Been dealing with clusters off and on for a few years now, thankfully not too often (every 18 months or so for a few weeks at a time). I've been taking Maxalt for the pain and it seems to work, if I take it in time. But I'm planning to see a new doctor soon (I just switched health plans) and I was wondering if there's a med that's now more generally recommended than Maxalt? It's been a few years since I started taking it, possibly people are using something else now. I'm sure whatever doctor I wind up with will have this info, but just in case they don't, I'd like to have my ducks in a row when I go in there, so I know what meds to ask about. And I've got my fingers crossed that my new doctor will have SOME kind of knowledge about clusters and be sympathetic about them, rather than just saying they're headaches and recommending ibuprofin, as a couple have in the past. I think clusters are a pretty well known thing now, but I worry that some doctors are still in the dark where clusters are concerned.

In any case, if anyone out there has any thoughts on what the current most effective medication for clusters is, I'd appreciate hearing about that. I'm primarily talking about something pill related, rather than oxygen or something I need to inject. Needles kinda scare me, though I guess I could get over that if there was some super effective med out there that required injection.

Anyhow, thanks in advance for any info anyone has, rest assured, I really appreciate it.

Oxygen really is a magic bullet. There is no fix-it-all pill.

                  Potter

"There is no fix-it-all pill."

Well yes, I realize this, but I was asking about the most effective medications available now. I know that there's no perfect med that will magically cure all cluster headaches, but there definitely are medications that can help and I was just curious to get people's thoughts on what those medications are. But believe me, I'm aware that there's no magic bullet for clusters. I'm just wondering what sort of ammo is out there.

Number one, if you are expecting your Dr to be able to prescribe for you the magic pill you will be very sadly disappointed.  Very little is still known among the medical community about CH, so unless you get an headache specialist that KNOWS CH you are in for the same old same old.

Number two, there are no magic pills.  About the only things in pill form for Ch are preventatives such as Verap, Topomax, Depakote, etc.  Or you can go the alternative route and use Kudzu.  I've found Kudzu to be helpful.  Imitrex is till in fairly wide use, and if you don't want to use injectables you can get the nasal spray.  The pills take to long.

Oxygen is becoming the abortive of choice, but has changed quite a bit over the last few years.  I suggest you read the oxygen info button on the left.  If you go that route I would suggest you get a script for at least 25 lpm rather than just 15 as it works so much faster.

Number three, go to START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE and check out other alternatives.  There have been some tremendous successes over there.

Number four,  stay around during the break times, even if it is only checking in now and then.  That allows you to keep up with what is happening and you don't have to come in here when the beast is knocking on the door trying to find the magic bullet to put him down.  You will have your arsenal at the ready and won't have th panic.  Besides that, you might be able to help another in return.

Jerry

Quote:

Number three, go to START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE and check out other alternatives.

Not to pick nits, but this should be number one.

Okay that's all great info, but what's the name of the magic pill that automatically cures cluster headaches instantly?

Kidding... :)

snaithbert wrote on Nov 29^th, 2010 at 11:25am:

Okay that's all great info, but what's the name of the magic pill that automatically cures cluster headaches instantly? Kidding... :)

  I got a pill that'll cure ya,  but only the first one's free.

                      Potter

It's really a danger to your own health (physical and mental) to assume your dr, or any dr or neuro who is not a headche specialist, knows anything about chs and preventatives or abortives. You must become your own best advocate and the best way to do that is research this site thoroughly, taking notes of what makes sense (or even doesn't make sense yet) and become as thoroughly informed as you can. Really, man, this is the magic pill if there ever was one. Blessings. lance

Ditto what Lance said, a knowledgeable CH'er hurts a lot less! ;)

That being said, 02 is still my favorite abortive, 6-8 minutes and I'm pain free. Energy drinks, rock star,  red bull, any containing caffeine and taurine, chugged at the first sign of an attack, will abort or reduce for many.

Lithium is my prevent med on cycle, blocks 60-70% of my attacks, Verapamil is still the most common "first try" prevent. I'll do the occasional imitrex jab but I try to avoid it as I believe imitrex extends cycles.

If you do find the magic cure pill, for heavens sake let me know, after 32 years I'm finding these headaches increasingly annoying! :D

Joe

I don't know - I find this latest treatment (i.e., busting) pretty f'n magic.

I think the best med for CHs is staying positive and not letting these nasty things control your life.plus a little oxygen and imigran injectors..

Brew wrote on Nov 29^th, 2010 at 3:31pm:

I don't know - I find this latest treatment (i.e., busting) pretty f'n magic.

Yep worked for me.

             Potter

catscratchfever wrote on Nov 29^th, 2010 at 3:41pm:

I think the best med for CHs is staying positive and not letting these nasty things control your life.plus a little oxygen and imigran injectors..

But you see, that's the thing - since successfully administering this treatment, I've needed neither. Six whole months' worth. And that's from being chronic.

If that ain't magic, I don't know what is....

I had no preconceived notions considering shrooms as a prevent.  I ate them purely for academic reasons.  2200 days later and I'm still pain free.

