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?

In my decades of prowling medical literature I have no memory of seeing any effort to try and answer the specific question which you have raised, i.e., specific intervals re. dosing and response.

I assume you have seen the protocol about use of Verap. and dosing increases which I regularly post. It seems reasonable to go up to the 900mg level and then add lithium (as the most effective med next to Verap.)

Should Lithium not be effective, you still have a couple of other meds to try, notwithstanding, that they are not ranked as being as effective as Lithium. (Individual response to any med is always the unknowable variable--and source of frustration.)

Quote:

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.

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.

Thanks Bob and Kevin,

Just trying to predict when I can get well enough with typical Verapamil treatment to get my life back away from being a enslaved at home with the o2.

Timing is never on our side with CH's.

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!

I feel like such a helpless newbie posting these questions as I have had success in past cycles where I was very comfortable with my knowledge.

However, I was in a coma about 6 yrs ago (which I believe attributed to my 6 yr remission) and have memory loss of many aspects of my life.

Reviewing some of my posts in the archives section from years past makes me think I was once an intelligent CH'er and now am kinda learning all over again.

Head trauma triggered my CH's 32 yrs ago and head trauma triggered a 6 yr remission, strange but true!

Never have I experienced such a long cycle and that is my biggest concern/helpless feeling as I approach Week 16 and don't even have effective treatment, YET.

I found an old diary in the garage the other day.  It was from when I was 15 yrs old in CH cycle.  I wrote...Death is a gift when torture is involved!  As typical of many CH'ers I was contemplating suicide and back then (27 yrs ago) there was no effective treatment nor diagnosis.

The bright side today is I am not suicidal, and have proper diagnosis with medication that has been effective for me in the past....just hoping I get to effective dosage soon as this cycle has really been a challenge to say the least.

Suppose my unanswered question to those of you who use Verapamil is...how does one determine at what dosage is enough?  Do you just continue increasing dosages, providing BP and EKG are ok, until you finally are at risk of blood pressure or heart problems? ....Or do you just tolerate some relief understanding Verapamil will not provide 100% PF and just endure the attacks?

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

I feel like such a helpless newbie posting these questions as I have had success in past cycles where I was very comfortable with my knowledge. Ask away brother!...you CAN'T exhaust THIS family. And remember....the only dumb question is one not asked....maybe it's one someone hasn't thought of...or been afraid to ask. 30 yr vet here and I aint comfortable with my knowledge..... ;) However, I was in a coma about 6 yrs ago (which I believe attributed to my 6 yr remission) and have memory loss of many aspects of my life. Yikes...tough way to get a break.....questions/answers are a better option..... Reviewing some of my posts in the archives section from years past makes me think I was once an intelligent CH'er and now am kinda learning all over again. We ALL learn here...every day...just when you think you know it all...you DON'T...stick around..... Head trauma triggered my CH's 32 yrs ago and head trauma triggered a 6 yr remission, strange but true! Definite proof you don't have your head up your a.... Never have I experienced such a long cycle and that is my biggest concern/helpless feeling as I approach Week 16 and don't even have effective treatment, YET. "Yet" is the key word.....you WILL find. Coming off 28 weeks myself...thought it would never end....thought WRONG...... The bright side today is I am not suicidal, and have proper diagnosis with medication that has been effective for me in the past....just hoping I get to effective dosage soon as this cycle has really been a challenge to say the least. You may have no idea how delightful that statement is...but there are folks here with smiles as they read that...."a permanent solution to a temporary problem" is not in our credo.... Suppose my unanswered question to those of you who use Verapamil is...how does one determine at what dosage is enough?  Do you just continue increasing dosages, providing BP and EKG are ok, until you finally are at risk of blood pressure or heart problems? ....Or do you just tolerate some relief understanding Verapamil will not provide 100% PF and just endure the attacks? Excellent questions. My experience...with an aggressive neuro... was starting at a dosage of 480 mg/dy. It worked...then it didn't...so she raised dosage. At times I go to 1040. I titrate (with permission) between those two (seems below 480 maintenance just gets me in trouble). Regular BP and EKG's is a must. At least for me...I know whether working or not. Not = more hits than "usual" and higher level hits..... Best, Jon

Thank You Jon!  That was creatively well written and straight to the point!  I appreciate your reply!

