well hi ,
            just wanted to introduce myself. got diagnosed 3 years back with ch,        im just over the drugs !
last cycle was dec 2012, went for 4 weeks, 4 times a day. it was really the first time it cycled that bad.
ive just started again, after all the trigger signs over the last few weeks, so 3 months off.  ;D
   trying to stay positive thru this cycle, im on a higher dose of verapamil 240, so im hoping that taking it for the last 3 months will lessen the ch 's effect this time round.
  im glad to find there's others like me, but not that others suffer like I do..........
kindest regards
  blacklab
   

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                       CLUSTER HEADACHE HELP AND SUPPORT › GETTING TO KNOW YA › NEWBIES, HELP US...HELP YOU
==============
Your Verap dose is on the low side. If you think better control is needed, print this and discuss with your doc.
--
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.

hi bob,  my apologies for not filling in details. im not that computer literate.
my name is colin, I live in Australia.
about 4 years ago, suffering from sharp headaches, and nerve tingling allover my head, I went to my doctor, who brain scanned, and blood tested, scan was fine, but inflammation was off the scale in the blood tests. so prednisone was prescribed, that worked for a year, taking 100m for 2 days,then scaling down over 4 or 5 days. when it didn't, he sent me to a so called specialist who prescribed verapamil 40mg and was told to take ibropropine. when that didn't work my doctor offered me imagran for relief. when I got back to the specialist, he went ballistic, and believed that nothing stronger than ibropropine. I nearly threw him thru his window. the second specialist has been great, she lifted the verapalin to 240, I have low blood pressure, so its as much as I can take. my last and really the first time it had been chronic was xmas time, because I had difficulty staying on the verapamil, I think that didn't help. I was 3 months free and I took the 240 verapamil every day, but they have returned, so far the worst has been a 7 and if I take imigran early enough, it seems to abate it. im just hoping that the 3 months of consistant verapamil taking will lesson this cycle.   its just a wait and see at the moment. the alternatives my neurologist said were desiril and lithium, I don't want to go there.  she gave me a script to get the oxygen, which im about to look into.
  ive had a lot of sport injuries and broken bones over my life, i'd trade them for these clusters anyday.
its been comforting to read thru a lot of these posts and I sure don't feel alone in my suffering.  even some doctors ive seen to get verapalin scripts from have ignorantly said ," yes I see a lot of migraine sufferers, oxygen will be no help to you, blah blah. its amazing how so many are so uneducated about the difference between migraines and clusters !   anyway, sorry for rambling.
regards
colin   

Welcome to the board Coilin. Are you working with a headache specialist neuro yet? We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for over 35 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach. But first and MOST IMPORTANTLY

Follow this link to the medications section of this board and read the post 

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

It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days

So all that follows will be worthless I hope……….but still…

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, sounds like your doc is up on that aspect, although your dosage is low. Some have to go in the 960 mg a day to get relief, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Get that prescription filled right away!!!! Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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


Imitrex nasal spray and injectables are very effective abortives. (Imigran is what I believe you call it on your side of the world) I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.


For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

Hi Colin and welcome from the other side of the ditch.

The verapamil dose is pretty low, but since you've low blood pressure this will limit how much you can use. Don't be scared about the alternative of lithium as it is nothing like the portrayal in the media. It has been used with success by people here.

Imigran (imitrex) will help, just make sure that you're using the injections or nasal sprays as the tablet form just takes too long to take effect.

You'll simply love oxygen (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE). Make sure you're using a non-rebreather mask (the ones with a bag under the mask) and a high flow rate, at least 15lpm and 25 or higher if possible. Using this combination I can kill my CHs off in about 5 min or less.

However dust is accumulating on my oxygen cylinders as vitamin D is making a massive impact on my CH, being pain free for over a year and only 10 in the last 2 years.

Keep reading and you'll learn lots more than any neuro.

Welcome Colin!  Hang in there. Im new here as well so I cant really offer you alot of advice.  Hope you have a short cycle.

hi all,
           and thankyou for all your supporting comments.
I am under a neurologist now and so far happy.  my wife got some red bull this morning so im keen to try that today around 6.oo pm when it usually appears. my neurologist likes the prednozone in a big hit, she has told me to take 100m for 2 days on the onset, that does work but only for a short time. she wants me to stay on the verapolin perminantly at this stage as she wants my body to get used to it and build it up in my system.  im using the 50mg tablets of imigran and I know its slower than injecting or nasal, but if I take it early enough, at the first tingle, it works. last nite at 2.00am and this morning I decided to not take an imagran at the onset, just sat out side and drank water, and it only got to about a 5 and disappeared after 5 minutes ? could this be because ive had 3 months solid of 240 verapamil in my system ? pryor to that I was on only 180m and I admit, went off them after a month, forgot to take them etc. but xmas was indeed an absolute disaster, 4 times a day, pain average 9, for 3-4 weeks, I had a window of about 2 or 3 minutes to take the imagran or it was basically ineffective. so im hoping that the 3 months of verapolin in my system might reduce the severity.  im ordering the oxygen tomorrow, as said there is a bottle company who specifically supply bottles and masks for ch sufferers here in Melbourne.  I also would like to try the vitamin treatment but wonder whether I should wait till this cycle is over and should I go off the verapamil once I start ? mike what did you do when you commenced with the vitamin alternative ?
thanks again all, since being diagnosed I haven't talked to another sufferer, so has made me a lot more positive, even when the beast appears during this cycle.
regards
colin 

