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Verapomil – To try or not to try (Read 3445 times)

Bob in Las Vegas

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Verapomil – To try or not to try
Feb 20^th, 2010 at 2:49pm

Just curious as to what the more experienced folks here think about this scenario:

I started to get episodic CH in my 30’s (I’m 54 now). For the first several years it kicked in routinely twice per year and always lasted exactly 2 weeks, and was very severe for about 12 days, then milder the remaining 2 days, and then was gone.

In recent years it has changed to where it’s kicking in only every two years or so, but with longer cycles (about 6 weeks). I am currently in my FIRST cycle where I actually know that this is CH… like others, I had always gone on the assumption/advice that this was all about sinus issues (even had surgery about 6 years ago).

This current cycle has been a bit different, in that most of the attacks have been kept to a maximum of around KIP 6 or 7 (with only a few going higher). I am using O2 to treat the attacks now, and so far I’m feeling that it’s helping. On the other hand, it could just be the fact that I know what I’m dealing with this time and that in itself helps keep me calmer than I otherwise would be. I’m also not following all the sinus-infection treatments that past docs have always tried with me (and avoiding pain meds). My pattern this time has so far been the first time where every few days I actually skip nightly attacks, or at least only have one or two. This greatly improves my daytime experiences, as my face isn’t getting quite as beat up feeling as it always had in the past. I’m about four weeks into this cycle now.

My wife, bless her… is one to always strive for “more”. She has read about Verapomil, and just yesterday convinced our doctor (he’s just a GP, but did consult with a headache doc) to prescribe some (in conjunction with Prednisone). He has issued a prescription for 120mg/day, along with a course of Prednisone.

I am extremely hesitant to go down the Verapomil route just yet, given some of the anecdotal stories I’ve seen about it possibly prolonging (or even cronic-ifying) peoples’ cycles. I’m guessing/hoping/praying that I can sail through the remainder of my current cycle to its normal conclusion in another week or so with the O2 alone (I’m also trying to drink loads of water, and of course avoiding things that I know trigger me). I also have some Lidocaine spray which helps ease the sinus irritation. The thought of inadvertently extending this cycle is particularly unsavory to me, especially since I have a cruise booked for late March.

I’m curious as to peoples’ thoughts on this, particularly from those who have direct experience (good or bad) trying Verapamil.

« Last Edit: Feb 20^th, 2010 at 3:02pm by Bob in Las Vegas »

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seaworthy CH.com Hall of Famer Offline Posts: 706	Re: Verapomil – To try or not to try Reply #1 - Feb 20^th, 2010 at 4:52pm I wouldn't go through a cycle without it. 720 mg per day.
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anthony g CH.com Old Timer Offline I Love CH.com! Posts: 318 manhattan nyc Gender:	Re: Verapomil – To try or not to try Reply #2 - Feb 20^th, 2010 at 5:05pm im towards the end of my cycle now 720 mg a day!
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Bob in Las Vegas CH.com Newbie Offline I Love CH.com! Posts: 6 Las Vegas Gender:	Re: Verapomil – To try or not to try Reply #3 - Feb 20^th, 2010 at 6:49pm seaworthy wrote on Feb 20^th, 2010 at 4:52pm: I wouldn't go through a cycle without it. 720 mg per day. Do you take it by itself, or in conjunction with Prednisone?
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burnt-toast

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Re: Verapomil – To try or not to try
Reply #4 - Feb 20^th, 2010 at 7:17pm

I started with Lithium Carbonate and later added Verapamil and Melatonin. I’m currently @ 1200mg Lithium Carbonate/720mg Verapamil /12mg Melatonin daily and most likely wouldn’t be sane without this combo.

In regards to Verapamil lengthening cycles I can only say that I’ve found nothing in terms of research to support or refute what some report on the board. I came out of the gate as a chronic so it’s not an issue that I’ve done more than cursory research on.

Obviously discuss the issue(s) with your Neurologist and make choices you are most comfortable with. Detailed prescription drug information can be obtained from Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Maintain an accurate journal and make decisions based on your actual experiences.

So many folks in this boat seem to respond to various treatments in a wide variety of ways. Focusing on how you respond to specific treatments seems (for now) to be the most effective way to identify what provides the most effective relief.

Burnt-toast
(Tom)

« Last Edit: Feb 21^st, 2010 at 9:39am by burnt-toast »

Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space.

