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New to CH.com, but not to the headaches (Read 1082 times)
LukeC
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New to CH.com, but not to the headaches
Jul 14th, 2012 at 2:20pm
 
Hey everybody.  First off it is awesome to find an entire community of people who suffer from these damned headaches.  After reading some of the stories of others who have them, I guess I have to count my blessings as I don't get them quite as often (per day) or normally as suddenly as most of you do. 

I have been diagnosed with cluster headaches since leaving active duty October 2010.  I had been getting them since 2007, but always thought it was something I did or smelled or ate that gave me another one of "those" headaches, as I used to call them back in the day.  Mine came usually once, maybe twice, a day for about 3-4 weeks with a 3-4 month remission period.  Mine are always behind my right eye, in fact I can feel the shadow of it sitting there right now, waiting......  I remember many a times trying to pray to the next deity to relieve my pain in exchange for my soul.  Never worked though.  I did find that massive amounts of Excedrin Extra Strength could work for me as an abortive, or even as a preventative medication if I were going to start drinking.

Once I was diagnosed, I contacted my local Veterans Affairs Medical Center and scheduled an appointment about it, as it is one of my service connected disabilities.  I was prescribed 240 mg of Verapamil as well as 25 mg Sumatriptan.  Since raking the Verapamil, my cycles stay a but longer (6-7 weeks long) but my remission periods seem to be somewhere around 6 months long now.  I also feel like my body is building up an immunity to the Sumatriptan as it has become less able to knock out the demon.

Luckily I am still able to continue doing what I love in the US Navy Reserves and has yet to interfere with my duties there.  It does hinder my social life however, as drinking usually puts me in a state of utter hell.

So that's my story.  I welcome any comments, questions, or support you may have to offer and I hope I can do the same in the future!
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Bob Johnson
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Re: New to CH.com, but not to the headaches
Reply #1 - Jul 14th, 2012 at 3:07pm
 
One benefit: you waited  to "old age" before they made their appearance. <bg>

Two thoughts: 25mg is O.K. but most cluster folks find the injection form faster acting and, probably, more "thorough" in knocking out an attack.

Verap dose is rather low. You may find moving up would keep the shadows away and give longer protection. If you haven't seen it:

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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LukeC
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Re: New to CH.com, but not to the headaches
Reply #2 - Jul 14th, 2012 at 3:52pm
 
I never heard of the injection version of sumatriptan until I found this site and it is one of the things I am going to be talking to my doctor about very soon.  As for the Verapamil, I was on the 80 mg 3x a day to start out and check my blood pressure, but soon switched to the 240 mg tablet for a once a day convenience.  I will also be talking to him about bumping it up to a higher dose, but I know he will have concerns about lowering my blood pressure too much, as I have a very normal blood pressure already.  How effective is the oxygen treatment?
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Bob Johnson
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Re: New to CH.com, but not to the headaches
Reply #3 - Jul 14th, 2012 at 5:09pm
 
You'll hear loads from the O2 crowd! But look at the buttons, left, also.

Results I've seen suggest about 60-70% effective at aborting an attack compared to about 90% for suma. injection.

Print out the PDF file below. Good learning and a handy tool to use as a discussion tool with your doc.
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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (96 KB | 16 )

Bob Johnson
 
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Mike NZ
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Oxygen rocks! D3 too!


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Auckland, New Zealand
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Re: New to CH.com, but not to the headaches
Reply #4 - Jul 14th, 2012 at 5:12pm
 
For the verapamil people with CH can often tolerate significantly higher doses than "normal" people, with some people going to around 1000mg a day.

I suspect that with the single 240mg tablet you're taking the SR (Sustained Release) version, however some people get significantly better results using the normal instant release version. This is something to experiment with, working with your doctor.

Oxygen is something you'll just love when you get to use it as it's life changing. For me, using 25lpm and a non-rebreather mask I can kill off my CHs in about 5 minutes, which is a long way from the 45-75 minutes of torture I had before I had access to oxygen.
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Guiseppi
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Re: New to CH.com, but not to the headaches
Reply #5 - Jul 14th, 2012 at 6:11pm
 
Welcome to the board! The VA will balk at the injections as they are very expensive. It'll take some letter writing by your doc and some pushiness on your part!

the oxygen. I abort in about 6-8 minutes. That's from onset of pain, to complete relief. I'm a 52 year old male, episodic sufferer since the mid 70's. NOTHING has proven as fast and consistently effective at aborting my attacks, with virtually no side effects.

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

Check out this link for everything you ever wanted to know about 02. Then go to the meds section of the board and check out the post "123 pain free days and i think I know why". A simple vitamin/anti inflammatory regimen that's providing a lot of relief for a lot of people. Cheap, good for you even without CH, worth a shot.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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Skyhawk5
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Re: New to CH.com, but not to the headaches
Reply #6 - Jul 14th, 2012 at 8:43pm
 
I abort over 90% of my attacks with high flow oxygen. Be aware most Doctors VA or civilian know very little about CH or especially oxygen for CH. Educate yourself here about it. Getting proper treament can be an uphill battle.

Thank you kindly for your service!!!!

Don
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Though I walk through the valley of the shadow of the Beast , I  have O2 so I fear him not.
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allratt
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Re: New to CH.com, but not to the headaches
Reply #7 - Jul 27th, 2012 at 10:36am
 
Again I am new to the forum but by no means new to cluster headaches. The pain they have caused me have damaged my heaert and my eye. I was on verapamil for two years and it seems to calm them a bit my neologist then put me on lithium and clonazapam and topomax and i take imitrex shots as needed more than reccommended dose had to get specail permission from dr, pharmacy and such cause of such high risk of heart attack with every shot but nothing else works and im a two sided cluster headached person so surgury to remove the nerve is not an option sorry for all the mistypes im not a good texter lol
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allratt
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Re: New to CH.com, but not to the headaches
Reply #8 - Jul 27th, 2012 at 10:38am
 
Again I am new to the forum but by no means new to cluster headaches. The pain they have caused me have damaged my heaert and my eye. I was on verapamil for two years and it seems to calm them a bit my neologist then put me on lithium and clonazapam and topomax and i take imitrex shots as needed more than reccommended dose had to get specail permission from dr, pharmacy and such cause of such high risk of heart attack with every shot but nothing else works and im a two sided cluster headached person so surgury to remove the nerve is not an option sorry for all the mistypes im not a good texter lol
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