I,ve been taking Verapamil for about two to three years now as a preventive and obviously it is not working or I am taking the wrong dosage (200MG) each morning. I've always had CH but for some reason this season is the worst I'd ever had ,I have oxygen (6 liters) , 100 mg Imitrex (pill form). I am very desperate right now to stop this!! My doctor is booking appointment a month ahead and I am almost at the point of no return...I know Imitrex should not be taken everyday , but I have no other choice I take about two a day and my Insurance doesn't cover some because of monthly expense or something like that.( only five per script. My Family does nopt understand what I go through and sometimes I ask myself WHY ME??? Please all suggestions are welcome I cant take this anymore I want a normal life!! 

Your doc is a little off base with your treatment. And asking a CH patient to wait a month, while they're IN CYCLE, is just unforgiveable. 200 mg a day of Verapamil, as Brew said, is way low. Some go as high as 960 mg a day to get relief. 6 LPM on your oxygen is pathetically low. We find 15 LPM to be the very minimum flow rate, many find much faster relief at 25 LPM or higher. I hope you are using a Non Re Breather Mask and not those nasal canulas, those are worthless. Imitrex pills are not nearly as effective as the injectables or nasal sprays. And many on the board use imitrex daily with no problems. Although if you get the flow rate up on the 02 you may find, as I have, you don't need imitrex anymore. read this link to undertsand the BEST way to use oxygen, you'll find your aborts may run about 6 minutes or so.

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

Learn to stock up on your meds when you are off cycle, so you never get caught short by the stupid insurance companies strict limits on your prescriptions.

Under the meds section, read the post "123 pain free days and I think I know why" A simple vitamin/mineral/anti inflamatory regimen that's providing a lot of relief for people who try it.

Then just strat reading like crazy. An educated CH'er hurts a lot less.

Joe

Hi Jchange

It strikes me you've just got some top advice. The O2 has to be upped and Imigram tablet, as you must be aware, are absolutely useless, you really need the injections. These are limited to two a day, but can be stretched out and still successful. As for the Verapamil, I'm not really the one to comment, as I had adverse side effects, so don't know what might constitute an ideal dosage.
Bottom line though is to get sorted with a top knowlegable neuro, or headache specialist.
I really hope you can make use of the advice you're getting and things improve for you.

Best of wishes

Andrew

A classic example of a doc who has good intentions and inadequate knowledge/skill. You have two choices: if your doc is open to receiving, we can feed information for you to give go him which will improve your treatment.

If that isn't a workable route, then the option is to locate a headache specialist.
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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. 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.
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Right now, print out this article and give to him:

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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Also give him the PDF article, low.
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Imitrex pills are the least effective form to use; injection is best, fastest. And you can use the pill more than 1-2x a day.

Hi jchange & Welcome Home

  Good advice above . . . and you need to take charge of your pain now if your doc is unwilling (many are real freaky about high-flow 02 because they are uninformed), even though last year the American Medical Journal (or Journal of American Medicine?) reported (which I saw on a national news network) that high-flow 02 was effective as abortive for 80% of CH sufferers.

  Copy info off this board and show it to him.  If your insurance won't pay for the 15lpm regulator  . . . go to ebay (medical oxygen regulators) and you can find one for about $30 . . . it will look like the 8lpm regulator you have now.  You need a non-rebreather mask (the one with the bag) . . . your 02 supplier will have one with a 1 litre bag . . . which will work till you can get an Op2mask (with big green 3 litre bag) . . . a huge improvement and designed for clusterheads.  I am slim and able to hyperventilate (with the 3 litre mask) with a 15 litre regulator.

  For right now, if all you have is the 8 lpm regulator and a nasal canula (nose thingy) . . . try this . . . Up the regulator to 8 lpm, then hold one finger over one of the openings . . . aim the other opening at your mouth and inhale just slightly less than the regulator is putting out . . . which means you're inhaling 100% 02  . . . .start at the first sign of attack.  My first script was for 4 lpm and the nose thingy and I was able to abort if used quickly enough . . . this might help get you through til you can get the proper set-up.

  Re the Verapamil.  I had my first PF day (in over a year), after coming here (02), finding out about Verap & 02, about three weeks after starting the Verap when I got to 240 mg a day (had 3 attacks that night, but had the 02 to kill them . . . it was a WONDERFUL day!)  Got as high as 480 mg, then settled on a 360mg maintenance dose which reduced the frequency/intensity of attacks.  As you up the dosage, many have some problems with constipation (I did), but that's easily remedied with diet change or stool softeners.  You may get what we refer to as the Verapamil "buzz" within 20-40 min of taking the Verap . . . tis normal and passes quickly.  Verapamil is a BP med, so your doc needs to monitor as you increase the dosage . . . but as mentioned above, many take much higher dosages and often in combination with lithium or other meds.

  Read, read, read . . . ask any questions you may have.  You've found the motherlode of CH info/sharing/caring and the advice you will receive here comes from folks who truly know your pain.

    Be Safe,    PFDANs

       Richard

The d3 regimen (which is working for some and not for others  . . . we're all different) and the Verapamil  (your dose is too low) are preventatives.

You still need to have an abortive and the proper 02 set-up will give you that ability . . . with NO side effects . . . and it's CHEAP even if you have to pay cash.  I pay $10 per "E" tank, no deposit, no limit on tanks (I keep 20).   Can abort in minutes if used early-on in the attack.

We PUSH 02 for a reason . . . it works!


   Richard

Don't stop, start or increase the verapamil without talking to your doc, that's a med you work slowly with. I'd stay on it, talk to your doc about increasing the dosing, and still continue with Batch's regimen. (The d-3 etc.)

As far as HOW you abort with 02. The key iis getting 100% oxygen to your lungs, at  arate to encourage hyper ventilation. This is best accomplished using a Non Re Breather Mask, and a regulator that goes to at least 15 LPM, preferably upwards of 25 LPM. I fear you have a standard re breather mask which will NOT accomplish this.

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

This is the link with pics to help you get the idea for the set up. I start huffing 02 as soon as I get the pressure in my ear and the familiar neck tension. My aborts run about 6-8 minutes.

Joe

Hi and so sorry to hear your in such a bad way! I Have just come off verapamil after about 4 years- it just didnt work anymore for me though I agree with Brew the dose you are on is very low indeed ,I was taking double that. I now take lithium (Priadel) which so far seems good though I have just finished a cluster period that lasted 3 months and sufferd such agony that I contemplated suicide- it really got that bad!  Its thanks to my best mate that I am writing this now who helped me through it .

The cluster period will end dont worry . You said you take Imitrex in the UK we know this as Imigran you can use 2 injections in a 24 hour period and no more as it gets dangerouse though I will be honest and say when things have been really bad I have gone over this, I have also read that using Imitrex to much can make the condition worse
All the best and hang on in there!
Gezz