Hi,

I am Crystal 34/F  I live in Pittsburgh. I have episodic CH every 18-24 months  3-4 times a day for 6 weeks. I am about 4 weeks into the cycle and currently taking 20mg of prednisone 2x a day and 120mg verapamil a day  also I take 4MG Imitrex injection to stop attacks. The Imitrex works every time! I can not get a prescription for O2 Dr. says there is no need because it has not worked in the past.

Here is the problem I have one injection of the Imitrex left and no way to get more for 2 weeks. I am sitting here feeling very hopeless because I know I will need to use my last shot and then I am out.   I am willing to try anything right now. I just want the beast to give me a break! I have never tried the mushrooms. I would if I could find them. I went to find some mushrooms and have had no clue where to look or how to go about it. I found out quickly there is no mushroom store! and I have never tried this so I am not even sure where to begin. 

So here I sit praying my cycle will end soon. Down to my last shot and hopeless! 



Sorry if I seem to ramble. Just feeling so sad!

Go to:

Clusterbusters.com

Answers to all of your "alternative treatment" questions, people who will share their real life stories with you.

Your verapamil does is very low. Some go to 960 mg a day and up. Talk to your doc about your concerns you're getting creamed with no meds to help you. Talk to him about:

Upping your verapamil dose to increase its prevent effectiveness.

Getting a few more imitrex doses...ask if he has any free samples he'll give you to tide you over.

Re visit oxygen after reading this link, many who have tried 02 before have found by tweaking HOW they use it, it becomes effective again.

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

Check out this link, many can get multiple aborts from one syringe using this trick:

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

For now, grab a couple of energy drinks, try downing one of those for the lesser hits, many can abort or reduce an attack this way.

Go to the medications section of this board and read the post "123 pain free days and i think I know why." It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s a long read, worth the time.

Hang in there, high cycle sucks.

I haven't seen anything about the melatonin and verapamil not getting along. The interaction with verapamil we discuss is with energy drinks. Limit yourself on the energy drinks while on verapamil as the taurine in the energy drinks will interact witht he verapamil, causing potential heart issues. I have sen people on higher verapamil doses then you are on say that 2 energy drinks a day doesn't seem to be an issue but worth discussing with the doc.

Since you're an "out of pocket" person check out the welding oxygen route. It's the same stuff as the medical grade, comes out of the same tanks. Many on the board use it succesfully. You just cannot tell the welding oxygen dealer it's for personal use or they won't give it to you. 

15 LPM works for many, several on the board found it didn't work at all at 15 LPM, but did wonders at 25-45 LPM. Those levels will freak your doc because the medical community for the most part still doesn't understand how we use it.

Joe

Possible help with med  $: see,
Cluster Headache Help and Support › Medications,  Treatments,  Therapies › MEDICATION $ ASSISTANCE: 12 sources=UPDATE
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A much less expensive alternative to Imitrex. Number of us have had excellent results. Your doc can give you a sample and you will know whether it works with 1-3 uses. Print this out and give to him.

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

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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.
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Since this abstract was first posted Zyprexa has appeared in some lists of recommended meds for CH. [BJ]
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Both the Pred. dose and Verap. dose are low. Ask him to start a Pred cycle over starting with 60mg. Prin following, re. Verap. This a very commonly used protocol.
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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.

I should have added: you doc doesn't appear to have the skills/knowledge needed to treat Cluster. The low doses of the meds and his view of O2 surely convey this view.

Still, without insurance you will have trouble finding a headache specialist who will treat you. The alternative, therefore, is to hope you can educate your present doc about more effective treatment by offering him medical literature which we can supply.

If you get a positive response to the material I posted earlier, there is hope. Give us some feedback on his response.

If you want to explore your options for a headache specialist:

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. 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.