I have been on time release Verapamil for years. I have high blood pressure so my PCP has just left me on it without any problems. However this last cycle has been going on since August 2015..pretty much daily since March. I recently had to switch Neuros since my guy retired and the new Neuro suggests I switch to regular Verapamil 3 times a day.

I've got to try something since I am going through 2 M tanks a week with night hits every 1-2 hrs. I have been on the D3 regimen for a few years and my D25 level the end of March was 91.

Any input would be greatly appreciated!

Judy

Hi Judy,

I used regular verap for many years...depending on cycle 480-1040 mg/dy in divided doses.Just some tiredness at the hgher dosage. Always kept well hydrated and ate lots of fiber to prevent constipation...which seems to be the major side effect for most.

Oddly...my BP is normally on the low side but verap did not take it TOO low...we've had discussions here re the large dosages clusterheads can tolerate vs those taking for BP issues...I've never figured it out...you and your Doc need to monitor. I assume you do periodic EKG...or at least after dosage increase as verap can effect heart rhythm.

One time got delayed release by accident....almost panicked because my goto "didna work nomore!!!"Successfully returned to regular release.... Others...tho not all... have reported same experience....

With neuro's permission I used to titrate dosages to match my cycle....and also found some success with timing doses just prior to expected hit times...

Note that verapamil and calcium may not play well together but I cannot remember the details...perhaps someone else can chime in...or ask your Doc/Pharmacist..

Best

Jon

There seems to be no overall consensus on which form of verapamil is "best". What tends to happen is that people find one form works for them and they stay with it.

A potential option for you is to increase the dosage. A dose of 360-480mg a day works for most people, but some need to go to around 1000mg a day, so there may be room for you to increase your dose, however you must work with your doctor around dose changes.

The other option is in using the regular verapamil is to spread the doses through the day, but target it at when you get most of your CHs. Which for you being at night suggests a smaller dose in the morning and middle of the day, with the largest closer to when you go to sleep. This will allow the maximum level when you need it, with the half life (the time taken for the level in your blood to drop by half) being around 6-7 hours on average, this should help cover you through the night.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Quote:

The mean elimination half-life in single dose studies ranged from 2.8 to 7.4 hours. In these same studies, after repetitive dosing the half-life increased to a range from 4.5 to 12.0 hours (after less than 10 consecutive doses given 6 hours apart). Half-life of verapamil may increase during titration.

Good hydration helps as I'm sure that there is concrete dust in them tablets.

If taking calcium, make sure you take it as far away from when you take the verapamil as possible. Talk to your doctor about it.

Thanks guys. Since I am already taking 240mg ER twice a day and am really getting hit, I'll have my PCP and Neuro get together and switch me over to regular Verapamil 3 times a day.
I figure after 9 months of this crap I'll try anything.

By the way I don't take calcium and my counts are good..I found that even timing it between my Verapamil caused me to get hit worse.

Thanks again..off to email my PCP and see how he wants to do this.

Judy

Hi Judy

  "I figure after nine months of this crap I'll try anything."

  When I was on Verapamil I used the blue oblong (breakable) tabs. SR I believe, but it's been a while.  At one point I was switched to Veralan, a capsule form of Verapamil which DID NOT perform as well . . . it was also 3 times the cost . . . new delivery system brings new charges.  Went back to my blue tabs.

  "anything"
  I had cancer surgery Feb or April 04 (bladder cancer, radical cystectomy, removed bladder and prostate), followed a couple months later by 3 months chemo.  Prior to chemo, my attacks had lessened in frequency/intensity and I decided to stop all meds prior to the chemo and rely on 02 to abort.   With the exception of triggered attacks, most hits could be killed at Kip 5 . . . . I thought this reduction may have had something to do with the chemo  . . . asked the board . . . no replies one way or another . . . and then I figured it out . . . .

. . . The WATER (see "water X 3"), tab on left.   After my surgery I was required to drink large amounts of water to keep my kidneys flushed and help prevent UTIs (have had many, but none since having an endless supply of catheters (I don't have a stoma).   As long as I kept up with my water intake, the attacks were kept to a level I could deal with, . . . . BUT. . . had a few occasions when my intake was greatly reduced for several hours and WHAM . . . . multiple, higher level attacks guaranteed.

