My husband is in the second week of a cycle.  Presdnisone has worked pretty well the past 2 cycles (his come every 3 years) and it seems to be working this time too.  He still gets one to 2 CH's each day, but they can be aborted by a 20 mg Imitrex nasal.  The problem is the doc won't give give enough meds to get through the cycle.  He's trying to reduce the dosage of Prednisone too quickly.  He also only called in a script for the 5 mg Imitrex.  I called the pharmacy Friday AM to ensure what scripts would be waiting (we were out of town and coming back in Fri PM), I found it was only the 5 mg.  I called the doc's office, told them we needed 20 mg, and confirmed that's what Tim has always used.  When I showed up at the pharmacy to pick it up Friday night, it was the 5 mg (at a cost of $197 for 6 of them - ins will only cover 6/month and until I meet the deductible it's all out-of-pocket).  Tim had a CH yesterday afternoon and we went through 3 of the 5 mgs!  That was a $100 headache and in one CH we used up 2 weeks worth of meds according to insurance coverage!  If the doc had given us the 20mg (which is the same price as the 5 mg), we'd still have 5 more to get us through the next couple of days.  Needless to say, the doc is going to get an earful tomorrow when the office is open.  I'm also shopping for a specialist to switch to.

My question is this.  From what I've read, Verapamil seems to have less side effects than Prednisone.  If so, maybe we should try it but I'm afraid to have Tim stop the prednisone since it is helping for the most part.  Has anyone ever switched preventative meds in the middle of a cycle?  Could Tim start Verapamil and begin slowing down the Prednisone?  Can they be taken at the same time?  

Yes they can be taken at the same time, and many even start on prednisone (high dose tapering to nil over 10-14 days). What concerns me is the possibility of your husband taking prednisone over longer periods of time. It shouldn't be done. Two, maybe three weeks tops. It should be used for immediate relief while another preventative(s) build up to theraputic levels in the system.

When I start a new cycle, I start taking lithium and prednisone at the same time, tapering off the prednisone as mentioned above. This used to be lithium, verapamil, and prednisone together, but I've stopped taking the verapamil altogether because of the sexual side-effects (and it ain't the erection that lasts more than four hours, if you get my drift).

Thanks.  The doc only prescribed 30 mg for the first 3 days, 20 mg for 3 days, 10 mg for 3 days and then off.  That's only 9 days which is not enough to get a cycle stopped.  Both of the 2 cycles prior to this he needed to be on prednisone for  2 weeks.  He never mentioned ramping up something else (e.g. Verapamil) as we taper off the pred.  We'll definately explore this.  

As for the side effects of Verapamil (and I do get your drift  ;) it seems like it's worth trying since Tim's only come every 3-4 years.  Besides, I don't know if it's common, but when he's in cycle it seems like we have sex more than usual.  If a mild one slips through the prednisone, sex seems to divert his mind (or maybe he's getting more O2 with the heavy breathing  ;)  He's also under extreme stress during a cycle.  Between the fear of a CH hitting and trying to run his own business and keep his crews busy, he uses sex as a stress reliever.  Guess not all side effects are bad!!! :)

Yes, the Pred is taken for one cycle and it generally stops the attacks quickly. BUT--at the same time you start the Verap. because it takes some days to become effective but it works to reduce the frequency/intensity of attacks for the long run.
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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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Are you comfortable that your doc is experienced and skilled in treating headache? Doesn't sound like it from your information. If you have the option:


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.  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.

Am I the only one who immediately thinks of oxygen to help him?

Marc wrote on Jul 12^th, 2009 at 8:44pm:

Am I the only one who immediately thinks of oxygen to help him?

Yes.

No, not really. I guess I figure it's so basic that sometimes I just gloss right over it.

Kay - Has he tried high-flow oxygen administered through a non-rebreather apparatus to abort individual attacks?

My regimen mimics Brews, I do the 10-14 day pred taper while I wait for the lithium to kick in. Do talk to your doc about starting a preventative medication. Verapamil has worked great for many many people, certainly worth a shot.

Then, GET OXYGEN! I'm 49, had the beast about 31 years, oxygen is my first line and most effective abort. It's cheap, and no side effects. I can knock an attack out in 6-8 minutes, without the expense or the side effects of imitrex. (Read the oxygen info link on the left side, complete with pictures!)

Thanks for being his supporter, supporters rock!

Joe

We haven't tried O2 in the correct way yet.  We have a tank, but the regulator only goes to 8 ml.  It also doesn't have the right mask.  We did tape shut the holes.  Based on all the reading from this site, 8 ml and the wrong mask seem to be the problem.  When he saw the current doctor (just a family practice guy), he said he wouldn't prescribe it because insurance won't cover it.  

The good news is that I do have pretty decent health insurance.  We have access to a "health advocate" - someone with some amount of medical training that's suppose to help with claims, find a good doc, etc.  I'm going to call them first thing in the morning.  

I'm wondering what the thoughts are on neuro vs. a headache clinic vs a pain management clinic.  My insurance allows us to go to a specialist without a referal (assuming the doc is an "approved" provider).  I'm going to call a  couple of difference places in the morning.  We live in Omaha NE (a town of around 1 million) so you'd think there would be more selection.  I've only found 1 headache clinic and only a couple of pain management specialists.  

If we can't get the O2 from a doctor, then tomorrow we'll start exploring buying the welder's tank and regulator and mask on-line.  

Just figured out why Tim has been feeling pretty good today.  In my blog earlier I said that I was frustrated that the doc only prescribed the 5 mg Imitrex instead of 20 mg even though I had called and explained 20 is what he always used.  

Tim just went to take his night prednisone tablet and was thinking to himself that maybe he didn't need a full one tonight since he'd been feeling so good all day (no pain and no shadows).  He happend to read the bottle, and guess what, the doc up'd the prednisone to 20 mg rather than the Imitrex!!  Good thing Tim read and bottle before he took one!   Now I know I'm looking for a new doctor in the morning!!