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MikeyPablo
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Hi all!
May 5th, 2010 at 12:55pm
 
Hello all, I'm a newbie that finally registered for this fantastic site.  My name is Michael and I've suffered from CH's since I was 27, I just turned 36 in March.  I've been CH free for a few years until about 3 weeks ago.  My Father recently passed away, which seems to have awakened the devil Cry.  My usual treatment is Imitrex 100mg pills and/or the stat pen.  I have recently tried Maxalt MLT, which worked ok, but the regular Maxalt pills do nothing.  Also, I've had O2 treatment for the first time at urgent care, which worked very well.

Last night I experienced the worst CH ever.  It started at about 10:30pm (normal time)...I took an Imitrex and for the first time in my life, it did nothing.  I waited 2 hours and took another one and ended up passing out sometime after 2am.  Imitrex has always worked very well for me and it scares the hell out me to know that there's a chance it won't work Sad

Well, I just wanted to say HI and introduce myself.  I'm very glad I finally registered and became part of your family Smiley

Michael
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Bob Johnson
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Re: Hi all!
Reply #1 - May 5th, 2010 at 1:48pm
 
You didn't mention using a preventive med. Surely would consider one unless your cycles are dependably only 2-4 weeks long.

Sending a widely used protocol for the most often used preventive and see the PDF file below.
=========

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.
====
Don't be scared off by this; just "required" warning!

Source: American Academy of Neurology
Date: August 13, 2007
More on: Headache Research, Headaches, Pharmacology, Heart Disease, Diseases and Conditions, Vioxx

Drug For Cluster Headaches May Cause Heart Problems
Science Daily — A drug increasingly used to prevent cluster headaches can cause heart problems, according to a study published in the August 14, 2007, issue of Neurology®, the medical journal of the American Academy of Neurology. Those taking the drug verapamil for cluster headaches should be closely monitored with frequent electrocardiograms (EKGs) for potential development of irregular heartbeats.

Cluster headache is a rare, severe form of headache that is more common in men. The attacks usually occur in cyclical patterns, with frequent attacks over weeks or months generally followed by a period of remission when the headaches stop.

"The benefit of taking verapamil to alleviate the devastating pain of cluster headaches has to be balanced against the risk of causing a heart abnormality that could progress into a more serious problem," said study author Peter Goadsby, MD, PhD, DSc, of the National Hospital for Neurology and Neurosurgery in Queen Square, London, UK, and the University of California, San Francisco and a member of the American Academy of Neurology.

The study involved 108 people with an average age of 44. The participants started taking verapamil and then had an EKG and an increase in the dosage of the drug every two weeks until the headaches were stopped or they started having side effects.

A total of 21 patients, or 19 percent, had problems with the electrical activity of the heart, or irregular heartbeats, while taking the drug. Most of the cases were not considered serious; however, one person required a permanent pacemaker due to the problem. A total of 37 percent of the participants had slower than normal heart rates while on the drug, but the condition was severe enough to warrant stopping the use of the drug in only four cases.

Goadsby noted that 217 people taking the drug were initially supposed to take part in the study, but 42 percent of them did not have the EKGs done to monitor their heart activity. "Many of them said either they or their local services were reluctant to undertake such frequent tests, or they were not aware of the need for the heart monitoring," he said. "Since this drug is relatively new for use in cluster headaches, it's possible that some health care providers are not aware of the problems that can come with its use."

Note: This story has been adapted from a news release issued by American Academy of Neurology.




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Bob Johnson
 
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MikeyPablo
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Re: Hi all!
Reply #2 - May 5th, 2010 at 2:15pm
 
Hey Bob,

I have never used any kind of preventive medicine, however, I do have a doc appt. on the 11th (soonest I could get) and I am going to ask about getting a script for something along those lines and the O2.  My bouts usually last about 10-12 weeks, so I know it would be very beneficial for me to get something like you suggest.

Thanks for the reply and info! Smiley

Michael
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« Last Edit: May 5th, 2010 at 2:16pm by MikeyPablo »  
 
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Bob Johnson
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Re: Hi all!
Reply #3 - May 5th, 2010 at 2:54pm
 
Neglected to suggest that you print out both articles and use as a discussion tool with your doc.

Giving them medical literature carries weight for you.
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Bob Johnson
 
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Guiseppi
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Re: Hi all!
Reply #4 - May 5th, 2010 at 5:55pm
 
What Bob said! Wink

My protocol, I go on a 2 week prednisone taper while I ramp up on my prevent, Lithium. Like verapamil, it takes 10 days or so to get up and running in your system.

