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Amiptripyline or back to Topomax or try Zonegran? Help!

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Posted 7/20/2008 7:59 PM (GMT 0)

I was on Topomax for almost 3 years and by the end was taking 2oo mg a day.  It wasn't a cure all but it did reduce the frequency and the severity of my migraines that at least I did not live in fear of them as I used to.  But in March I was diagnosed with 6 kidney stones.  about 7 years ago before, long before the Topamax I also had a kidney stone so I was probably at an even higher risk for developing them with the Topomax.  I really didn't still want to experiment with other drugs but my neuro talked me into it.  I tried Inderal first and it was diastrous.  Not only couldn't I function because of the fatigue, I almost ended up in the ER with a migraine after several days.  He then put me on amitripyline.  Some fatigue that I have almost adapted to but even with starting to walk 2.5 miles a day and cutting back calories I have gained 10 lbs in the last 6 weeks.  I am very frustrated.  I am a teacher and have the summer off and know myself that I probably won't do all this walking when school starts again.  It has helped my migraines about the same as the Topomax did.  Not a cureall but bearable.  But the weight gain really upsets me.  I already told my neuro at my last appt about the weight gain and he just told me to go to Weight Watchers.  Well I am following the WW plan and it's not working.  I see him again in about a month.  Do I stay on this or ask to go back on Topomax or ask for something else like Zonegran?  Although he has never mentioned Zonegran.  In fact he said there are only 4 alternatives as preventatives.  Topomax, inderal, amitripyline and depakote.  He said depakote has even worse side effects.  Any suggestions from those that have tried other preventives?  I suffered severly for many many years with killer migraines till I started on Topomax and with it and then Maxalt as an abortive I could deal with most of them.  Just maybe once or twice a year did I have a spell that was really bad instead of once a month as it used to be.  I appreciate any help.

Posted 7/20/2008 10:42 PM (GMT 0)
Hi Shadygap!

I found that betablockers really helped in preventing my migraines headaches. Betablockers are normally used in high blood pressure or in my case, heart arrythmias, but it wouldn't hurt to discuss it with your doctor. I noticed after being out on the betablocker, that I stopped having migraines. Have you tried Imitrex or Zomig inhalers?
Posted 7/20/2008 11:54 PM (GMT 0)
Inderal is a beta blocker and I tried it and it did not work for me at all.  I have imitrex injections to use if Maxalt doesn't work but they aren't all that effective for me either.  I have never tried the inhalers.
Posted 7/21/2008 1:51 AM (GMT 0)
I wouldn't rule out a whole class of medications just because one med in that class did not work. Sometimes one med in a class won't work, but another one could be your magic bullet.

However, I would think if you have already had success with Topamax that you would want to try Zonagran next since it is in the same medication class as Topamax. Depakote is also in this same class. The one thing to keep in mind is that the side effects listed are all potential side effects and not everyone's experience with side effects are the same.

Good luck!
Posted 7/21/2008 10:35 PM (GMT 0)
Hi! I've been on all of these meds for preventatives. Topomax was a wonder drug for me, but it caused breathing problems. Beta-blockers were not that effective; Depakote not only failed as a preventative but I also gained 26 pounds in 6 weeks. I'm now on Zonegran and have been so since January. I have had mixed results; it's fairly effective, fairly well tolerated. Elavil (amytriptyline) does work very well for migraines, Fibro, etc., but it causes steady, unrelenting weight gain. You can go to Weight Watchers for the rest of you life and it's not going to matter (trust me and the extra 40 pounds I carried from that!!)

Mommabear is 100% right!; I happen to be fairly sensitive to meds and if there's a reaction to be had, I generally will have it! But with trial and error, we have found a comfortable combination that will work for me. Everyone's migraines are different as well; I do not have the type that respond well to beta blockers and triptans, actually, they make mine worse.

If you have a good Dr., one whom you communicate well with and one with whom you are comfortable with, then work them. I have had meds that worked great for a while and then boom, nothing! and have to start over again. Fortunately, my Dr. is great, he understands my idiosyncrasies and concerns and he works with me all the time.
Good luck in your journey.
Janice
Posted 7/24/2008 9:03 AM (GMT 0)

Personally, I am the queen of getting all the bad side effects that come with a medication.  Topamax was the worst, but others, like Depacote was almost as horrible.  I gained about 80lbs(post-gastric bypass!!!), got a weird eating disorder...would only eat one food for weeks, then switch to another.  Constant dry mouth, which rotted all my teeth in less than a year...you name it.  Weight Watchers is for people that have normal issues with over-eating or eating the wrong things.  Any doctor that would tell you "to just go to Weight Watchers" for weight gain from a medication side-effect is one lousy doctor.  I'd dump him pronto. 

There are probably 20-30 effective migraine preventatives/abortives being used these days.  After 35 years of migraines, since I was eight, the only thing that works for me these days is Stadol Nasal Spray, a narcotic.  I'm also taking Atenelol as a "preventative", but more to shut up doctors who are "phobic" about giving opioid medications to relieve migraine pain.  I average about 1-2 bad migraines a week, so I'm constantly seeing new doctors that I have to explain my history to, just so they will follow my PCP's standing emergency treatment order.  I ran into a new doctor about a month ago who refused to honor my treatment order.  She stated that she only used imitrex and reglan for migraines.  Imitrex makes me violently ill, and makes my migraine worse, so there's no way in heck that I'm going to accept that treatment.  Patients are not the same, thus, treating all migraines the same way makes no sense.  This doctor was "take it or leave it", so after being in the ER for almost six hours, I had to walk away without any help.  Not a position I'd wish on anybody.

