Migraine

I have been on Zonegran for about 2 months. I am very sensitive to meds. I was up to 150mg, but had to decrease it to 125mg because I was having very loud negative self talk (and I didn't like what I had to say) . My doctor said to take it in the morning, but when I did that, I really didn't feel like eating for most of the day. I have been taking 100mg at bedtime and 25 in the morning, but am feeling thick in the head during the day.

For those of you who have experience with Zonegran, what have you found to be the best time of day to take this drug, and why are you taking it then? Any problems taking it at other times? Is it better to take it a couple of times a day to keep the drug in your system at a more equal level, or does the long half-life (up to 62 hours) make this unimportant?

Your collective advice is much appreciated!

Thanks.

Hello and welcome to our forum family! Our goal is to provide everyone with the information and support that we all need to manage our Migraines and/or headaches. To that end, we consider this a “safe harbor,” where nobody tries to sell us anything, and we all use “family-friendly” language so parents are comfortable letting their children read the forum with them.

Please take a few minutes to review our policies and guidelines along with the other information in the START HERE folder. For information about Migraines, a good article to begin with is Learning About Migraines - Where to Start.

I take Zonegran every day, always at night. My doctor and pharmacist both recommended it that way. Most doctors say it doesn't matter what time you take it because of the long half life. It may be a good thing to take it at bedtime if it is making you nausea, but talk to your doctor first, please.

Now, what about this "very loud negative self talk?" Zonegran is in a class of medications, antiseizure meds, that may have some potentially bad side effects. I know if I take more than 200 mg. I get very depressed, but at 200mg I am ok! I'm giving you this article so you have the information you need: Sponsored by: FDA urges warnings on anti-seizure meds

Thanks, Nancy. The negative self talk was not of suicide. It was more self-flagellation for withdrawing from a PhD program after I had already done my dissertation research. Those higher level thinking skills that used to come so easily to me pre-migraine were just not there. Migraine makes it hard for me to think.

Thanks for your advice. I see my headache specialist tomorrow. I'll ask about taking it all at night.

Hi, MamaD! Add a welcome smoosh from me to you to your pile o' welcomes that Nancy started.

First and foremost, talk to your doctor, like you intend to, but your pharmacist might have some hints they could share with you, too. Adjusting to meds can be such an adventure.

Hi Dragon
Smooshes back. My neuro suggested I experiment taking the Zonegran at different times of day while keeping the daily dose at 125mg, to see what works best for me. He said that some people have better pain control if they take the Zonegran more frequently than just once per day. So I will fiddle with the time-o-day and post back to let you know.

This is the frustrating thing about Migraine treatment. Everything seems like such a crap shoot. Try this, but it takes a few weeks to taper up to a therapeutic dose, and a few weeks to taper off because maybe it won't work - or causes intolerable side effects. Then try adding another scary med (today he suggested an MAOI) to see if a particular cocktail of drugs helps control the pain better. Or maybe it will just incapacitate you for a few hours (or days) until it works its way out of your system.

And he also used the words "Chronic illness" which I hated to hear. Although I have been dealing with CDH since Nov. 2006, I was hoping that this would all be temporary and I could get back to my regular, normal life before migraines. Will my life always revolve around my headaches - keeping my journal and avoiding triggers? I see that some of you have "tickers." How wonderful it must be to have pain-free days, weeks, and months at a time. Right now, I am happy to string together a few good hours. Today has been a very good day. Maybe I need to start a ticker, too!

Here's my dream: That someday, Migraine treatment will reminiscent of peptic ulcer disease. Remember when we used to think ulcers were caused from stress or diet? Now we know it is caused by a bacterial infection, H-Pylori. Oh, now wouldn't it be loverley to have a simple solution to a complex problem such as migraine?

Yeah, the hurry up and wait and tweak and hurry up and wait some more thing can really be a drag sometimes, particularly when the adventure gets rather random and unpredictable. I'm with you in thinking that MAOI's are a pretty daunting proposition to consider. We have had some folks have good luck with them. The diet is so restrictive, though. Most people reserve MAOI's as a last resort. Certainly, there are all kinds of other preventative meds you could ask to try first. Want a list you can take along to the doctor? We've got a nice list here that you can print out.

Your life doesn't always have to revolve around headaches. If you're diligent, studies have shown that the odds are in your favor. An effective preventative regimen can be found for upwards of 98% of us. That's nothing to sneeze at. I can tell you from experience that it's well worth it to hang in there and keep at the search. I went from daily migraines and migraine/tension combos to just a couple migraines a month. It takes some effort, and it takes some time, but you can claim life back.

quote:

Originally posted by MamaD:
Hi Dragon

This is the frustrating thing about Migraine treatment. Everything seems like such a crap shoot. Try this, but it takes a few weeks to taper up to a therapeutic dose, and a few weeks to taper off because maybe it won't work - or causes intolerable side effects. Then try adding another scary med (today he suggested an MAOI) to see if a particular cocktail of drugs helps control the pain better. Or maybe it will just incapacitate you for a few hours (or days) until it works its way out of your system.