When I get hit, I fire off the oxygen, and chug down an energy drink. I initially started doing the energy drinks to prevent the come backer attacks I suffer within 20 minutes of shutting off the 02. I swear they actually help abort the attack even faster! I use sugar free Red Bull but any contaiing caffeine and Taurine will do the trick.

On the rare occasions the 02 doesn't kill it I go for the stat pen too! Do read the oxygen info link on the left as it must be used correctly or it doesn't work well.

And sadly, there are just hits where nothing works and you get to dance. Cry Those suck.

Welcome to the board.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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bejeeber
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Re: Hi all!
Reply #5 - May 5th, 2010 at 6:38pm
 
Hey Mikey,

If I understand correctly, it sounds like you were taking Imitrex pills last night?

If so, it's time to graduate to relying just on the injections for aborting attacks with imitrex, because the pills are notoriously not that effective for the strong hits.

This imitrex tip is critical info that has made a big difference for a lot of people BTW: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
bejeeber bejeeber Enter your address line 1 here  
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MikeyPablo
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Re: Hi all!
Reply #6 - May 5th, 2010 at 8:36pm
 
Guiseppi,

Thanks for the info!  I'm actually really amazed about the whole energy drink thing, but I will definitely give that a try.  I feel so uneducated about something that has been coming in and out of my life for so long.  I've always just dealt with them and never really looked for any support.  When I was diagnosed, there was no preventive medicine, at least to my knowledge and based on my docs info...it also amazes me how so many doctors have so little knowledge about CH's.  Even a doctor at urgent care last weekend gave me percocet and he claimed to have a lot of training and knowledge involving CH.  As we all know, pain pills do nothing.  Thanks again for the info Smiley

bejeeber,

Yes you are correct, I did take Imitrex pills last night.  I have had and used the stat pen in the past and am very fond of it.  The problem is, I just got a new doctor and the soonest I could get in to see her is on the 11th Sad  Maybe a trip to the ER can get me a script?  Also, i'm really looking forward to getting O2.  I would definitely prefer O2 treatments over Imitrex in any form.  Imitrex pills are all I have and I'm very worried about tonight, as I have been for most of the day.  I know you can only take 2 every 24 hours, which I've already taken, 1 at 10:30 or so last night and another one 2 hours later. So what do I do if the devil wants to dance before that time has past?  Like Guiseppi said, I'll chug an energy drink and pray for the best I guess.  I've just never had Imitrex not work and last night was brutal Sad

Again, thanks for all the advice everyone.  I'll continue to educate myself and get through this...especially now that I've found this wonderful place! Smiley

Michael
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neuropath
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Re: Hi all!
Reply #7 - May 5th, 2010 at 11:19pm
 
Joe's recipe is also my recipe of choice.

Going through a cycle solely on Imitrex is not a good idea in my opinion, regardless whether you use pills or injections.

The pills really only work if your hits come like clockwork, so that you can take one 30-45 min before. Taking them at the onset of an attack simply takes too long to activate them and you probably end up only dealing with the post-attack hangover.

I live in a part of the world where injections or nasal spray are not available and consequently I can only use pills (if I have no O2 available). One way of activating them a little quicker is to crumb them and to wash them down with a red bull, followed by a double espresso.
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shaggyparasol
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Re: Hi all!
Reply #8 - May 6th, 2010 at 12:44am
 
neuropath wrote on May 5th, 2010 at 11:19pm:
wash them down with a red bull, followed by a double espresso.


Kaboom!  Dang Neuro, that is a nice treat.  I like your style. Wink (and a wink).

Michael, cruise this site and find the nighttime special.  Some formula people are using with melatonin, kudzu, blah blah blah.  Somebody will come along here shortly that has the formula.  People seem to have good luck with it.  I am usually a morning guy so all the caffeine related treatments are great.  You nighttimers could probably use a more, shall we say, mellow routine?? Sad (frowny dude says get lots of sleep).

Or check out the clusterbuster stuff. 

--Shaggy  Undecided (I'll give myself a diagonal mouth guy tonight) 

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MikeyPablo
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Re: Hi all!
Reply #9 - May 6th, 2010 at 9:50am
 
Definitely agree on the whole Imitrex thing...Last night same story, but this time I found some Maxalt MLT's I didn't know I had.  I took an Imitrex and yes it was too late...an hour and a half later felt a little better.  10 minutes later it hit again, but harder (because of the imitrex i think), so I took a maxalt MLT and 15 minutes later CH was gone and I slept through the night.  Now I seem to have better results with the MLT's. Smiley  Also, I did chug a monster and it seems to have softened the initial attack that imitrex did nothing for.  Imitrex has now dropped to "last resort" and I'll stick with the MLT's until I get O2.  I have looked at some of the cocktails with melotonin, kudzu, blah blah blah and will try to find  a good mix for myself.  It's weird how I'm happy this morning that it only lasted an hour and a half or so last night and the severity was cut way down.

