evidence of such mitril valve problems in addition to coronary artery blockages. In addition, in the period of time after diagnosis of these problems and the actual surgery, she had on at least one occasion, perhaps two, taken the test whereby she swallowed the ultrasound camera which then enabled the doctors to see the back side of her heart. I refer to this as the internal ultrasound. She may have had another external ultrasound done as well.. Were not the external and internal ultrasounds intended to enable the surgeons to see her heart more clearly, and would not they have enabled them to understand her heart’s “unusual” anatomy. Could they enabled the doctors to make a different call regarding the decision to go with the tissue as opposed to the mechanical valve? Would they have enabled the doctors to mention the possibility of the valve not fitting right is as one of the surgical risks and challenges, which again could have impacted the decision to have the surgery?

During the surgery, when the surgeon came out to inform the family that my mother would most likely not make it through, he spoke of the reason as being primarily the friability of her tissue which caused problems in suturing. he acted as if it would have been a miracle for anyone in her condition, given her tissue friability, to have survived a surgery of this kind, even though he had said her surgery risk factor was 8 %.

Again, our question is whether this issue of friability could have been anticipated given her long history of the use of prednisone? And if so, in laying out risks of surgery should the surgeon have mentioned to my mom and to us the possible problem of tissue friability? It never came up prior to the surgery and in discussion of risks. This is the single biggest concern we have.

Although her life would have been more limited and less active had she not had the surgery, and though in time her coronary artery likely would have closed off and she would have died of a heart attack, my mom’s week in the hospital prior to surgery proved that she could live with the valve reflux if properly monitored and if given appropriate medications. Had the surgeon mentioned the risk of suturing given a likelihood of tissue friability due to use of prednisone the decision to proceed with the surgery could have likely have been very different.

The evening before my mom died the nurses had put her on the c-pap machine to help her breathe. According to what the nurses later told us they had to take my mom right off the c-pap because her blood pressure dropped quickly. We do not understand what the relationship is between her being on the c-pap and her blood pressure dropping. How does the c-pap cause one’s blood pressure to drop? Does being on the c-pap impact or stress the heart in some way?

When we last say my mom at 12:00pm on Tuesday the day of her death, the nurse mentioned that they were intending to put her back on the c-pap machine after we left. Was this done and could this have been causally related to her blood pressure dropping as it did prior to her heart stopping?

After my mom died the doctor explained to us that her heart had just stopped. But it had been explained to us already by the nurse that her blood pressure had dropped, setting off the alarms, but her heart continued to beat and that she had continued to breathe, and that attempts were made to reverse or correct her blood pressure drop, and that only subsequently did her heart actually stop.

It seems to us that some event caused her blood pressure to drop as it did. Either something caused her heart to stop beating effectively (a bypass graft coming undone, the valve misfunctioning, her coronary arteries getting blocked, etc.) or something caused her to lose blood internally, such as a hemorrhage.

As far as you can know what caused her heart to stop beating effectively, and is there an identifiable cause of that, such as being put on the c-pap machine?

(Added after Mary Johnson's wise comment...If my memory serves me correctly we decided within a very short time not to pursue any sort of lawsuit. Yes, mistakes were made, but my mother also made enough mistakes in her own self care for us to blame her demise on anyone else. I think I learned three things. First, doctors, particularly surgeons, tend to be overly optimistic about what they can pull off. That can lead to unwise care decisions. Second, once you're in the hospital it is almost impossible to have a good substantial talk with a doctor (this has been verified for me as a pastor a hundreds over as I have sat with anxious families). Third, after anything goes awry, doctors are so scared of lawsuits they do not want to talk. It would allow wonderful closure for a family if a doctor could say "I'm sorry, my hand slipped and I nicked the artery" or whatever. But they can't admit to anything because of malpractice suits breathing down their necks all the time. This helps nobody. I carry no grudge about the medical care, and cherish the memory of my mother. Nor do I really await any answers. I stumbled across this and thought, well, I wrote it, I may as well publish it somewhere . Maybe someone will benefit from it. I don't know, maybe not.)