Menstrual Migraines helped by Lupron; now worse after hysterectomy?

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    My name is Dawn, I'm 31 years old, married with 2 young children.  I have been suffering with true menstrual migraines for 6 years.  My neurologist and gynecologist decided to put me on Lupron for 6 months, which shuts down all hormones to kind of do a test to see if the hysterectomy would work (in their words not mine!). 

     

    I was migraine free for those months.  They decided to do a full hysterectomy (I was 27 years old at the time).  I was immediately put on estradiol after surgery, and was migraine free for 1 year.  Then my migraines started coming back once a month and gradually worked up to every 15 days, which I suffer with constant migraines that won't let up for one week before I can go in for shot (on the 15th day since last shot usually) otherwise it won't work...the timing has to be just right.

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    I have been on literally every preventative and abortive.  So now I am stuck in this wicked cycle of Demerol injections.  They take the migraine away, at least until the next one comes. These migraines are very predictable as we can mark down on the calendar when the next one will hit.

     

    My husband is hell bent on the idea that the estrogen is causing it, but I was on the estrogen when I was migraine free for one year...So it couldn't be that right. What's your thought on natural estrogen?  If I still get the same benefits from the synthetic, then I would be willing to try...could that decrease my migraines?

     

    My neurologist keeps telling me there is nothing they can do.  My husband and I are trying to find answers on our own but are coming up with nothing.  I have 10 days out of the month migraine free.  I am trying to stay positive and just enjoy the days that I am not in pain, I guess I just feel like there is something that these doctors are missing.

     

    Can you make any sense out of why my migraines would go away during the Lupron, and 1 year after surgery and then not only come back once a month like before my surgery, but twice a month now?  It's like my body is somehow still cycling...but more frequently, and much worse! Dawn.

     
    Answer:

    Dear Dawn;

     

    Hysterectomies performed in an attempt to reduce Migraine are a huge gamble. They can make things better or worse or make no difference at all.

     

    The Demerol injections may well be adding to the problem by causing medication overuse headaches (MOH), aka rebound. Pain medications need to be limited to two or three days a week to avoid MOH. For more information on this, please see Medication Overuse Headache - When the Remedy Backfires. Additionally, newer research indicates that prescribing opioids such a Demerol for Migraines is associated with increased risk of transformed Migraine. For more information on this, please take a look at Transformed Migraine - Risk Increased by Some Medications.

     

    Migraines and bodies often make no sense. What works for a period of time may not work again. When discussing hormones, it's important not to limit the discussion to estrogen. Please watch our short video Migraines and Hormones.

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    You said you "have been on literally every preventative." The good news is that there have to be preventives you haven't tried yet. Don't lose hope about preventives. There are now over 100 medications and supplements that can be used for Migraine and headache prevention. The frustration of trying to find what works for us can make it seem as if you've tried it all, but with so many possible preventives, it’s literally impossible to have tried them all. See Migraine preventive medications – too many options to give up! for more information.

     

    At this point, it's time to move on to new doctors, specifically a Migraine and headache specialist. It’s important to note that neurologists aren’t necessarily Migraine and headache specialists. Take a look at the article Migraine and Headache Specialists - What's So Special? If you need help finding a Migraine specialist, check our listing of Patient Recommended Migraine and Headache Specialists.

     

    Good luck,
    John Claude Krusz and Teri Robert

     

     

    To review other questions from our Ask the Clinician Column,
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    If you need help finding a  Migraine and headache specialist,
     visit our listing of Patient Recommended Specialists.

     

     

    About Ask the Clinician:

    Dr. Krusz is a recognized expert in the fields of headache and  Migraine treatment and pain treatment. Each week, he and Lead Expert Teri Robert, team up to answer your questions about headaches and  Migraines. You can read more about Dr. Krusz or more about Teri Robert.

     

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    Last updated May 26, 2010.

Published On: May 26, 2010