Hello,
     My name is Anthony and I am 32 years old. I have suffered from CH for about 8-10 years now. When they first started occurring I thought I had sinus issues so the first few times the episodes took place, I went to the doc and asked for an antibiotic. It seemed to help I thought, I think this was because I waited for 3 weeks before I decided to go to the doc. I don’t believe it was the antibiotic that helped but rather that the episodes were at their end.
     I finally started seeing patterns of these CH’s. They occur at night, almost every night when the episodes start. They can start anywhere from 1 to 3 hours after I go sleep. The episodes occur with drastic weather changes i.e. winter/spring-summer time. Usually 1-2 episodes a year that last from 3-4 weeks. I can’t explain the pain as I try to do with my wife. I had an episode last night and my wife asked me if she could do anything, get me a hot pack, rub my neck, whatever but I told her no. I just wanted to sit there on the edge of the bed and just wish it would go away. My CH last night would have been an 8-9 on the kip scale. I felt like beating my head on the counter which I have done before but I try not to because it scares my wife! I woke up this morning and have a residual headache of 1-2 on the kip scale but other than being tired I’m functioning normally.
     I found this forum and I have come hear out of frustration but to hear others stories as well. It’s nice to hear that I am not going crazy and that I am not the only one who knows what this pain feels like. When people hear me talk about my headaches they just blow it off or look at me funny. Although I don’t wish the pain on my worst enemy I sometimes wish those people who doubt the pain I feel could feel it for just 5 minutes to understand what I’m going through.
     I have tried several different meds, many of which I don’t recall what they were calledover the last 10 years but almost nothing seems to work. The meds I am currently taking that seem to work for now is Fioricet. This little pill is like gold to me and I do not go anywhere without taking the bottle with me! I have currently switched docs and this newer doc had another doc come in when I went to see him. The other doc that came into the office also suffers from CH’s. They ended up prescribing me Imitrex 50MG, but I’m supposed to take 2 tablets (100 mg) at the onset of an attack and then another 100 MG if the first doesn’t work. If that doesn’t work then I’m supposed to take an anti-nausea medication along with a Lortab. I have read that Lortabs aren’t good for CH’s but the docs (Including the one who gets CH’s both agreed on the treatment.) I have only taken the Imitrex once (During the daytime) and it seemed to help but there was a small residual CH that lingered the rest of the day; probably a 1-2 on the kip scale. But, I did not get a CH that night which was nice, a good NIGHTS SLEEP!!!
     I have been sticking to the Fioricet because that is what has been my go to for the past 6-8 years and has worked wonders on my headache. I want to give the Imitrex a try but when I wake up at 1 am with a full blown headache, it’s hard for me to try something new, not knowing there will be a guarantee it will work like the Fioricet does. 9Why fix something that isn’t broken?) The only issue my new doc doesn’t like about the Fioricet is that there is a rebound headache factor and that it is extremely addictive. I just wish I could find the triggers that cause these CH’s so I can work on prevention rather than rely on medicinal therapy. Sorry this is so long, I’m just looking for support and some help!!!

Welcome home, Anthony.

Oxygen is a CH'ers BEST friend.  It took me a while to get that.   Sooooo glad I did.  You will be too

Jeannie

Click on the yellow oxygen tab at the left of your screen.   Print out the info and give it to your Dr.   If he won't prescribe it for you.... find a Dr. who will.

Jeannie

Since your doc is not leading you into standard treatments for Cluster let us throw some ideas at you.

Imitrex pills are the least effective form of this med for Cluster. They are too slow acting. The injection form works within 10-15 minutes and will give, for most people, total relief.

You mention a seeking for prevention, the triggers. This is not a clear issue with Cluster with the exception of alcohol which must be avoided when you are in an active headache period. Sometimes solvents will trigger but the list is not as uniform as you might expect.

The best approach to prevention is outlined in the following protocol  which is widely used in the U.S. Suggest you print it out and share with the doc.
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Headache. 2004 Nov;44(10):1013-8.   

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.


    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).

=======================================
SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.

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See the PDF file, below, for a current overview of treatments for Cluster.
====

A rapidly actling abortive, an alternative to Imitrex injection:

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.
====
A very good, general introduction to Cluster:




Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or (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]
===
The problems with chronic use of pain meds are known
known and are not worth risking in the presence of several other effective, safe abortives.

37-41withrestrictions wrote on Jan 19^th, 2011 at 12:16pm:



Thanks Suzie, nice to hear from you. Looking forward to talking to you more!!!
Ant

Ant wrote on Jan 19^th, 2011 at 12:57pm:

   Then be serious about oxygen.  Done correctly it really rocks

           Potter

Welcome to the board Ant! Fiorinal was the narcotic I used early on in the 80's. It was the one narcotic med which actually seemed to work on the MECHANISM  of CH and not just the pain. It worked really well in the early stages of my CH career, when the attacks built really slowly. As I hit my early 20's and the pain would build faster, it stopped being effective for me.

Then I found oxygen! I know, we start to sound like a broken record around here, but damn, the results are just a bit hard to argue with. I went from 90-120 minute rides, with the accompanying 2-3 day "headache hang over", to 6-8 minute aborts. From attack, to completely pain free. It's danged near scary how fast it works.

The stuff Bob Johnson prints out for you is the latest and greatest on CH treatment, read it, learn it. An educated CH'er hurts a lot less. Welcome home.

Joe

In the old days when I'd take a 90 minute ride, my head would feel like it had been slammed with a 2X4, for up to 2 days after an attack. It would hurt to brush my hair!! I'd be exhausted, no energy, really felt like I'd been put through the ringer.

Joe

Since you get the night time terrors, look into melatonin, an OTC sleep aid available at health and vitamin stores, I've been told even Walmart carries it. Start with 9 mg about 30 min before bedtime. May have to adjust the dose up or down, give it a few days to see. Many can avoid the night time terrors using it.

Joe

Someone else recently posted it's by prescription only over there.......

Joe

Thomas has had success combining the extended release with the normal release version, to get him through the night. Makes sense I suppose when you think about getting thru a 6-8 hour nights sleep.

Joe

Energy drinks help.  I recently have fallen in love with those little energy shots.  Much less to drink and they are not carbonated.   


Jeannie