Verapamil...started almost 3 weeks ago, began at 240mg for 1st week.

Increased dosage to 320mg on 2nd week.

Increased dosage to 400mg for past 5 days and plan to increase to 480mg today.

Frequency down (from 8x--12x/day) to 5x/day based on diary over past 5 days at 400mg Verapamil.

Pain intensity has reduced somewhat, but by no means manageable without o2 that provides relief 70% of the time.  KIP 7-8-9 still typical of my daily life. 
Out of Imitrex

Trying to do some math and would appreciate input...

Granted everybody responds differently to each medication.

It's understood what works for one cycle may not be effective on the next cycle.

Trying to calculate when I can anticipate 2 or less attacks in a 24 hour period.

Neurologist recommended 3 weeks Leave of absence from work to give Verapamil a chance to help .  Scheduled to return this coming Monday and still attacked 5x/day so i'd like to PREDICT when I may be able to return to work, budget my $, etc.

If Verapamil typically takes 2 weeks to titrate blood levels to therapeutic dosage, how long does it typically take to provide relief with each dosage increase?

How long does one endure the daily and nightly TORTURE by the DRAGON before realizing this as good as it gets? 

Providing the EKG and blood pressure are ok, how much of an increase and how often do you increase dosages of Verapamil before you accept this is as good as it gets?

Or when do you give up on Verapamil as a sole med and consider adding something to the mix such as Lithium, Topomax, etc?

My neurologist is open to listening and admits I know more than he on CH's, so I would like to learn as much as I can here before going in for another appointment and being prescribed additional treatment that is potentially wishy washy.

I am confident with my basic 101 knowledge about CH's, yet feel still so helpless in understanding what is truly in my best interest.

Any suggestions?

Quote:


Looks like a start.  Sometimes a prevent may have trouble catching up to an established bad period - like taking an abortive when a hit is in full swing.  A longer way to go to overtake the hit. 

See if results continue at 480mg/day and maybe ask doc to consider moving to 640mg/day as needed. 

Give it a chance and stay close to oxygen.

Vegas, it sounds like a good start is right but people's experiences definitely vary. Odd as it sounds, I had almost no decrease in headache frequency up until I hit 720mg (including very little difference at 640mg). Then, poof, had a lot of pain free days and that dose worked well for a while. I also know some people find enormous success with as little as 480mg.

That said, I'm sure you know by now from my recent posts that the Verap has not really been working great. I think my Doc mentioned something about Neurontin also being helpful in conjunction with Verap (I'm on them both for the time being). But yes, as others have said, it's kind of impossible to calculate. Thank goodness it's going in the right direction though!

LasVegas wrote on Nov 17^th, 2011 at 3:49pm:

LasVegas wrote on Nov 17^th, 2011 at 2:46pm:


It is during this period, when gradually increasing the verap, that a pred taper is typically used.  This keeps things at bay for a short while.  A sleep aid and something for the stomach should be prescribed to accompany a pred taper.

When I first started, my first pred taper was a 20 day one, with 20mg tablets.  Five in the morning for 5 days.  Then four in the morning for 3 days, three in the morning for 3 days, two in the morning for 3 days, one in the morning for 3 days, then 1/2 tablet in the morning for the last 3 days. 

At the same time verapamil was worked in at 120mg/day for one week, 240/day for the next week, then 360/day the third week. 

I was still doubtful at this time.

That was a start.  I went to 480 next and asked how far we'll go.  My neuro said between 720 - 900 before trying to work in another preventive med.   640mg/day turned the corner very well at the time.  This fluctuates according to need at different times.

This was her opinion and it worked for me with prescribing oxygen and a some Imitrex. 

This was the only time I used pred, but it was a useful time.

You're starting 480mg/day presently.  Ask your doc if 720mg is necessary, is he willing.  If you are also, it may be that less will turn a corner for you, too.  And it doesn't have to stay at a high level.  Once captured and under control for a while, later, small incremental decreases may bring you to the minimum level needed.

If you decrease, do it gradually.  I've found the more I take per day, the longer it takes the effect to be felt when decreasing.  For instance, above 480, the effects of decreasing aren't felt for about just over 48 hours.  If I'm only on 240, the effects are felt in 24 hours.  I think I saw Guiseppi mention something like that too in another thread. 

Increasing gradually is recommended also.  As Bob Johnson once put it, for the body to "accept" the change.