               Potter

Well thanks, folks. This has given me a lot to work with. I know there's no cure for clusters but any weapon in the arsenal is one I'd like to know about. Much obliged!

Quote:

Quote: Number three, go to START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE and check out other alternatives. Not to pick nits, but this should be number one.

Shroomies work for me. Not a magic bullit but a magic fungus. ;)

I found O2 great, but somewhat awkward to tote around.  I finally found a Dr. who recognized these, and tried Varapamil as a prevent.  Wow!  It knocked out the pain (the weird shadows are still around).  My O2 bottles are collecting dust.  Your mileage may, and probably will,  vary.  But the big thing is to find a doc who is willing and able to work with you.  PF wishes.

That's great news, verapamil didn't work for me, Lithium turned out to be my magic pill. You hit the nail on the head, finding an open minded doctor that's not afraid to look outside the box, can sure change the quality of your life!

Joe

Potter wrote on Nov 29^th, 2010 at 4:07pm:

I had no preconceived notions considering shrooms as a prevent.  I ate them purely for academic reasons.  2200 days later and I'm still pain free.                Potter

almost 3 years PF for me and counting [smiley=headbanger.gif]

After 30 years of CH that wound up in 2007 into a 5-a-night frequency that O2 aborted less and less, I finally agreed to prophylaxis with verapamil. The 80 mg twice a day dose worked. My plan is if CH surfaces, I start the verapamil prophylaxis until two weeks after they stop (which is usually within days). So I consider myself very very lucky. The only downside is that verapamil turns me into a brick factory (hard stool). So lots of water.

How'd I miss this one? A lot of courageous folks climbing aboard the magic bus.

Rather than get into a cat fight, let me suggest looking over these two articles for they fairly represent current practice.
====



Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
===
See the PDF file, below.
===
I believe one of the two items mentions olanzapine. It's just starting to get attention in some articles which recommend treatments. But see,

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.

---

I'll trade ya:

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

Ron

p.s. - The Orphanet article is perhaps the best I've read. Thanks.

Quote:

Rather than get into a cat fight,

If it works, it works. Not worried about what it is pharma or alternative. I worry about what would happen if I dont get the ice pick out of my head.
You rock Bob.
the bb

Re: Just Curious, What's the Best Med For CH Now?

                 Knowledge is the best med!

There are literally hundreds of different meds, therapies and treatments used and this is where knowledge comes in. Understanding of our afflictions and how the medications work.

Some of us find that no medicinal treatment, though sounds absurd, is sometimes the best treatment.

By far the two leading successes in treating and aborting CH seem to be oxygen and multiple types of CB treatments. These two seem to have the least amount of side affects and 70-80% success rates. Only one helps me.

Botox...expensive and worth every cent.

I am now 3 years headache free. It worked like a miracle for me.

I started to get cluster headaches about 15 years ago. Definitely CH and as bad as they get. August through October was the worst. Sometimes 6 a day. Cafergot helped if I took it in time.

I received about 10 shots of Botox in my forehead about 5 years ago. The headaches stopped immediately. I had no side effects other than my  forehead being stiff for about 3 months after the shots. It wasn't really noticeable to others.

I had no headaches for about 2 years. None. They came back with a vengeance and I immediately went back for more shots. Again, relief was immediate and I have not had an attack for 3 years.

It cost about $1,000.

rlm wrote on Dec 12^th, 2010 at 3:06pm:

Botox...expensive and worth every cent. I am now 3 years headache free. It worked like a miracle for me. I started to get cluster headaches about 15 years ago. Definitely CH and as bad as they get. August through October was the worst. Sometimes 6 a day. Cafergot helped if I took it in time. I received about 10 shots of Botox in my forehead about 5 years ago. The headaches stopped immediately. I had no side effects other than my  forehead being stiff for about 3 months after the shots. It wasn't really noticeable to others. I had no headaches for about 2 years. None. They came back with a vengeance and I immediately went back for more shots. Again, relief was immediate and I have not had an attack for 3 years. It cost about $1,000.

there are a few people on the board here that have been successful with using botox as a treatment.

$1000 isnt so bad considering the cost of co-pays or out of pocket expenses for meds (imetrex) 

for what its worth - I was PF for 5 years until this past summer. I asked around for anything new and didn't really find any miracles. The only thing new seems to be the idea of using O2 at levels up to 25 lpm (vs the 12 lpm I had been on 5 years ago).

This time, I saw a CH specialist (so nice to talk to a doc who knows what they are talking about) and he put me on verapamil again....it didn't work previously...but he ramped me up to 940mg/day. Which is very high but it worked! But I know that each person and often each cycle is different. So all I can offer is find a doc who really understands CH and get to your O2 early.

Quote:

So all I can offer is find a doc who really understands CH and get to your O2 early.

Very good advice.
the bb

RC seeds have worked for me.

clusterbusters.com and O2 on standby. Been pain free for 6 months. By far the single most effective prevent I have tried.

neuropath wrote on Dec 27^th, 2010 at 8:23pm:

clusterbusters.com and O2 on standby. Been pain free for 6 months. By far the single most effective prevent I have tried.

Nothing with an R_x label even comes close.