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A note to those who are considering Zonegran

I was just on MyMigraineConnection.com, perusing articles and looking up information on Zonegran withdrawal symptoms. To my chagrin, there’s a general lack of specificity when it comes to lists of withdrawal symptoms. As the drug is prescribed off-label for Migraines (it’s an epilepsy treatment), the medical websites all tend to point out that one should exercise caution while weaning off Zonegran due to increased risk of seizure and “other side effects–talk to your doctor.”

So far my withdrawal process has been a lot easier than I’d expected. I’m halfway through and am sure my happiness with daily life has a great deal to do with my increased energy (a combination of getting off the energy-zapping Zonegran and getting all that B2 in my vitamins and my Petadolex, as I have mentioned before). Today I really took a turn for the worse, however, and hope hope hope it was just for one day.

Last night I went downtown with friends for a low-key night of chatting and carousing. Around 9:30 I decided to walk home, feeling a headache coming on. It was such a low-grade pain that I figured getting into bed early with a book and some chamomile tea would heal me right up. Boy, was I wrong. A raging Migraine headache took over within an hour of my arrival home. My stomach felt swirly but I was too nauseated to fetch a wastebasket to use as my emergency receptacle should I become sick to my stomach. (Luckily I didn’t end up needing this option in the first place.)

This morning I woke up in a foul mood. A gray mood. A gray mood with fiery, jagged edges that caused me to lash out at everything from my boyfriend (who was suffering from a Migraine himself) to the dishes in the sink to the broom to my neglected plants. I. WAS. EXTRAORDINARILY. ANGRY. AND. BITTER. For no known reason. The closest I’ve come to such unreasonable anger would be in times of PMS, but I just finished my period, and this mood was far more sour and impossible to climb out of than any routine PMS funk.

What was I going through today? I see that agitation and irritability are side effects of Zonegran withdrawal; they can also accompany some people’s postdrome stage, though feeling anger at this stage is infrequent for me.

In my rather fruitless search for Zonegran withdrawal symptoms, I did find a few pages on MyMigraineConnection.com on which people solicited the advice of others who may’ve tried Zonegran–what’s our opinion of the drug as a Migraine treatment?

Here’s my response. For those of you who read my blog frequently, you’ll see nothing new. But it felt good to put it on paper–er, screen.

I have been on Zonegran for 22 months. The frequency, severity, and duration of my Migraine attacks decreased overall, but I still had super-duper Migraine months (especially during hot Augusts or stressful holiday times, for example) and was relying on my acute medication, Relpax, just as much as ever.

For me, the side effects of Zonegran far outweighed the positive. My doctor mentioned the possibility of some side effects, but both he and the drug literature mentioned that the effects would probably go away within 4-6 weeks. This was not the case for me. I lost a LOT of weight and the more bothersome side effects–memory loss, difficulty word-finding, near-constant fatigue, and simply a general feeling of dumbness!–were harder to pin down and took longer to emerge. I thought I was going nuts until I found a whole community of people out there who’d had the same things going on in their brains.

I’m now going through the withdrawal process and will be off Zonegran in three weeks. Petadolex is my new herbal drug of choice, and thus far it’s working well!

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

  • genieskinner
    4 years ago

    I always appreciate your blog posts! This time I happened upon this old post from 2008 quite by accident while researching side affects for Zonegran. I wanted to take a moment to share, in case there are others out there considering this medication, that this medication has been the perfect answer to treating my migraines. I was looking up side effects only because when I was at the pharmacy picking up my prescription, the pharmacist mentioned managing side effects and I asked him “what side effects?” He seemed surprised that I didn’t seem to be having any. I went researching to find out what perhaps he could be so concerned with. Do I have any side effects from Zonegran? Maybe…I might. I just know that the quality of my life has improved so much in the 8 months that I have been on Zonegran that I cannot imagine not taking it.

    Zonegran has been been 99.9% effective at controlling chronic vertigo, aura, and loss of vision/visual disturbances associated with migraines. I still have episodes of sever head pain a couple times a month, which I treat with DHE Injections. DHE is effective most of the time, with only an occasional re-occurance within a week. We are hoping that botox along with the Zonegran will reduce the head pain episodes. I can live with the head pain much better than I was able to live with the chronic disabling vertigo – which was so bad I was unable to walk without holding on to walls and it never went away EVER, along with the loss of vision, it was like being on the octopus ride at the fair non-stop while drunk. Within a week on the Zonegran, the vertigo was gone, and the head fog with aura gone.

    Zonegran may not be the answer for everyone as a migraine treatment. But it may be the answer for some, it was for me.

  • christinecrosby
    7 years ago

    I notice this thread is old, but I came across it looking for “Zonegran withdrawal.” I believe in paying it forward and, hopefully what I have to say can help someone else.

    I took generic Zonegran for just under 6 months for migraine prevention. It is hard to say if I got any benefit to it at all because I was also postpartum. I seemed to tolerate it well until just about a month or two ago when I started to feel bone pain in addition to the brain fuzziness I had prior to that.

    The brain fuzziness was nowhere near what it was when I took Topamax, but it was more like when I was stopped at a light, I would just kind of lose focus. I had to pull myself out of it when the light changed and the same thing when I was bathing my 1 and 3-year-old. It was more like when they were playing in there and I didn’t have to be exactly hands-on, but should someone fall, it took a few seconds for me to react and I didn’t like that I felt like I was putting my children into a dangerous situation. I also noticed my hair on the floor which had stopped once the postpartum hair shedding was finished. And another side effect I noticed was that I had less and less patience for my children. I felt like I was a raging lunatic at times.