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seaworthy CH.com Hall of Famer Offline Posts: 706	Re: Verapomil – To try or not to try Reply #5 - Feb 20^th, 2010 at 8:51pm Always with a pred. taper
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Joni

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Re: Verapomil – To try or not to try
Reply #6 - Feb 20^th, 2010 at 10:01pm

I have had CH for 25 years.
I have used Verapamil for the last 2 cycles.
My cycles are still 8 weeks long as usual.
But the shadows are terrible and I never had them before.
I cannot say it is the Verapamil, though, as CH can change over time.
I don't know the answer, but I am afraid not to take it.
It does help.
Everything is a gamble, but the bottom line is what I will do for pain.

Experience: That most brutal of teachers. But you learn, my God do you learn. -C. S. Lewis

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DennisM1045

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Re: Verapomil – To try or not to try
Reply #7 - Feb 21^st, 2010 at 8:41am

The choice to go prevent free is a very individual one. We all have to do what works for us.

However... Wink

If you start the pred taper without the verapamil it may put you in a very bad situation when the taper is gone. For some folks, the taper kills the cycle. End of story. For others, it just really pisses him off. It can be a rough ride.

So if I was starting a pred taper, I'd start the verpamil too just to be safe.

Good luck either way.

-Dennis-

Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.

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Bob Johnson

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Re: Verapomil – To try or not to try
Reply #8 - Feb 21^st, 2010 at 9:28am

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.

==========

And PDF file, below.....

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(90 KB | 86 )

Bob Johnson

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TcRoc CH.com Newbie Offline I Love CH.com! Posts: 5	Re: Verapomil – To try or not to try Reply #9 - Feb 21^st, 2010 at 1:23pm It has been a life saver for me currently on 360mg a day and may up it
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Batch

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Re: Verapomil – To try or not to try
Reply #10 - Feb 23^rd, 2010 at 10:15pm

Hey Bob,

Ufdah!!! Not many CH'ers from Snus Junction... (Poulsbo, WA for the rest of you unfamiliar with the Pacific NorthWest)... It's a Norwegian enclave North of Bremerton and across the sound from Ballard, WA, a suburb of Seattle... a.k.a. Norwegian Central for the old timers...

I grew up in Tracyton and went to Central Kitsap... U of W after that...

Please let me start from the top on your post... If you're using oxygen therapy at flow rates that support hyperventilation, you should be knocking down cluster headache attacks at Kip-6 to Kip-7 in 6 to 7 minutes...

However, your comment about O2... "I’m feeling that it’s helping," leads me to suspect that you're using a much lower flow rate ≤15 liters/minute.

We've collected a lot of data on aborts with oxygen therapy that clearly shows an oxygen flow rate of 25 liters/minute is the minimum that supports hyperventilation and that higher flow rates are even more effective in providing reliable and short abort times...

Regarding taking verapamil or not... That's really a call between you and your doctor... It's the leading preventative listed in most standards of care and treatment for our disorder as shown in the chart below...

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

Having said that, verapamil comes with some potentially disturbing side effects at higher dosages including heart blocks and arrhythmias that may require EKG monitoring. See the verapamil study by Dr. Peter Goadsby, M.D. et al. at

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I tried nearly every preventative listed in the cluster survey at the left when I was episodic... but when I looked carefully at the results, the risk-reward ratio was not in my favor with any of them including verapamil...

These preventatives were too invasive with too many side effects for me. In other words, I was taking some risks by using these preventatives, yet I was still having attacks... It just wasn't worth it...

The only preventative that worked... if you could call it that... was prednisone. I was on it for nearly 9 months for another condition and sailed through one spring cluster headache cycle with only a handful of minor attacks... but there was a price to pay... I became a refrigerator raptor and gained over 30 pounds in just a few weeks. On top of that, taking prednisone that long nearly destroyed my endocrine system... My doctors at NIH sent me to an endocrinologist who put me on a post menopausal regimen of fosamax and hormone replacement therapy for a year... That was clearly preferable to being chased down the street by sumo recruiters...

I turned chronic in 2005 when my spring cycle started and never ended... I wasn't officially diagnosed as chronic until early 2006. By then I was burned out on imitrex so my neurologists at NIH suggested neurontin (gabapentin)...

I gave the neurontin a month, titrating up to the maximum dosage the first week, but the resulting 3-martini buzz made driving unsafe and fat ankles caused by the neurontin required a diuretic. On top of that I was still having attacks... Again... Not worth it...

That put neurontin in with the other preventatives at the unfavorable end of the risk-reward ratio... so the doc's at NIH let me taper off the neurontin and on to oxygen therapy...