-Gregg in Las Vegas

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

Just trying to predict when I can get well enough with typical Verapamil treatment to get my life back away from being a enslaved at home with the o2. Timing is never on our side with CH's.

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.        :)

Hey Gregg,

Kevin gave you THE primer...wonderful stuff...print it and put it on the wall!

One other thing. This has been the subject of much discussion...but was a while ago so you may not have seen. There are several forms of verap. "Sustained" release and "immediate" release. While not universal, myself and many others find that the sustained is not as effective as the immediate...regardless of dosage.
It also allows for a finer tweaking (I call it titration) of
dosages as you chase the cycle......


Best,

Jon

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.

Marc wrote on Nov 18^th, 2011 at 1:50pm:

LasVegas wrote on Nov 17th, 2011 at 2:46pm: Thanks Bob and Kevin, Just trying to predict when I can get well enough with typical Verapamil treatment to get my life back away from being a enslaved at home with the o2. ................. Portable O2 tanks let me work through 13+ years of being chronic. I fill them from the T size tank at home. I use E or Jumbo D for the car and tiny M4 and M6 (only 9"-12" long) tanks that fit in a small backpack along with my laptop. You can find better pricing by looking around, but here is a listing of sizes and rough cost: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE No reason to stay at home. You will get good at knowing where to hide while sucking down the O2........ Marc

Hi Marc,
Thanks for the advice, but not practical for me.  o2 only aborts 70% of my attacks and that is using proper o2 therapy beginning o2 at onset of attack. 

Unfortunately, I use more o2 than most due to a lung impairment.  A small tank in my car might be practical for some, but for me I require more o2 than most to abort attacks due to a lung disability.  I'm in outside sales, driving around all day, average 30 businesses daily, etc and just not practical.

Great suggestion for others, but not practical for my individual situation. 

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

A small tank in my car might be practical for some, but for me I require more o2 than most to abort attacks due to a lung disability.

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?

Well aware of demand valves.  I simply don't have the time nor the patience I personally require to abort attacks while interrupting appointments, sitting in my car to get hopeful 70% abort during my demanding workday.  Thanks though!

Back to the Verapamil dosage...will post any progress in days to come at increased dosage of 480mg which started today.

Fingers are crossed

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!

LasVegas wrote on Nov 18^th, 2011 at 11:48am:

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.

One reason I mentioned pred was that it be used for gradually introducing a preventative, it buys the time needed.  If it was pred alone, with no preventive med started, it can be that the hits come raging back right after the pred taper is finished.  That's why I mentioned that was the only time I used it, with the verapamil. 

At this point for you, already at 480, it may be less important now.



Quote:

I thought I took 160mg in the am, pm and before bed.

I've found it important to stay on schedule.  When being on 480, I took 240 in the morning and 240 at night, approximately twelve hours apart.  When taking it in the morning, I'd turn the bottle with the label facing backwards, I know I took it.  When taking it at night, I'd turn the bottle so the label is facing me, to know the night dose was taken.  Waking the next morning, if the label was turned around, I'd know I forgot to take it, etc.  It's a discipline, but fruitful.



Quote:

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?

Verapamil may never be good enough to be able to leave home unprepared.  Some carry a trex in the glove box (but trex has a temperature range it should be kept in, Vegas is hot in a car), some more suitably, oxygen.  It's at the most inopportune time a hit may occur. 

My long leash has been double shots of expresso available at numerous popular franchises, like Starbucks or McDonalds.  It has helped for MANY hits sporadically breaking through a preventative, however with a preventative, the hits come on a bit more gradual.  Knowing the inkling one is coming, or in the vicinity of appearing helps, and I can't fool around with any different priority at that moment. 

This may not work for most, so... if on the road a lot, even if oxygen saved you one Kip 10, it would be worth it.     ;)

It happens.

If at a cluster convention, the place is stocked with oxygen.  People are away from home.

