First time poster here.  My husband has been suffering with these dreaded headaches misdiagnosed for about 6 yrs until last yr I took information on cluster headaches in with me explaining that this is what I watch him go through.

Dr put him on prednisone taper and verapamil er 140 mg last cycle.  It lessened the intensity of the attacks by about 1/2 he says.  New cycle started 3 weeks ago.  Same taper and verapamil plus o2.  O2 he states helps alot but still getting hit pretty bad at night.  Should I be asking his dr to up his verapamil?  And it is my understanding that it is extended release?  Is that bad? 

I have been reading here since last year when I figured out that he was not having headaches from sinus infections.  I thank God we found this site as I know it helps him to know that he is not alone in this.

I am going to buy him some Melatonin tomorrow as well since it seems to have helped out quite a few here.

Thanks,

Lori

Melatonin worked wonders for my son but I think we overdosed him just recently when I bought a different brand.  He takes 9 mg. of reg. and 3 mg. of time released (more specifically 3 - 1mg. of 2 stage released...brand name NOW).  I cut all his nighttime headaches away which helped with the daytime.

Sorry - not experience with Verp.

Print this out and give to the doc. This protocol is well established and widely used.
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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 am on the ER Verapamil but at 360-480 mg per day 120 mg seems low to me.  I would ask your doc to up the verapamil and see if it helps.  Many here take the regular verapamil as it is of more help to them.  I take the ER because for some reason I can't handle the regular verapamil as well and need the steady stream of it in my system.  If upping the ER verapamil doesn't help then have him switch to the regular verapamil he may have to take it more often throughout the day but it may help him.

Good Luck and PF Wishes!

I am right there with Ginger, same experience same Rx. And congratulations on having done your research here...do explore all that is available and keep helping your husband. When the pain is so bad it's hard to even think. That's where our supporters show their true measure of heroism and mettle. Well done and suggest your husband sign on here as well. God bless! lance

Welcome to the board Lori, my wife found the original streaming CH board a million years ago and saved my sanity! We're very fond of our supporters.

As Lance said, do encourage him to sign in here and meet us. Nothing quite like interacting with others who actually "get it."

Joe

Hi Lori,

I'll add another vote for the protocol Bob posted above.  It made a world of difference for me when I used Verapamil.

Good luck and thanks for being there for my clusterbrother.

-Dennis-

Hi Lori...I'm so glad you found this site!  I'm a supporter for my hubby too (20 yrs) and finding this site this past summer was a life changer!  My hubby also on pred tape (ugh!) bad experience with that this summer.  He was also on 480 regular verap..towards end of cycle this year and still getting hammered everyday and after reading here, I upped his to 580 then to 640.  He started getting relief then..now don't know if that was because of the verap or if he was coming out of cycle.  My point is, I agree with others, 120 too low.  Read, post, update, and ask questions...so many GREAT people here truly want to help.  Welcome!   :)

Edit to add:  You might want to check the flow rate of his O2..most don't get relief under 15 lpm and many go 25 or higher...fyi

Quote:

...I upped his to 580 then to 640.

You did, or his doctor did? Verapamil is a prescription drug for a reason. You should NEVER mess with dosages without express consent of the supervising doctor.

Yes, I did...and when I posted about that a few months ago I made sure I mentioned "yes, we're self-medicating and I know that's a no-no".  I should have also said that in this post.  I was just trying to make the point in our collective experience here 120 verap is too low...

But, in our defense...when your doc can't get you in for 6 weeks, you're getting hit multiple times a day trying to work 10 hours a day 6 days a week with NO sicktime, O2 is just a half-hour delay of the inevitable and you can't take it in to work, your imitrex is long gone and the insurance won't pay for anymore for another 15 days, your body is turning purple because the pred is eating it alive, the er poo poo's your concerns, and reading here that some were using verap at a higher rate with success...we took the risk of self-medicating as many here often do.  Our decision and our decision alone and we would have live with the consequences.

Just to be clear...I'm not suggesting that for anyone else, it was our choice (just as others have to make their own choices on how to kick the beasts a$$)...just sharing our experience.

