i been in cycle for three weeks  now they put me on prednisone 4 mg doses started with 6 the first day then 5 the 4 and so on yesterday was my 2 dose day and the attacks came back today the shadows are back and neck pain. im also on topamax i dont think any of it is working now what do i do now please give me advice i cant see the specialist till september and im scared. this i my third cycle. the first i blew off just thought i had bad migrains. the sencond went to boston and was diagnosed. now this cycle im leaning about it and i now know alot but mot enough and my neuro knows nothing. i think ive learnt more than him. i have 1 imitrex pill left and my insurance wont cover it till april 1st and my injections cant be filled til march 27th. im scared and the hospital will be my resort. ive tried for the o2 but have been unsuccessfull thus far. i get 5-7 attack in 24 hr periods. i think the prednisone only hid the beast for 4 days. any suggestons will help me. paula

I wish that you could move to a headache specialist. Your experience leaves me uncomfortable about the care you are receiving so far--and this is not uncommon for many neurologists have limited training and useful experience dealing with complex headache disorders.

There is a good headache clinic in your area--but the name eluldes me. (Perhaps another of our gang can help.) But here is how to search:

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

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Look for "Physician Finder" search box.  Call 1-800-643-5552; 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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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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I understand that Top is the current hot item for many docs but many of our folks have complained about it and the medical literature does not yet offer hard evidence that it's more, even as, effective as our old main line med, Verapamil.

If you change docs, print this out and use it as a discussion tool:

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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The Prednisone dose is about half of what most cluster folks receive but that's not a problem since it appears to be working for you. The problem is that the Top is not taking hold and it, along with Verapamil, are meds which work to reduce the intensity and frequency of attacks. The Pred and preventive should be used at the same time.
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As you have time, explore the buttons (left) starting with the OUCH site and print out this article and start chewing on it.

 
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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Finally, try and develop patience, even in the face of the pain. There is much useful  help available but it often takes some time to find the right doc and then work thru the several treatments available. But we have all been on this trip and will help you as we can. You just stay in touch!!

im unsuccessfull at obtaining the o2 at the moment i am seeing a specialist in september in boston. my neuro i have now is not very familiar with these headches as he calls them. ive tried to educate him myself and he is relentless to my tries. ive asked for the preventives and he gives me doses that are not touching my needs or the requirements of the clusters i dont know what to do now till i seek the help in september. im at a dead end  i think. im calling him tomorrow im asking for suggestions of you guys now for him i will ask for verapramil now and a higher dose of prdnisone i was only on 5 mg doses and i started with 6 pills then 5 then 4 and so on. the topamax is 25mg pills 2 times a day but seem to be in affective too

it can be soooo frustrating when doctors act so patronizingly.  it gets my goat when they give us the hysterical female treatment.  If at all possible I change docs asap if I run up against it. the best doc i ever had took the time to research my condition and never patronized me.  It was so hard for me when he retired.  my current doc, though not perfect, seems to understand my condition and since I'm active it helps to have a doc familiar with sports medicine too.

Paula, to get around the neuro who is not responsive, would it be possible to enlist your primary care doc?

A number of us, not having access to a specialist and having a primary care who was open/receptive/willing to learn, learned how to treat us. It involved the patient providing MEDICAL literature which the doc can accept, giving guidance on treatment.

I had this kind of relationship for 20-years with my primary care and he supported my requests for this or that med as long as I could show him that this was a standard/medically O.K. approach.

I'm with Bob on this.  Since you cannot get good care from your neuro and can't get to a specialist till Sept cultivate your GP.  Mine is wonderful, and after firing my last Neuro several years ago I haven't been to another for CH, nor do i see the need.  My GP has become somewhat knowledgeable and is more than willing to work with me on what I need.

Jerry

6 injects means 6 packs of 2 sets of 6mg statdose needles - pop those puppies open, peel off the label. Look at the Imitrex tip on the side column - it kinda sucks, but if you mark it right you can divide the 6mg dose per-shot into roughly 2mg doses. You might just want to do "half" at 3mg and call it a day, but that's your choice. PS: Do this at your own risk - take precautions to avoid infection, sterilize, alcohol swab, etc..

At that point, get prescribed more though - tell your pharmacy you dont have insurance (heck, walk across the street to CVS instead of walgreens ith a fresh scrip. if needed if they haggle about having insurance but exceeded coverage) to give you the generic. You should be able to get the shot packs for about $100 each. Pricey, but with dividing the shots it's liveable at about $500 to get you through a week+ of what would be the worst of it for most people until your oral meds are figured out or you get the oxygen straightened out.