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They're back...and need help (Read 1300 times)
pck823
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They're back...and need help
Aug 24th, 2011 at 7:34am
 
Been a CH sufferer for going on 20 yrs.  Cycle has been in the fall every second year, but miraculously, they didn't start up two years ago.  They're back, and coming with a frequency that is distressing.  Self-injection sumatriptan is the only thing that works for me, but I get CH's coming 3-6 times a day.  With the 4mg injection, I should only take 3 shots a day, but I can't do without the meds during an attack.  This time around I also started taking verapamil to keep BP in check.  My concern is od'ing on the sumatriptan and the cost - two doses cost me 25.00, so that's over 100.00 a day in meds!  What to do?
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« Last Edit: Aug 24th, 2011 at 7:39am by pck823 »  
 
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Bob Johnson
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Re: They're back...and need help
Reply #1 - Aug 24th, 2011 at 8:13am
 
Are you being treated by a headache specialist?
What other meds have you tried over the years?
Immediate step would be to consider whether your Verap dose is high enough.
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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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Bob Johnson
 
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Guiseppi
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Re: They're back...and need help
Reply #2 - Aug 24th, 2011 at 9:28am
 
Welcome to the board, some links for you to read:

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

Using this link, you can get 2 injections out of your stat dose, 2 mg is enough for many to abort.

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

Breathing pure oxygen will abort an attack for me in about 6-8 minutes. As fast as imitrex and MUCH cheaper. Most are getting it covered by their insurance, but even if insurance won't cover it, it comes out to a couple of dollars per abort. MUCH cheaper then trex!

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

Finally, this is our sister board which explores non traditional treatments for CH. When you read some of the success stories you'll understand its popularity.

Welcome to the board, wishing you some pain free time soon.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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pck823
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Re: They're back...and need help
Reply #3 - Aug 24th, 2011 at 9:05pm
 
Thanks for the info. No, I haven't been to a specialist. When this all first started I did see neurology folks but once it was diagnosed as ch, it was simply a matter of trying different prophylactics (none worked) and abortives. Took finding this site to realize trex in self inject worked for most who did not get relief from other forms of the same. I ought to seek a specialist since things have hopefully progressed since I was first diagnosed. If you have any recommendations for the Atlanta area pm the info and thanks in advance 
I will try the mod to the injector. God knows I only have like 50 of them lying around. Will also talk to gp about a modified regime with the verapamil. Right now I'm just taking 80 mg 3x day. I've been keeping an eye on my bp since I've had approx 6 4mg doses of trip tan in the last 24 hrs and it's pretty good considering (132/98)
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bejeeber
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Re: They're back...and need help
Reply #4 - Aug 24th, 2011 at 11:44pm
 
Please keep in mind that when we talk about O2 here we're not talking about the old, ineffective, but unfortunately still commonly prescribed low flow/rebreather method for administering O2.

We're talking about high liter flow/non-rebreather O2 - it's wildly popular amongst members here because it's way more effective for most of us. It would likely cut your need for imitrex back to a minimum. Combined with the imitrex dose stretching tip, your costs and risk could go way down.  Smiley
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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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wimsey1
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Re: They're back...and need help
Reply #5 - Aug 25th, 2011 at 7:37am
 
That's a lot of trex. The trex tip essentially drops your dose to 2mg. And that generally works for me. O2 is the best! Read the links and get on it soonest. Verapamil for me didn't start working until I was on 480mg/day, and now at 640mg/day. Way above label use but with monitoring it works. I have also found that while Migranal nasal spray is slower than imitrex, it tends to last longer. Trex lasts about 12-18 hours for me, but migranal 24-48 hours. Just a thought. Blessings and good luck and good reading...there's a lot here to absorb. lance
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Bob Johnson
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Re: They're back...and need help
Reply #6 - Aug 25th, 2011 at 7:50am
 
LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. 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.

3.  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.

4. 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.

5. 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.

6. 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.





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Bob Johnson
 
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pck823
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Re: They're back...and need help
Reply #7 - Aug 25th, 2011 at 3:25pm
 
Thanks again for the tips...visited with GP today to get some stuff resolved, and he's behind me 100% with getting to a specialist.
Also talked to him about o2, so have some local contacts of Doc's to call
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Pfunk
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Re: They're back...and need help
Reply #8 - Aug 26th, 2011 at 11:54pm
 
100% agreed on all these guys have said. The oxygen realy has been a life san=ver for many of us and as Joe said can abort an attack in as little as 6-8 minutes. Find aa good preventative that works for you and read up on the things that may have worked for others as well. We are all willing to lend a hand do not be afraid to ask. PFWS my friend!

Pfunk Cool
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