Sarah, a 20-year-old student at Brigham Young University—Idaho, shared this essay she wrote about living with chronic migraine for her English class.
Pain in My Brain
By Sarah Smith
I bury my head into my pillow trying to apply pressure to my skull. I pull up the covers to block out any light and hopefully to muffle any sound. I lay there motionless. My head throbs, pulsating, feeling as if at any moment it may explode. Dizziness sets in, and I continue to not move; maybe it’ll go away. I start to feel nauseous. I lay there with nothing but this pain and my thoughts: “How long will this last? Why can’t things just be normal?”
I have suffered from chronic migraine since I was five years old. Growing up, doctors would tell me that, “Your migraines will probably go away when you have menopause.” This was not very reassuring to hear. When I reached the age of 14, I started going to a neurologist. I would meet with him every three months and answer all of his questions and give him a review of my health. He prescribed me some medication that only helped some of the time. Eventually, when I was about 15, my neurologist suggested that I get an MRI, which I did, but there was nothing to be found. I continued to take medications for my migraines until I was about 17 when I decided that I didn’t want to be dependent on pills, and that I should try to figure out the triggers that cause my migraines.
Because I get migraines so often, about 3-4 days a week, it was/is hard to pinpoint exactly what the triggers are. It didn’t take long to discover my biggest migraine culprit – florescent lighting. Since the lighting of a room is not something I get to decide, it is extremely difficult to prevent a migraine from happening in these situations. If I’m in a room with florescent lights for a short period time, it’s not that much of a problem. However, high school was incredibly difficult for me, because I was around these lights for eight hours at a time. Much of the time my migraines will last more than a day. Because of this, I would go to school for a day, get a migraine, and miss the following day. This happened so frequently that I missed a large portion of my senior year and almost didn’t graduate.
Some of my other triggers include wind, long exposure to the sun, bright lights, loud noises, inconsistent sleep schedule, and eating more sugar than normal. The symptoms I have from migraines vary on the degree of pain. I usually experience blurry vision, dizziness, nausea, and severe headache.
I have found that the best cure for a migraine is simply to sleep. I will often also take ibuprofen or Excedrin Tension Migraine. Sometimes, even these don’t work, and I just have to wait the migraine out. These are the worst types of migraines, because no matter what I do I just need to let the migraine run its course.
In addition to almost not graduating high school, my migraines have impaired other aspects of my life. When I have a migraine I can’t go out and do the things that everyone else is doing. This was especially hard while growing up, because all I wanted to do was play with the other kids and do what they were doing. It was also hard to explain why I couldn’t go out and play with them. Most children don’t understand what a headache is, let alone a migraine. So in addition to being left out, I was also misunderstood. All I wanted to do was fit in.
In the end, I learned that the state of my health was not the determinant of the relationships I had with my friends. My attitude and character were the deciding factors of my relationships with others. Although I may not have had a physical presence some of the time, I was still able to have a bond with my friends. It also helped that they were genuinely acceptive of me, which made me incredibly grateful.
There is a saying, “Attitude determines altitude.” I have come to believe this. It has helped me to cope with a debilitating chronic illness, and it has brought me closer to my friends, family and God. Thomas S. Monson shared his thoughts on attitude which has been a great inspiration for me. He said, “So much in life depends on our attitude. The way we choose to see things and respond to others makes all the difference. To do the best we can and then to choose to be happy about our circumstances, whatever they may be, can bring peace and contentment. We can’t direct the wind, but we can adjust the sails. For maximum happiness, peace and contentment, may we choose a positive attitude.”
Reader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres.
