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Treatment Experiences: My Attempts with Zonegran

I’ve lost count of all the different Migraine preventive medications I’ve taken over the last 16 years. It is, however, quite a wide range; from Elavil to methadone, and Lithium to oxycontin.

There have been times when the frequency and severity of my Migraines has been reduced, but they never go away completely. I take medication to prevent Migraine attacks in conjunction with supplements and vitamins. In addition to medications and supplements, I’ve tried complementary therapies such as biofeedback, massage, physical therapy, aqua therapy, acupressure, yoga, cranial sacral manipulation, and chiropractic work. I even had a two level cervical spine fusion.

Before our family relocated to western New York State where we currently live, we spent almost 10 years living in western Massachusetts. It was during this time that I sustained a traumatic brain injury and life as I knew it would never be the same. To make a really long story short, in attempts to figure out a way to feel better and reduce my chronic head and neck pain, I saw a variety of doctors. One of these doctors was a compassionate and intelligent neurologist, but unfortunately not a Migraine specialist. His area of expertise, as I would later find out, was brain tumors/cancer. While he worked diligently attempting to reduce my daily pain, he didn’t have much experience in complicated Migraine cases like mine. To give him credit, he did contact colleagues at the Mayo Clinic in Rochester, Minn. and around the country to see if there were other options for me. He was the first doctor to suggest biofeedback and cranial sacral manipulation, looking for almost anything to help ease my pain.

One medication we tried was Zonegran. He asked me to contact him, keeping him updated on how I was responding to the medication and if I was experiencing any unwanted side effects. I reported that my pain had not subsided and I was drowsy and a bit nauseous. He recommended that I take it at bedtime instead of in the morning to help with this and then wanted me to increase the dose in another week. After each dose increase came more sleepiness and nausea and with no significant pain reduction. Within a few weeks, per my doctor’s orders, I tapered off Zonegran.

What I didn’t know then was taking medication for a only few weeks wasn’t going to give it enough time to work. It can take up to three months to see a reduction in the severity and frequency of Migraine attacks when starting new medications. It can take just as long for any potential side effects to lessen. In addition, if there are dose adjustments during this time, the clock resets itself, so to speak. We went on to try several more medications before I finally tried methadone. When we moved to the suburbs of Buffalo, New York, I saw a new doctor and tapered off that medication. But that is a story for another time.

In 2008, after trying a variety of medications, my doctor suggested Zonegran again. I began on a low dose and again experienced the same drowsiness and nausea as before. This time, however, I knew to give this medication more than a few weeks to see if these bothersome side effects would dissipate over time….And they did. As I reached the therapeutic dose of Zonegran, my Migraines seemed to go on a temporary freeze. They didn’t get worse, but they didn’t get much better. I was however, becoming increasingly agitated, easily irritated and depressed. With minimal research on depression and Zonegran, it appeared that my concerns were valid. Anticonvulsant medications can alter moods; make you cranky and more depressed among other things. I spoke with my doctor and we agreed that Zonegran wasn’t the drug for me. I switched to Keppra, another antiseizure medication used for Migraine prevention. As soon as Zonegran was out of my system, my irritability, moodiness and depression went away. It was good to feel like myself again. I didn’t realize how down I was until all of Zonegran was out of my system.

That’s my personal experience with Zonegran, and of course experiences can vary dramatically from person to person. How about you – what has your experience been with it? Would you like to share it with us?

The purpose of the Treatment Series is to share personal experiences with migraine management techniques. Do not start, stop or change any treatment program without the advice of a qualified healthcare professional. For clinical data and safety information, please visit our Migraine Treatment pages.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Cindi Moyer
    7 years ago

    I’ll add my thanks with Ellen’s. I think sometimes our physicians forget that many of us have a LIFE in addition to trying to cope with a new drug that takes us for an unpleasant ride. It wouldn’t be as bad if all I had to do was take the meds and find out what happens, but there is a JOB and FAMILY to take care of as well for most of us that complicate that task. Honestly, because I don’t write it down, I forget what side effect happened on what day as they blur into one another. Thank God for friends and family that often do that for me. There are days in this journey that I wonder if I will recognize “well being” if I ever really arrive.

  • Maureen Gallagher
    7 years ago

    I too was on Zonegran and Keppra but had suicidal thoughts and had to get off of them ASAP. My headache specialists is going to try to put me back on Topomax (have not been on Topomax for almost 10 years now) plus trying botox injections besides daily maintenance meds…I am hoping for some relief soon….having a daily headache/migraine is not the way to live life. Thanks ladies for your comments…Maureen from Philadlphia.

  • Sheri Johnson Zakis
    7 years ago

    My experience with Zonegran was nothing short of terrifying. I felt extremely depressed, nauseous, fatigued to the point of not being able to get out of bed. I really thought this was how I was going to live the rest of my life and that I was going crazy. When I convinced my neuro that it was the Zonegran that was having this effect she wanted me to step back down over a 3 week period. I absolutely refused bacause I was pretty sure I wouldn’t make it another 3 weeks. Thankfully, after taking the last pill within 24 hours I felt like a new person. It is incredibly frustrating, again that we have to fight to be heard and reinforce that we do indeed know our own bodies and we really do know what is going on with them!

  • Suzanne Johnson
    7 years ago

    I take 100mg Zonegran 2xdaily as a preventative measure for my migraines. The only good I’ve found it that I haven’t been to the ER since. I still get them almost daily and they vary in intensity as they always have. I have depression and take a medication for that so I’m not sure if the Zoengran makes it worse or not. I do have alot of big downs though. My biggest problem with the Zonegran are the side effects: My hands shake terribly (I always try to hide my hands because someone always makes a big deal out of it as though I’m a druggie or something), my short term memory is a mess. I have to keep notes on everything & everywhere. I also have issues with confusion, my speach is slurred and I forget words all the time. My motor skills are way off balance. I’m off balance. I drop things, have a hard time with the dexterity of my fingers and bump into walls, chairs, etc. all the time. I have tried many other anticonvusant meds and they didn’t work &/or side effcts were unbearable. Topomax made me suicidal & I had just about every side effect listed intensly. I decided a mommy with migraines is better than no mommy at all. Being on Zonegran makes me dumb & clumsy but it has lessened the intensity of my migraines so I don’t have to go to the ER. Is that enough to make it worth it? I don’t know. I ask myself that often, the answer changes with my moods and pain levels. I do know I am going to look into Keppra before my next neurology appointment.

  • Ellen Schnakenberg
    7 years ago

    Thank you for sharing this Nancy! You’ve shared some really good information about preventives in general in addition to your personal experience with this single drug. It’s so easy to lose patience when trying a new drug, especially when our doctors forget to tell us about the necessity of time for things to work and for side effects to lessen.

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