hello my name is paul. i got my first cluster headache three days after my 31st birthday and i am going on day 25. i never knew pain like this could exist. i have been to the ER where they told me it might be cluster headaches. the pain was so intense that i ripped the hair out of the top of my head without knowing it. i usually get 2-4 attacks a day and sit on the edge of my bed rocking back and forth and crying. i have consumed so much aspirin thinking it may help but it had no effect. i finally went to a neurologist. he put me on a steroid, maxalt, and sumavel dosepro. i am uninsured so i can't get the sumavel because the cost is $1700 for twelve shots. i've missed two weeks of work already. i don't know how much more i can stand. i feel like im going insane just sitting around waiting for the pain to return. i need help.

barilleboy wrote on Sep 25^th, 2010 at 2:34pm:

hello my name is paul. i got my first cluster headache three days after my 31st birthday and i am going on day 25. i never knew pain like this could exist. i have been to the ER where they told me it might be cluster headaches. the pain was so intense that i ripped the hair out of the top of my head without knowing it. i usually get 2-4 attacks a day and sit on the edge of my bed rocking back and forth and crying. i have consumed so much aspirin thinking it may help but it had no effect. i finally went to a neurologist. he put me on a steroid, maxalt, and sumavel dosepro. i am uninsured so i can't get the sumavel because the cost is $1700 for twelve shots. i've missed two weeks of work already. i don't know how much more i can stand. i feel like im going insane just sitting around waiting for the pain to return. i need help.

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

          potter

Red Bull at the first sign of an attack.  Any energy drink really, as long as it contains BOTH caffeine and taurine.  Find the one you can stomach the easiest and slam it when you feel the beast approach.

Oxygen is your best defense.  If you can't get it prescribed, search this site for welder's O2 and how to get it.  It will make the biggest difference in your life.  Get the RIGHT mask and use the right method for delivery and you will marvel at the results - and no side effects!  Your neuro will prescribe it if he/she is up on the latest CH treatments, abortives (if not, send him/her here to read what others do).  It's cheap and easy to use.

Try melatonin for sleeping (search the site for the correct dosage), and if you get O2, keep that puppy right next to the bed for quick abortion of an attack that awakens you.

Welcome to the family you never wanted to be a part of, but will soon be glad you found.  Keep us posted.

(Oh, and if you have a spouse or SO that supports you in this nightmare, please send that person here.  You're suffering the actual pain, your supporter is suffering anguish and uncertainty, and fear and we know all about that.  We support supporters, too.)

What they said. And when you're ready (i.e., you're able to abort the individual attacks), go to clusterbusters.com.

Hi Paul - you didn't mention taking anything as a preventitive, like verapamil, which should work to reduce the number of attacks you get. After all it's better to avoid a CH in the first place rather than to stop it quickly once it appears.

Hey Barilleboy!
I'm sorry you're having such a hard time - CH really really stinks...   >:(

Please call your neuro about getting on a prevent such as verapamil.  It's generic and not at all expensive and the help with the pain is soooooooooo worth it. 

Give your neuro a call and ask - there's a good possibility that you won't have to even go back in and spend the money for an office appt.  Certainly, it won't hurt to call and ask...

Please, keep your spirits up!  We all know how CH can drag on you...

Stop the pain meds--they will only increase your attacks.

Sumavel is a new form of injection but it's more expensive than the original self-injecting product (still, expensive, I'm afraid).

Since you can't afford the Rx med, print following and ask your doc for a sample. On a per dose basis, it's affordable and, for many of us, highly effective.
----

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.
====
See the PDF file, below.

---

Welcome to the board. You have been given some excellent advice and some important reading assignments. You will learn your best defense against these thinigs is to educate yourself and work WITH your doc to establish a treatment regimen. We'll help you every step of the way!

Joe