Oxygen provided abortive value early on in my CH life.  Unfortunately after long-term use Oxygen began aborting attacks only to have them return within minutes at increased severity/duration with each application.

Zomig, Imitrex, Caffergot, etc. all came up bust (no value or bad side effects).  I ride attacks out and have stopped abortive therapies.

My base consists of 1200mg Lithium Carbonate, 720mg Verapamil and 12mg Melatonin daily.  This mix reduces the number of attacks and their severity.  Missing a dose or being two hour or more late with a dose will remind me how useful these are in controlling attacks even though it fails to stop them.  It’s not safest or greatest but I’m not currently experiencing bad side effects and am kind of stuck here.
   
Over the years Prednisone, Depakote, and a host of others sometimes showed promise only to have CH morph its way around any effectiveness they appeared to have.  My frustrated Neurologist has on several occasions recommended medically induced coma with intravenous D.H.E. but we've always shelved this because of previous severe side effects with ergotamine.
   
My Neurologist and I are attempting to figure out where to go from here.  Every new option we discuss comes with potentially nastier and nastier side effects.  Sparing everyone more detail of a decade and a half of research/treatments, I have a basic question.
   
Has anyone experiencing long cycles, Chronic and/or Semi-Chronic CH ever found anything that consistently works without the threat of mental/physical disaster?  (Sorry, but the mushrooms won’t be a big hit in my work life).

burnt-toast
(Tom)             

I HEAR YOU!!!  And my answer is so far...no.  Anything that works for me is great when I use it, but I can't stop using it without getting worse headaches or the side effects are too much for me.  I am not thrilled with anything like a lot of people here are.  It seems as though I try something new each cycle and have not found anything I love yet after 25 years.  Last cycle, I did Relpax and Verapamil, this cycle I did Zyprexa and Verapamil.  From my perspective, the Zyprexa was not as dangerous as the Relpax.  Like I said, they work but it is difficult to taper off of them without worse headaches.  I have to be really careful about timing and tapering very slowly.  I am rather new to this site and have learned a lot for next time.  Read all you can here...it helps!

Good luck!!!
Joni

There is nothing new on the pike to us but, I'm with Joni, in suggesting you try Zyprexa. A number of us have had excellent results and, with the low doses/frequency we need, the side effect profile is not an issue.
--------
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.
==============

There is nothing special in this report, largely confirms what we talk about here, but your doc might like to get a copy for his benefit/ relief??.....

"Evidence Base for the Medical Treatments Used in Cluster Headache." Alok Tyagi, M.D, et al. In: Current Pain and Headache Reports 2009, 13:168-178. Pub: Current Medicine Group ISSN 1531-3433
----

(I can send a PDF file of this article if you will send your e-mail address to me.)

Hi Tom,

I can't help being curious about what flow rate didn't work for you.  Where it worked and then stopped is usually resolved by a higher flow rate for many others. 

What flow rates and methods did you try?

-Dennis-

Thanks Joni and Bob,

I’ll look into Zyprexa (Olanzapine) , it’s an option I haven’t heard of.  Not sure if my Neurologist is familiar with it but we’ll find out.
 
Is anyone familiar with Neurontin (Gabapentin)?   I have a number of reservations about this drug but would welcome input from anyone with first-hand experience with it.

Dennis,

Appreciate the curiosity.  You got me digging through years of notes but my Neurologist prescribed 10lpm/nonrebreather we never altered this flow rate.  I’m not certain what you mean by methods tried.

To clarify, the reason Oxygen therapy was discontinued wasn’t that Oxygen failed to abort attacks.  Its use began to increase the number of follow up attacks.

Good results were achieved for approx. 10 months.  At the start of Oxygen therapy attacks were 3 to 4 per night and Oxygen typically aborted them in 5 to 30 minutes.  After an initial 10 months attacks escalated to 6 and 7 per night over the next few weeks.  We discontinued Oxygen and I returned the 3 to 4 range within a week.  I haven’t considered Oxygen since.

To be fair to Oxygen, I have since had simular experiences with other abortives.  Maybe it just me but when I find something that works CH seems to find ways around it.

burnt-toast
(Tom)            

Hormone therapy.

Working for me so far (when nothing else would)

Paul

The previous reference was to this treatment....

