Hello all,

Well I have met the best for the first time of the year last week. They have been more mild than in the past, but I know that it will get worse as the time goes on. Typically I have had one attack from the beast a day, but this cycle I have had 2 one from around 11am-1pm and one minor one around 9pm or so.

Thankfully, my cycle lasts for about 2-3 months or so with about 3-4 attacks a day. Typically only one or 2 of them is the most intense, with the other 2 usually being somewhat mild. I can usually tell when the attacks are coming on, because I get the "warning pains" in my left eye. When the attacks are bad....they are bad...all of you know what I mean.

My doctor and I have been fighting this fight ever since I returned from Iraq in 2005. I am on Verapamil and Ergotamine Combo, and at the start they did the job, but as of late, it doesnt even phase these terrible headaches. I have found that nothing has had the effect on the beast that 100% oxygen has.

This season I waited too long to see my doctor and until today, I have been battling the best with no medication at all. Even with the meds now, the only thing that seems to help is a hot shower for atleast 30 minutes. I have been asking my insurance company TriCare for authorization to use oxygen at my home because it so quickly kills the beast.

In the meantime, is there any other home treatments that work for anyone else??

O2 is the best to abort, keep after your doctor and Tri-care on that.  Others will be along soon to make other recommendations for you. You might want to state your dosage of both of the meds you're on in the meantime.

Take care...

Thanks,

Im on 180mg verapamil

ArmySergeant wrote on Oct 18^th, 2010 at 11:48pm:

Thanks, Im on 180mg verapamil

180mg is pretty low compared to many people. I'm on 480mg a day and there are other who are on a lot higher doses.

Some people use welding oxygen instead of medical oxygen with great results, so that may be an alternative you can look at.

Imitrex is another abortive drug that some people use, especially if they don't have access to oxygen.

Energy drinks with caffeine and taurine can help kill shadows and reduce the intensity / duration of a CH. I use Red Bull, but anything similar will help.

For nighttime hits some people are using melatonin with good results too.

Ergotamine was the only thing going when, 35 yrs ago I first developed CH. Now, a doc who is depending on it as a first-line response is showing how dated his education is.

If you have the option, get with a specialist--not any doc, or neurologist--this is much too complex an area of medicine.
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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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Read the PDF file and the following article. It will give you an overall picture of current treatments and this material is good to use in discussing your options with any doc you see.
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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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After digesting these two pieces, explore the buttons (left) starting with the OUCH site and its many internal links.

This is an area where you may well end up knowing more than many docs do--so limited and poor is their education in headache--but it's a lesson many of us have learned--teach them to treat us.

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I neglected to ask(assume?) that you are still in uniform, using Army docs. If that's so, this the notion of having to "educate" your doc becomes more important.

Re. Verapamil. This is a widely used protocol and the trailing para. is important in terms of the form of Verap which works most effectively.

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.

I'm with Bob. I was given cafergot in the early 80's, it was the latest and greatest then, but we've come a long way!

It sounds like you have a good relationship with your doctor. Use the articles Bob has given you, as well as suggestions from members of this board, to educate your doctor. Then the two of you can kick some beast butt!

On Oxygen. It's really cheap. Get your doctor to write you a prescription for high flow oxygen, as needed for CH. A high flow regulator, at least 15 LPM preferably at least 25, can be grabbed off E-bay for as little as $25. E-Tanks rent for $4-5 a month and refills are about $15. I paid out of pocket for many years before we convinced my insurance to pick it up. Do take a minute and read the oxygen info tab on the left as it needs to be used correctly to get the maximum benefit.

Welcome to the board, hope we can help you find some pain free time soon.

Joe

ArmySergeant wrote on Oct 18^th, 2010 at 11:11pm:

In the meantime, is there any other home treatments that work for anyone else??

Something I read about on a CH forum that preceded this one back in '97 or so was deep breathing (through the nose) of freezing air to abort an attack. This was from a guy who discovered it worked for him in wintertime Alaska.

This still works for me for about the first week of an episode before the beast starts coming on really strong, and I'll do the "putting the shnoz up to the blasting car A/C vent" trick if the weather isn't cooperating.

And some of us find that we can sometimes abort an attack with vigorous exercise right at the onset, as in sprint 'til you drop.

I dont see 180 of verapamil being effective.

My dosage while in cycle is 720 mg

seaworthy wrote on Oct 21^st, 2010 at 9:49am:

I dont see 180 of verapamil being effective. My dosage while in cycle is 720 mg

With many going to 960 mg a day before finsing relief...

Joe