New, but long time visitor of the site here. I have been suffering from headaches since 2005, and with the information I have been reading on this site and others over the years, I believe they may be cluster headaches. I have seen a couple different physicians for the headaches since 2007, with no relief from the pain. I have just started seeing a new physician for general problems as well as my headaches. He, unlike the others were very familiar with cluster headaches. He gave me samples of Trokendi XR (topiramate) to try. He told me that it would need to be taken every day, regardless of the presence of headaches or not. When he gave me the samples about a month ago, I was headache free. For you all that know the pain of CH, I know this may sound ridiculous, but I didn't take the medication because I wanted to see if my "seasonal" headaches would be back this year or not before I took the medication.

Well, they are back, as expected, only one month sooner. I just took the first of the escalating dose today. We will see if it helps.

I did a search for this medication and nothing popped up on the forum. Is anyone taking Trokendi XR for CH? It's indicated for seizures, like other medications I have tried before so I don't know if it will be the magic bullet or not.

Search this site using its generic name, topiramate, and you'll get a number of folks who complan about he mental confusion which is sa side effect.

While it will block the Cluster attackes, it's not the most commonly used med (with a long record of success), Verapamil.

The complexity of treating Cluster is such that we suggest working with a headache specialist. It's often difficult to diagnose and treat and you will be better served by someone with experience.
===
LOCATING HEADACHE SPECIALIST

1. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

2.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

3. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
=====================================================================
WHY A HEADACHE SPECIALIST IS RECOMMENDED


Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.
================================

Print the PDF file, below. It's a good tool to help with discussions with any doc you see.

This is not a disorder for self-diagnosis and self-treatment: get with a well educated/experienced doc.

---

Yes, I did notice that a few days after posting the question. The Topiramate is one that I have tried in the past and had little to no improvement. I have not experienced any negative side effects like those you mentioned, so I did continue taking the Trokendi/Topiramate, but I have noticed no improvement in pain reduction. Frequency maybe, but not enough to say this is a keeper. The headaches are running their usual course right now, hitting 8's and 9's, so the Trokendi/Topiramate is definately a no-go for me.