Thanks again,
Michael
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birdman
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Re: Hi all!
Reply #10 - May 6th, 2010 at 12:28pm
 
Welcome to the group!  You will eventually find what works for you and what doesn't.  Personally, o2, red bulls, melatonin.  I can't take any of the usual preventatives for medical reasons and due to my opinion that some just prolonged my cycle.  If you haven't considered it, try busting.  It has worked for so many.
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davidj35
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Re: Hi all!
Reply #11 - May 6th, 2010 at 4:17pm
 
I am a newbie in name only (been awhile I had been in remission for 18 months and had to reset my information). I am also an imitrex pill user (50mg) and O2. Like mentioned in the other posts for  me imitrex is only effective if I take it 45 minutes or so before normal attack time and I only use it if I know I can't get to the O2. Thank you for the article on the preventative, I am going to see my Doctor in a few weeks and see what he has to say and hopefully give it a try. Nice to know you are all out there, I just wish the Devil would go away for good for everyone and we wouldn't need this site.
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MikeyPablo
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Re: Hi all!
Reply #12 - May 9th, 2010 at 1:44pm
 
Just wanted to give a little update...3 days ago I started on the Kudzu and magnesium/calcium treatment that I've read about and that's been suggested to me here.  For the past week I've gotten 2 CH's a day.  One between noon and 2pm and another between 8pm and 11pm daily.  In both instances they've been between kip-7 and kip-10...the one's at night have always been more severe, usually 10's Sad

I am very happy to say that the last CH I got was Friday night at 8:30pm, which was a 10 and lasted 2 hours, since I took the Imitrex too late to catch it.  It's been over 36 hours of CH freedom Smiley which has never happened in the middle of a cycle. 

I just wanted to thank everybody for their tips, info and advice...it has really helped me avoid being fully consumed by these F%$#ing things.  I really felt a change yesterday and do believe it's from the kudzu cocktail I've been taking.

So, because of this, I'm taking the wife and kids out today to enjoy a well deserved Mother's day (that my wife truly, truly deserves).

So, if anybody is "on the fence" about kudzu, DO IT!  It can greatly improve your quality of life during a cycle.

All you mothers out there, HAVE A GREAT MOTHERS DAY!

Thanks for everything Smiley

Michael
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MikeyPablo
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Re: Hi all!
Reply #13 - May 9th, 2010 at 2:46pm
 
For everybody interested in the cocktail, I have listed types, amounts and times below.  I really hope this helps as much as it has helped me!

1. Kudzu root (Nature's Way brand) - I got this at Sprout's, but any organic/health food market should carry it...GNC and Hi-Health do not
2. Calcium Plus with Magnesium (GNC) - I got this from GNC
3. Melatonin 3 (GNC) - I got this from GNC

Ok, Wednesday evening was when I first started.  I have listed the schedule I'm following below.

Wed.
6PM - 2 Kudzu capsules (1226 mg)
       - 2 Calcium Plus with Mag capsules (600 mg Cal and 300 mg Mag)
8PM - 2 Melatonin Tablets (6 mg)

Thurs.
6AM - 1 Kudzu capsule (613 mg)
       - 1 Calcium Plus with Mag capsules (300 mg Cal and 150 mg Mag)

Noon - 1 Kudzu capsule (613 mg)

6PM - 1 Kudzu capsule (613 mg)
       - 1 Calcium Plus with Mag capsules (300 mg Cal and 150 mg Mag)
8PM - 2 Melatonin Tablets (6 mg)

Fri.
6AM - 1 Kudzu capsule (613 mg)
       - 1 Calcium Plus with Mag capsules (300 mg Cal and 150 mg Mag)

Noon - 1 Kudzu capsule (613 mg)

6PM - 1 Kudzu capsule (613 mg)
       - 1 Calcium Plus with Mag capsules (300 mg Cal and 150 mg Mag)
8PM - 2 Melatonin Tablets (6 mg)

...and so on and so on...

That's how I'm doing it and it seems to work very well.  Others may have a different mix and/or schedule, so you may want to check out the "Treatment, Tips and Tricks" or whatever it's called thread.

I wish much success with any and all that we can do to get through this.

Thanks,
Michael



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