What is pain? How much pain should a person endure before seeking relief with pain relievers? These are questions that I ask myself constantly. I’ve made no secret that I am in poor health due to Lupus and my being overweight, but I haven’t mentioned my struggle with migraine headaches. Let me state here that I believe my pain threshold to be ridiculously high. When you have a disease like Lupus you learn to live with a certain amount of pain. Pain is just part of your life with Lupus. When I say that my migraine pain is the worst pain I have ever felt and I want to die when I have one, that is no exaggeration.

Recently, I started seeing a neurologist here in Nashville that is a sensei of migraine prevention and treatment. Before I saw her I’d have a headache every day. It was normal for me to wake up in the morning with headaches and go to bed the same way; not all my headaches were migraines but my point is that my head hurt constantly. I thought this would be my quality of life forever prior to seeing this doctor. I would get severe migraines at least 4 or 6 times a month, maybe more. When all else failed in terms of treating my migraine pain I’d have to go to the ER and get pain medicine there stronger than what I had at home. Many times, I needed the medication IV because when my head hurts this badly, I tend to throw up frequently. The IV narcotics would most of the time work like magic. After hours and hours of pain a simple shot in an IV and the pain subsided; many times the headache would return but that break in the pain was always appreciated. Initially, when I’d go to the ER ever so often the hospital staff was so friendly and helpful and really sympathize with my pain. As the headaches began to come more and more frequently, the less friendly some of the hospital staff became.

Due to Lupus, I have several different doctors since nothing I do is ever simple or well thought out, all of my doctors seem to be at different hospitals around Nashville. Usually when I’d get a migraine ER worthy, we’d choose the ER based on what else was going on with me at that time that was most prominent. Over the months when I was receiving chemo I’d go to that hospital’s ER because I was going there every month and it just made sense to go there. Other times, the decision would be based on the hospital that housed my primary care physician. Then there were the times when I’d go to another hospital because it was close to my home. All the hospitals that I went to were linked and each hospital had a record of the time before and the time before that. It wasn’t my thinking that I was “doctor shopping” or trying to get more and more pain meds from hospitals and hoping the other one would not know about my previous trips to the ER. As far as I knew my medical information was available and I wasn’t trying to defraud anyone; I just wanted my head to stop hurting.

As you can probably imagine, my files at all of my doctors' offices and at various ERs are ridiculously full. As I stated since going to the headache sensei trips to the ER have lessened but unfortunately my name has been sullied in the process. Last night, I was stricken with a particular evil migraine that refused to subside. I tried everything at home to get it to go away and nothing worked. I got to the point where I had taken all the meds that I had as many times as prescribed, I tried home remedies, prayer and putting pressure on my head. As if the pain was not enough I started to vomit - I cleaned out my stomach and kept puking until that turned into dry heaving. When I am in this much pain, I want to break down and cry but the fear that the crying will make my head hurt is too much. Last night, I don’t remember crying or thinking about crying but tears continually rolled down my face and my clothes were wet from perspiring.

I hated to ask my mother to take me to the ER, but I was at the point where I just wanted to die. The pain cannot be described. You have to have experienced a migraine to have any inkling of how horrible it makes you feel. I tell people all the times if I had a choice between ridding myself of Lupus or the migraines what would I choose – Hands down I’d choose to rid myself of the migraines. Don’t get me wrong Lupus is painful and can be horrible but nothing like the migraine hell I have been trapped in. By the time we got to the hospital, I was sobbing and I used my jacket to shield my face because the lights in the hospital were hurtful to me. I couldn’t even sign myself in. When I went to triage and she saw I was there for a migraine I sensed through my pain trauma that she was a little miffed about me coming in. It was around this time, I started to throw up at her station and my blood pressure was stroke high. Immediately, she got me to a room. After what felt like years, another nurse came into the room with an attitude and took my blood pressure again, due to the fact that I was still in excruciating pain and had just walked into a room my blood pressure had gone up even higher.  Finally after another period that felt like forever a doctor walks in. I never saw the doctors face because mine was buried into the hospital bed. All I could do is hear his voice and try to answer his questions.

I could tell immediately that the doctor was not taking me or my pain seriously and thought I was there to get narcotics. “Great” I thought I don’t have it in me to convince this man I am in pain. I just continued lying on the bed sobbing. He told me that “using narcotics to treat migraines was not good medicine.” Through my pain, I kept thinking, “Dude, I so don’t care if it is good or bad, I want some relief.” My head was hurting so bad last night I would have smoked crack if someone would have told me it would cure my headache and he wants to debate with me the appropriate uses of pain medication ----hmm..Maybe it is just me but seems like for pain it would be a good use of the medicine. Last night was one of the rare times when I was glad to have my mother’s mouth there and her inability to stay out of anything that concerns me. The doctor suggested two medications to me and I told him that I had a bad allergic reaction to one of those meds and I wasn’t sure which one. He then asked about the “allergy.” After my explanation, I am still crying, the doctor informs me that what I had to the medication was not an “allergy” it was a distonic reaction.” “Is he serious?” I kept thinking, I could not care less what it is called; it was negative and it made my body hurt. At this point, I just gave up and starting praying for divine intervention. The doctor left to I assume give the nurse the orders for me when my mother left the room after him. I could hear my mom from the room talking to the doctor repeating what I said and demanding that he give me something else. The doctor again stated his views on narcotics and headaches. My mom then calmly reminds him that neither of us had asked for narcotics. All we wanted was something that will stop the pain and wouldn’t cause a “reaction.” After this he suggested something else that did after awhile start to work. Do these people really think that I come here for one shot and a high feeling that really lasts about a minute or that I’d drag my poor mom out here all night for nothing? If I am there to get high what is my mom there for? Kicks? It is the kind of pain you have to experience to have any “know” on the subject. I have asked people to kill me before when I thought my head would explode. I have been found lying on bathroom floors in or around vomit too sick to get up.

The relief from the non narcotic medicine was not immediate the way it is with the narcotic but the pain did stop eventually and that’s all I wanted. I will not tell a lie receiving IV narcotics makes you feel good, really calm, relaxed and OK high but after hours and hours of pain that is a welcome change. I must say that this treatment from the ER hurts me and makes me feel bad. No one, especially people in pain want to be treated as a junkie; Junkies don’t want to be treated like junkies.

How much pain should a person have to endure? Who gets to decide how high my threshold of pain should be? I believe the answres to these questions should be made by the individual and the doctor should definitely have the final say in treatment but listening to your patients should also be a top priority.