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

Thanks,
Gregg

It may be easier to remember taking meds 2x/day instead of taking meds 3x/day but i've been SLAMMED all afternoon/this evening. 

Thinking because the Verap is immediate release that has something to do with it.  Going too long, since morning dose, until right before bed might be too long for me at this point.

Spreading the doses every 8 hrs might be in my best interest and just might have to tie a string around my finger to remember or something.

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

the Verap is immediate release Spreading the doses every 8 hrs might be in my best interest

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. 

Your intent was perfect, and logic made sense to help minimize forgetfulness; live and learn, right?

Thanks 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.

Gregg

For myself...i would take the verap every 3-4 hours(spread it out)...this is how my doc wanted it done...it is a pain in the butt (you'll get used to it after a couple of days)...just set the alarm on your cell phone to go off every 3-4 hours

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 :D ;)

That's why God invented multiple ring/alarm tones.

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.

Suffering, yet surviving test rat here appreciates your advice Mike, thanks for sharing.

Is heavy night sweating common with higher dosage?

Sheets and pillow absolutely are soaked ever night.

Not in my case (480-1040).....but we're all different Gregg.

LasVegas wrote on Nov 21^st, 2011 at 6:07am:

Is heavy night sweating common with higher dosage? Sheets and pillow absolutely are soaked ever night.

This is what they call "hot flashes"...usually happens with females...what is your story  :D :D :D

never happened to me...but i did stay at a motel 6 once

Not from the verap, but I remember nights of several 9+ hits and enduring 45 minutes for the abortive to kick in.  Sweaty.

Due to see neurologist in 1 week.  He prescribed me 240mg daily.  He went out of the country for past 2 weeks and although his office mgr was able to reach him daily, I thought nothing of asking permission to increase dosage.  Since I met with the doc a few weeks ago, I have since increased my dosage from 240mg to 480mg, as outlined in previous posts.  I go to the local drug store and check my BP every other day and is within normal range.  Also, no signs of dizziness, lightheaded, tightness in chest, etc.

Been on 480mg for 1 week now and still being hit an (average over the week) of 3x/nightly and 2x/day (Average total 5 within 24 hr period) + I have lingering annoying shadows that last several hours at a time that o2 does not rid.  I am debating on increasing again to 540mg as I feel desperate.

My concern, besides continuing attacks at this increased dosage, is most prescribing doctors have a policy against self administration without prior doctor approval. 

When I go to my appt next week, I am concerned he will discharge me as a patient.  I realize I should've consulted 1st before increasing dosages, but didn't and what's done is done. 

Advice? :-/

LasVegas wrote on Nov 25^th, 2011 at 1:14pm:

My concern, besides continuing attacks at this increased dosage, is most prescribing doctors have a policy against self administration without prior doctor approval.  When I go to my appt next week, I am concerned he will discharge me as a patient.  I realize I should've consulted 1st before increasing dosages, but didn't and what's done is done.

Virtually all doctors will not approve of patients changing doses without approval for the obvious reasons.

However there are a few things you can say to defend this, which include the fact that he was away, you researched the dose change and you monitored the results. It's not a perfect defence but it's a lot better than someone who has blindly doubled the dose without any consideration at all.

For myself, I've discussed this extensively with my GP. He freely admits that I am not his average patient in that I know significantly more about CH than he does and that I can make small changes in my verapamil dose in response to it's effect over time. However I do update them the next time I see them after a dose change and I update them with why I changed and it's impact. I also get 6 months ECGs which we discuss and so far has resulted in a constant PR interval.

So work with your doctors around the protocol for changing doses.

No change in the past week at 480mg with my frequency nor intensity and still the long shadows as previously mentioned. >:(

This is so frustrating, never had a cycle this long! :-[

O2 slave here! :-/

Went to neurologist, $300 cash visit for 15 minutes, who was disappointed I didn't start Topomax he wrote script for.  Told him I didn't want 1, 2 or all 3 of the side effects common i've learned about Topomax...stupidness, moodiness, weight loss.

Was honest with him and told him I increased to 480mg Verapamil and need another increase.  He said he would not increase mg without EKG and cardiologist recommended report stating what Verapamil mg dose is acceptable based on cardiologist recommendation.

