Yet another Zonegran question.....

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missvirginiagirl
Regular Member


Date Joined Jul 2008
Total Posts : 39
   Posted 2/13/2009 7:38 PM (GMT -6)   
Hello fellow migraine sufferer,

I have been back and forth the last couple months from Topamax to Zonegran, back to Topamax (had allergic reaction to generic Zonegran), now I am showing signs in lab work of early metabolic acidosis (side effect of Topamax), so my neuro wants me to try the brand name Zonegran to see if that works better (i.e. no allergic reaction). I am upset about going of the Topamax because it has worked so well for my migraines. Oh well....I took my first brand name Zonegran last night and noticed mild itching, but I am not sure if it is related as I have been very itchy lately. Just took my second one tonight. I will keep my fingers crossed that I don't end up in the ER! My question is, for those of you who have taken both Topamax and Zonegan, did you find that Zonegran worked as well as the Topamax??? I have only been off the Topamax 2 days (and on the Zonegran 2 days), and I feel the beginning of a severe migraine coming on. I don't know if it is just from the switch, or if it is because I am on such a low dose of Zonegran (25mg....my neuro was nervous about the potential allergic reaction), or if the Zonegran is just not going to work. Also, for those of you who have switched migraine meds, is it normal to get a migraine during the switch??? Any input would be much appreciated. Thank you! This has been the best support and information group out there.
-Sigmoid Resection due to sigmoidocele 3/07
-Total Colectomy due to colonic inertia 2/08
-Began having severe migraine headaches 9/08
-Sacral nerve stimulator (Interstim) implantation due to severe urinary retention caused by nerves to my bladder being damaged during total colectomy 1/09


korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 2/14/2009 10:55 AM (GMT -6)   
I've transitioned from Topamax to Zonegran twice. The first time I responded reasonably well to the topamax for a while but after a while its efficacy decreased and I couldn't tolerate a higher dose. So onto the Zonegran. I stayed on it considerably longer than the Topamax. Overall, I'd say that over the course of my first Zonegran run my relief was similar to Topamax in its ability to treat/prevent my symptoms. My very bad headaches were less frequent and my constant headache was somewhat less painful, though a tad worse than when I was taking topirimate (note: I have 24/7 headaches so I may have been using the medication somewhat differently). I think the reason that I stayed on the zonisamide (I'm using the generic and brand names interchangably here but I think that I mostly used brand name the first time and generic the second) longer was the side effects were much more bearable--possibly allowing me to take a relatively higher dose of the zonegran than the topamax (when I went too high on topamax I couldn't think, had peripheral pins and needles, loss of appetite and energy, etc. but on zonegran I mostly just experienced the cognitive impairment and lethargy). I eventually came off of Zonegran because my headaches worsened and there were, at that time,many other medications to try.

Second time around I was at much higher levels of both medications, significantly more than regularly prescribed. My headaches were much worse at that time but I was still somewhat better taking a daily preventative than I would have been without it. This time I eventually came off of both medications because of unsatisfactory results and waaaayyyy too many potent side effects. But, as before, I stayed with the zonegran much longer than the topamax.

That's my experience and I know of many others who have responded similarly. But in any case, individual reactions to each anticonvulsant are always unique. Exactly as we'd expect, the weighed combination of the effectiveness of the drug with the difficulty of the side effects determines which we stay on. So my general advice is this: Zonegran and Topamax are two of the most effective preventative medications available for migraine and other headache disorders--so if you can't take one of them you really should give the other a shot. It seems like your doctor's advice is sound--you can't keep taking topamax with acidosis problems but your allergy to zonegran might be able to be avoided with a different formulation.

As to the itching you've described, at this point I would not yet worry. While itchiness can be a symptom of an allergy (during which period a lot of histamines are released from mast cells), it's possible that your itchiness is actually being caused by the loss of topirimate levels in your body during the slow period when you're building up your zonegran levels. I have no training to back this hypothesis--only a bit of research. You see, neuron sensitivity (or hyper sensitivity in the case of migraines) can cause the release of mast cells, rich in histamine. The essential role of anticonvulsant drug therapy for headaches is to prevent overexcitation across one's brain. And, as any good doctor will tell you, it takes at least 3-4 weeks to begin receiving the full theraputic benefits of zonegran. And during this period side effects are a ttheir worst. The difficult side effects of Topamax and Zonegran often become much more manageable given a few months' time.
DX: NDPH, Recovered CRPS
RX: Lamictal, Provigil, Clonazepam, Ambien CR, Emsam, Namenda, Oxycontin, Oxycodone
PRN: Haloperidol, Zyprexa, Lodine, Zofran, Skelaxin


missvirginiagirl
Regular Member


Date Joined Jul 2008
Total Posts : 39
   Posted 2/15/2009 10:35 AM (GMT -6)   
Thank you so much for your reply, you really have cleared a lot up for me. I have developed a full blown migraine during this switch, but hopefully it is just from the switch and not indicating that the zonegran will not work. I will stick it out a few weeks and hopefully have the dose of zonegran upped as well which I am sure will help. 75mg of Topamax completely took away my migraines, and I know that is a relatively low dose, so hopefully 50 or 75 of zonegran will do the same. My neurologist is very cautious (which I like) and likes to slowly up the doses, so I will just have to deal with the migraine (hopefully will not become plural) for now. That was really interesting what you said about the mast cells as well, makes perfect sense. This is all new to me so I am trying to learn as much as I can so I can get it under control. Thanks again for your input! Have a great day!
-Sigmoid Resection due to sigmoidocele 3/07
-Total Colectomy due to colonic inertia 2/08
-Began having severe migraine headaches 9/08
-Sacral nerve stimulator (Interstim) implantation due to severe urinary retention caused by nerves to my bladder being damaged during total colectomy 1/09


korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 2/17/2009 2:47 AM (GMT -6)   
You're very welcome. If not for my headaches I'd have finished my BS in Molecular Biology a few years ago. I know enough to understand the research that I read but most of what I write about neurophysiology and the sort is a hastily assembled educated guess that I try to partner with some actual experiences. And transitioning between meds can be a killer. It's one of the reasons why it's so hard to convince someone who's posting about new found migraines that there is a VERY good chance that a good doctor can find a very good treatment for that person. As you know, it's true. Largely because we have so many potentially effective drugs that attack headache problems in many different ways. And it takes a lot of patience to give each one a fair shot. Heck, you are switching to a fairly similar drug of the same type that you had been on and you still need to give it a month or two to build up that steady therapeutic dose in your system that will go to work on your brain. And sometimes it takes even more time because these strong drugs have tough side effects--side effects that are at their worst when the drug finally starts working.

It's very hard to be patient with a medication that we need as a result of a disorder that robs us of our patience. A ton of people stop taking Topamax within a few months due to its side effects. That's unfortunate because in most causes the side effects really mellow out over time. But I'll unabashedly admit that I've jumped ship without giving a drug a fair chance many times. The reality is that headache disorders are REALLY hard and sometimes the time it takes to wait for side effects to abate is too long to bear. Personally, my first round on Zonegran was only a few months but the second time (when I had less options) I stayed on it for about a year.

So be patient, as I said and as you've acknowledged. But I also wanted to let you know that you're doing a really good job in doing what you are now. You should know that you have great patience and strength as you are trying to mak yourself healthier. I hope that you give the Zonegran time and that it works even better than the Topamax did and you have no troubles with the side effects. Having the courage to stick it out when you're trying to find the right treatment is very important, very hard and very admirable. It's commonly said that doing the right thing isn't always easy, but in trying to find a relief for chronic pain, it's more accurate to say that doing the right thing is often very, very hard. I admire your coping skills and I hope that you can continue to keep the bigger picture of healthiness in mind when times are at their toughest. And if you should falter along the way you are in no way weak.

It's a very hard thing and it's important to remember that we're human. But also, as you said, the more you can keep under control the better.

Umm, it's really late here so I'm not sure how coherent this is.... Just keep on doing your best and recognize that you're being very strong, even if it feels like you're having trouble hanging on.

Kindest regards, always,
Ben
DX: NDPH, Recovered CRPS
RX: Lamictal, Provigil, Clonazepam, Ambien CR, Emsam, Namenda, Oxycontin, Oxycodone
PRN: Haloperidol, Zyprexa, Lodine, Zofran, Skelaxin


jmoo
New Member


Date Joined Feb 2009
Total Posts : 4
   Posted 2/19/2009 9:17 AM (GMT -6)   
I am on my 3rd week of taking Zonegran (or the generic of it) and I find it very interesting that you've expressed itchy-ness. It concerns me in terms of an allergy to the medicine. I too have been really itcy, mostly on my arms since I've started the medicine. (i don't normally have issues with itching)

I have been on topamax which worked amazingly well, then nortriptyline, then amitriptyline and now zonegran. I switched off of topamax because my family could not stand being near me and i cried and was angry all of the time, however, i never had headaches, although i did lose 15 lbs. The next two medicines made me eat everything in sight, especially candy. I felt like I had an eating disorder and gained all the weight back and they didnt really help my headaches that much. I am now on Zonegran. During every medicine switch my headaches have been awful. I've had a migraine for pretty much every day of the last two weeks while waiting to get up to the full dose of zonegran. I'm hopeful though because it took a month before taking topamax helped me at all.

Jess

mercyme
Regular Member


Date Joined Feb 2005
Total Posts : 310
   Posted 1/6/2012 9:19 PM (GMT -6)   
I just started taking zonegran this week. I am only taking 25mg twice a day, right now there isn't any difference in my migraines. How long does the doctors usually wait before they up the dosage to see if it will be more effective? I tried topamax but the side effects were more than I could tolerate. I will hang in there and take my 50mg a day of zonegran and pray things get better.

I see that no one has responded to the recent post in a very long time. Hope someone reads this and can give me some feed back. God Bless ~ Mercyme =)

migrainehater
New Member


Date Joined Mar 2012
Total Posts : 2
   Posted 3/12/2012 5:19 PM (GMT -6)   
How has the Zonegran been working? My Neuro prescribed me Zonegran today and I'm kind of nervous to start it.

I tried Tompax back in November/December and the stuff darn near killed me. I was exhausted, had no short term memory, my congitive abilities were shot, I was irritable, anxious, paranoid, depressed and I am generlly a very low stress person and have never had issues with anxiety or depression. I also would space out and break into crying fits for no reason; it was beyond horrible. Oh and it either didn't help my migraines at all or actually made them worse, not quite sure as I was so messed up.

I tried Nortryptaline after that, and wasn't on it long enough to figure anything out b/c I started losing my hair - awesome.

So, here I am with the Zonegran, not sure if it will actually work for me and scared to death of the possible side effects after the Topamax experience. We're in the process of getting approval for Botox to try that but in the meantime, should I try this Zonegran?
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