I'd done my homework here on CH.com, so made sure the Rx read 7 to 9 liters/minute with a non-rebreathing mask. Fortunately the home oxygen service delivered an M-size oxygen cylinder that same afternoon. It came with a flowmeter type oxygen regulator with a calibrated venturi tube and needle valve to adjust the flow like you see on the wall next to hospital beds.

My first attempt trying to abort a fast-rising Kip-7 attack was a total failure... 45 minutes after starting the oxygen the reservoir bag on the disposable NRB mask was constantly collapsed and the beast was still in control hammering out a solid Kip-8... so I took a 25 mg imitrex tablet, put an ice bag on my head... and kept on sucking...

When the pain finally subsided 30 minutes later, I got back on the Internet and found Dr. Todd Rozen's study on using oxygen therapy at 15 liters/minute...

When the next attack hit that same night, I jumped on the oxygen as soon as I felt the onset of the attack and cranked the needle valve open to 15 liters/minute... That flow rate worked... I got the abort, but it still took 30 minutes and I was still collapsing the reservoir bag with each breath...

That's when the light came on and the clue bird made a low pass... I had over 3000 flight hours flying Navy fighters and all of that flight time was spent breathing 100% oxygen... What was different? It was the flow rate... and I wasn't getting enough oxygen to ventilate my lungs even at a flow rate of 15 liters/minute!

At midnight when the third attack of the evening hit, I cranked the needle valve open to what I estimated was 30 liters/minute and was rewarded with an abort of a Kip-8 in 12 minutes... I'd broken the code... "More is better!"

By 06:00 the next morning I'd upped the flow rate to an estimated 45 liters/minute and was knocking down Kip-7s in 8 to 9 minutes...

From that point on, everything changed for me with respect to my cluster headaches... I was now in control... Although I couldn't prevent my attacks... I had the confidence of knowing I could abort them rapidly and reliably.

All the anxiety over the next attack was gone and best of all, the only cluster headache medication I've taken since then is an occasional snort of imitrex nasal spray during airline travel.

We've learned a lot since then about the respiratory physiology behind this very effective method of aborting cluster headaches... The most significant finding was the role played by CO2 levels...

We knew that oxygen was a vasoconstrictor and that breathing 100% oxygen at 15 liters/minue to push our system into hyperoxia would eventually abort our cluster headache attacks... most of the time... if we started early... and there were no other medical problems...

What we didn't realize until we reviewed several clinical studies, was that lowering CO2 levels and elevating arterial pH by hyperventilating with 100% oxygen until we achieved rerespiratory alkalosis enhanced vasoconstriction and the abortive effects of hyperoxia resulting in safe and very fast aborts of cluster headache attacks.

We also learned that elevated CO2 levels and low arterial pH (too much acid) had just the opposite effect. They acted as powerful vasodilators... so powerful that they can totally negate the effects of hyperoxia and prevent oxygen therapy from aborting our cluster headache attacks...

I can hear the wheels turning... How can CO2 levels rise while breathing 100% oxygen... The reason this can happen is relatively simple to explain...

Our bodies run like an engine (metabolism). We burn fuel (glucose) and oxygen from the air we breathe and that produces energy, heat, CO2 and water.

If we're sleeping or sitting motionless in front of the boobtube, the engine is at idle and our lungs are able to inhale oxygen and exhale CO2 at low respiration rates and tidal volumes to keep the CO2 levels normal.

Normal respiration rates run 12 to 18 breaths/minute. With an average tidal volume of a half liter of air inhaled with each breath, that works out to a minute volume range (the volume of air inhaled in one minute) of 6 to 9 liters just to maintain normal CO2 levels.

Now lets look at the average CH'er having an attack and trying to abort it with oxygen therapy at 15 liters/minute.

The first thing you notice is the level of physical activity... (the engine is no longer at idle...) Most of us rock back and forth hunched over our knees and bang on our heads or we stand dancing in little circles holding our heads while the reservoir on our disposable non-rebreathing mask is constantly collapsed...

This increased level of physical activity means we've stepped on the gas and are now burning fuel and oxygen at a faster rate...

We're also generating a lot more CO2 as a direct result of that increased physical activity... and at this level of physical activity, our bodies require a minute volume of 15 to 20 liters of lung ventilation just to keep CO2 levels in the normal range...

Now here's the problem that can stick us firmly between a rock and hard place... The oxygen regulator is set to 15 liters/minute and the non-rebreathing mask will only let us breathe what comes from that regulator... A minute volume of 15 liters...