LV,

Have you considered RC seeds?   I have been in cycle since March, but I can sometimes go up to three weeks between hits since I started using them.

Jeannie

Jeannie wrote on Dec 2^nd, 2011 at 9:23am:

LV, Have you considered RC seeds?   I have been in cycle since March, but I can sometimes go up to three weeks between hits since I started using them. Jeannie

Jeannie are u on prevents and doing the seed's ?

I am not on any other meds at this time. Only O2 and energy drinks for aborts.    I have, in the past, used Verap and seeds together. 

LasVegas wrote on Dec 2^nd, 2011 at 6:21am:

No change in the past week at 480mg with my frequency nor intensity and still the long shadows as previously mentioned. >:( This is so frustrating, never had a cycle this long! :-[ O2 slave here! :-/ Went to neurologist, $300 cash visit for 15 minutes, who was disappointed I didn't start Topomax he wrote script for.  Told him I didn't want 1, 2 or all 3 of the side effects common i've learned about Topomax...stupidness, moodiness, weight loss. Was honest with him and told him I increased to 480mg Verapamil and need another increase.  He said he would not increase mg without EKG and cardiologist recommended report stating what Verapamil mg dose is acceptable based on cardiologist recommendation.

Checking out your heart is reasonable. I hope you have insurance. I have a spot in my heart that doesn't conduct properly and my dosage was low and just recently was raised to 480mg per day.

It takes time to develope a relationship with a dr or neurologist. Mine respond to emails & that saves me payments for visits.

Can you request a copy of the neuro's report from customer service so you can see what he wrote in your chart. That way, if he is wrong or has made a mistake, you can communicate about it or decide to finhd another neurologist who is willing to help you.

No insurance.  Cardiologist appt this coming Monday.  $300 for new patient consult and $80 for EKG test.  Insurance would certainly have been helpful.  Hopefully my heart is strong enough to increase Verapamil dosage.

Went to Cardiologist this morning. 

EKG is normal.

Cardiologist wrote note "To whom it may concern...his blood pressure, heart rate and EKG are normal at current daily dosage of 480mg Verapamil.  For blood pressure and other cardiac indications 480mg of Verapamil per day is the maximum recommended dose.

If the neurology literature supports the safety and use of higher doses for cluster headaches I have no objection as long as his heart rate stays above 50/min, his systolic blood pressure stays greater than 90 and his EKG remains normal."

After I left cardiologist office, I immediately drove this hand written doctor note with copy of my EKG to the neurologist office and left this paperwork with the receptionist.

Less than two hours later, I just received a phone call from the neurologist who told me he did his research and can not find anything in any neurological literature to support an increase above 480mg.

I told him there are plenty of neurologists who prescribe higher doses than 480mg of Verapamil for CH's.  He told me I can either go to one of those neurologists or provide him with sound neurological literature promoting the safe use of higher than 480mg of Verapamil.

If anybody has any medical literature that shows higher dosages of 480mg Verapamil is proper treatment for CH's, please post link here on this thread and/or PM and/or email it to me.

This is bureaucratic bullshit at my painful expense! >:(

Seen below is the email I sent to my neurologist and he WAS satisfied with these two credentials for approving a Verapamil increase. ;)

Per our telephone conversation this morning, seen below is a link regarding Verapamil dosage for Cluster Headaches.

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

Additionally, please see attached pdf file (top of page 7) regarding Verapamil dosage for Cluster Headaches.

Please advise if these two pieces of supporting literature will suffice for an increased dosage to 560mg.

Thanks in advance.

---

It looks like you had a good day in being able to progress to what hopefully for you will be a more effective dose whilst at the same time getting the reassurance that the dose you're currently on is fine for your heart.

I hope the $ paid out returns dividends for you.

Mike NZ wrote on Dec 13^th, 2011 at 2:44am:

It looks like you had a good day in being able to progress to what hopefully for you will be a more effective dose whilst at the same time getting the reassurance that the dose you're currently on is fine for your heart. I hope the $ paid out returns dividends for you.