wrote on May 26^th, 2013 at 1:00am:

mike what did you do when you commenced with the vitamin alternative ?

When I started on the vitamin D3 route I was about 10 months into my first cycle (and not far off qualifying as chronic). I was still on the verapamil too, however a few weeks later the CHs fizzled out. I stopped taking the verapamil once the cycle stopped, but kept with the D3 recipe. About 5 months later I had another cycle with 10 CHs, all very mild, over 5 months and then nothing CH related since then.

The D3 has also been amazing at keeping general bugs away too, although I'm just enjoying a really heavy cold, my first in about 3 years when normally I'd catch just about anything going around.

About 3 and a half years ago I was in the middle of a nasty high cycle, even oxygen was losing its effectiveness. I started the original "Batch regimen" which concentrated more on PH levels then the D-3. That cycle fizzled out, and I stopped taking my prevent, lithium. Shortly after that, Batch altered the regimen to what we now call the D-3 regimen. I continued on the D-3 regimen and haven't had a cycle since.

I would start the D-3 regimen immediately, while staying on the verapamil. It sounds like the verapamil is doing a pretty good job of holding the beast down. When you've gone pain free for a couple of weeks on the D-3 regimen, wean off the verapamil. With luck you'll be like me, stay on the D-3 regimen forever, and never have to deal with CH meds again.

Joe

hi everyone, well, a horrible day yesterday, 5 hits, 3 little reminders, 2 shockers. anyway, drove past my doctors today,i pulled up, went in and she could see me straight away. blood pressure checked, she recommended another verapamil tablet at night, as my blood pressure was good, which will lift it up to 360.  I quizzed her on vitamin d3. supprisingly she commented on a clinical trial for migraine sufferers going on presently in Australia. so I discussed the regime from this forum, all from memory,  she was interested enough to write a script to get blood tests, of which I will be, first thing in the morning with an appointment with her again in a week. she wanted me to bring a print off on the topic. she also commented on how many people are vitamin d deficient. now I hope she is testing for the right thing, I see its suppose to be a serum test ? I asked her if I should ring her back once I get home and re-read what batch recommended, but she said no, this is all you need to be tested on,the script reads... vit d, fbe, tsh, b12, folate, fe studies, e/Lft's. hopefully it will show up something.  so, I intend on starting on the regime before I return to her in a week, even though she wanted to see the results first.  I did call into 1 chemist today who only had 1000 iu d3, which would mean taking 10 tablets, or a liquid version so I guess im going to have to hunt around for the 5ooo iu tablet.
really looking forward to giving this regime a try, at the least to get of the med's.....
regards
colin

Jumping to 360mg/day should help to make a difference, although it will probably be about 7-10 days before the dose change will take effect, so don't expect an overnight response. Equally don't give up on it too quickly either.

The vitamin D test is a blood test - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

The other tests look like a fairly comprehensive set not so much concentrated on CH but general blood work, quite possibly to see if there is anything else affecting you at the moment.

Its quite likely you'll only find 1000IU tablets as many countries seem to limit how large a dose a single tablet can be for vitamin D3, so it just means that we take a few more.

hi mike,
              thanks for that info. the doctor must have put the right test down then, as we were discussing the regime regarding the deficiency. she's also doing the cholestorial tests as well, so im fasting, as of an hours time.
   im also going to go online tonight and see if I can source the vit d in aussie in a higher potency, will certainly save taking 10 tablets in one hit.
thanks again, i'll let you know how I get on.
regards
colin

