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Worst in over 20 years of ECH attacks.. (Read 2097 times)
Joel1955
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Worst in over 20 years of ECH attacks..
Mar 5th, 2013 at 10:09pm
 
About 20 minutes ago, the beast just turned me loose after the most excruciating 70 minutes I've ever spent and I've been suffering with ECH for over 20 years now.  Before I got turned on to Imitrex and O2 I thought I'd experienced a KIP 10 or so, but nothing like this one.  What happened?  I've been in an episode for about ten days, so far, on a prednisolone therapy, that started at 60 mg per day and is now throttled back to 40 mg.  I had a bad one yesterday morning that hit me in a training course and I'd forgotten to bring my Imitrex (I'd been headache free for a couple of days), so I suffered through it the old fashioned way.  When it came on, I drank some Rock Star energy drink, since it was all I had, and who knows, I thought it might have mitigated it a bit. It went away after an hour and a half or so.  Today, I was headache free all day, and even completed pistol training on a range.  Came home tonight and went to Red Lobster with the wife, came home, had a couple of cups of decaf with creamer, and the ache started.  Drank some Rock Star, which didn't even phase it.  Did nasal inhaler Imitrex and the beast kicked into high gear.  I'd tried the Imitrex subcutaneous injectors last week for the first time, but they played havoc with my heart rate and blood pressure (though they did stop the Beast) so I went back to the inhaler.  I've never had one like this was - the beast was throbbing and surging, I was whimpering, crying, pacing, with extreme light sensitivity.  Felt like my head was going to explode.  I do not know how I got through it except the the wife was praying hard and I was too, although I was cursing the thing as well.  Thinking the food and drink might have been the triggers, I emptied my stomach and the thing subsided.  I don't know how I could ever take another like this.  Why did this happen?  Of course I don't know, but I suspect the trip to Red Lobster should occur again until I'm clear of the episode.  I also think the Rock Star really pushed the beast's throttle forward and negated the Imitrex.  Any ideas?
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Guiseppi
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Re: Worst in over 20 years of ECH attacks..
Reply #1 - Mar 5th, 2013 at 10:30pm
 
My guess is the prednisone taper. When I've gone on a pred taper....without starting any other prevent......when I get towards the end of the pred taper, I get CREAMED. It's like the beasty was sharpening his claws behind the prednisone.

Have you checked out the new Batch Regimen? I'm a 35 year episodic sufferer, pain free 3 years on this regimen:

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

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

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 30 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

This info was taken from the regimens website:

[b]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
[/b]

Joe
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Joel1955
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Re: Worst in over 20 years of ECH attacks..
Reply #2 - Mar 5th, 2013 at 10:56pm
 
I'll consider it.  Thanks for the heads up.  I neglected to mention I'm on 360 mg verapamil, btw.
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Joel1955
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Re: Worst in over 20 years of ECH attacks..
Reply #3 - Mar 5th, 2013 at 11:10pm
 
Giuseppe - looks like its worth a try.  Are you using it?
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wimsey1
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Re: Worst in over 20 years of ECH attacks..
Reply #4 - Mar 6th, 2013 at 8:14am
 
Some have had good luck with the nasal spray (like Zomig) but I had to resort to Migranal, a DHE based spray. Still, for immediate relief nothing beat the imitrex injections. That rapid heart beat/full flush feeling is reduced somewhat by the imitrex tip at left, but for me, it was a small price to pay to aid in aborting the beast. Sometimes the O2 didn't help, but rarely could a hit stand up to both the shot and the 60lpm O2 along with an energy drink. Fortunately those were rare instances. I would encourage you to play around with what you have, and consider asking your doc to up your verapamil. That's still a pretty low dose. blessings. lance
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japanzaman
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Re: Worst in over 20 years of ECH attacks..
Reply #5 - Mar 6th, 2013 at 9:10am
 
Pretty much a classic case of the beast changing the rules as he goes. You might need to re-explore other avenues of treatment if the usual weapons aren't working. Good luck.
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Guiseppi
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Re: Worst in over 20 years of ECH attacks..
Reply #6 - Mar 6th, 2013 at 9:46am
 
Yes I'm on the D-3 regimen. I've been on it almost 3 years and have been cycle free. First time I skipped cycles in over 30 years. My  25(OH)D level  tested at 87 ng/ml, well within what Batch calls the therapeudic range.

25(OH)D is a different form of vitamin D that has already been metabolized. D3 is merely the form of vitamin D that we consume that is most readily metabolized by the body.   I stay on the maintenance doseage permanently now. Closest thing to the "C" word......cure Grin....I've seen to date. Said goodbye to my imitrex, energy drinks, lithium, oxygen....it's a beautiful life!

Joe

edited cuz I suck at details! Wink
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« Last Edit: Mar 6th, 2013 at 10:17am by Guiseppi »  

"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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Bob Johnson
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Re: Worst in over 20 years of ECH attacks..
Reply #7 - Mar 6th, 2013 at 10:18am
 
If you are not under the care of a headache specialist it may be worth considering a reveiw of your treatment plan.
===
LOCATING HEADACHE SPECIALIST

1. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

2.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

3. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register; On-line screen to find a physician.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.

======
Your dose of Verap is low. Print following and take to 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.





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Joel1955
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Re: Worst in over 20 years of ECH attacks..
Reply #8 - Mar 6th, 2013 at 11:51am
 
Thanks all.  I'll follow up on these suggestions.  I've seen a neurologist week before last, but I'm not sure she is a headache specialist.  The verapamil does two things for me: mitigates headaches and helps with hypertrophic cardiomyopathy.  My resting heart rate is around 55 right now (when not in an episode) and concern is that higher verapamil dosage will make heart rate dangerously low.  I'm walking a tightrope here because of these two conditions - the meds have to balanced carefully.  Nonetheless, good counsel. Started the D3 today BTW.
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Guiseppi
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Re: Worst in over 20 years of ECH attacks..
Reply #9 - Mar 6th, 2013 at 11:57am
 
Hoping it proves the silver bullet for you that it's been for me.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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