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My migraine life.

My first migraine was as age 20. After that I had one every month then every week then by the time I was 23 I had 2-5 a week. My maternal grandmother had migraines also she died when my mom was 9yrs old of a brain aneurysm. At 24 decided I had enough went to the doctor he sent me to a neurologist. He did a MRI found nothing. He then put me on preventatives. From propranolol to depakote. None has worked. I’ve tried migranol and imitrex. The only thing that stops them so far is maxalt. I know my triggers from too much sleep to too little sleep(I’m narcoleptic with cataplexy). Certain smells from salmon cooking to popcorn and perfume counters in the mall. And flower perfumes like lilacs. Oh,and stress of course. I believe that sleep is a big issue for me and I have talked to other narcoleptics with migraines they also believe this. Oh,and medication is a trigger also.

Fast forward to now I’m 37 had 4 MRIs don’t know why really. Been taking maxalt for years cuz doctor seems to forget to give me an alternative. February 12th 2014 I woke with a migraine since then I’ve woke up everyday with a migraine. Today is February 25th. After 5 days of constant migraines called doctor said maybe rebound headaches put me on tramadol. Well tramadol does nothing. Called and called doctor says he wanted to wait then says gotta see you before anything else. Appointment not til March 18th. Im worried as this has never happened before. I think it has to do with for a week migraines started on the 12th my ears felt blocked went to doctor he said you have a blockage not an ear infection. Im confused. Now ear feels like draining alot and is sometimes other times not. Idk what to do. Meanwhile my world is crashing cuz my cataplexy is going crazy and I can’t stand the migraines.

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Comments

  • Katie M. Golden moderator
    5 years ago

    Spider Lady,
    I’m really sorry to hear that you are suffering so much lately. It has to be really frustrating. You have a lot of different medical issues and it must get overwhelming at times to be on top of all of it. Here are a few things you may want to consider:
    1. Since you’ve been having daily Migraines for 2 weeks now, I think it’s very important for you to keep a Headache Diary to show your neurologist for your next appointment. This website has a very easy to use diary function that you can print out and take to your doctor.
    http://migraine.com/migraine-meter/
    2. If tramadol isn’t helping you, you shouldn’t suffer for another 3 weeks before your next apppointment. Call your neurologists office again and ask to be put on another medication. Be persistant.
    3. You mentioned having ear blockage issues. I have no idea if these are related. What I did notice is that you said you didn’t understand what your doctor was telling you about this issue. In your current state of pain and exhaustion, there is no way you’re going to remember everything a doctor tells you. If you can, bring someone with you to help piece it all together. Or video tape your appointment.
    4. Make sure all your doctors are talking to each other. Sounds like you probably see different specialists for your various conditions. After each appointment, a doctor should be giving you a summary of the appointment and a list of medications. Share that with your other doctors any time something changes. Drug interactions can be dangerous, so it’s important that every treating physician understands what’s going on with all aspects of your health.
    5. Lastly, try to find a Headache Specialist. This is a neurologist who only treats Migraine and Headache patients. Here’s a list of those trained in the field:
    http://www.ucns.org/globals/axon/assets/10300.pdf

    I hope you get some relief soon!
    -Katie

  • Katie M. Golden moderator
    5 years ago

    I hope your headaches have improved over the last week. I’m so sorry you don’t have anyone to go with you to appointments. If you don’t have a good feeling about your neurologist and don’t feel he/she is listening to you, don’t be afraid to get a second opinion. You shouldn’t have to be in pain for this long!
    -Katie

  • spiderlady76 author
    5 years ago

    I started a diary the day I joined here. Feb 7th. I keep calling them. Im thinking of switching doctors because of this situation. There is no one to come with me to appointment. I don’t have a support system. My family seem to think my narcolepsy is all a lie and I’m just crazy. Yeah, I see a therapist. I think my doctors are communicating together. I know my PCP and sleep doctor are not truly sure about my neurologist.

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