Hi,

I'm new to my diagnosis of CH.  Only this December 2011 did I realize I had a pattern.  Talk about denial.  I've had a daily CH for ~10 wks straight as of today, with maybe 3 days where I had about 8 PF hours each.

Starting in December 2005 and Dec 2009 I also had headaches which were daily, lasting ~ 6wks each time.  I took Migrin that didn't work back then, as well OTC meds that never worked - eventually they just passed.

I was in total denial this time around until about January 2012.  I'm currently on short-term disability because I was ramped up to 100 mg Topamax which made me scramble my words/my writing/and lose my way in the car.  I couldn't do my job (frankly, still can't thanks to the CH).  I even mis-wrote my own name several times.  I thought I had a stroke it got so bad!  That's when I finally went to a neurologist at the Headache Inst. @ St. Lukes in NYC.  I'm from NJ.

Right away she knew I had CH.  She took me off of the Fiorcet which was causing me insane rebound headaches, off the Topamax (titrated over 4 wks).  And now, about 3 wks after being off "Dopamax", I'm no longer confused or scrambling my words and feeling more clarity.  I know this rx can help others, but for me it was a killer.  I'm also on B12 and Vitamin D supplements.

I also have controlled high blood pressure; but the doc switched me from Lisinopril to Verapamil 180 mg to address both conditions (only 3 days ago).

I also take Alsuma (Imitrex equivalent) almost daily, 1-3 shots.... but to be honest, I'm not good about giving myself the shot.  If it wasn't subcutaneous I think I would medicate more often for pain.  I live with very consistent cycles most days (4a, 9:30a, 11:30a, 2p, and again 7p).  If it weren't for my sleeping pill I'd probably feel more at night too.  At times I have spurts where it will be a constant headache of varying pain ALL DAY - that's the one I think people call the Beast.  It's a 10 and even the shots don't "kill" it.

I read on here that Melatonin can help...  I'm going to try that tonight instead of my Ambien 12.5 mg.  I often halve that dosage anyway because I'm a petite woman and don't need that much I guess.

I've had MRI with and without contrast, CT scans, and MRA.  All show lesions, but they've ruled out lots by doing it.  I had a history of Sarcoidosis of the lungs and eyes as a child, but that doesn't appear active at this time - including in my brain.  So doc said this is just evidence of the frequency and seriousness of my headaches of late.  When this news scared me she just said not to worry about dementia down the road.  Should I really not ask more about these?  Is this true this is typical and I shouldn't worry?

Now I'm set to see the neuro again 3/22 and I told her I need something either in addition to the Alsuma, or other than, as an alternative... I'm muddling through CH pain some days longer than I should just to avoid the shots.

She mentioned a nerve block, but I'm nervous about that - she said she'd tell me more when I get there.  I was really hoping for O2 instead... Should I be afraid??  Other things I should ask or say at this appointment?  I'm afraid I'm going from episodic to chronic.  Is it too soon to tell?

I know this was really long.  I'll try to keep future posts shorter.  Thanks for reading this and just being there.  This has been a really awful 10 wks, and just finding this site feels like a glimmer of light.

For other readers: Alsulma is sumitriptan in a new brand of autoinjector--not a generic suma.

Expect (hope!) your doc is working you up to a higher Verap. dose. This is a comonly used procotol for its use. Suggest you print it and use to talk with the doc about dosing.
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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).

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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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Print out the PDF file, below and use as a discussion tool  re. treatments. Your doc will recognize the source. For you it's one way to starting learning how Cluster is treated.
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Read this entire article and then start on the buttons, left, starting with the OUCH site. Living with Cluster means learning how to treat/live with a condition which cannot be cured bur, for which, good controls are available.
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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]
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Read the posts here. You'll find your experiences discussed, learning how others cope, and focus your thinking about what specific questions you want to ask us.

There is no virtual--but much needless pain--in not using the Imitrex at the first sign of an anttack. All abortives work fastest and best when taken as soon as you recognize an attack is developing.

If you are trying to save money, consider that poor response, when you do finally inject, is producing less value for the price.

The following should help convince your Doctor that treating CH with O2 is safe and effective. The info is from the Michigan Headpain & Nuerological Institute by, Dr. Todd Rozen, well know Headache research & treatment, Neurologist.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

When the pain gets bad enough you'll do anything and everything to stop it.

Most Doctors know very little about CH, it is in your best interest to know more than them. There is more CH info on this site than most Dr's know.

Don