If we're lucky, we'll have just enough lung ventilation to keep CO2 levels in the normal range and we'll eventually achieve an abort of the cluster headache attack with oxygen therapy...

Unfortunately for most of us, under these conditions our bodies are demanding a minute volume of lung ventilation greater than 15 minute liters (a flow rate greater than the 15 liters/minute we get through the non-rebreathing mask) just to keep CO2 levels in the normal range.

When that happens, the distance between the rock and hard place gets much smaller and the squeeze in on... Our CO2 levels began to rise above normal and at some point, this condition completely overrides and negates the benefits of hyperoxia... In short, we don't get the abort with oxygen therapy and the beast hammers on in complete control...

Knowledge is power... Once folks understand the mechanics and physiology behind this method of oxygen therapy... the answer is simple... Hyperventilating on 100% oxygen is very safe and very effective. Using a non-rebreathing oxygen mask with a 3-liter reservoir bag or a demand valve makes this method of oxygen therapy easier. Above all, we need an absolute minimum oxygen flow rate of 25 liters/minute if we really want fast and reliable aborts...

Hope this helps,

Take care,

V/R, Batch

« Last Edit: Feb 25^th, 2010 at 12:18pm by Batch »

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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neuropath

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Re: Verapomil – To try or not to try
Reply #11 - Mar 6^th, 2010 at 2:22am

Dear Bob,

In my humble opinion, being a chronic (and taking Verapamil daily) and reading that your cycles only occur once every two years for 6 weeks, I would suggest that you take a course of prednisone and then deal with the remaining cycle, if it isnt concluded by the time you taper off the steroids, with O2. I would not introduce Verapamil to your "diet" unless absolutely necessary. Prednisone on the other hand once every two years for two weeks is a very manageable therapy that is (unless you have any counter-indications to it) very risk-free.

Although there is no real evidence to suggest that it morphs your cycles, there is evidence that Verapamil has an impact on your cardio-vascular system. 120mg really is a pointless dosage and you would have to go to dosages of at least 480mg a day or more to make an impact, taking it at the start of the pred treatment, for it will take 2 weeks to have an effect. At this dosage an EKG is required in advance.

Not knowing you of course, it strikes me as unnecessary for someone of your age to introduce a drug like this to reduce (and probably not eliminate) the CH attacks for a 4 week period, if you have an arsenal of abortives at hand that will do the job and if you will have 2 years of PF periods thereafter.

Although I havent tried myself, there are numerous Episodals that have tried Kilowatt3's all herbal recipe, which apparently has aborted episodes and have left them seemingly entirely PF. I am not advocating the treatment but am advocating alternatives over chemicals where possible. Maybe worth reading his posts and forming your own opinion.

I hope this helps and that you will be PF soon and for as long as possible.

Best

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NancyB CH.com Veteran Offline I Love CH.com! Posts: 169	Re: Verapomil – To try or not to try Reply #12 - Mar 7^th, 2010 at 10:35am I agree with Batch, you might ask him about his lowering your blood ph with lemonade too. Especially if your half or more through your cycle. Sounds like by the time you get any relief from the other meds you'll be done anyway.
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boxcorner CH.com Junior Offline Posts: 39	Re: Verapomil – To try or not to try Reply #13 - Mar 18^th, 2010 at 6:03am As always, another excellent post by Bob_Johnson. I recommend the PDF attachment as required reading. Objective rather than subjective. It should be elevated to READ THIS status.
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Joni

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Re: Verapomil – To try or not to try
Reply #14 - Mar 19^th, 2010 at 2:57am

I love the science of critical thinking. Teaching it has changed my life. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Here is a short example:
-Joni

A SUPER-STREAMLINED CONCEPTION OF CRITICAL THINKING

Assuming that critical thinking is reasonable reflective thinking focused on deciding what to believe or do, a critical thinker:

1. Is open-minded and mindful of alternatives

2. Tries to be well-informed

3. Judges well the credibility of sources

4. Identifies conclusions, reasons, and assumptions

5. Judges well the quality of an argument, including its reasons, assumptions, and evidence

6. Can well develop and defend a reasonable position

7. Asks appropriate clarifying questions

8. Formulates plausible hypotheses; plans experiments well

9. Defines terms in a way appropriate for the context

10. Draws conclusions when warranted -- with caution

11. Integrates all items in this list

Developed (revised 3/24/04) by Robert H. Ennis, Professor Emeritus, Univ. of Illinois. rhennis@uiuc.edu

For further detail: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Experience: That most brutal of teachers. But you learn, my God do you learn. -C. S. Lewis

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