You should begin to see some improvement soon, but catching a runaway cycle at first can be slow to overtake and manage.


Good luck.       

Kevin and Jon,
Thanks for sharing your experience and suggestions.

Tomorrow will begin 16 weeks this cycle.  I've already had 2 Pred tapers this cycle and am not going to do a 3rd Pred taper this cycle as the side effects are too awful.

Not sure if I took 480mg yesterday or 320mg.  I thought I took 160mg in the am, pm and before bed.  However, last night I was so exhausted I passed out early to bed and when I awoke with TORTURE by the DRAGON and successfully aborted with o2, I question myself if I took my night time Verapamil.  I did not take the "before bed" Verapamil in fear I may have already taken it and didn't want to chance doubling that dose.

I've noticed that i've become very forgetful lately, not sure if it's the Verapamil or 15 weeks of sleep deprivation, think it's the latter.

So I will begin 480mg today, putting all my pills aside so I know I did or did not take them; opposed to just taking the pills from the prescription bottle.  As shared in a previous posting on this thread, I have titrated from 240mg which began almost 3 weeks ago.

Will continue to be a tortured guinea pig and hope 480mg is effective.  480mg has been an effective dose reducing intensity and frequency for me in the past but don't recall how much reduction of intensity and how much frequency reduction. 

Guess to determine what dosage is effective is a personal decision, as one just has to weigh out their personal lifestyle/work circumstances.  I know I personally will not function effectively at work nor would it be worth my time if I have a poor night sleep from waking with CH's AND if I have 2+ daytime attacks as o2 will be unavailable and can't afford the Imitrex financially on a daily basis nor afford Imitrex rebounds which are very common for me.


What works one cycle may not be effective the next cycle, as the DRAGON morphs.  Also, as I get older i've noticed I become less tolerant of pain.

I plan to increase dosage in a few days of giving 480mg a chance, if no tolerable improvement.  The time factor is the biggest problem I see with Verapamil as it takes so long to become effective requiring time between increased dosages to avoid blood pressure and heart issues.  This Verapamil time factor has become my biggest problem lately.  Will it be effective at this dose?  If so, how long do I "test" it before I feel comfortable leaving my home o2 for any length of time such as returning to work full-time? Etc., etc....I now realize answers to these questions are individualized to each CH'er.

I do value the input shared as it helped steer my thoughts in proper direction to understand what I must continue to try. 

Thanks again.

LasVegas wrote on Nov 18^th, 2011 at 2:21pm:


Sorry if we've gone over this ad nauseam, we very may well have and I've forgotten, but have you considered a demand valve system for the o2 , since it is not only the most effective o2 delivery system, but in effect it also conserves the o2, as it only shoots it out on inhale. Maybe that would make the small tank thing a bit more do-able?

Hi Marc,
Similar professional background and also been here since 1999; but every CH'er has their own value of time, patience and tolerance of pain. 

Thanks for sharing!

Kevin,
Great tip about the bottle facing back/forth and 240mg @ 2x/day sounds easier to remember than 160mg @ 3x/day.

Thanks,
Gregg

LasVegas wrote on Nov 19^th, 2011 at 11:26pm:


Yes, Gregg.  Before posting I looked through this thread to see if you mentioned what kind of verap, but didn't find it.  While posting I meant to ask, replying got drawn out on other points and forgot to include that question.  So sorry.  A mistake epitomizing how important it is to continually stay on schedule with each particular release type.

Not a good time for this to happen.  Very sorry again. 

Well, influencing the suggestion of label turning to remember is the fact my label says "take one every 8 hours".  However, being that they are SA (sustained), I know they can be taken twice instead of three times daily and still maintain a full day's coverage.  I had problems remembering too. 

At first it was prescribed to take all in the morning, but that wasn't necessary either, I felt tired as the day only started and sometimes got the worst early morning hits before taking them again.  I found twice daily for sustained to work best for me. 

Three times a day would be important to stick to for the quicker-acting.

Lenny brother, i've got so many alarms going off on my phone as a single parent that I already confuse which is which.  Good suggestion though, better than wondering why I have a reminder string on my finger

I've seen several threads discussing verapamil where some people get the best result with the instant release version and others with the sustained release version. What may well work best for you is a combination of the two with a certain dose via the sustained release, with top ups of instant release just before you tend to get your CHs.

We all seem to react slightly differently so it may be time to experiment with things under the guidance of your doctor.