  I've been PF for 2 1/2 years now on the D3 regimen.

  Water therapy can work but it IS NOT easy to do.  I carry a half gallon jug with me at all times.   If nothing else is working for you right now, give it a shot for a week and see what happens,

   Be  Safe,

      PFDANs,

         Richard

The clusterhead experts, like Doc Goadsby, say to use regular verap.

I just received a call from the new Neuro about switching to reg Verapamil. She wants me to take 120mg in the am and 120mg at night. When I asked about 3 times a day she said well you are taking 240mg a day now... I am taking 240mg time release twice a day and she didn't even notice! It is in my chart. Soo, I think I'm going to go to my PCP and let him write the scripts. Do I just ask him to split my 480mg daily into 3 doses with the highest at night when I get hit? I am so concerned that the Neuro didn't even check what dosage I am on now.

When you take the Verap isn't important because it's  slow in becoming active. When folks first start using it, takes about a week before you can begin to evaluate its effectiveness.

Effective final dose level is geneally high--400 and up isn't uncommon.

print the file below.

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I think I am going to let my PCP write my script and manage the changeover from ER to SR. I initially started Verapamil for both my BP and Clusters. The Verapamil didn't lower my BP enough so I also take Lisinopril, which did the trick. I stayed on the Verap. for the Clusters.

Since the ER doesn't seem to be working..been in cycle for 9-10 months now (normal is 6-8 weeks) I'd say the Verapamil is not working.

I've never heard back from the PA since I pointed out her mistake so guess it's to the PCP for me.

Yes...definitely print the file Bob sent and give it to your Doc...Docs have more respect for "papers" vs what you have leaned from professional patients like us. One of the hazards of the internet...everybody wants to tell Docs how to treat and they get resistant.....

Since you've already been on a form of verapamil I would think the ramp up phase would be minimal.

480 mg/dy was the least amount to have any effectiveness....for ME......and has been reported extensively on this site as the "sweet spot" of doses for the majority of clusterheads

Disagree that timing is inconsequential...I had some success with timing doses...which is known as
anecdotal evidence... so proof of nothing...MY experience only. Logically... a quick releasing med would give a higher blood serum level sooner after dosing...which is why the ER version...which is meant to level off the blood serum level throughout the day.. This just a logic argument...but worth an attempt anyway...

Best

Jon

I'll print it off for my family Doc. He actually is pretty open minded..endorsed the D3 regimen and said hey whatever works. Although he still panics somewhat when my D25 hits the 90's!
I am honestly wondering if I should just wean off the ER and try that since it evidently is not working. It didn't help my BP much either...I'll run it by the Doc before I do anything.

Thanks!
Judy

Tears of JOY this am. My attacks have been every hour on the hour for 3 months..all in REM at night. I started the Verapamil SR 4 days ago and was beginning to wonder if it was going to work better than the time release. I woke up this morning and realized I had slept almost 4 hours without a hit!!! My PCP told me it might take a few days for the levels to build up once I switched. We'll see what happens tonight but needless to say....I am in heaven!

Always great to hear someone getting relief. Long may it last.

Peter.

Great to hear of the improvement.

A response after 4 days is quick with it typically taking 7-10 days to take effect.

Only people with CH who have found relief will know quite what it means for such a wonderful change. Now enjoy sleeping and everything else.

Thanks guys!

We'll see what tonight brings but I did take a nap today and woke with a teeny tiny pain which O2 killed in 2 minutes.

Mike I have been on Verapamil ER for years so I was told the time the instant release would take to build up and take effect would be shorter.

If it works I am going to be kicking myself for a long time. My Neuro suggested months ago to try to switch.

...one of the great pleasures in life is a NAP..... just DELICIOUS...that it is denied to clusterheads in cycle is one of the cruelties of CH...I am DELIGHTED just to see you use the word!

I found Immediate Release Verpamil spread evenly throughout the 24 hours provides most benefit reducing frequency and intensity of attacks. To each their own. Might be a bit of trial and error test for your individual medical needs.

Kinda like dosage, some people get relief with 240mg and others with 640mg. However 480mg or above, you should get an EKG and monitor BP daily. Good luck. 8-)

-Gregg in Las Vegas