The Migraine – The elephant in the room that no one else sees

My migraines started young but I didn’t know what they were until I had a friend who had them too and explained to me what they are. I was 18 at the time. Triptans just came out and were readily available to me. But I quickly discovered I am allergic to them. As well as DHE. I first went to a neurologist when I was in my early 20s. He suggested Maxalt dissolvable tablets as needed for headache. And Demerol when the Maxalt didn’t work. My friend explained how she was bed bound and threw up for hours when she got her migraine. At this point in my life all I would get was a very bad headache but nothing else yet. I was in and out of the ER constantly in pain. But slowly my migraines went from chronic to a few a year. Then at 24 pregnant with my 3rd child I began seeing lights moving in my peripheral vision but had no migraine symptoms. I thought at first it was light from passing cars moving across the walls. But it was happening during the day too. I was so scared I didn’t know what was wrong with me. At one point I thought it was ghostly orbs. Then my O.B. doctor said it might be migraine aura with out a headache. I had never heard of aura before so I didn’t understand. So I began to learn everything I could on Migraines and auras. I saw a ophthalmologist to be sure it wasn’t retinal detachment because my script is very high and could cause this problem but my eyes were healthy. After the birth of my child all my symptoms and my migraines went away for 4 years or so, that’s when I got pregnant again and all my symptoms came back with a vengeance. I was in and out of the ER constantly. I began getting nauseous and vomiting, seeing lights, getting dizzy, and even moodier than a normal pregnant woman. But because of the baby they were not sure what they should or could give me to help me. They tried iv fluids, oxygen, benadryl, magnesium iv, and not much else. After I had the baby CPS took her from me when she was still in the hospital saying it was because I was drug seeking during my whole pregnancy. There was nothing I could do to get her back so they put her up for adoption when she was 3 months old. My husband and I are still devastated because of this. Speaking of my husband, I met
Shawn in 2000 when I was 24 and he was 30. It wasn’t until 2005 during my pregnancy that he discovered how serious my migraines are. After loosing the baby my migraines became worse than they ever were before. I finally got to see a neurologist. He was very nice and decided to put me on depakote and Vicodin. The results were an improvement but didn’t last long. I managed to get through my wedding in 2008 but couldn’t even have a glass of champagne to celebrate because alcohol gave me a severe migraine every time. Starting in 2009 my migraines became chronic. We had moved to a bigger city and had to start all over again with finding a doctor and many trips to the ER. Up to this point my husband had a basic understanding of what migraines are and they effect me. He would get frustrated and angry with the doctors and ER staff. The treatments and meds I was given didn’t work. They would give me benadryl, promethazine, and steroids, with IV fluids and oxygen. I would stop vomiting but my head pain persisted. They said they may be painful but wouldn’t kill me so I was just going to have to learn to deal with it because there was nothing else they could do to help me. They labeled me a drug seeking person and refused to give me anything for my pain. My neurologist had me have a brain MRI in 2011. He said if the results didn’t show anything he would be discharging me as a patient and referring me to a psychiatrist. When the results came back they showed numerous white matter lesions that they believe they are caused from transit ischemic attacks (other wise known as mini strokes). So at last I can show everyone im not a drug addict! I discovered white matter lesions on the brain are seen often when it comes to migraine patients. So he put my on very strong vicodin, depacote, and topamax. My trips to the ER went down to a few times a year. I still had chronic migraines but I was able to handle them on my own. My husband by this time has learned a great deal about migraines from what I learned and shared with him. He became my patient advocate before my husband at this time. Having him with me at all my doctor appointment and trips to the ER as a objective observer of my migraines and could provide a first hand account of my health and well-being. And believe me he was objective sometimes enough to piss me off because I didn’t see things about me the same way as him. But ultimately his input became invaluable and my doctors took him seriously. Over 3 years I began to get dependent on my vicodin. I became suicidal because of the endless pain and was put in a psychiatric hospital after a failed suicidal overdose. while in there I was slowly weaned off of my vicodin and was put on seroquel. I was in there for 3 months. But when I came out I was healthier and more able to cope with my headaches. I was sent to a case manager who became my therapist and second advocate. She helped me apply for SSI and I got it in less than 3 months. I was very lucky because most people get denied the 1st time and wait years to get approved. She also would come to my house 2xs a week at first to council me and see if I was doing OK because I was never sure if a migraine was going to stop me from leaving my house. She talked my into learning DBT skills. At first she was teaching me at home but a few months later she convinced me to go to a class she runs at her office once a week. If it weren’t for the DBT skills I learned from her I wouldn’t be here today. Fast forward to 2012 and I get a new neurologist. He asked me what helps for the pain when I went to the ER for pain. And he asked me about my history listening to every word I said. This was the 1st time I really felt like I was recalling being heard and taken seriously. So he put me on Midrin, Promethizine suppositories, and 2mg of Dillaudid. I was amazed at the results. My migraines stopped being chronic, and I was treating my pain effectively. I didn’t go to the ER for 2 more years. We