Did you mention high flow O2 (minimum of 15lpm) and nonrebreather mask Rx? lance

hi guys, just wanted to comment on my blood tests, as I managed to get the doctor on duty to give them to me over the phone, I have a proper appointment with my doctor next Wednesday, (5 days away)  the vitamin d test batch refers too is different to the result we get here, but he does explain that. anyway, unconfirmed result was 54 nmol/L
if I got told the correct figure, and if im right in what batch said, that's pretty low isn't it ?    i'll definitely confirm next Wednesday.   all my vitamin supplies were bought on line and there starting to trickle in, was a lot cheaper online by a long way, so expecting all to arrive by next Monday Tuesday, not waiting till I see the doctor, i'll be taking them straight away !  I was dreading a high level result, but now if its right, theres some hope it will help for me.
im really getting hammered with the beast at the moment, so different to the last cycle, unpredictable, im a self employed tradesman, trying to do work for customers and then this thing grabs you !  but the empathy ive been given from customers has been brilliant, them seeing me fine one moment then lying in a corner at the side of there house in real pain the next, luckily only once this cycle its happened, but turned out she was a migrane sufferer.
sorry for my burbling on........
regards
colin

well, most of my vitamins have arrived, minus the magnesium, my appointment is tomorrow at the doctors to get blood results, but I think I might take the calcium, fish oil and d3 tonight ?  I was thinking about taking 15000 d3,will it matter if I don't take the magnesium until it arrives, im getting impatient.  and because I have to get a script off the doctor for follow up blood tests, how long should I wait, being on the regime, before getting the tests done ?
had a few good days, ch wise, I cheated, I went on a predisone taper for the last 5 days which has, apart from my sleep pattern, given me a big break from the ch's.
but, as im nearly tapered off them, I can feel the tingles/shadows in the distance trying to appear.......
regards
colin

wrote on Jun 4^th, 2013 at 3:44am:

im nearly tapered off them, I can feel the tingles/shadows in the distance trying to appear....... regards colin

So, and I promise for the last time, are you avoiding the use of O2 as an abortive? lance

hi lance,
            its been a real hassle getting the oxygen script from the neurologist, the local doctor where I get prescriptions for verapamil etc, believes that ch's are nothing more than a bad migrane. I got my script for o2 in feb,but foolishly just sat on it, and was cluster free up until a month ago. there is a company here, who supply medical bottles etc, but only one of the sales rep's is actually is set up to supply o2 and the proper masks for ch sufferer's. she gets back from holiday next week.  to be honest, I was always hoping that this affliction was going to remarkably disappear !!  oh what a fool I was LOL.  I will have the o2 by next weeks end.  but am also hoping with preliminary test results on d3 levels that the d3 regime will help as well.
yes ,ive procrastinated quite a bit lance, and admit denial.
kindest regards
colin

I hope you have these things by the tail in short order. Procrastination and wishful thinking are not great traits in a CH sufferer, but I have them both in spades, as do a lot of people. I am also among the ones who blame themselves for their pain. If I accidentally skip a dose of Verapamil and get a screamer, of course I only have myself to blame. Just do you best not to miss a dose and stay on track. let us all know how the vitamin regimen works for you, and remember you have friends all over the world now.

rep

I absolutely understand hoping they will just go away, and then they don't. I will sometimes wait too long to even get on the O2, and wait too long to shoot imitrex, and...you get the idea. I think you'll find O2 is your best friend for aborting hits. Not your only friend, D3 regimen and energy drinks get to join the party too, but a very reliable companion. Good luck and keep us informed. Blessings. lance

thanks lance,
well 2 days on the regime, and 2 days after prednisone taper finished and getting hit 3 times thru the nite, but only about a 7.  I think the 4 months of being consistently on verapolin has lessoned them, but everything seems to change, nothings ever the same from cycle to cycle.  currently only have imagran 50mg tablets, if taken early enough I can cope. tried red bull a week or so ago, worked instantly, but really rebounded a couple of hours later. but with redbull and 02, i'll manage it ok.
im hoping I get a benefit from the regime, if im still getting hits by day 7 or8, i'll take a big dose of d3 as batch instructed.  didn't manage to get into the doctor today to discuss blood d3 results, ended up getting a bad dose of flu ! but I know result was border line minimum, so i'll see how I go over the next few weeks with it, then re- test

regards all
colin

Welcome blacklab - I'm new here too.  I'm on day 4 of my D3 regiment and I'm on topamax.  Still get one to two hits a night, but feel pretty good during the day.  Keep strong.

thanks rep, and teej2379, looks like weve started this at about the same time.  im just on a dose of verapamil and the regime at the moment,  so its all about having a positive attitude and moving forward with it at the moment.
im episodic, so im picking my cycle has a week to run, so the true test will be getting d3 levels tested again and seeing what happens in about 3 months time.
I hope you get good results, keep us informed as you go along.     good luck, fingers crossed
regards
colin

Colin,

I'm new to the site, but I've been episodic for the last 32 years. Verapamil has kept me on an even keel for the better part of 16 of those years, but in the last year or so I've been getting back to a regular cycle. I only found this site recently and it could have saved me a lot of headaches -- literally. Don't forget The Beast changes things up every now and then to keep us rocking and banging. You're right about the attitude, though. We've all got to remember life is worth living, even when the pain is so bad it feels like you're dying -- or need to to stop the flaming things.
Just knowing you're not alone is a help.
Stay frosty and best wishes,

rep