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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.

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Comments

  • Achinghead
    6 years ago

    Andrea,
    My Neurologist/Headache Specialist has me keep a monthly calendar tracking daily whether or not I have a headache, how severe it is, how long it lasts, what medications I take, and whether I have sensitivity to light or sounds, or if I have muscle aches before, during and after the headache as well as possible triggers and whether or not I had nausea or vomiting.

    This helps her to plan my treatment. Per her advice to avoid medication overuse headaches, I try not to use prescription pain killers or triptans more than 2 or occasionally 3 days a week. This is really hard when I sometimes have migraines 4-5 days a week. Sometimes using a heating pad, and sometimes using ice helps with the pain also.

    As far as Social Security Disability, I was initially denied benifits in 2007. I hired an attorney, who had my Neurologist fill out a headache questionnaire which clarified how often I had a migraine and how long each migraine typically lasted. She also listed every medication I was taking, the side effects and how they effected me. I won benefits without having to go to court.

    I hope this info help!!
    Nancy

  • Julie
    6 years ago

    andreapierce
    I can relate to your story. I am 50 years old and have suffered from migraines since 1987. In 2010 they turned to daily intractable migraines and they have not found the source of why. My MRI, CT and blood tests came back fine. They put me on low estrogen birth control to help with the hormonal migraines but the daily ones still persist. Some are weather related, if there is a drastic change in the pressure-if it suddenly drops or rises. I’ve kept a diary and know all my triggers-have you kept a detailed diary of food, beverage, weather, sleep and hormones? I did for several months and my 1st neurologist put me on a food elmination diet after I did my diary. I found I’m intolerant to MSG, Nitrates, Soy, Dairy, Eggs. Later on after I did my elimation diet I dug deeper and found there are all kinds of hidden sources and different names for MSG and Soy and my list of forbidden foods grew. But were you aware for some people Gluten and hidden sources of Gluten can cause migraines? Did your doctors have you do a detailed diary and a food elimination test? I would find a better doctor who would guide you in this process if they have not done this as food triggers are a prime suspect as migraine triggers. And also Tyramine that occurs naturally in some foods-some in higher concentration than others. The National Headache Foundation has a Low Tyramine Diet Guide that you can print out in PDF.

    If you have not found a neurologist that has put you through the migraine testing gammet like migraine diaries, grilled you on your triggers or asked you about them I would fire him and move onto another. You do not need to waste your time on a doctor who does not value you as a patient and as a human being. Are there any pain clinics by you? Can you get a referral to one that specializes in migraines or are they too far away? Do you have a friend or a family member who can drive you to and from? Are you in a rural or big city where access to doctors is more available or is pickings slim? You need to somehow find a good doctor that can write you up standing orders for when you have to go to the ER that you are a Patient that has Migraine Disease and the protocol to follow on how to treat you with medication and to contact your doctor if the ER doctor cannot understand how to do so. Of if there is a pain clinic hopefully they have an infusion center to treat their chronic pain sufferers because that is what you, I, we all are in the Migraine Community and deserve and demand to be treated with respect, dignity and compassion, but most of all to have our needs met and the pain taken care of and controlled. That is why you went there in the first place.

    Back to food issueds-some people are more sensative to food triggers, smell, noise, sound and light. A few of my migraine online buddies put the smell like this “we have the dogs keen sense of smell” we can pick up the slightest scent and it will trigger some of us that are super sensative, and I’m one of those. I try to avoid situations that put me in contact w/smelly things-the soap isle in the stores, scented candle isles, I avoid smokers like they have the plague. I bet you do too.

    As for your husband I am so sorry you have to endure his callous treatment. He cannot seem to understand that there are different types of migraines and to different degrees of suffering. There is from minor stages to severe. Maybe he should explore this forum and see all who have the severe stage to know that you are not alone. In fact The World Health Orginazation ranks Migraine as one of it’s 19 disabilities and 37 million people suffer from this disease. In the US 18% are women and 7% are men and 70% are genetic.

    You are starting on the right track with losing weight which is always helpful, but I found it was helpful in getting therapy because there are comorbidities that exist with Migraine Disease. You may not realize it now but it may show up with therapy. One bad therapist does not make them all bad. I owe so much to my therapist. She has helped with my anger management and pain management strategies as well as my emotional support and outlet for the lack of emotional support with my spouse. And will I filed my appeal with I was denied my SSD benefits, she, my Neurologist and my SSD appeals lawyer were my best allies.

