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Almost Constant Pain--Why

I've had 'headaches' since I was a young child. By high school, I knew OTC meds wouldn't do anything. In college they got so bad I would lay in the shower under cold water many nights & just suffered during the day. My doctor prescribed Imitrex, but our insurance wouldn't cover the cost. My fiancé was diagnosed with 5 brain tumors & died, so my focus changed and I don't really remember more headaches. I graduated with honors, but struggled constantly.

The 'headaches' came back with a vengeance. I missed a day a month or so at work from these 'headaches'. When I had my first successful pregnancy the headaches seemed to be gone. Then during my 2nd successful pregnancy I was diagnosed with breast cancer. I received chemo while pregnant and delivered a healthy baby. Then I had more chemo that damaged my peripheral nerves. Then I had 8 surgeries that damaged my brachial nerves. After that the attacks came weekly-my arms would ache, my neck ached, and then my head would ache too. Sometimes the headaches came first causing the neck & arm pain. I lost my job as these problems continued to get worse.

In 2015 I was bucked off my horse & dislocated my 'bad' shoulder & got a severe concussion despite my helmet. Since then I'm down 3-4 days a week with 'headaches'. Some respond to imitrex injections, others respond to narcotics, still others respond to nothing. I throw up, get diarrhea, shake uncontrollably, have blurry vision, a swollen face & arms/hands, and cannot think or talk straight. Even on good days my head hurts constantly.

I've got an appointment with the Headache Center at the University of KY in March. I'm just wondering if anyone else has issues like this.

I feel so worthless and damaged. I worry about my children growing up with a mom like me. My husband tries to understand, but he has his own disability. I don't know how to cope anymore. Please tell me I'm not alone.

  1. Hi CatholicCarrie,

    Thank you for reaching out to us, we're thrilled you're here - Welcome!

    It sounds like life has thrown you more than your fair share of curve-balls - for that I'm sorry. Let's see what information I can give you that may be helpful.

    Let me assure you you're definitely not alone - migraine can be debilitating, exhausting, frustrating and isolating - and make life difficult. Many of us are unable to hold down a job due to excessive absenteeism. When you have migraine every day it's hard to focus on career, family, and relationships. Let me share a few articles about migraine and relationships and how not to feel so isolated; and and and

    The good news is Dr. Kapoor and Dr. Smith at U of K are board certified in headache medicine, which is different than being certified neurology, I hope you're seeing one of them, but if not, it may be a good idea to see if you can - let me explain. When patients have more than one condition in addition to migraine and/or headache disorders, it's important they see an expert in this area, and that means a doctor who is board certified in headache medicine, not just a general neurologist. Let me share these articles with you that explains how these doctors are different and how to find one; and

    I've given you a lot of information so I'm going to stop now I don't totally overwhelm you.

    Please let me know what you think,

    1. I went to the U of K Clinic & was not impressed. I saw a soon-to-be-graduating resident who was nice, but nothing better than even my GP Dr. No real comment was made about my TOS and its relationship with my migraines. Just an added drug that is contraindicated with my long-time neuropathy med (amitriptyline). I'm scheduled to go back in April for nerve blocking, but I don't know if I can justify the 6 hr round-trip for something I can get locally.

      A short while after starting the verapamil the resident prescribed I began to be dizzy and pass out at random. I stopped the med & it's still continues to be a problem. I had an 8+ day terrible migraine last week that caused me to go to the ER twice within 4 days. I'm getting a Holter monitor for my heart tomorrow to check to see if my heart has decided to call it quits too. I'm also going to try out a new Neurology doc that's sort of local.

      I'm desperate and sometimes feel like I'd be better off dead instead of causing my hubby to worry so much over me that we've basically sent our kiddos to live with grandparents until I stabilize.

      How would I get in to see the Drs you mention instead of a random resident? How do I get a Dr to actually listen about all my Neuro problems instead of just ignoring them all except the migraines?

  2. Hi CatholicCarry,

    I'm sorry your experience wasn't ideal. To get in with the doctor of your choice, when making an appointment, make sure you name the doctor rather than take the first available appointment. Sometimes staff will offer first appointment but not with the doctor you want. Or when scheduling your appointments ask which doctor you'll be scheduled with. Make sense?

    I understand your frustration, were you able to check the link I provided for names of true migraine/headache experts? If it were me, that would be my next step.

    You may want to start off your doctors visit by telling the doctor you have two or three issues you'd like to discuss. Or you may need another appointment or even another doctor for other neurological issues.

    Hang in there, we're here for you.

    1. Thank you, Nancy.

      I read all the links you posted. There really aren't any Headache Specialists much closer than the U of K Clinic.

      I had a good appointment with my GP and he's referring me to a well-established Neurologist here locally. Hopefully this time I won't run into getting to know the Dr and then having them leave the area. I've heard only good things about this Neuro even if he's not a Headache Specialist.

      I'm going to post-pone my return visit to U of K in the hopes that this local Neuro can do theme thing they can. If I'm dissatisfied with this new Neuro, then I'm going to call and request one of the two doctors you recommended at U of K.

      I have to confess that I'm a little frightened about getting nerve blocks--especially with my history and the distance from home to U of K. My husband calls me 'Fineprint' because if there's something in the fine print, it'll probably happen to me. I know the nerve blocks are probably completely different than the injections I used to get in my knee, but that's all I have to compare/expect. Those injections were extremely painful (although I was reassured that very very few people experienced pain after the injections) even though they contained a quick acting analgesic. I had trouble walking for days afterwards & at the time I was only 16. If the pain from the nerve blocks is anywhere near as painful there is no way I want to be riding in a car for more than 3 hours... If it triggers a worse migraine like my last chiro visit there's no way I want to be riding in a car for more than 3 hours.

      I'm going to pray, hope, and cross my fingers that this local Neuro can take care of me.

  3. Hi CatholicCarry,

    Please let the doctor know all your concerns and history before having the nerve block. This way you'll feel better about the procedure.

    I'm not sure I "recommended" a doctor at U of K, rather suggested seeing a "true" expert.

    Good luck and please keep me posted.

    1. I took this as a recommendation... "The good news is Dr. Kapoor and Dr. Smith at U of K are board certified in headache medicine, which is different than being certified neurology, I hope you’re seeing one of them, but if not, it may be a good idea to see if you can – let me explain. "

      No matter, it's not as if I'm going to sue you or something for mentioning or recommending a doctor...

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