Well, as my wisened ol' gramma used to say, ya pays yer money and ya takes yer chances. I will state publicly that I think it's not a good move. I'll also tell you that I haven't walked a mile in your shoes.

It was an unusally ugly year Brew...what was normally a 4 month cycle went 6 months with no end in site and relentless hits that couldn't be controlled by meds that worked before.  When I read people going a year or two pf...thinkin it's time to look into bustin'.

his wife wrote on Jan 3^rd, 2011 at 3:12pm:

...thinkin it's time to look into bustin'.

Run. Don't walk. Seriously.

Bought some melatonin today.  He will try it tonight to see if it helps.  Last night was actually a good night though.  Only got up twice.  Previous four nights were almost no sleep.  As far as the verapamil, after we see how things go with the melatonin, I will call the dr and fax a copy of this protocol to him and see if he will change it up.  Sure would be nice to see him in control of it, instead of it in control of him!  He is three weeks into his cycle which last time lasted 6 weeks.  So he is definitely in the worst part of his cycle.  Thanks for the help!  Will let you know how the melatonin works........going with 9mg tonight!  I will also encourage him to sign on here also.

Lori

Sometimes melatonin can take several days of taking it daily right before bed to actually work, so don't get too discouraged if it doesn't right away.

The one thing in common is that we are all different.  I started a cycle this summer, and found a new doc who talked me into giving Verapamil a try.  I'm one of the lucky ones - a little bit of ER did wonders for me.   If the doctor drank, I'd buy him a lifetime supply of scotch in gratitude.

I've had a lot of ineffective dope in the past.  Whatever you do, please do it WITH a good doctor!  PF wishes.

Melatonin was a bust at least for the first night.  Horrible night.

Lori

I have had chronic CH for 7 months never had it before that. I am a 59 year old woman.  Neurologist gave me Verapamil and told me to build up to 240mg a day but I feel terrible on 240 mg. I only take 120 mg but it does not keep the CH away just reduces the intensity.  The bad thing is the days I don't have CH I feel dreadful, terrible palpitations, breathless and my head feels the way it would if you hung upside down. I had an ecg before taking Verap but really worried it is harming my heart.  Tried stopping it but CH came back with a vengeance.  Doctor not playing ball on 02 but printed off some stuff to take to him.  Does anyone else get bad effects from Verapamil.  I also take 10mg Amatryptaline at night.

JOHNSS:

You may have to start increasing the Verap in smaller doses over several weeks. Unusual but worth a try.

Other options in the PDF file, below.

The point being: finding an effective preventive med is better than only using an abortive.

See, also:




Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (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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JohnSS welcome to the board. Print out the oxygen info, take it to your doc. Lovingly and politley tell him if he does not immediately prescribe you 02, you will get a new doc. In his ignorance, he is depriving you of one of the most consistently effective abortives. That's absolute malpractice. DO NOT  let him send you for an oxygen saturation study. Your arterial 02 level is immaterial to the use of 02 as an abortive. I abort in 6-8 minutes using 02, that's not an unusual abort time. (02 rant over! ;))

Read what Bob has given you, his info is some of the most up to date research on CH. If you continue to have problems with verapamil, lithium and topomax both have loyal followings on the board as prevents. I take lithium at 1200 mg a day while on cycle. Blocks 60-70% of my attacks, at that level my wife can't even tell I'm taking it.

Welcome home, get busy educating yourself, doctors who are clueless on CH are sadly a common occurence around here. Educate yourself, form a cooperative partnership with a doctor and get busy stopping the beast!

Joe

hi Lori. welcome and its great the way you are supporting your husband. I have had ch for 13 yrs and my experience with verapamil is it works some what but 120 is not enough and ER is not as good. i just had two wonderful pain free years after a serious go at bustin. look into it it works better than anything else hands down. It worked so well i almost forgot about all this until last week. Wish i had kept up with my program. best wishes the people here are great no matter what weapons you choose for battle.
                                                          Mike