Hello all,  I'm in my third month with attacks and I havn't been pain free as yet.  First off, I do have oxygen, but still getting many HA's thru the nights.  
This is very unnormal.... usually I have a grib on them before now.  Yesterday I took a vacation day from work to go see a neuro in Ottawa,  1-1/2 hrs away from home and last night, I was at the end of my rope.  I found she didn't know a lot about CH's.  The only good thing than came out of the appt. she'll refer me to a headache neuro, but that could be in the spring of the year.  Also, she's scheduling me for a MRI, which is good, but I'm sure after putting up with CH for 23 yrs, it's not going to show anything.
My question is about Verapamil SR, since I've tried only 240mg's I'm increasing the dosage to 360 tonight... if that doesn't work, I'll increase to 480mg.  Should I give the 360mg a couple nights try, even if tonight it doesn't cover the pain?
Also, I would like your thoughts on the regular verapamil?  None of the doctors I've seen have never mentioned it.... please advise.
:-[  Appreciate the help, Sue

Sue,

I strongly recommend that you do not up your limits of verapamil without your doctors knowledge and monitoring.  For certain individuals, a higher level of verapamil is dangerous, and could be fatal.

Yes, there are those that take much higher levels, but that is with the doctor's know how and monitoring.  Close monitoring is CRUCIAL, especially in the beginning stages of usage of the upper levels.

Work with your doctor, not behind his back.

Chuck

ClusterChuck wrote on Nov 14^th, 2008 at 8:08pm:

Sue, I strongly recommend that you do not up your limits of verapamil without your doctors knowledge and monitoring.  For certain individuals, a higher level of verapamil is dangerous, and could be fatal.

Im with Chuck on this one, I was on Verap everyday for 14 years. Every time its upped your heart slows down, you need your doc to tell you what dose your heart can handle!

Dont be a fool and die when all you have to do is pick up the phone and talk to your doc!

We only tell you this because we care.

Hi Sue,

Listen to Chuck and Jonny...don't mess with your meds without your doc's knowledge and consent!

Also, lots of folks (I'm one) find that sustained release verapamil does not work or work as well as regular release. We are all different in how, if, or when meds work for ch, but many of us find that 480mg is a good maintenance dose. I go to 720 mg (like right now) in high cycle.

Best,

Jon

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.

Thank you for all your comments... Especially to you Bob.
Yes, I am following the advise of a doctor, but as I was in dire straits yesterday, I wanted to know all of your opinions with this....
I was fortunate to slip in to see my GP yesterday afternoon.  His suggestion to me was to take 120mg in the morning, then 240mg before bed.  If that doesn't work, to increase to 240mg morning/240mg at night.  Yes, he made it quite clear, that 480mg was as high in an amount that he was comfortable with.  Thank goodness for my gp, as the neuro didn't seem to realize how I had come to the end of my rope, I needed to exprience pain free again.

So Bob, the "short-acting verapamil" may be the preferred use over the sustained-releasesd?  (Not that I'm going to change anything right now.)  If you have any more information regarding the short-acting verapamil, please advise me were to find it.  Of course for research only at this point, but I would like to print information off for my next visit to a headache neuro and possibly use the next cluster I exprience.
Thank you again, you guys are great! :)

Good post, Bob.  I had experienced similar agreement when reasonably small increments are used stepping up or down, ok'd and noted by physician.  


Bob Johnson wrote on Nov 15^th, 2008 at 7:38am:

...steady and progressive drug increase until satisfactory control had been achieved.

Quote:

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. ...when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is...

This is a good way to test verapamil's effectiveness individually.  If effective, small increments up will get to a dosage not beyond necessary, adjusting the same way for fluxuations during a cycle or when other times may exasperate or lessen the condition at times.  Small increments while decreasing can leave much less in heavy shadows that could accompany going off the drug too quickly.

While I'm glad you appeciate your GP, the reality is that his lack of experience is making him cautious in dosing. It's not unusual to have to use upwards of 700mg to gain benefit, hence the article on stepwise trials.

If you can locate, a doc with experience with complex headache disorders is something to consider.
-----------
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.
==========

It's interesting that the question of which form of Verap to use has not been seriously tested. (A point in Goadsby's comments.) But G's position makes sense; want a med which works quickly but doesn't last too long. That gives an oppotunity to make dose changes more quickly--to the patient's benefit.

sue_g wrote on Nov 15^th, 2008 at 8:25am:

So Bob, the "short-acting verapamil" may be the preferred use over the sustained-releasesd?

I had mixed results with Verapamil until I switched to the regular release formulation.  The last two cycles 400mg of regular release has worked very well for me.  I took it 120mg/120mg/160mg.  Of course your experience could be very different.

Be safe and keep working with that Doc.

-Dennis-

I was on high dosage of Verapamil for many years. It did not completely stop the headaches but did somewhat diminish the intensity to an almost bearable ( in comparison to untreated).

Do watch for the warning signs that your heart is rejecting the drug after long term use.
My doctor never warned me...I just started to feel the odd flutter like a brief heart murmer that became more often and started to last longer until one day the heart rate dropped to 40 beats per minute and remained there as i lost the ability to stand.
In emerg at the hospital my ekg was pretty messed and the staff was confused until the Verapamil link was made.
As the dose was diminished and eventually ended everthing returned to normal with no ill effects.
Your body will change with time so just listen to any changes it tells you...i was a poor listener.

Hope the Verap does the trick for you.
Paul

Hi Sue. Verapamil has been my savior. I work very closely with my neuro with my CH's. I take 480mg verapamil reg. release daily and for the most part it keeps the beast at bay. He scripted me time release but we decided against it.

I have o2 within sight and an Imitrex injection kit with me 24/7. I have not used the Imitrex yet, as I will take the o2 over anything else if a hit gets through my barrier, but when back in the bush biking I take the Imitrex along just in case. A little hard to drag an o2 tank along while riding! LOL

I also monitor my BP daily, as my heart rate is lower by the Verap. This has been so far my easiest cycle yet and I thank the folks here on CH.com and the best neuro anyone could ask for. I am blessed for sure, and just want to pass this help along to others to get them some PF time while in cycle.

Keep reading, and if there is anything I can do for you just ask. ok!

  Barry :)

One point which I think has been missed:

You cannot change the verap. dose and expect to see results overnight. This is a slow acting med (with CH) and it usually takes several days. Unfortunately, part of the frustration with CH and, hence, need for patience.

Thank you again Bob,
Since last we spoke, I've had 7 out of 8 nights pain free.  I'm concentrating, keeping a close eye on what I eat to when I take my meds, I don't want to fall into sleepless nights anytime soon.  My next objective is to research and find a neuro that is familiar with CH's, so I'm ready for the next one.  This session of Cluster's really scared me, the meds needed to be stronger, to cover the headache's.....This is been a huge change for me.  
I appreciate your thoughts and information,
Thanks again,
Sue