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Sharing My Headache Story with NHF – Jackie

I have been suffering from chronic daily headaches since I was 13-years-old. I am now 37-years-old. Back then it was tension-type headaches, with a migraine only occurring about 1-2 times per month. I went to see my first neurologist when I was 14-years-old. He literally told me to learn to live with them and that I would out grow them when I was done going through puberty. Unfortunately he was wrong. When I was about 19-20 years old my headaches transformed to severe daily migraines. At that time I was seeing a psychologist, who, when he found out, urged me to go back to a neurologist and assured me I did not have to live like that.

That started my journey to seek treatment. I cannot tell you how many doctors I saw throughout the Tri-State area. I lost count. Time and again I was eventually told that they had never encountered a patient like me. Resistant to all medications and treatment, all my tests came back normal. The migraines never improved or lessened. On a scale of 1-10 my headaches, in all these years, has never gone below an 8. They would all tell me there was nothing more they could do for me and I should seek another doctor. At 24 years old I was desperate. I quit my job and struggled to try to deal with these crippling migraines on my own.

Eventually, through the Mayo Clinic, I was referred to a clinic in Chicago. There I was assigned to a specific physician. This physician has to be, in my opinion, one of the most thoughtful, caring and dedicated physicians I have ever met. For 12 years she was my lifeline; I never would have gotten through those years without her.

Upon first meeting her, she assured me that I was the NORM not the exception at the clinic. There were patients worse than me that they were able to help return to living normal lives. For the first time in my life I didn’t feel like a freak. I felt hope. The doctor is one of those rare physicians who encourage their patients to educate themselves on their condition, the medications being prescribed and what treatments are available. The clinic educated me; they taught me how to treat my migraines by teaching me to give myself injections at home so I didn’t have to continue going to the emergency room. They gave me medications that were not necessarily “migraine meds” and encouraged me to seek alternative treatments as well.

Over the years I tried biofeedback, acupuncture, psychotherapy, massage therapy, physical therapy, hypnosis, chiropractic treatments and many other approaches. Unfortunately, nothing helped. Through the efforts of the staff at this clinic, I can now tell what triggers my migraine based on how the migraine feels. Believe it or not, at least in my case, there are subtle differences in the type of pain I have depending on what triggered it. I eventually came to the painful conclusion that although the Clinic is world renowned and #1 in the country, there was nothing more they could do for me.

So I settled for seeing a local neurologist, who thankfully, was honest with me and told me if that clinic couldn’t help than neither could he. But he is willing to help me manage my pain and has no problem with continuing to prescribe the medication as was prescribed by the doctor in Chicago.

Although to this day I cannot tell you what the warning signs are BEFORE I get a migraine (the Prodrome) I can usually tell AFTER what the trigger was. My migraines have not improved or lessened. In fact, they have increased in severity over the years.

I have a severe migraine 24/7. It never goes away. It never responds to preventative medication and only minimally responds to abortive medication (painkillers). It never goes below an 8 on a scale of 1-10. During an attack I feel hopeless, frustrated, alone, scared, and sore. My body hurts. My hair and scalp get very tender and painful, as does my temples and neck. I am in severe pain and no that nothing can be done to ease it, except to ride out. I am moody, irritable, emotional and withdrawn. After the worse of the pain has subsided I am very emotional and usually cry myself to sleep for 1-2 days afterwards. I am sore for a few days and extremely tired: both mentally and physically. I feel a sense of relief but it doesn’t last long because I know there is another one around the corner, just waiting to attack.

How do I feel when I have to disengage from family and friends because of an attack? I mainly feel guilt. Then anger, depression, frustration and hopelessness. Guilt because no one in my family suffers from migraines nor has ever had an attack. I feel like they think it’s “just a headache so deal with it”. They have NO concept of how devastating a migraine attack is or how many other body parts are affected. They do not nor cannot grasp the fact that a migraine affects your ENTIRE body, before, during and after an attack. I constantly have a sore neck and am anxious waiting for my head to get worse. I feel guilty when I have to decline an invitation that I have already agreed too. My family gets angry and disappointed with me for doing that. It’s especially hard when I have to say no to my niece and nephews because my migraine is too severe to attend their school function or other events. I know they look forward to sharing their lives with me and I love them dearly. I am single and have no children. They ARE my children and I hate to disappoint them. Unfortunately my niece and oldest nephew, who live next door, have had to watch me suffer and struggle all their lives. I think that has been the hardest part for me. Now that they are older they say they understand. I try not to take my moods out on them but sometimes it’s hard when you are in so much pain. I always apologize, but if you’ve never experienced it, how can you truly understand?

I have a masters degree in social work that I only got to put it into use for less than six months before my last employer told me they were letting me go due to my medical condition. I could have fought it but I was working with the severely mentally ill with substance abuse issues and I know how much attention, concentration and dedication are needed in that particular field. Anyone who suffers from migraines or who treats sufferers knows how difficult it is to devote yourself to others when you are suffering in so much pain.

Unfortunately I cannot say that I have made any progress or regained any control of my life. Actually I feel like I have no control. My migraines control me. I suffer alone and often in silence. It’s scary and painful to realize that this will be my life. Forever! I have been on disability since the fall of 2001. I don’t foresee that changing although I hope to go back to work one day. I loved my job and working with the mentally ill. It made me appreciate that my life wasn’t so bad. I wish I still felt that way but it would be a lie to say otherwise. All I can say is to any migraine sufferer out there, mine is an exceptional case. I’ll never know why I’m like this but don’t assume you’re like me. Keep searching for a doctor who will not only listen to you, but who also HEARS what you have to say. There’s a difference between listening and hearing a patient and a rare doctor who can do both. Maybe you will be one of the lucky ones who find a treatment plan that actually works. If you can afford it, I highly recommend you go to a headache clinic or headache specialist. One who can educate you on your condition and treatment option available to you, good luck!

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