Hi!
I'm erica.  I'm 38 years old, and January 5th this year I had a sudden, left eyeball gouging, excruciating, vision blurring, face swelling episode.  I went to the emergency department thinking I was having a stroke or a ruptured aneurysm!
After a CT scan, the neurologist ordered some sumatriptan which helped, then broke the news.  Sounds just like a cluster headache, good news is here's a prescription that will help, bad news is, most often they happen over and over again.
I've since averaged one a week, no real pattern to when or how.  I abort with sumitriptan injections, but have just found out my insurance only covers 4 a month. >:(

The neuro was unwilling to write for vials of sumatriptan, and they pharmacy fills with a one piece autoinjector I can't figure any way to reduce dosing on.

He wrote for nasal spray, haven't picked it up yet, we'll see how this works.

I'm just wondering because my clusters don't seem to be real clusters -- only once a week. 

Who knows, Just along for the ride.  Nice to meet you all!

Hello Erica. Hope it turns out that you do not have cluster headaches.
Yes, it is possible to have once-a-week attacks, especially for someone new to the game. If cluster headaches are what you have they may (probably will) increase in frequency.
On the left side of the screen is a cluster quiz button. Please take the quiz and let us know the results.

Hi Erica
It won't help you now, but for future reference continue to collect your 4 per month injections even when you go out of cycle, and stockpile a few for next time. They are expensive but maybe you could buy one occasionally too. Remember you can only use 2 per day though.

If you google "cluster headache splitting injections" there is a guy on youtube shows you how to get 2 doses from one injection. It looks a bit fiddley but worth a go if you are desperate. Most people who have tried it say that 3mg is just as effective as 6mg.

Hope this helps
Maz.

It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location. (This will add your location, just below your name, every time you post a message.
=============================
Unfortunately, it's not quite so simple. ER's have a terrible reputation for the accuracy of the Dx made around headaches.

I would not accept their diagnosis of Cluster--and then start treatment--without conformation and guidance from a doc with experience treating complex headache disorders.

Two issues involed: need for an accurate diagnosis and the reality that IF you have Cluster you'll need a good doc to work with you for years. Cluster is not a treat-and-cure disorder for it usually continules for years. The good news is that, with skilled care, we can have a good life.

So, I'd urge you to seek, if at all possible, a headache specialist. Avnoid general neurologists:not good success rate around here. IF a HA specialist is avaiable, then ged back.
====
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 PDR file, below. Use it to guide your talk with any doc you see. AND don't start treating yourself until a god doc has confirmed the diagnosis for you need to work with the doc and not independantly.
==============

As you have time, explore the buttons, left on this page and start exploring the following:


These sites which are worth your attention: medical literature, films, plus the expected information
about CH.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
------

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Search under "cluster headache"
-------
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
  Full of articles, blogs, book: written by one of the best headache docs in the Chicago area.
  Worth exploring. The latest book is in e-book edition, $10; comprehensive and worth buying for
  a careful read.
====================
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
  A new site (ca. 2015) with extensive material. Explore the site map and then patiently
  the broad range of materials.

---