Hello everyone:

My name is Elaine, I live in Maryland. I am not exactly new. I used to post here quite regularly back between 1997-2000; that's when my clusters were really bad.

Just some background: When I was 17, I got "headaches" every day around 1:00 p.m. They lasted an hour, and this went on for a year. I was diagnosed with cluster migraines, given Midrin and basically told, "Sorry for your luck".

My father had cluster headaches for many years, and he told me that his grandmother said once you get to be a certain age, they will go away. Apparently, there are a lot of sufferers on my dad's side. At any rate, once I turned 18, they went away.

Had my daughter at 23, they came back. I had them off an on for the next 7 or so years when I found this forum. Then they went away again, probably back in 2002 or so.

I actually forgot all about them until yesterday when I ended up in the ER for the worst headache I have ever had in my entire life. Doctor told me it was a migraine, but I know migraines (I've had them too intermittently throughout the years), and this was no migraine. Then I remembered, ''Oh yeah, clusters". It was a not-so-nice reintroduction.

I don't know why they came back, but I am feeling another attack in the imminent future. I am going to schedule an appointment with a neurologist, but am not hopeful that he'll be helpful. I remember a long time ago that doctors either had never heard of clusters, or as one brilliant doc told me, 'Women don't get clusters'. Whatever, dude. I just know that I cannot go through this again. At least now I have half way decent insurance. I remember the last time I had Imitrex, it was $200. With my current insurance I only paid $5!

The doctor yesterday prescribed Percocet which did nothing. I don't want to take the Imitrex because he didn't write a refill and I don't want to chance being without it.

I should've known something was up because I have not been sleeping and the job  is stressing me out. I know lack of sleep is my trigger. At least one of them.

Anyway, I look forward to getting reacquainted with you all again.

When you do the research for your neuro, look for a headache specialist neuro. It's your best bet at  aCH knowledgeable doc. Then ask for oxygen! It's almost eliminated my use of imitrex. I feel an attack starting, huff 02, 6-8 minutes later I'm pain free. Beats the 90  minute rides I used to take.

Energy drinks are a recent discovery. I use sugar free red bull, but any containing caffiene and taurine will do the trick. Chugged at the first sign of an attack, it will abort or reduce an attack for many. I chug one as I start the oxygen, speeds my abort times and puts off  the "come backer" attacks.

You have much reading to do, lot's of new stuff since your last visit. Good luck with the neuro hunt, keep us posted!

Joe

Hi Elaine,

I see that as often happens, Joe was the first responder here with excellent advice.  8-)

I think you will benefit TREMENDOUSLY from such advice. For instance the thing about neuros. You're so right of course about run of the mill neuros typically being complete a-holes when it comes to CH with their unbelievably ill informed "women don't get clusters"' slogans and other very harmful BS.

So yep, headache specialist is the way to go - if you can find an atypical one that isn't so negligent, callous and arrogant that he/she doesn't require a CH'er in crisis to wait months for an appointment.  >:(

Meantime, the O2 that Joe mentions isn't the old school weak and ineffective method of O2 use from yesteryear. It has become known more recently  that hi flow 100% O2 as described at the oxygen info link to the left is much more effective and it has become wildly popular here.

Some of us can get our GPs to prescribe O2, or if not, many just use welding O2 without prescription (it's the same thing). Just don't expect any doctor to know about hi flow 100% O2 (it's those pesky medical dark ages again).  :-?

Well that's scratching the surface - please hang around and learn about  the other newer trends, such as melatonin, busting, etc.

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. 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.

3.  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.

4. 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.

5. 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.

6. 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.
====
WHEN you find a headache specialist ask about a trial of this med. On a per dose cost basis is much less than the triptans and has been very effective for several of us.
--
Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.

Rozen TD.

Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

--------------------------------------------------------------------------------

Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.

Don't give up on finding a dr.  I live in a relatively small town, and the neuro here was an idiot.  I'm driving 1 1/2 hour now to see a neuro, and is worth every penny and drop of gas, because he gets it, and is open to suggestion, and all around good.  If this guy doesn't work out (or girl), there's plenty more!:)

Many of us understand exactly what you mean when you said you didn't want to use the imitrex cuz you didn't want to be without it. It's like saving gramma's best china for that special party that never comes. So it's never used. We hoard in good times for that very reason, and if you add all of the abortives you've been told, AND use the trex, you can go a long way toward taming the beast. So hoard when you can but don't suffer needlessly. God bless! lance

Hi Elaine...sorry you are suffering again.  I hope you have good luck in finding a doc who knows CH plus is open to suggestions you may find here.  (Also, if you're getting imitrex injection for $5 you are one lucky lady...hope you don't mean the pills because they are not effective in treating CH...imo)

If you have a supporter I would suggest you make sure they go to your doc appts with you and and have them take notes.  Since you haven't seen one in awhile, I'm sure you will have many questions (write them down beforehand).  It's so much easier when someone goes with you to help you digest the info and try to remember everything said later.  You should also have them join this site.  I've been a supporter for my hubby for 20 years.  This site is for them as well.

I think others would agree, you should stay away from percoset or any other narcotics in attempting to treat this.  Long term, more harm than good and as you've experienced not effective.  It's amazing to me a doc would prescribe that instead of an imitrex refill, especially with a history of CH....sigh  :-/

Keep posting, reading and best of luck!