are so grateful to find a doctor who cares. In December 2013 we moved again. We moved to a city in the county over for 3 months. Which required me to change doctors and that was going to take more than 6 months to see one. And slowly my migraines began to become chronic again. In April 2014 we moved to Virginia and stayed a month there. I was under so much stress and had no migraine meds I ended up in the ER 5 times in 4 weeks. And quickly labeled a drug seeking patient. So we decided to move to Kentucky in may to be close to my father. And the cycle of finding and seeing new doctors began yet again. It was the change of seasons (one of the worst things to affect my migraines). I was in the ER 4 times in may. I finally got medicaid on June 6th. I got to see a neurologist in July. He did a basic nuero exam and referred me to migraine specialist and prescribed me fioricet with codeine. I showed him my medical records from my previous doctor showing him the meds I was on and how great they worked. But he refused to give me dillaudid because the legal red tape involved in prescribing in Kentucky were so scary to him he just refused to have to deal with the DEA, despite the fact this drug did wonders for me. So a couple weeks later when I go to see the migraine specialist my neurologist discharged me as his patient, and to see if he could give me botox treatments. First of all he was very standoffish and arrogant. The night before seeing him for the 1st time my husband and I sat down and wrote down all the drugs I have tried and their effects, all my allergies, my migraine history, my current symptoms, and what drugs I was currently taking. I handed him the papers he quickly glanced at them and handed them to his intern. He then said he would give me botox therapy as soon as my HMO approved it. He said he never gives patients narcotics ever and refused to listen to anything I had to say. He put me on Keppra, promethizine suppositories, and 10 Fioricet a month and sent me home to wait for him to call me when my botox was approved. It wasn’t until August before I got my first treatment. I was alone and scared but I went through it anyway. It hurt so bad. So many shots. And one shot on the right side of the nape of my neck made me cry. It was so painful and I could feel a cold burning sensation all the way down to my shoulders. He got a panicked look on his face and kept asking me if I was okay like he knew he did something wrong. It took 5 minutes for the burning to abate. And from August to December I had a migraine every day. It was like a never ending case of the flu. I was at the ER 3 times a week. Some would give me what worked, but more often than not they would give me the migraine cocktail that never was able to relieve my pain but quelled my vomiting. I lost almost 20 pounds during this time. And it was even harder because my 21 year old daughter moved in with us from Germany. So naturally she wanted to go to the zoo, amusement park, shopping all the time, and so on. It didn’t take long for my migraines to get worse. And of course she feels like its her fault I would get migraines. She has dealt with them before and gets upset with me because she feels im making things look worse than they really are. That frustrates me that she hasn’t learned to understand how much my migraines deter main everything I do. I hate to see her upset because of me and I feel guilty im not a healthy mother she deserves. Her dad tries to back me up telling her how bad it is for me and that its all 100% real. Well after my Botox experience I found a new neurologist. And I got referred to a pain clinic too. My new doctor is awesome. He is very friendly, acts like he is genuinely concerned about my well being and believed everything I told him and never once called me a drug seeking patient. I am so relieved. He put me on Lyrica and promethazine. And strong aleve too. He immediately set me up for a MRI of my brain. When I went back to see him he said I have a lot/great amount of white matter lesions all over my brain and that’s shows I am having a lot of migraines. Finally some proof of how sick I really am. At the pain clinic the first PA I met was rude and curt and wouldn’t let me say anything. She started off with how bad I look as a drug seeking patient and how closely they will be supervising me. I have to do a drug test every time I go there. She ordered a MRI and xray of my neck. That MRI showed that I have two bulging disks in my neck that are almost herniating. And again I now have physical proof I was never drug seeking I really have been in pain. So they put me on Lortab and zanaflex. You see the neurologist and my pain doctor both are not sure if the neck pain is causing my migraines or if it was my migraines making my neck hurt. At this time my migraines are only a few times a week. Most of the time I will get a throbbing on my head in a small area. It hurts like hell for about 10-20 minutes but it goes away. My quality of life have improved. But because of how sedating all my meds are i barely have any energy to do much. And the side effect of my Lyrica makes me swell, so I find it harder to take walks now. I’m supposed to be getting prescribed Ritalin for about 3 months to help me have more energy until my body has time to adjust to my new meds. My adventures aren’t over yet, I’m getting a sleep study done next month and I am going to have a full hysterectomy next month. And im worried menopause will bring my migraines back. Hopefully me and my doctors can prepare for that. Also im seeing a psychiatrist who prescribes me elevil and clonapin for my migraines and so far they have helped. I have rambled on long enough. I have so many plans for the future so many things I want to do. And right now im very frustrated I cant do much right now. I feel like a drain on my family and society as a whole. I would never gotten as far as I have if it wasn’t for my wonderful husband who is always there for me to remind me to just breathe. Never give up hope. Things will get better I promise. I cant tell you when, or how, or for how long. But I can promise you that day will come. Good luck my fellow migrainers and stay safe!

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