Migraines are Ruining my Life
I have had migraines since the 4rth grade. At first my doctor wasn't sure what was wrong so he sent me for a MRI. After the results came back normal he first tried to tell my parents that I was just saying that I had "headaches" to get attention. Finally he decided to diagnose me with Tension Headaches. I had nothing going on in my life, my parents were married and working. My grades were good. I wasn't getting bullied at school etc. So why would a doctor think a normal child would have tension headaches nearly every day?
Skip forward several years. I'm now 19 years old and the same doctor diagnoses me with migraines and said that is actually what I've had all my life, not tension headaches. He prescribed my 100 mg tabs of Imitrex, which always helped me with in an hour. He also diagnosed me with bipolar or chronic depression but he never really decided so he just kept giving me antidepressants. He also tried Topamax and Depakote (anticonvulsants) to prevent migraines. That didn't work at all. At that time in my life though, I was only getting migraines 2 or so times a month and the Imitrex was working for me.
Skip ahead some more years. I'm now 27 and my migraines stared getting more frequent. I had them 4 times a week. So I returned to the same doctor. Now he prescribes me 500/5 mg tabs of Vicodin in addition to the Imitrex. It did work when used together but now I also had to lie down. This went using FMLA at my job for the days I missed. A couple of months went by and the migraines went back to normal, only coming 2-3 days a month.
Now we are in 2010. I am 33 years old. It hasn't been a good year for me health wise. I had to have 2 ovarian cysts removed in February of that year. They weren't cancerous so after some healing I went back to work and back to life as usual. After months on strong painkillers and lying around in pain and doing nothing because of the cysts I had gained a bunch of weight and my migraines began to get more frequent. They started out a few more days a month then a couple every week until finally it was 4 or more days a week. I went to my doctor (a different one that I had previously seen because I had moved). He prescribed me Imitrex and Vicodin and ordered 2 MRIs. The results of the MRIs came back normal. The migraines became worse. The medications weren't helping anymore. So he added antidepressants (several in fact) and none of them helped. He also told me I was "depressed" even though I had explained to him that you would be "irritable, moody, crying" etc. if you were in as much pain as I was. I also had gallbladder attacks from September until December when I had my gallbladder removed. Even in my two separate 5 days at the hospital, I had to have pain medications administered to me for my migraines.
My doctor recommended that I see a psychiatrist. The psychiatrist said I had a mood disorder and anxiety. He tried some different antidepressants and they didn't help. My migraines were so severe at this point that I could rarely drive. I had to depend on my 14 year old daughter for help around the house and with caring for her younger brother. I had to leave my job. I could no longer work my customer service job (that I got to work from home) because when I would get a migraine I could not understand when people spoke to me and I could not form whole sentences. In fact, when and if I did speak, it would rarely make sense at all. One of my worst fears was that one of my customers would think I was drunk or on drugs. My daughter started virtual school (on the computer) to be at home with me. The doctor added some more medications. Now I was taking antidepressant, Imitrex, Vicodin, Xanax and Addipex (appetite suppressant).
My doctor decided that because I was heavy (even though I have not been so my entire life but have always had migraines) that Sleep Apnea was the cause of my migraines. After months of his insistence, I finally went to another doctor who set up a sleep study for me. The sleep study tests came back negative; I did not have sleep apnea.
My original doctor tells me at this point he doesn't know what else he can do for me so he refers me to a Neurologist. The neurologist specializes in migraines so that was great. He had lots of experience and told me that he and his wife suffer from migraines. I was very hopeful. He tried to go over the medications I had been prescribed to see where we should go. Every beta blocker, anticonvulsant, antidepressant and calcium blocker he asked about I had already tried it seemed. He came up with a medication called Gabapenten. The next two weeks the medication made me "psycho". I became very agitated with my family. I was confrontational and angry. I was sleeping all day until 5pm then back to bed at 10pm. I called the doctor and told him that medicine wasn't for me and he agreed. He tried a couple of other medications before letting me know that he was going to be on vacation for the next 6 months and he wasn't able to do more for me at this point in time.
I had two trips to the ER 4 months apart. The first time I went a doctor put me in a room with a door. She gave me a pillow case to cover my eyes. She had non-narcotic medication administered through an IV right away along with fluids. She sent me for a cat scan and as soon as I returned she asked if the medication had helped. After letting her know I was still in pain she then administered a narcotic medication. Within the next hour my pain was going and I was released from the hospital. I had suffered that migraine for several days and my medication hadn’t worked. The doctor told me to come back if I went 3 days with a migraine that my regular medications did not make go away.
