Hi everyone.  I’m new to this site but have suffered from CH for 35 years and thought it may be helpful to others to share my experiences. 

They started as chronic CH when I was about 12.  Was accurately diagnosed very early on by a neurologist in south Florida.  Looking back I was lucky given that it was in the mid-70s. Would get several a week any time of day.  My mother worked with psychologists so they tried biofeedback and crap like that but nothing worked.  They continued as chronic CH until I was in my 30s.  One of the more interesting periods was in college when I gave myself ulcers from taking Excedrin like candy.  Had to spend 5 days in the hospital with a tub up my nose pumping the blood out of my stomach.

At some point in my late 20s early 30s they just went away.  I thought “groovy, they’re gone for good” – WRONG.  They came back as episodic CH.  Ever since, I go through long periods with no headaches (1-3) years, followed by a 2-3 month episode.  Now that they are episodic they’ve changed a great deal:

•      Cycle starts with mild CH happening once a night 3-4 nights a week.  They gradually increase until at the peak I’m getting multiple CH each evening, some during the day, and they are significantly more severe.  The episodes go from severe CH to totally gone in about a week.  I’d say a bell curve heavily weighted to the right.
•      The only thing I’ve found that helps is Zomig Nasal spray but I hate the way it makes me feel after I take it, Imitrex shots but I get rebound headaches about 4 hours later that are even more severe, and coffee.  I’m lucky in that I can sleep after drinking coffee so I can usually reduce the duration of a CH by pounding some coffee and still go back to sleep (god bless the person that invented the keurig coffee maker).  Other things that help include ice over my eye and base of skull when they are relatively mild and heat (hot towel or shower) in the same places when they are severe.  Also, my wife will sometimes rubs a spot at the base of my skull that seems to help (I’d make a joke here but don’t know you folks yet so I better not)
•      I am a smoker (currently quitting and eating Nicorette mints) and a drinker.  I only drink on the weekends and have to quit when CH is bad or else they bring on an 8-9 when the booze is wearing off.  Before you ask, I don’t think the mints are a trigger.  I’ve been eating them off and on for years with no problems.  In fact, they help elevate the symptoms.
•      When CHs are peaking and I’m not having a CH, I have a very mild CH the rest of the time.  It’s like I can just barely feel it, my eye droops, and my nose runs.

So that’s my story.  Because my episodes are so far apart, I never got around to joining this site but I’m in the middle of a pretty bad episode so I thought I’d get to know you guys.    

Welcome!

Re. your rebound comment with Imitrex:
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Rebound headaches. "Rebound Headaches--A Review", Au. John S. Warner, M.D., in HEADACHE QUARTERLY, 10:3(1999). (There is some confusion on the board about the meaning of "rebound". There appears to be an emerging consensus in the medical literature to define "rebound" as a headache which is caused by the overuse of any medication used to abort a headache or relieve pain. "Recurrence" [of a headache] is being used to refer to the redevelopment of an attack when its "normal" duration is longer than the useful life of the medication which has been taken. That is, the medication effectiveness is reducing before the headache has come to an end; the pain redevelops.)
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Sumatriptan has a hard initial punch and relatively short effective life--a combination which works well for most Cluster attacks. However, some people, whose Clusters have a longer life, find that the med is wearing down even as the pain continues. One can understand how this sequence comes into one's thinking: Attack, Imitrex injection, pain continues, it's a rebound cluster which has developed from the Imitrex. In fact, this is a recurrence of the attack, not a rebound.

This is one of the reasons that several other triptans were developed having less initial punch but longer effective life. While aimed at the migraine crowd, at first, a number of cluster users have found this characteristic of value to them.
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Are you using a preventive? Lithium has been used with success for Chronic, sometimes along with Verapamil.

If you are not having multiple daily attacks, this abortive is a good as Imitrex. Might be worth exploring doing a trial with your doc.
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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

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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.

Since this abstract was first posted Zyprexa has appeared in some lists of recommended meds for CH. [BJ]
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Hello Freddyz,

When you say you "tried oxygen", can you please tell us what type of mask you used at what flow rate?

Also, if you'd like to learn about alternative treatments, please check out Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Take care,
Melissa


ETA: Woops!  I see Wimsey posted the same question, sorry about the repeat!

Thanks everyone.  That's a lot to chew on already. 

@ Bob J.  Could be the same CH but it's many hours after taking the meds and I've seldom had a CH for that long.   I've tried several preventatives over the years including Lithium, Verapamil, and some anti-seizure med I don't recall the name of.  None of them worked and the anti-seizure meds turned me into a zombie.  I’ll check with my doctor on the Zyprexa – Thanks

@ Wimsey1 and Melissa – Don’t recall but it was what was prescribed to my sister for her CHs and worked for her.  I used her setup several times while I was visiting her during an episode.

@dvb  - I’m think we may both be correct on this one (or both be wrong depending on how you look at it).   The Rozen/Fishman survey posted on this site has 18% of respondents stating they have a family member that have CH while the survey conducted by ch.com has 13%.  While this is a pretty small percentage to declare it hereditary, it certainly is significantly higher than the less than 1% of the population that have been diagnosed with CH.  I’m sure doctors have a name for this type of statistic.  Lets just call it “sortahereditary” 

Read the stuff on D3 and Omega 3 and was totally pumped.  Stopped on my way home from work and purchased some and took it immediately.   It makes so much sense.  I started this cycle about 6 wks ago then went on vacation for a week about 3 weeks in.  The CHs went away for the week I was on vacation and came back a few days after I returned.  I was outside in the sun the entire week then when I returned and the headaches came back I was back in my office 9-5.  Heck, my son is now mowing the lawn for extra cash so I hardly even get out on the weekends.  Hope it works

Thanks Lance.  Giving the D3/Omega 3 regiment a try now.  If no results from that I'll get with my Neurol with your recommendations on the O2

Fred