Thank you for your kind words and acknowledging my fight to educate my neurologist.  This recent experience of mine just goes to show how important it is for us CH'ers to be knowledgeable about this disease and the value of being a self-advocate. 

As usual, what works then may or may not work now. I've taken 960 mgs of verap with no relief. Now as a chronic in high cycle I started a course of verap after a 6 month hiatus. I was up to 480mg and headaches were lessening in frequency and intensity. I dropped to 240mg with no changes. I also started Batch's D3 regimen 2 1/2 weeks ago and I think that deserves most of the credit. FWIW.

Verap at 480mg worked great last cycle, this cycle it reduced some frequency and added daytime shadows that last on average 4 hours, go figure, hopefully the new 560mg I started today takes effect soon as i'm losing my patience, anti-inflammatory regimen has done absolutely nothing for me and have been on it over 3 months at 15,000 IU D3 and the last 2 weeks at 25,000 IU of D3 along with the omega 3, calcium citrate, magnesium. It does work for others though, again...go figure.

up to 640mg, 1 week of PF nights, still getting daytime shadows up to 3 hours unless I abort also still getting at least 1 but not more than 2 attacks everyday, blood pressure on the lower side but don't give a shit as the trade off for sleep and minimal attacks is worth it

Two weeks PF nights :)

Three days no shadows  :)

Two days no attacks  :)

640mg is my needed dosage this cycle and am starting to feel really optimistic about a normal life again  :)

Hopefully this living nightmare is over  ::)

Wishing everybody at CH.com less pain w/ more productivity in their lives in 2012  ;)
-Gregg in Las Vegas

I hope this does it. :) <3

Gregg
So happy to hear that buddy!! PF for life bro!
Anthony

tomorrow will be 3 weeks PF and going to start my taper down and beer test this weekend, fingers crossed for good luck ::)

LasVegas wrote on Jan 11^th, 2012 at 11:29pm:

tomorrow will be 3 weeks PF and going to start my taper down

Glad to hear you've got there and are holding.  It was 640mg that finally held me when I started verap, mentioned back on page one here.  It takes faith.  Good to see it does work for you.  Different times required different doses.

I never lliked to stay at that level either and would try to reduce when I could.  Taper down gradually, it could be about 48 hours when you first decrease to find if you're wrong, and keep on the eight hour schedule for the quicker release type.

Good to read this thread went from bad times to here you've been pf and going to check into tapering down.   Great!

I can't help but see the irony in how I just got prescribed Verapamil (120 mg) for my arrhythmia. I could have swore I asked about it and was told I shouldn't take it, yet maybe it was Lithium I asked about. Its been awhile.

It was probably Verapamil I could have be prescribed 12+ years ago, yet more then one cardiologist said it was best not to take it.

To think it might have spared me a decade of Torture, at any level is almost funny. I wonder if it was someone like me who realized Verapamil additionally helped with their headaches.

I also started the ball on seeing a headache specialist. Which isn't easy from what my Dr says. She has to write them and ask, then they send me a questionnaire to fill out and then I get on the waiting list.

Half my intention in seeing the specialist is to spread the word about the Vitamin regime. My Dr said that they've tried Vitamins for headaches, like Magnesium and a few others. She said she was at a conference about or containing D3 info, and it said its almost impossible to take too much.

Since I'm 99.99% PF the verapamil will probably only work for my arrhythmia.

So glad your PF Gregg

Kevin and PlayDoh,
Thanks both for your kind words.

No desire to beer test yet, and have been 100% PF while tapering down. ;)

-Gregg in Las Vegas

My CH have returned after a 10 month break. I am curently on 240mg of verapamil but may need to increase it. In case of a CH starting I never go anywhere without cafergot tablets. they seem to shorten the duration of an attack.

Someone please tell me what a PRED TAPER is!

ImOnlyHuman,
Prednisone is a transitional med often prescribed at the same time as Verapamil, a preventive med.

Pred is taken at a higher dosage at start of treatment and gradually weaned (or tapered) down in dosage increments over the time period of prescription.

Plenty of threads here about Pred tapers for further explanation.  Hope that was helpful for basic understanding. ;)

-Gregg in Las Vegas