And he also used the words "Chronic illness" which I hated to hear. Although I have been dealing with CDH since Nov. 2006, I was hoping that this would all be temporary and I could get back to my regular, normal life before migraines. Will my life always revolve around my headaches - keeping my journal and avoiding triggers? I see that some of you have "tickers." How wonderful it must be to have pain-free days, weeks, and months at a time. Right now, I am happy to string together a few good hours. Today has been a very good day. Maybe I need to start a ticker, too!

Okay now I am thoroughly and utterly creeped out. I'm supposed to start taking Zonegran tomorrow. With something like a 65 hr half-life, I'm already worried that if I have a bad reaction I'm going be out of commission for literally days.

My last attempt at a anti-seizure med (topamax) caused a migraine so bad I could hardly open my eyes. I'm already in the 0.1% for people who have drug allergies so weird half the docs have never heard of them.

Hi MamaD and Welcome to the forum

When I took Zonegran, I took it at night. Just like Nancy, my doctor recommended I take it at night to avoid any nausea issues, which I never had.


Amy-I know how nerve wracking it can be to start a new med, especially when you've had so many issues with your previous meds, but, you'll never know unless you give it a shot, right? Can you start at the lowest dose possible and then taper up from there?

Hello!

Yep, What Nancy and Laura said went for me too. I took my Zonegran at night when I was on it.

D.D.
I have been lurking on this site off and on for about a year. I only decided to post when I had a question that hadn't been asked yet. I have referred to the site's list of migraine meds several times - even last night as I went over the names of drugs from my neuro that I haven't tried yet.

I've tried lots of different combos, and found the most success with methergine, but developed mitral valve thickening so I had to stop taking it in July. Therefore, I had to start finding something else that would work. I am currently taking Zonegran 125 mg (which, at the proper dose for me has fewer side effects than Topamax or Keppra did), Pamelor, B2, 200mg twice a day, Fish oil, Magnesium 250mg twice a day, and CoQ 10, 100 mg, three times a day. Oh, and a low dose hormone patch.

Amoler, I feel your pain. I, too am VERY sensitive to meds. When I was on Topamax, I also experienced a very rare side effect, but if it's rare, it usually happens to me. DD is right. You have to think positive to yourself that THIS time, it will be THE ONE. And if it's not, I guess that is one more we can cross off the list. It just takes SO LONG to find the one that's right. It's frustrating because we all have lives that we need to get back to. I wish you the best of luck with the Zonegran. I started at 25mg and worked my way up from there. But please be on the lookout for those depressive side effects. They crept up on me slowly, but it only took a day of reducing the dose before they went away.

Thanks, everyone, for your support!

I took 25 mg of Zonegran last night.
I feel like somebody puked me off a cliff. Every muscle in my body hurts and I've lost half the feeling in my fingertips. I didn't know it was possible to have cramps in the center of my palm or my forearms. My leg muscle shake when I walk. ????

Mama D,
I hear you on the frustration of finding the right combo of meds that work for you. Like you, I also relish in having simply an hour or two of low pain moments. THe constant pain is torture. I hope you find the right time of day the take your Zonegram so it's most effective for you.

Amy - uh oh. Not good. I hope you're a little better today. And it sounds like Zonegram is just one more med to cross off your list

Meli

Hi,
It's been about a month, so I've had time to tinker with the times to take the Zonegran and record the results. My best results seemed to be to take a small portion of my total dosage (25 mg) in the morning, and the rest in the evening. This helped with pain relief throughout the day, and did not cause excessive nausea or fogginess.

Zonegran comes in dosages of 25 mg, 50mg and 100mg.

Awesome news MamaD

Hey guys,

Small doses are always a good idea to start with some medications and it seems if we are more sensitive to medication the better that is. Don't forget it may take up to three months to see a reduction in frequency and severity in your Migraines while you start Zonegran...hang in there.

And amoler - try not to talk yourself out of a new medication. Try telling yourself (I do this when I have to do something I really hate!) you can do it, the medication will work and my Migraines will be reduced. I tell myself this when: the basement floor is covered with laundry, my head and neck hurt and I ache all over. I know I can do one load at a time. It just won't get done the way it did before, in one day. See what I mean? I try to talk myself into things.....give it a try with new medications