Headache. 2006 Jun;46(6):925-33. 


Testosterone replacement therapy for treatment refractory cluster headache.

Stillman MJ.

Objectives.-To describe the clinical characteristics and laboratory findings of cluster headache patients whose headaches responded to testosterone replacement therapy. Background.-Current evidence points to hypothalamic dysfunction, with increased metabolic hyperactivity in the region of the suprachiasmatic nucleus, as being important in the genesis of cluster headaches. This is clinically borne out in the circadian and diurnal behavior of these headaches. For years it has been recognized that male cluster headache patients appear overmasculinized. Recent neuroendocrine and sleep studies now point to an association between gonadotropin and corticotropin levels and hypothalamically entrained pineal secretion of melatonin. Results.-Seven male and 2 female patients, seen between July 2004 and February 2005, and between the ages of 32 and 56, are reported with histories of treatment resistant cluster headaches accompanied by borderline low or low serum testosterone levels. The patients failed to respond to individually tailored medical regimens, including melatonin doses of 12 mg a day or higher, high flow oxygen, maximally tolerated verapamil, antiepileptic agents, and parenteral serotonin agonists. Seven of the 9 patients met 2004 International Classification for the Diagnosis of Headache criteria for chronic cluster headaches; the other 2 patients had episodic cluster headaches of several months duration. After neurological and physical examination all patients had laboratory investigations including fasting lipid panel, PSA (where indicated), LH, FSH, and testosterone levels (both free and total). All 9 patients demonstrated either abnormally low or low, normal testosterone levels. After supplementation with either pure testosterone in 5 of 7 male patients or combination testosterone/estrogen therapy in both female patients, the patients achieved cluster headache freedom for the first 24 hours. Four male chronic cluster patients, all with abnormally low testosterone levels, achieved remission. Conclusions.-Abnormal testosterone levels in patients with episodic or chronic cluster headaches refractory to maximal medical management may predict a therapeutic response to testosterone replacement therapy. In the described cases, diurnal variation of attacks, a seasonal cluster pattern, and previous, transient responsiveness to melatonin therapy pointed to the hypothalamus as the site of neurological dysfunction. Prospective studies pairing hormone levels and polysomnographic data are needed.

PMID: 16732838 

Hey Tom
I think that one of the most frustrating things about these headaches for me is that each cycle is unpredictable.  What I mean is that what works one time may not work the next. 

I too have tried many different preventatives over the years, including Verapamil, but due to adverse side effects have decided to go without prescription medications and deal with the headaches naturally.

Kudzu and mushrooms have both worked for some cycles, but not all.  Melatonin at night has usually helped with night time hits, but not this current cycle.  I also read somewhere that melatonin loses its effectivness if taken on a continual basis, so I stopped taking it for a few days and then tried again.

I have tried many different abortives, Imitrex, Amerge, Maxalt, Zomig.  All have had a 50% success rate overall, working for awhile then proving ineffective.  Pain medications have never worked.

Oxygen has been the single best way to deal with the headaches.  I have had a few cycles where I was resistant to the oxygen, and even this cycle I had days where the hits came every 2 hours, BUT I looked at how I was using the O2 ( making sure that I was hyperventilating and staying on it for 10 minutes) and increased my caffeine. Now that my cycle is slowing down, the O2 is taking out every headache and the number has reduced to 2-4 per day.

Oxygen has no side effects for me and has proven to be the most effective tool for dealing with clusters.  Think about trying it again.  I am glad that I didn't give up on it.
CC

Try RC seeds if feel that you must avoid mushrooms at all costs.

Quote:

my Neurologist prescribed 10lpm/nonrebreather we never altered this flow rate.

Tom...most of us use a regulator these days that goes to 25 lpm.  With fantastic results.  Some have even managed to find one even higher.  Add to that whole picture,  one of the newer masks that have come out recently...for sale right here (link to the left at the CH.com store)  and you may not have to travel too far in the medication direction as you think.

Linda 

You should definitely try amitriptyline. I had clusters for years and had a crazy episode in 2005 that lasted for a year. 50 mg per day of amitriptyline every day for 4 months and I was cured - I never had another.

I hope you feel better soon, I know how terrible it can be.

Thanks for the replies.
 
