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Sibelium/Flunarizine Experiences?

Hi, I've been suffering from migraines for about 20 years. They used to be very infrequent (2-4/year), but in the last 5 years or so, the number has increased, and I get between 90-110 annually now. They range from a persistent, dull pain to all-out horrible with vomiting and dizziness. I've tried several different medications including Imitrex, Maxalt, and Zomig. I've been using Relpax 40mg for about 2 years now, and thankfully, it will typically help within an hour of taking it, as long as I take it early enough.

I've been seeing a neurologist for about a year and a half. Originally, I thought my migraines were caused by bad sinus pain, but after finally getting an appointment with an ENT, I learned my sinuses are "perfect" (his words, not mine). Cue the eureka moment where I realized my sinus pain was actually migraine pain.

Anyway, since working with the neurologist, I've tried Topomax and now, Nortriptyline. I suffered some nasty side effects with Topomax within 2 months of taking it: tingling arms/legs, dry mouth, and suicidal thoughts. This is when I switched to Nortriptyline. I worked my way up to 50 mg/night, but found there wasn't much of a difference between 30 mg and 50 mg, so my doctor had me go back to 30. I've now been on it for about a year, and have noticed minimal improvement. I'm still averaging 8-10 migraines/month (the past 2 weeks have been terrible--5 migraines already in 2015), and my doctor would like to see me have no more than 6.

I do have asthma, so can't take beta blockers, unfortunately. The next option is Sibelium. Has this worked for anyone? I've read it's not one of the most successful treatments, but obviously it's worked for some. I won't lie, but I'm nervous about the weight gain so many of these drugs can cause--I've gained about 5 pounds since on Nortriptyline, but don't know if that's from turning 40 or the medication! I know it sounds superficial, but there it is.

In addition to the medication, in the past 4-5 months, I've started taking butterbur (75 mg BID), riboflavin (400 mg), magnesium (500 mg). I'm not sure how much they're helping, but I figured it was worth a shot.

I would love to hear about some of your experiences on Sibelium, if you have any. Thank you!

  1. Hi jengee,

    I did want to mention that we get the most benefit from Topamax when taking in a split dose - morning and night. So if someone take 50 mgs, they would take 25mg at bedtime and 25 mg in the morning. Let me share our Topamax dosing with you here;

    I've not tried Sibelium, but do know others who have with good results. Hopefully they will be in shortly to share their experiences with you.


    1. Hi Nancy,

      Thanks for the reply. I do wish the Topomax had worked as I understand when it does work, it's great! Unfortunately, the side effects for me were severe enough that my doctor took me off it immediately.

      I've just filled a prescription for sibelium, and I'll be starting it in a few days after weaning myself off Nortriptyline. I'm still concerned about the weight gain side effect, but both my doctor and the pharmacist seemed unconcerned. The pharmacist mentioned that weight gain can occur but is temporary? I'd love to know if anyone else has experienced this!

      Thank you again!

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