    AS for the SSD I filed for mine originally in Oct 2010. I got denied in May 2011 and I appealed through a SSD appeals attorney May 2011. I got my SSD appeals hearing of all dates April 13th (Friday the 13th) 2012 and I won my SSD. But they do love to drag it out. They think the longer they drag it on you get tired of waiting and you’ll quit. Heck, they want you to give up completely the 1st time they deny you as so many people do. And my husband was very resentful for my not working all that time. He’s still not happy that I’m not making what I use to and not earning my “fair” share. Whatever. I learned to blow it off. We came into this world broke and we will leave this world broke. End of that subject I say. The Good Lord says you can’t take it with you so you can’t store it all on earth cause you can’t store it in Heaven.

    If you want to go to church maybe go to a womens bible study when there are only a small group of ladies there. You can distance yourself at a large table with a few women. Or go at night if the church is open, sit in the back, read a few verses from your bible, say some prayers and sit for a while and enjoy the peace. Or you can go in the morning alone when the kids are at school and the husband is at work. If you can’t drive yourself see if a friend can take you or a neighbor. Maybe someone you know from church that you like that lives nearby.

    Have you tried meditation or progressive relaxation exercises? You don’t have to convert to buddha or some other religion but when the pain gets at its worse close your eyes, picture a peaceful serene meadow w/beautiful flowers and chant to yourself in a low voice or silently “with Gods power I can do anything” over and over slow and in a wistful tone until you feel a calm come over you. It wont cure you but it will release some tension. It’s almost like when your kids were little and you’d get made and you’d say “I’m gonna close my eyes and count to 10” only this time your doing this to calm yourself down and bring peace to yourself.

    The rest is up to you. After you find the right doctor amd/or right clinic you need to fight the negative attitude you get w/a positive attitude. It’s hard, but I learned over time that some people like to drag you down because negative people like to make other people feel miserable so they make that their goal. You have to beat them at their own game or as I call it stump them w/zingers. Just an example I used a while back w/a friend who likes to rate my pain based on my eyes for some reason. She’ll say “you don’t look that sick” and I came back with “well, I decided I better get up and make belive I was alive so the undertaker could have a day off”. Sometimes my sense of humor gets a little dark and twisted. But she clammed up. One other time she looked into my eyes and said “I’m thinking your pain level might not be so bad today-maybe a 5-6?” I retorted “Amazing what Oxy can do and for my next trick watch me fly through the air w/the greatest of ease, all without the use of my flying trapeeze”.

    We all miss events or go to events and overdo it. People may resent us for it and may not. I have come to the point I let it roll off my back like water off the back of a ducks feathers. Or something like that. We all have our shortcomings. This Thanksgiving was a bad one for me and I lost my positive feelings and backslid. But come this past Monday I was back on track. But you have to take care of you because no one else will. YOu have to befriend yourself and learn to love yourself. That I learned from my therapist. There are a lot of helpful tools you can gain from the support of a therapist and they can help you a lot through pain management. Just because you got a bad one don’t rule them out. I strongly advise you search until you find one your comfortable with. A nice middle age lady that deals with pain management. That was how I found mine-I asked to be referred to one that deals with womens issues and pain management. With everything your going through you will really need the extra support. Do not sell them short-they are a great asset.

    Please keep us updated.
    Sincerely
    Julie

  • donnagarden
    6 years ago

    I understand your frusration and confusion about what to do. Here’s what has helped me: I was hospitalized through the Michigan Head Pain and Neurological Institute in Ann Arbor for 1week. They took me off my meds and I had an IV which held a cocktail of different meds that weaned me off the old drugs and worked on keeping me as pain-free as possible. They then worked up a new drug regimen for me to take home. I would advise you to find a headache specialist and a program like MHNI that will set you on the right path.
    Also, research daily to find out what is working for others and discuss these findings with your headache specialist.
    Identify all of your triggers by keeping a headache diary. Don’t forget to consider weather, light, sound, foods and air pressure.
    Sugar and too many carbs have been bad for me. Try staying away from these and you will lose weight quickly. This has helped me get fewer headaches.
    Finally, be careful of MOH, Medication Overuse Headaches. I found that taking too many meds, both preventative and abortive, made me feel worse and led to MOH.
    Good luck and be proactive in your research and things will improve. I am on SSDI after losing my job, husband and some friends but I keep on trying to improve my situation by the tactics I explained above
    Donna

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