(Revised)
To Whom it May Concern:
I am an individual who has experienced profound head pain for over twenty years. It is a sharp, jabbing, piercing sensation on one side that is 24/7, unrelenting, and never ceasing. No one really knows what it is like to live through the pain unless they have actually experienced it themselves. I have seen a number of physicians over the years, including primary doctors, pain specialists, neurologists, neuro-ophthalmologists, neurosurgeons, etc. I have received multiple treatments, such as prescription medications, trigger point injections, Botox injections, acupuncture, and two brain surgeries. Nothing has worked. As one can only imagine, this has become quite frustrating and disheartening and it affects every aspect of life, as well as quality of life. I am aware that I am not the only individual having such experiences, as there are a number of media publications and internet stories to support this. As a last resort, I was referred to a neurosurgeon in Kansas City, Missouri, Dr. William Rosenburg, who believed I would benefit from Deep Brain Stimulation. In pursuit of this, the insurance company initially denied the authorization for this procedure. The clock was ticking, as the insurance coverage is terminating after December 31, 2016 and I would not have a means in which to finance the needed procedure afterwards. As one might understand, there was concern that this procedure be accomplished prior to the end of this year. Dr. Rosenburg and his staff were aware of this. In fact, a staffer remarked at one point, “We have plenty of time.” However, I would not be updated regarding the progress and most every time I called, the line would go to voice mail and my calls not returned. In desperation, I contacted the switchboard and asked to speak with a live person. Though this strategy was successful, I was told that they “were still trying to get Dr. Rosenburg to speak with them” (i.e. the insurance company’s authorization department). When contacting my insurance, it was indicated no such request to speak with their authorization doctor had been made. I, then, received a phone call from Dr. Rosenburg’s nurse, stating that, from the psychologist’s report, he wanted me to see my family physician first to make certain this doctor is doing everything he can for me and to get his recommendation. I, then contacted the psychologist. She stated only that there may be another medication that could assist me in the interim and reiterated that the DBS would be a good procedure for me, that she had no concerns, and I was good to go in pursuit of this procedure. I was contacted November 9 by Dr. Rosenburg’s nurse, who said he had concerns as a result of the psychologist’s report and didn’t know if the DBS would be the best treatment for me and wanted me to see him the middle of December. By that time, it would be completely beyond any reasonable time to pursue any procedure. I declined. I was, then, contacted by the scheduler, who indicated I could see the doctor November 10. I expressed my employment concerns, but did state to put me down if the meeting would be a productive one and that I wished to speak with his nurse again. She gave verbal confirmation. Following a period of time, I called back. The scheduler, then, indicated that if I did not want to come in, there was nothing they could do for me. I stated that that was not what I had stated. She went on to say that it is too late to schedule any procedure at this time, except for the trial portion of the DBS. I said that would be fine. She apparently had a reversal, as she responded by stating there were concerns on my psychological report (contrary to the sentiment expressed by the psychologist) and that, “Dr. Rosenburg is through with you because you are too difficult.” At this point, my rhetorical questions are, “Why did Dr. Rosenburg recommend the Deep Brain Stimulation? Why was insurance not pursued further? Why, now, concerns and why are these contrary to the psychologist’s report? Why am I, now, being viewed as the perpetrator and trouble maker and not someone who is being made to continue to suffer?” Of course, it is highly unlikely these questions will ever be answered and it is assumed that Dr. Rosenburg’s office will circle the wagons and react in their best interest if questioned. It would not be surprising if retaliatory measures are taken, as well, in response to my concerns indicated here. After all, one must protect such a prestigious reputation. It must be phenomenal to wield such great authority—to decide who receives relief and who does not, to provide hope, only to withdrawal that hope at a later date. But at this point, I really have very little left to lose. It must be comforting to assist someone in need when it is convenient, only to go though the motions and blame the victim when it is not. I am sorry, but this is highly immoral, unethical, and unprofessional.
This could be viewed as sour grapes. Perhaps, however, it becomes tiresome when doctors, especially specialists, behave and react in a manner as though we, the suffering, are privileged to be in their presence. Shame on them. The situation is, then, magnified when insurance is balking at the approval/authorization for a procedure, thus taking additional effort on the part of the medical facility to convince an insurance company otherwise. All the while, the patient is doomed to a life of misery.
It should be noted, also, that there was one physician over the years who appeared to exhibit genuine concern and assistance, though his specialty was not indicated as a treatment in my particular case, was one associated with the CyberKnife department at Menorah Medical Center.
Thank you for the reading of this account. It may be more than was necessary to express. I simply felt that this needed to get out there, that enough is enough, and that others, both within and outside of these circles, are aware. A number of similar stories may be found through publications and on the internet. However, there are few to no headlines or stories from major media outlets addressing such issues. Our voice needs to be heard.
