Hi all,

I've been suffering from headaches for the past 7 years. At first, they presented as typical migraines (pain radiating down the right side of face), but have remained standard for the past 5 years as clusters (or cluster-like, as I'll explain below.)

My neuro diagnosed me with CH, as I go through 2-week cycles once or twice a year with classic "alarm clock" wakeups, white-hot localized pain behind my right eye, ptosis (never during major attacks, usually during shadow-headaches in the afternoon. Hubs noticed it and next time I was at the neuro, she noted I exhibited signs of classic Horner's as well as some weakness in my smile on my right side) , and shadows throughout the cycle. I however have never experienced the type of suicidal pain so many of you describe-- I am lucid during attacks, can carry on a conversation, despite intense pain, and prefer to sit calmly rather than pace. The worst is usually the nausea, which also makes me think it is not classic CH. I believe I have some sort of migraine-cluster hybrid, which I guess is not too unusual with the hundreds of types of headaches out there.

In the past, a combination of triptans (Treximet, Frova, Relpax) usually worked to successfully abort an attack, and a week of steroids to break my cycle. O2 helps with my nausea but has never aborted an attack. I'm now on week 9 of near-daily attacks, and nothing is working. In fact, I've given up on triptans but for the worst pain to avoid rebounds and am using super strong coffee to abort.

I'm starting acupuncture this week to try something completely different, but am wondering if anyone has another suggestion. At this point, 5 weeks over my usual cycle, I am going a bit crazy thinking this is my new normal, and that I will just wake up everyday with searing pain and the knowledge that it will return. Strange how my 2-week cycles, while painful, were almost dependable in way; this new breed is throwing me for a complete loop. Any advice you can offer (especially if you've gone through a shift in your typical cycle) would be incredibly helpful, as I feel pretty lost right now, and my neuro is out of ideas.

Hey Tumbler, you're going through the wringer, aren't you? I know, just what you wanted to hear. I'm afraid I have more questions and no answers for you at this point. The questions have to do with your descriptions of the pain, your disclaimers, and what you may have used and in what doses. For starters, you said you don't experience the kind of pain we experience but you describe it as white-hot and searing. That sounds pretty intense to me. Have you seen the KIP scale? Just wondering where you fall, typically?

Second, so many tell us they have "tried" O2, or even imitrex, when what they mean is they have used an ineffective delivery of O2 or form of trex. So what are the details of your use of these abortives?

Third, what preventatives have you been prescribed, in what doses? Effective treatment of CHs often will not follow with prescriptions given for migraines or other cluster-like symptoms.

And lastly, is your neuro a headache specialist? Many neuros are only vaguely familiar with CHs, although they may not have the personal integrity to tell you so. If not, you really need to seek one out.  Looking forward to more posts. Blessings. lance

Hi Tumbler

Sounds to me like time to get out there and contact a headache specialist. I'm sure many have suffered pattern changes. I had fairly mild bouts twice a year, for several years. Normally one or two kip7/8 attacks per day, for four to six weeks, so I knew what was coming and could still get on with my life. Late last year, it went bolistic. seven or eight attacks per day, invariably at the top of the kip scale. That's when I found these guys and girls, who've been a great help. They helped me towards O2, which has made a big difference to my current episode. I note you say you got no relief through it, but are you using all the right kit and really getting puffing on it?
Finally, the triptans, I get that you have rebounds, I've had them myself at times, but if they do a job for you, they are worth sticking with.
I'm sure there'll be no end ov much more helpful advice coming your way, so I'll just say all the best for getting PF!!

All the very best
Andrew

Thanks for answering, Andy and Wimsey. Headaches are almost always a 7 on the KIP scale (occasionally an 8.) Which I have learned to just deal with until an abortive kicks in- as I mentioned, the worst is actually the severe nausea that can accompany an attack.

Abortives: I've always taken oral triptans, which are effective within 20 minutes. Since I can pretty much deal with the pain until they start working, I've never felt the need to use injectables. As for O2- I've used an H tank with nonrebreather mask, but reading through the oxygen info I'm seeing that I've definitely been using it on too low an LPM (10 l/m.) Will crank it up tomorrow morning and see if that makes a difference.

Preventatives: Usual suspects for migraines haven't worked. Including anti-depressants, migrelief and beta blockers. What preventatives should I be on for CH?

As for my neuro, I've never felt the need to seek out another, since my regimen was working. She is not a CH specialist, and if this cycle continues, I may just seek one out. Again, it isn't so much the pain that is getting to me, as it is the seemingly endless length of the cycle, which I would just LOVE to break.

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A mixture of migraine & Clusrter elements is not common but is a recognized headache type.
Nausea is uncommon with pure Cluster but would be consistent with a mixed M-C picture.

See PDF file, below, for common used treatments and evidence for effectiveness.
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If your doc tries you on Verapamil as a preventive, introduce this procotol to the conversation. It's widely used....

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).

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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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Suggest this article for your learning curve:




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]
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Finally,

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.

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If you haven't already check out the "oxygen info" link below. It's covers Oxygen (O2) for CH.

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

Welcome to CH.com,   Don