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Another newbie to your site. (Read 1421 times)
fid
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Another newbie to your site.
Nov 5th, 2010 at 4:50pm
 
Wow, what a great resourse of info you all have provided!!! I've been on this site for 30 min and am amazed by the wealth of information.. I had my first CH at 20 and am now 39. From everything I've read I'm a lucky sufferer. My cycles are usually 2 weeks with 1CH/day, lasting maybe an hour. I had remissions of 3 years each between 20-26. Then a 9 year remission only to have them return at 35. I started looking for info today, because the "beast" as you guys so appropriately put it has returned. I'm on day 5 of what I hope will again be another 2 week cycle. In the past I just hung on for the ride, but now use imitrex with success. My MD has also put me on verapimil, but doesn't seem to hold them off. Because of this site, I'm going to look into O2. And no alcohol for me during cycles, definate trigger. Thanks again and I wish you all pain free days, weeks and hopefully years.
Fid
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Mike NZ
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Oxygen rocks! D3 too!


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Re: Another newbie to your site.
Reply #1 - Nov 5th, 2010 at 5:19pm
 
Hi and welcome. I'm pleased you're finding stuff that is helpful.

If your CH cycles only last two weeks than you could probably just use prednisione as a preventive as your cycles are short enough to avoid issues from the longer term use of steroids.

It's possible that the dose of verapamil isn't high enough as we normally need what is considered to be excessive doses for "normal" uses of verapamil. It also can take a week or so for verapamil to become effective, which with your short cycles is half a cycle.

I'd certainly look at using oxygen. The ability to skip riding through a CH compared to killing it in minutes is well worth doing. Make sure you read the info on the left.

And ask away. When you're reading so much you're bound to have questions.
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Guiseppi
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Re: Another newbie to your site.
Reply #2 - Nov 5th, 2010 at 6:37pm
 
Welcome to the board! yeah, what he said! A cycle as short as yours might benefit from a short 2 week prednisone burst. Do ask the doc about it.

And oxygen, 32 years of CH here, nothing compares to my 02! I used to take 90 minute rides, now it's stopped in its tracks in 6-8 minutes. Damn near miraculous how fast it works.

Glad you found us, hope we can help you.

Joe
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DennisM1045
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Re: Another newbie to your site.
Reply #3 - Nov 5th, 2010 at 6:41pm
 
Hey Fid!  Welcome home.  This is YOUR site too.

Funny how reading a few posts can make a newbie feel like he's a "lucky sufferer"  Grin

Two week cycles are too short for preventatives but Oxygen will be a real game changer for you.  While you get that lined up try an energy drink.  They work for many.

Keep reading.  There is no more powerful weapon in this fight than an educated clusterhead Wink

-Dennis-
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Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.
dennism1045 dennism1045 524417261 DennisM1045 DennisM1045  
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Bob Johnson
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Re: Another newbie to your site.
Reply #4 - Nov 6th, 2010 at 7:54am
 
It's always nice to have a doc who knows about headaches! Do you have any options to find a specialist?
----
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.
====
Dosing with Verap is an art form. Print the following and use to discuss your treatment with any doc you are seeing.

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.

==
As you see from this piece, the effective range is quite broad and some folks require upwards of 900mg before getting results. Do not assume that one course of treatment at one dose means failure. It may take some weeks to work to find the effective dose. In any case, using an abortive only means incomplete treatment. A good preventive is still the norm.

See PDF file below.




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Bob Johnson
 
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fid
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Re: Another newbie to your site.
Reply #5 - Nov 13th, 2010 at 7:26am
 
Thanks for the warm welcome all and the quick advice. Bob, as a healthcare worker I appreciate your evidence based references and links. Gracias for the post. With that said, I'm also a firm believer in ancedotal remedies, do what works for you regardless of printed proof.
Its been about a week since first posting and thanks to this site/recommendations, I've been using O2 for the last few days. It's a CH killer for sure. 5-10 minutes and the pain is gone. My regulator will allow 15-20L/min and it seems like that flowrate is the ticket. I do find that unlike sumatriptan, I will need another dose in 2-3 hrs to keep it at bay, but its better and less costly than administering and buying shots.  Plus, no neck tightening cerebral high. Not that there is anything wrong with that. Just not for me.
For anyone that is suffering and hasn't tried O2, speak with your MD and get on board!
Thanks again.
Fid
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Guiseppi
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Re: Another newbie to your site.
Reply #6 - Nov 13th, 2010 at 9:13am
 
I have found that drinking an energy drink....I prefer sugar free red bull for taste, but any containing caffiene and taurine will work....helps me to push off that "come backer" attack a few more hours.

So glad you've found 02, has certainly made my life a lot easier! Wink

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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Kate in Oz
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Re: Another newbie to your site.
Reply #7 - Nov 14th, 2010 at 6:25am
 
Hey Fid,

So glad to hear that the 02 is working for you!!  Like Joe, it has made a huge difference in my life too.

Wishin you all the best,
Kate
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Bob Johnson
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Re: Another newbie to your site.
Reply #8 - Nov 14th, 2010 at 7:27am
 
Fid, regardless of what you like for an abortive, the first line of defense is a preventive med, hence, the Verap.

See PDF, below.

And,


Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive
and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
 
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============================================

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
ALL NEW!! HEADACHE 2008-2009
The new 72 page Headache 2008-2009 is hot off the press! Click here to download the PDF instantly! (free)

If you would like a bound copy, send $12 (includes shipping) to
Robbins Headache Clinic
60 Revere Dr, Suite 330
Northbrook, Ill.60062

This is a good info site run by a sharp headache doc in the Chicago area--many medical articles, etc.



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Bob Johnson
 
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