My second trip to the ER was after having a severe migraine for 10 days in a row. I had fainted and hit my head earlier in the day and had a bloody wound. I went in and this doctor made me wait in a room with a current (the room with the door was open, the ER was not busy) with the light on. No one offered me anything for my eyes. They just left me there for a long time. Then they put in an IV (no fluids) and gave me non-narcotic medication (basically I was told it was motrin — which has never helped my migraines) and they sent me for a cat scan. The doctor left me in the room until my results came back — normal — and asked me if I felt better. I told him “no, I feel the same” and he sent me home right then. So I got no help at all. I called my doctor and said that I needed some more medications. I was wishing I would die at this point. I didn’t feel like I could take it anymore. So he prescribed me Phenergan (for nausea) and Ambien (for sleep — as a last resort to get some relief from the pain).
My husband has migraines also and he can take an Exedrine Migraine or two and his usually goes away. He has some that are really bad. He thinks that he knows how I feel based on what he feels. He said I should be able to just take Exedrine, like him, if I had “real” migraines. Sometimes he gets resentful. He says he has to go to work — even when he has a horrible migraine. He tells me that everything is on him and it’s too much pressure. I don’t know what to do because I really can’t drive/work/chores. I do have to lie down and sometimes sleep my migraine off. He told me he doesn’t want to be married to someone that is “laying in the recliner like a 90 year old lady, too sick to get up”. Plus the weight gain. He keeps telling me I need to get some exercise, to take a walk etc. I can’t make him understand that I really can’t. Sometimes he actually accuses me of “faking it” because I’m too “lazy” to work or exercise. He believes my pain is just like his. He believed he knew what was causing my migraines. He thought my posture was bad and I always lean my neck forward so he decided to take me to a chiropractor. They found the nerve at the top of my neck was pinched and thought after a couple of weeks of adjustments (3x a week) would make my migraines go away. So my husband paid them $2000 and I went faithfully for 3 weeks (which was hard because I had to drive myself and even if my medicine worked it is illegal as well as dangerous for me to take it then drive). You guessed it. No change, none at all. My hopes were dashed again. The chiropractor and my husband were pushing me to stop taking my medications. I would be in so much pain that I literally couldn’t see, was vomiting and wanted someone to shoot me and put me out of my misery. I would wait until my husband went to bed so he wouldn’t yell at me to take my medicine and lots of times it would be 4am or 5am before the meds worked and I was able to finally sleep.
After seeing all these other doctors with no answers I decided maybe it was my hormones making my migraines so frequent and severe. I did have rapid weight gain of 20 — 40lbs a month and some other things that hormonal problems coming. I went to an Endocrinologist and she ordered several tests. They all came back normal. While I was happy that nothing serious was wrong with me, I was also devastated to not have found the answer to what was causing my migraines.
I know a few things that trigger my migraines: aspartame, msg, not enough sleep and going too long without eating. I wish I could give this story a happy ending but I can’t, not now at least. I am still going to my regular doctor and the chiropractor. I still have to take several medications, all for immediate treatment of my migraines because none of the preventative meds have worked so far. My neurologist comes back in a month, but I’m not as optimistic that he can help me as I once was. I have joined a medical weight loss program because I don’t want more health problems because of my weight but I’ve only lost 10lbs in the last month. (I still have like 80 more to go L) I don’t have a clue why my migraines got so bad or why they stayed so severe and frequent. I can’t tell you why my husband can take an Exedrine and be ok while I have to take several prescription drugs and it only helps sometimes and after 6 or more hours. I stopped going to church because I couldn’t drive there and because every time I stood beside someone who was wearing baby powder perfume or had eaten a bologna sandwich I would have to go into the hallway and wait for it to be over. My kids had to quit going to karate because I couldn’t drive them anymore. I had to file for social security because I can’t work, but of course I was denied so I have been working with an attorney — waiting for the last two years for a simple hearing. My husband is resentful towards me because he has to work 6 days a week’s 12 hours a day to make up for me not working. He also uses my migraines as an excuse for us not to do things. “We could have went to the beach but you’d probably get a migraine.” Or “I’d like to go visit our family (out of state) but with your migraines I don’t think it’s a good idea.”
I hope, like the rest of you that I can find answers and peace. I don’t just want to be breathing; I want to feel like I’m actually alive. I want to have something to look forward to again. I want to have less migraines but I guess that’s what we all want.
Community Poll
Do you feel comfortable advocating for yourself to your healthcare provider?
Join the conversation