Hello!
I'm currently going on two months plus of a cycle when they always have lasted no more than 6 weeks. I'm serving as a Peace Corps volunteer in Botswana and the CH's totally caught me by surprise. They usually come every 4 years and it's only been 2. And I'm in a location where I can't get Imitrex nasal sprays or O2, my two best friends.

During week 4 I asked to be put on Prednisone. It gave me relief as it usually does but as soon as I was done the HA returned. Now I'm thinking of going the Verapamil route. Haven't had to before because I could manage through the 4-6 week cycle.

My question...could I ask to be put on Prednisone again while the Verapamil is getting into my system? I finished the last round of Pred at the end of July. Is it still too soon to try again?

I thought managing these things was difficult enough in the States, but in Africa, oh boy!

Thanks all!

Yes, I went through 6 or 8 courses, consecutively stronger doses because it's the only thing that seemed to help me much. 

Just be careful about your weight if that's a concern for you.  The first course or two it didn't make a difference.  About the 3rd I started getting really hungry all the time.  Lots of people around here say just watch what you eat & you'll be fine but that wasn't my experience.  I gained weight no matter what I ate.

When I realized I'd gained 20 pounds in 2 weeks I was so frustrated I literally water fasted for 2 days and still gained 4 pounds!  After that I gave up worrying about my weight until I stopped the prednisone.   

It was very VERY hard to get the weight off, especially the round face I developed.  My normal diet didn't do it.  Had to go very strict, very low calorie, eating only protein & veggies to see a difference at all.

If diabetes is a big concern in your family, you might want to avoid it altogether.

My last cycle i was taking Presnidone along with the Verapamil.It worked really well for me

Absolutely. I would definitely ask the doc for a 2nd pred taper while the verapamil builds up. WOW...I've bitched about being out of town when a cycle started and waiting 3 days to get home to my "goodies"...02 etc....but Botswana.....damn... :'(
Joe

Yes, you can start again. It's not unusual for a first-timer, to start, for example on 60mg, then find its not a sufficient dose. Then starting over at 80-100mg is O.K. it being the duration of use which is careful to monitor.
==== Re. Verap:

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).

=======================================
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.

Katherinecm wrote on Aug 31^st, 2010 at 6:53am:

Yes, I went through 6 or 8 courses, consecutively stronger doses because it's the only thing that seemed to help me much.  Just be careful about your weight if that's a concern for you.  The first course or two it didn't make a difference.  About the 3rd I started getting really hungry all the time.  Lots of people around here say just watch what you eat & you'll be fine but that wasn't my experience.  I gained weight no matter what I ate. When I realized I'd gained 20 pounds in 2 weeks I was so frustrated I literally water fasted for 2 days and still gained 4 pounds!  After that I gave up worrying about my weight until I stopped the prednisone.    It was very VERY hard to get the weight off, especially the round face I developed.  My normal diet didn't do it.  Had to go very strict, very low calorie, eating only protein & veggies to see a difference at all. If diabetes is a big concern in your family, you might want to avoid it altogether.

ha!
I SOOOOO hear you!
Last fall was on 60mg Prednisone for 6 weeks and then tapered.  Gained about 30lbs.  Still haven't lost it, but, at least, now I can blame it on the baby....

I very much hate/love/love/hate prednisone...

Lettucehead wrote on Aug 31^st, 2010 at 1:08pm:

ha! I SOOOOO hear you! Last fall was on 60mg Prednisone for 6 weeks and then tapered.  Gained about 30lbs.  Still haven't lost it, but, at least, now I can blame it on the baby.... I very much hate/love/love/hate prednisone...

I decided if Heidi Klum could be back on the runway a few weeks after giving birth I should use her plan:  David Kirsch's Ultimate New York Body Plan.  There's a couple books out or you can do it virtually at his website. That's the only thing that worked for me. 

It sounds like a ridiculous crash diet when you first hear the details (no Alcohol, Bread, starchy Carbs, Dairy, bad Fats or Fruits and less than 1000 calories a day )  but it's very healthy- small meals of lean protein, nuts & veggies, surprisingly yummy recipes.  Lots of models & actresses use David as their trainer.  Dr Oz recommends it too.

I find it much easier to stick to if I do 3 days of just low carb first  & ignore the caffeine/aspartame rules.

