My-Grain of Hope
As a little girl I was always sensitive to noise and hovered in the quiet places. I guess that was the start of everything. My parents told me I hated the cafeteria since it was “too noisy.” I also had many tummy aches and doctors had no idea what it was from-now I think back and think it was abdominal migraine, but I guess I won’t really know. Blood tests and lactose tests came out normal. I first started having migraines at the age of 9 years old. The migraines were painful and interfered with school and other activities. All I remember from elementary school is being in the nurse’s office popping two grape Advil’s and sleeping on the little bed with the lights closed. From what I can remember, migraines/headaches were pretty frequent throughout my childhood; attacks happening 2 or 3 times a week. My migraines were always of the intense throbbing/pounding sensation above my eyes, and photophobia as well as nausea/vomiting. The scariest and worst headache I have ever as a child had occurred when I was 12 years old in grade 7. I felt a huge migraine coming on suddenly. It got worse very quickly. Then came the vomiting which did not cease all of that night. I took 4 Advil liquid gels that day with absolutely no effect on the severe pain. I also remember not seeing properly, objects glowing, head pounding when bending down or getting up, walking up stairs. I could not even look at the TV. All the lights in my house were off that night. I didn’t sleep much since all I did was get up and vomit every once in a while and the pain was unbearable. The next morning, my mom decided to take me to the emergency room at the children’s hospital. I remember being extremely scared and I vomited the whole time in the waiting room. When I saw the nurse, she gave me some Advil to take and I could not keep it down. The doctor asked me to walk in a straight line, walk on my tippy-toes and heels and she listened to my heart and took my blood pressure. A nurse came in and administered an IV and I stayed at the hospital all day until my headache started to subside. Migraines were very frequent after this incident but not with the same intense quality and the vomiting ceased to occur but nausea was still prevalent with every migraine. In High school the migraines were not as severe, but still frequent and responded to 2 Advils. Photophobia was no longer a symptom either.
Fast forward when I became 19 years old, in the last six months my migraines started to increase in frequency and intensity as I told my doctor. They became so frequent that I had migraines for most of the month. I was taking so much Advil and relief was not felt. I started to worry when the severity of my migraines returned with photophobia, nausea and severe pounding pain. The pain was so bad sometimes I would cry, and I usually have a high pain tolerance. The pain would also last for days since advil did not help. Even a triptan my doctor gave me (axert) temporarily removed the pain, but the chronic migraine would return quickly. I was then given advice from my doctor to go to the emergency if the pain gets very bad again. She also prescribed elavil for the prevention of migraines. At this point, I was scared and extremely tired of experiencing so many migraines. My functionality was completely impaired, as I could not even work. My migraines wore me out and I was sleeping more than nine hours a night and napping for more than 2 hours a day. When I actually had a migraine, I slept almost all day. I then had an extremely painful migraine episode for 2 days of intense pounding and nausea, fatigue and inability to move my body as it was too painful. I could not eat or sleep because of the pain. I spoke to my doctor who told me that I need to see her right away and that I should go to the ER-although I waited until I saw her. She told me that because of my reduced food intake, weakness and pain I should go to the ER to have neurology consult. I went to the ER the next day and the nurse started me on IV fluids, maxeran & decadron. A neuro consult was also in order. In all the 11 years I have been having migraines but I have not ever seen a neurologist. He gave me a long list of discharge medications (2 week course of prednisone-steroids to prevent another bad attack, elavil-for prevention and indomethacin-for abortive pain relief) and he then discharged me. I could barely get up because of weakness and dizziness so my mom had to hold me to get to the car. That was the beginning of a lot of pain to come, daily agonizing and debilitating pain that left me weak, tired and nauseous for months.
I am now 20 years old and have been living with chronic & almost daily migraine for a year and a half. I have pushed myself beyond my limits to finish college while dealing with about 25-26 migraines per month. I went to school when I felt like fainting, wrote tests with a pounding head and tried to do what all the other students could do so easily. I studied so hard even when I wasn’t well at all, I got home from school slept and then studied afterwards with more pain. It was the hardest year I have ever had in terms of the migraines. I have seen 5 neurologists and have tried elavil, lamictal, topamax all with terrible side effects and no relief. The abortives like advil and triptans hardly work or just take the edge off so I only take something when I am crying in pain. It has been so hard to be strong through all this. My biggest goal and greatest dream is to become a children’s doctor so I could help children and make them feel better and keep them smiling! My family and this dream are the only things that keeps me going. Often, during bad cycles of pain I have nice long cries and feel very sad and depressed. But somehow with the help and support of my family, my primary doctor and G-d I find the strength to bounce back and keep on going. It has been the hardest thing I have every done. Living with a pain level of 10 almost everyday has taken all my strength and determination to do. Especially since the chronic migraines came on so suddenly and while I am only 20 years old and just beginning. With my new neurologist I am on propanolol and fluoextine with the hopes that I will feel better soon. This may sound strange but through all this suffering and pain over the last 11 years of my life and especially over the last year and a half I have learned many things. Every time I feel down I try to remember some positive things i learned through all this-this was very hard to do!
1) I have learned to better take care of myself and I have learned that sometimes I must put my needs before others and if I take care of myself then I can be better and I will be better suit to take care of others and live as close to normal as possible.
2) I have learned to appreciate all the days without pain or with pain that is less severe. My mood and energy levels lift dramatically and I become a happier and more vibrant person. This all has to do with me being so grateful for not having to live with the constant pain.
3) Living with migraines also taught me that even though my body limits me I can still accomplish whatever I put my mind into If I think it will happen and if I believe that I can do it.
4) Migraines have made me a stronger person, it has pushed me even more I think in a good way to be more strong willed and passionate about what I want to do and to follow my dreams and live life with a new perspective and to take everything in that’s beautiful (a beautiful day, being able to spend time with my little sis, my mom and I laughing, making a child smile) I have learned to make the little things count.
I hope that no one will ever have to suffer and there will be more research about more effective treatments so that there will never be another child-or adult suffering the pain of migraines. I will dedicate part of my future career to research in migraine. To all those who think that it is really hard to keep going think of all the things you appreciate in your life and write them down, decorate the list, make it your own and frame it somewhere so that you can always see it and look back at it. The best thing I have ever done was write a journal about everyday or almost everyday about the pain, people around me, my feelings and worries. I hope that my journey-and yours, will get easier and that the pain will subside even a little less. I am the happiest person with ‘just a headache’! Most of all I hope that I can keep holding on to my-grain of hope and live life to the best that I can!
Have you shared your migraine story with us yet?