Luckily, I'm going to see a new migraine specialist in October.  Apparently, it takes four months to get a new patient referrral.  Got through a bad day today with my abortive, which makes me sleep.  Thus, I've been up all night making up for lost time.  I hope you all can find something that works for you, without the bad side effects.

Leigh Ann cool

Posted 7/25/2008 2:01 AM (GMT 0)

I'm on Zonegran for seizures and migraines. I really feel no effects on the migraines so we are on nubmer 6 of the preventatives and have tried 2 narcotics and were still working at the right combo. My nuero says everyone has a combo you just have to find it. I do have friends that swear by the Zonegran for migraines that is all they take, for me uh, no.

Mine are WHOPPERS and sometimes with auras. I have even had black outs and have to be taken to the ER by ambulance. Usually, if I can't get it to break after a few days my nuero, if he can- will get me in for a Stadol shot that will do the trick but knock you out for two days.

If you search migraine preventatives you will find a list of over 50+ and most were not created for migraines at all.

Good Luck! :-)

Posted 7/25/2008 3:59 AM (GMT 0)

Hey Migrainegrl,

Zonegran is listed as an "anti-seizure" medication, and isn't even mentioned as an "off-label" medication for migraines, so it suprises me that you know people that are using it as such.  It's very odd that your doctor won't give you a Stadol shot for two days.  You are very lucky that it will knock you out for two days.  Stadol works for me as an abortive, but doesn't do much for an all out migraine.  I have to get a shot of 3mg Dilaudid and 50mg of Phenergan and even that won't knock me out.  I'm usually a slight bit woozy after the shot, but then I'm wide awake for hours.  I usually end up sleeping the next day because I was wide awake the whole night before.  I'm much more of a night owl these days. 

Out of curiosity, where do you live where doctors prescribe Zonegran for migraines?  I've never heard of it in any of the areas I've lived in on the east coast.

Maybe you could Stadol Nasal Spray as an abortive.  Taken with Phenergan or Vistaril, it usually does a pretty good job.

Good luck,

Leigh Ann

Posted 7/26/2008 12:54 PM (GMT 0)
There are many people who use Zonegran as a migraine preventative. Considering only four medications are FDA approved for the use as a migraine preventative at this time, the rest of the other 100+ medications currently used are used off-label.

Of the four FDA approved medications, two of them, Topamax and Depakote, are anti-seizure medications. The list of preventatives I have seen contain over ten anti-seizure medications on it. Earlier this year a fifth medication (another anti-seizure medication) failed testing to be approved as a migraine preventative.

One of the medications I currently take is Topamax. If the side effects of it were too much for me, Zonegran would be the next medication I would try. I could not tolerate the Depakote side effects. My doctor partners with me in my migraine treatment and he would write a prescription for Zonegran for me without any hesitation. I also live on the east coast.

Good luck!
Posted 7/28/2008 2:48 PM (GMT 0)
Yikes reading this scares me, my dr just gave me this med to try because the Nortriptlyn and me aren't friends and I had a bad reaction to it. But I am doing Weight Watchers and trying to lose weight and the last thing I need is to take a medication that is going to hinder that. Can I ask why it makes you gain weight?? What changed so much when you started taking it to make you gain 10lbs or 26lbs??
Posted 7/28/2008 7:02 PM (GMT 0)

Hey Nicole,

You didn't say which medication you were just prescribed.  Which one was it?  I didn't have a weight gain problem with Topamax, but it turned me into a mental zombie, with some significant permanent memory impairment.  However, I was on Depakote previous to that, and I gained about 80lbs in roughly 6 months, in spite of the fact that I had just finished losing 150lbs thanks to a gastric bypass.  The weight didn't come back off.  If you're worried about weight gain or serious damage to your teeth, avoid the Depakote.  Please let us know what which drug you are taking, so we can give you better info if you need it.

Good luck,

Leigh Ann cool

Posted 7/28/2008 9:59 PM (GMT 0)
I am now on amitriplyine and gaining weight despite exercising and cutting calories.  I am thinking about asking my neuro about Zonegran next month when I see him although he has never mentioned it.  I wonder if I can get him to try it. 

Posted 7/29/2008 2:37 PM (GMT 0)
I was just perscribed amitriptlyn but don't want to gain weight after working so hard to lost weight and to keep it off. I won't go the topamax route was giving it in the hospital when I was there for almost a week and it didn't do anything for me. I was taking Nortriptlyn but only for a week because it made me feel like I was having a heart attack and raised my blood pressure. So for right now I am using maxalt or advil when needed just depends on how bad the headache is
Posted 7/29/2008 6:21 PM (GMT 0)
A lot of people are saying they have gained a lot of weight taking various drugs, particularly amitriptlyn. I have been taking it for several years and have had no problems with weight. Are you sure it was from this? I eat very healthy and have never had to worry about my weight. Are you gaining the weight because you are eating more from taking the drug (hungry more often?) or are you gaining weight even though you are eating right?
Posted 7/29/2008 6:25 PM (GMT 0)
One quick way to lose weight is to eliminate everything they claim triggers migraines. You might die though.
Posted 7/29/2008 6:49 PM (GMT 0)
Cranky 1, I'm with you on the paranoia of Drs. prescribing any narcotic. They really do help me and if a doctor was having the pain I have, I'm sure he would not hesitate to take them also if he has exhausted other routes. I use mine sparingly (not everyone is an addict) but I really could use a stronger one. I can't tell my doctor that though. He may quit prescribing the small amount that he is OK with.
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