There appears to be a good amount of information regarding hormone therapy for CH that centers on Low Plasma Testosterone levels.  It’s a direction I haven’t gone yet and we’ll see where it goes.
 
I’ve often discussed Oxygen use with my Neurologist and I realize Oxygen works wonder s for a lot of folks, at one time it was a good solution for me as well.  When I refer back to the results, it’s the potential for increasing the number of attacks that I have to consider.   Zomig and (don’t laugh) Anbesol applied with a Q-Tip worked for a while but ultimately produced that same result.   After several months increases in the number of attacks became a real issue.  I’ve had early success with abortive but too often seem end up paying a price in the long-term.
   
I’ve added Vanatrip, Elavil, Endep (Amitriptyline) to my list of meds. to research.  From a preliminary review it appears a drug that would give me some concerns.  I’ll continue researching it but has anyone else had any first-hand experience with it?

Julie, my first knowledgeable Neurologist helped me achieve some long-term and long-overdue PF time.  On one visit I announced that it had been great working with him and that I was cured and wouldn't be seeing him again.  He laughed and said he couldn't say when but insisted I'd be back and spending a lot of time looking for answers.  At the time I didn't believe him but he was right, about 1.5 years later I was back.  That was about 12 years ago and I'm still looking for answers.               

Again, thanks for the replies, I appreciate everyone’s input and will take everything I can get from it.

burnt-toast
(Tom)

If you are asking about Amitriptaline, I take 10mg every night all the time.  When I first started it, I went 3 years without a headache but I don't know if that is why although that was unusual for me.  I was also using Nasonex every day all the time, too, which is a steroid.  Anyway, it only lasted 3 years and coincidentally the only thing I stopped was the Nasonex....I probably should have increased the Amitriptaline but I don't like the side effects of constipation and tiredness, so I haven't.  My doctor wanted me to take 40mg.  I may try it someday.  For me, it is such a balancing act between relief, side effects, and not being able to stop a med due to the return of HA's.  I am constantly a detective!

Tom,

When I first saw the title of your post I almost passed it by until I saw who posted it.  At first I thought it was a newbie who was going to find the Hope Diamond we all have looked for  for so long. ;)

Several years ago I tried O2 with similar results to yours, and gave it up as not worth the effort.  After the convention last summer I became convinced after talking with Chuck, Bill, Linda, and a few others and tried again at 25lpm, and have had excellent results since.  If I stay on it for a few minutes after the attack has ended it doesn't come back.  If I quit to soon all I have done is push it down and it flares back up, similar to a house fire that is knocked down, but still smoulders.

I would suggest also that you look into the Testosterone therapy.  It helped mine markedly.  Didn't end them, but cut them by approx 50 percent.

Please keep us posted on what you do.  I'll be interested in your findings.

Jerry

Jerry,

Thanks for the reply,

Not searching for the Hope Diamond - just looking for anything I've managed to overlook or something recent that I haven't looked into yet.

I've got a couple new directions to look into and with Oxygen an old one - I'll be sure to keep everyone up to date with any progress.


burnt-toast
(Tom)

I'm sorry to hear that prednisone is not working for you. It didn't work for me either at first but my neurologist and I changed the dosage and now it works everytime. I start with 6omg for a week and then gradually ween off of it through a 2 week period. Does this sound similar to your experience?

Thanks Mike,

I’m happy to hear that you are getting some benefit from Prednisone.

Essentially I had a running script for two week-520mg tapers, always one on hand and one in the queue.  When flair-ups occurred (recognizable increases in frequency & severity) I would start a taper.  Typically a taper was necessary two to three times per year.  It worked reasonable well for a few years and held attacks to levels I could cope with.

When the effectiveness of this schedule began to decrease, we (my Neuro. and I) found that tapering the same 520mg over three weeks was effective.  I did this for about another year or so but after that Prednisone became very ineffective.

Attempts to adjust dosages/length of tapers failed to produce recognizable value so the use of this drug was discontinued.
 
It doesn’t sound like an issue in your case but a word of caution, there are potential serious side effects from long-term Prednisone use.  It’s a commonly prescribed drug and helps folks with a variety of disorders but typically as a short-term treatment.  Long-term use is usually reserved for treating serious and/or life threatening illnesses.  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE provides some good information on this prescription drug if you find it being prescribed with increasing frequency.

burnt-toast
(Tom)