    My doctor is not certain that I should come off of the drug, but he did agree that perhaps I have reached whatever benefit from it. Anyway, I had only two 100-mg capsules left and I had taken one the night before the appointment. He told me to finish out the pills, but it didn’t make sense since it would just be prolonging it and I couldn’t break open the capsule to take less. I just decided not to finish them. That was about 6 days ago. I haven’t really noticed any side effects until day 5. I noticed my vision was a little different and I had trouble sleeping. Today I have had paraesthesia in the bottom of my lower lip (like Novocaine wearing off). It is hard to say whether I will have more symptoms, but with such a long half-life, it seems like I may be nearing the end (correct me if I am wrong) regarding what little remains in my system and I can really feel it coming off.

  • Judy Giuliano
    7 years ago

    I have been on Zonegran for 8 months and my dr wants me off of it at I am experiencing too many negative side affects, memory loss, irritabilit, loss of words, very tired, unsure of decisions, loss of concentration. I didn’t want to go on it to begin with but he told me probably only two months. My migraines improved and then got worse again. I will start coming off Zonegran Friday. I am on 75 mg. I will come down 12 1/2 each day for two weeks and then drop another 12 1/2 each day for another two weeks, continuing until I am off this terrible drug. Does that sound like it will work? I hope I will not experience migraines or mood problems.

  • Jan Giuliano Sutter
    7 years ago

    Hang in there mom, just think where your going to be in a year!!!!

  • Joann Rigby
    7 years ago

    Oh my poor Judy. You are in my prayers. I hope you feel better soon. Sending you HUGS <3

  • Lauren Ashley Garcia
    8 years ago

    I am currently weaning off of zonegran and as you have stated in this blog, I am struggling with being incredibly angry for no reason at all. Also I cry at a drop of the hat. This past month has been one of the roughest ones I’ve had in years…and it’s quite a shame because when your withdrawaling you unintentionally push everyone you love away.

  • themigrainegirl
    9 years ago

    Karen, I don't remember any particular problems I had while weaning myself off Zonegran, but I do trust that you know your husband well and know when he's acting irritable and/or out of character. I'm frustrated alongside you when I hear that the neurologist was dismissive of your comments and concerns. "I've never heard of that happening" is but one of a handful of things my doctor said to me that led me to finding a replacement doctor who actually LISTENS and trusts what I'm saying.

    Anonymous, I have never tried Topamax but have some blogger friends (& regular life friends) who have had some unpleasant side effects that were quite reminiscent of what I went through with Zonegran. If you do decide to go with Zonegran, I hope it works for you. Keep us posted!

  • Anonymous
    9 years ago

    about to start zonegran from topamax. all your side effects you described are the same as the side effects i complained about on topamax, thats why they wanted to change my medicine. so i began googling zonegran to find more info. appears to be same side effects. have you ever been on topamax and if so could you compare side effects?

  • Karen
    9 years ago

    My husband recently stated taking Zoloft (50mg) for a major depression bout. He also was prescribed Zonegran (25 mg to start – work up to 100mg) for daily headaches. I knew within a couple days that Zonegran was going to be a problem – he is so sensitive to so many meds, he's hard to treat. He started feeing very hot to the touch within a couple days – and it only got worse. After a couple weeks (still at only one dose a day) his hand devloped a tremor and then visible muscle twitches – legs and arms and even his side. While Zonegran took away his headaches – the side effects were increasing. I called the Neurologist PA he saw and he SO did not believe a word I said about the side effects – he said that he has never heard of anything I was telling him. I told him that I could hardly get next to my husband because it was like a wall of heat just coming off of him – his hands were uncomfortable to even touch and of course the other problems. He told me to just have him quit – no taper down or anything – he's only been on it for three weeks. He has now been off Zonegran a couple days and wants to sleep all the time and he is irritiable and edgy.

    The side effects are slowly fading, so I'm assuming that the Zonegran, not the Zoloft was the problem. I wonder if anybody else experienced irritability, sleepiness and edginess as a withdrawal symptom.

  • themigrainegirl
    9 years ago

    Anonymous 1, Thank you for your post. I appreciate knowing more as to how and why that drug affected me as it did.

    Anonymous 2, I've never used Botox for migraines, as it's cost prohibitive for me. I don't have insurance, but if I did I might explore that option. I'm so happy it's working for you. I hope that continues–I know lots of migraineurs have found relief with botox.

  • Anonymous
    9 years ago

    Have you tried botox for your migrains? I have sufferend from migrains for over 15 years and the only thing that is helping now is botox.

  • Anonymous
    10 years ago

    Zonegran has a long half-life. That means it can take several weeks for a change in dosage to change the levels in your body significantly. This may be why you didn’t feel depressed right away when you decreased your dosage.

  • Emily
    11 years ago

    great blog! i’m 19 and i’ve had migraines since i was 10. i was put on 400 mg of zonegran a year ago. i just recently started weaning off of it and i can already see an improvement in my energy level. however, i have been feeling more depressed than ever. i found this website interesting: http://www.rsdalert.co.uk/drugs/Zonegran.htm

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