I returned today to Hain’s for a follow-up. I’ve been on a very high (for MAV) dose of Keppra – 2000 mg – for 2 months, and I’ve stuck out the Effexor XR trial for 5 weeks. I saw Cherchi, who I haven’t seen in a long time and is much more conservative (with meds) than Hain. I’m to taper off the two drugs, one at a time.
I said Valium went from great to “barely does anything” in recent months. He was surprised that some benzos (Ativan, Tranxene) are “one-trick ponies” – worked once or twice, then did nothing at all.
In all, the good news is I’ve been on Xanax (small dose) – not every day, but most days – for weeks and can get up to 12 hours of huge relief from it. I don’t have any of the withdrawal-type problems that many people get with these short-half-life drugs.
The bad news is Cherchi is a bit overcautious with the taper (he wants it to be very slow) and didn’t really give any new prescriptions. He kind of went against Hain’s most recent thinking (“multi-drug approach”) and wants to see how I do on Xanax alone for a while. Then his next drug choice would be Topamax.
Long story short (well, too late, I suppose), I think I’ll e-mail the doctor(s) back and say that day-to-day relief is great, but I want to keep aggressive on the prophylactic trials — because if anyone thinks I’m going to live my life by Xanax-ing myself through each day ad aeternum, it’s not happening.
I’m sorry to hear you are still on your search for the right med. If you are so inclined, I’m wondering if you would ask Hain and/or Cherchi about using Zonegran in place of Topamax. My understanding is they work similarly. My neurologist has treated multiple patients, including me, who could not tolerate side effects from Topamax but who did fine on Zonegran. I’m curious to know if Topamax is more popular because it is known to be more effective or if it is more popular because of marketing. If they aren’t opposed to your trying Zonegran instead of Topamax, I highly recommend it based on my experience of the two drugs and having read your previous medication experiences.
George,
You did good to stick out the Effexor. Just did my first week of barely 1/3 of a capsule and had such violent stomach pain and rocking that I had to take a break already. The rocking at night was less but the balance during the day was awful. I’m not giving up on it altogether but will go down to even less of a dose to give it a fair shot. But will it ever be possible to get to a dose that will truly help, not if my stomach and intestines do not accomodate it.
Sal
Hi George,
I too would be very interested to know what Hain thought about starting with Zonegran over Topamax as it is supposed to work very similarly without all the nasty side effects. I wonder myself if this is indeed true, why docs like Hain don’t go directly to Zonegran which is better tolerated???
Thanks and good luck with your tapers.
Please keep us posted.
All the best,
lisa
Marci and Lisa, thanks for the idea. I personally would go for it. Unfortunately, with Hain and Cherchi, if it’s not a med. they’re used to giving (esp. with a med-sensitive person, like I am), you’re not likely to get it. They’re in love with their favorites. This is Hain’s description of Zonegran:
“Zonegran, another anticonvulsant, may have some anti-migraine effects too. Like Topiramate, it is a carbonic anhydrase inhibitor (among other things). Zonegran may also be associated with weight loss. It is too early to say with this new drug whether it will have a role in migraine prevention.”
Why do there have to be so many blasted drugs to go through, and why is hitting “the one” so darn hard? I know migraine is a moving target, but the bull’s-eye must be the size of a mustard seed! Logically I’m led to think MAV can’t possibly be the same – or even close to it – in all the people it manifests in. If it did, one medicine (or class of medicines) should work for all, at least in theory.
Based on that statement from Hain, my guess is he is sticking to what he knows from randomised controlled trials. I haven’t looked yet but there’s probably no RCTs or few looking at Zonegram and migraine control compared with Topamax.
All I have to say is Zonegran gave me the same benefits of Topamax without the misery. If you try Topamax and find it intolerable in terms of side effects but see some improvement in your migraine symptoms, I recommend giving Zonegran a try.
Totally agree. I was just coming up with a reason for Hain’s reluctance. I’ve heard him relate things to the literature through others a few times – such as not using Cymbalta for example because there’s no RCTs out there. But we know it works for some here so Z worth a shot for sure.
I’ve tried numerous medications over the years and the one that gives me Most relief is Xanex. I take one small tablet (lowest strength…0.25mg) per day. On worse days i take two. I also take Verapamil which gives me some help too but not as much as the Xanex.
Hi all… This is a paper in which patients did well on Zonegran (zonisamide) after treatment failure with topamax. Of course these were regular migraine patients.
Scott, I am not able to attach the actual paper, so if you think it is worthy of attaching the full text, I could use your help Thanks.
lisa
Clin Neuropharmacol. 2009 Mar-Apr;32(2):103-6.
Zonisamide for migraine prophylaxis in patients refractory to topiramate.
Bermejo PE, Dorado R.
Servicio de Neurologia, Hospital Universitario Puerta de Hierro, Hospital Ruber, Madrid Spain. pedro_bermejo@hotmail.com
INTRODUCTION: Topiramate is a sulfamate-substituted monosaccharide that has proven efficacy in reducing migraine attacks frequency and severity and has similar mechanisms of action and side effects profile to zonisamide. Although there are some studies suggesting a potential role of this drug in migraine prophylaxis, data are still scarce. We evaluate the efficacy and safety of zonisamide for migraine prevention in patients refractory to topiramate. METHODS: Sixty-three patients were initiated on 50 mg/d zonisamide dosage, which was titrated to 400 mg/d, as tolerated. Number of migraine attacks, headache severity (according to a 1- to 10-point visual analog scale), and use of acute medication were tested before and 2 and 6 months after the initiation of zonisamide. Demographic data, dose of the medication, duration of the treatment, and adverse events were also collected and analyzed. RESULTS: Statistically significant improvement in number of migraine attacks, headache severity, and use of acute medication reduction was obtained after the second month of zonisamide therapy and carried through month 6 of treatment. Fifteen patients reported adverse events, the most common of which was concentration difficulties. CONCLUSIONS: These results suggest that zonisamide is effective and well tolerated for migraine prevention in patients refractory to topiramate. With the exception of the inhibition of T-type calcium channels by zonisamide, its mechanisms of action seem to be very similar to topiramate’s. We suggest the potential role of these channels in the pathophysiology of migraine.
Thanks for spotting this one. It was not a controlled trial and was open-labelled but looks very interesting in light of these particular patients failing on Topamax.
I’ll repost in a new topic so that it can be archived later under the Science and Research section.
Marci, Lisa, Scott – A lot of interesting stuff here. Thanks a lot for the article, the suggestion and the discussion. I wonder if I’m so bold as to consider sending the article on to Dr. Cherchi to consider? Or not such a hot idea? (Compared to Hain, Cherchi replies much more quickly – and verbosely.) We’ve had a handful of success stories with Topamax though, right?
Joe – Thanks for replying also. I think Xanax is supposed to be one of the strongest benzos. Usually, though, when I suggest it to someone, a lot of people aren’t a fan of my recommending it. Most people, I think, find the drug too tough to handle with its short half-life and such. I seem unaffected by that! But, glad it works for you! Mind if I ask, how long does it usually work for you?
Hi George,
I would be so curious as to what your docs think about starting with Zonegran over Topamax as from all the research I have done, it appears to have similar efficacy as Topamax but is tolerated much better. I do think it is a matter of Hain not being comfortable using Zonegran as although it was developed and used in Japan for a very long time it was only fairly recently (less than 10 years ago) approved in the US for use in treating epilepsy. I think docs like to use what they are comfortable with but I do know that many migraine specialists are embracing the use of Zonegran.
Would love it if you found out their thoughts on this drug???
Thanks.