Sincerely,
Russell Woods
660-441-3885
rbwoods12@2mbarqmail.com
To Whom it May Concern:
I am an individual who has experienced profound head pain for over twenty years. It is a sharp, jabbing, piercing sensation on one side that is 24/7, unrelenting, and never ceasing. No one really knows what it is like to live through the pain unless they have actually experienced it themselves. I have seen a number of physicians over the years, including primary doctors, pain specialists, neurologists, neuro-ophthalmologists, neurosurgeons, etc. I have received multiple treatments, such as prescription medications, trigger point injections, Botox injections, acupuncture, and two brain surgeries. Nothing has worked. As one can only imagine, this has become quite frustrating and disheartening and it affects every aspect of life, as well as quality of life. I am aware that I am not the only individual having such experiences, as there are a number of media publications and internet stories to support this. As a last resort, I was referred to a neurosurgeon in Kansas City, Missouri, Dr. William Rosenburg, who believed I would benefit from Deep Brain Stimulation. In pursuit of this, the insurance company initially denied the authorization for this procedure. The clock was ticking, as the insurance coverage is terminating after December 31, 2016 and I would not have a means in which to finance the needed procedure afterwards. As one might understand, there was concern that this procedure be accomplished prior to the end of this year. Dr. Rosenburg and his staff were aware of this. In fact, a staffer remarked at one point, “We have plenty of time.” However, I would not be updated regarding the progress and most every time I called, the line would go to voice mail and my calls not returned. In desperation, I contacted the switchboard and asked to speak with a live person. Though this strategy was successful, I was told that they “were still trying to get Dr. Rosenburg to speak with them” (i.e. the insurance company’s authorization department). When contacting my insurance, it was indicated no such request to speak with their authorization doctor had been made. I, then, received a phone call from Dr. Rosenburg’s nurse, stating that, from the psychologist’s report, he wanted me to see my family physician first to make certain this doctor is doing everything he can for me and to get his recommendation. I, then contacted the psychologist. She stated only that there may be another medication that could assist me in the interim and reiterated that the DBS would be a good procedure for me, that she had no concerns, and I was good to go in pursuit of this procedure. I was contacted November 9 by Dr. Rosenburg’s nurse, who said he had concerns as a result of the psychologist’s report and didn’t know if the DBS would be the best treatment for me and wanted me to see him the middle of December. By that time, it would be completely beyond any reasonable time to pursue any procedure. I declined. I was, then, contacted by the scheduler, who indicated I could see the doctor November 10. I expressed my employment concerns, but did state to put me down if the meeting would be a productive one and that I wished to speak with his nurse again. She gave verbal confirmation. Following a period of time, I called back. The scheduler, then, indicated that if I did not want to come in, there was nothing they could do for me. I stated that that was not what I had stated. She went on to say that it is too late to schedule any procedure at this time, except for the trial portion of the DBS. I said that would be fine. She apparently had a reversal, as she responded by stating there were concerns on my psychological report (contrary to the sentiment expressed by the psychologist) and that, “Dr. Rosenburg is through with you because you are too difficult.” At this point, my rhetorical questions are, “Why did Dr. Rosenburg recommend the Deep Brain Stimulation? Why was insurance not pursued further? Why, now, concerns and why are these contrary to the psychologist’s report? Why am I, now, being viewed as the perpetrator and trouble maker and not someone who is being made to continue to suffer?” Of course, it is highly unlikely these questions will ever be answered and it is assumed that Dr. Rosenburg’s office will circle the wagons and react in their best interest if questioned. It would not be surprising if retaliatory measures are taken, as well, in response to my concerns indicated here. After all, one must protect such a prestigious reputation. It must be phenomenal to wield such great authority—to decide who receives relief and who does not, to provide hope, only to withdrawal that hope at a later date. But at this point, I really have very little left to lose. It must be comforting to assist someone in need when it is convenient, only to go though the motions and blame the victim when it is not. I am sorry, but this is highly immoral, unethical, and unprofessional.
This could be viewed as sour grapes. Perhaps, however, it becomes tiresome when doctors, especially specialists, behave and react in a manner as though we, the suffering, are privileged to be in their presence. Shame on them. The situation is, then, magnified when insurance is balking at the approval/authorization for a procedure, thus taking additional effort on the part of the medical facility to convince an insurance company otherwise. All the while, the patient is doomed to a life of misery.
It should be noted, also, that there was one physician over the years who appeared to exhibit genuine concern and assistance, though his specialty was not indicated as a treatment in my particular case, was one associated with the CyberKnife department at Menorah Medical Center.
Thank you for the reading of this account. It may be more was necessary to express. I simply felt that this needed to get out there, that enough is enough, and that others, both within and outside of these circles, are aware. A number of similar stories may be found through publications and on the internet. However, there are few to no headlines or stories from major media outlets addressing such issues. Our voice needs to be heard.
Sincerely,
Russell Woods
660-441-3885
rbwoods12@2mbarqmail.com