Katherinecm wrote on Aug 31^st, 2010 at 2:11pm:

Lettucehead wrote on Aug 31st, 2010 at 1:08pm: ha! I SOOOOO hear you! Last fall was on 60mg Prednisone for 6 weeks and then tapered.  Gained about 30lbs.  Still haven't lost it, but, at least, now I can blame it on the baby.... I very much hate/love/love/hate prednisone... I decided if Heidi Klum could be back on the runway a few weeks after giving birth I should use her plan:  David Kirsch's Ultimate New York Body Plan.  There's a couple books out or you can do it virtually at his website. That's the only thing that worked for me.  It sounds like a ridiculous crash diet when you first hear the details (no Alcohol, Bread, starchy Carbs, Dairy, bad Fats or Fruits and less than 1000 calories a day )  but it's very healthy- small meals of lean protein, nuts & veggies, surprisingly yummy recipes.  Lots of models & actresses use David as their trainer.  Dr Oz recommends it too. I find it much easier to stick to if I do 3 days of just low carb first  & ignore the caffeine/aspartame rules.

Really, probably any diet I do would have a lot more possibility of succeeding if I just got off my butt and did some exercise...

;) ;) ;)

Thanks! I figured it would be ok. Now I just need to convince the doctors here of it. And thanks for the FYI on the weight thing.

Although most here seem to say yes to going back on prednisone, I would say no, or at least think long and hard about it. I am not saying it is wrong for everyone that says yes here, this is just my experience and personal opinion, and also something serious most doctors forget to mention as a risk to their patients.

Why do I say no to prednisone?

Long-term and repeated use of prednisone can cause Avascular Necrosis, or Osteonecrosis. I thought prednisone was a miracle drug for my clusters, but skipping the long story, after being on and off it for a few months, I developed AVN. This is something you don't want to risk. Cluster headaches are enough. It causes bone to die in multiple joints and then causes them to collapse. I am affected in both hips and both knees. I am looking at months of surgery and crutches, and possibly hip replacements at age 23.

I personally don't think that a few weeks or a month of being PF is worth the possible repercussions of prednisone use. Your location may make it impossible to choose anything but the prednisone. I am just saying, as one cluster sufferer to another, to weigh the risks with the benefits.

Certainly Kate isn't the only one here to have been saddled with crushing after effects from prednisone, and AVN isn't the only danger from this most dangerous of drugs prescribed for CH (IMO).

What I have read about it and experienced with it though is that it is mainly sustained high doses that are very risky, with the tapers not being so bad.

I may revise that opinion though, Kate, if you developed AVN without sustained high doses.....?

bejeeber wrote on Sep 2^nd, 2010 at 7:22pm:

Certainly Kate isn't the only one here to have been saddled with crushing after effects from prednisone, and AVN isn't the only danger from this most dangerous of drugs prescribed for CH (IMO). What I have read about it and experienced with it though is that it is mainly sustained high doses that are very risky, with the tapers not being so bad. I may revise that opinion though, Kate, if you developed AVN without sustained high doses.....?

I did not use sustained high doses and this happened. I started at 60mg, which is standard to try for cluster headaches. I got off the medication and they came back, so I was put on 25-30 mg (I don't remember which one), which had been the lowest dose that kept the headaches away. I was only on this for a few months, including the time tapering off,  during a long cycle, before I was diagnosed with AVN, and subsequently fully tapered off the prednisone. So my belief is, although it is more common with sustained high doses for a period of a year or more, it is certainly possible with lower doses taken for shorter periods of time, especially taken repeatedly in a short span of time.

I decided that being obsessive-compulsive about anything - including what you eat - is a quick way to find yourself in a straitjacket.

Every medication has risks and this is something that can be very easy to forget.  Even something as innocuous as tylenol can be deadly with liver toxicity if not used with caution.

The idea is to understand the risks and benefits of your medications before starting them.  Please make a point of discussing the issue with your doctor prior to starting any medication.

I have no idea why some people can use prednisone at goodly doses for years and some people who use it get AVN in fairly short order. 

I, myself, because of the connective tissue disease, have been on doses varying from 5mg to 60mg per day for most of the last 5 or so years.  So far, so good - at least in terms of AVN...

God bless to you though, Kate.  I hope you do well...