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Cluster Headache Help and Support >> Cluster Headache Specific >> Need some input
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Message started by red ryder on Aug 14th, 2009 at 10:57am

Title: Need some input
Post by red ryder on Aug 14th, 2009 at 10:57am
Hi all thanks for the previous input to my question, going on 8-9 weeks here at kip 3-4 daily. Just wondering if anyone has started prednisone taper this late in cycle or verap.  I say this late in cycle because mine usualy runs 6 weeks, but usualy more severe.  All i am using now is energy drinks and O2. Any other suggestions?

Title: Re: Need some input
Post by Brew on Aug 14th, 2009 at 11:06am
Are you opposed to using preventatives, like verapamil, lithium, methysergide, etc.?

Title: Re: Need some input
Post by red ryder on Aug 14th, 2009 at 11:20am
Not opposed to using verap etc. just was wondering if that was probably the best option, I have never had this light of a cycle but never had one go this long either.  If it was you Brew would you go get a script fror verap. and start it.  How long do you vets stay on the verap after cycle ends.

Title: Re: Need some input
Post by FramCire on Aug 14th, 2009 at 6:32pm
I don't see why a prednizone taper would be a bad idea.  I usually do mine at the very beginning because it allows me a day or two to be totally ready.

With that said, prednizone has never ended a cycle for me, so I wouldn't count on it doing it for you either.

I would consider a prevent at some point.  

Title: Re: Need some input
Post by Guiseppi on Aug 14th, 2009 at 11:20pm
If the doc will go for it.......I'd ask for a 10 day pred taper to get you some short term relief, while you start on the verapamil. With no current end in sight for your cycle I'd sure want to get a good prevent on board. Good luck!

Joe

Title: Re: Need some input
Post by MJ on Aug 15th, 2009 at 2:21am
Late in cycles an addition of some medications may cause the cycle to draw out even longer. There is a lot of experiences to support this.

If I were you wich I'm not I wouldnt add anything if the CH is mild and the chance of ending is near.

Rivea Corymbosa seeds (RC) are one medication that may just erase the CH all together with no reports of extending a cycle that I know of. There is experience to support this as well.

Worth a look.

Title: Re: Need some input
Post by red ryder on Aug 15th, 2009 at 2:04pm
Thanks for the info Joe and MJ , I will probably at least go get the script for pred. and verap filled and if she doesn't let loose in the next week I will start up on the meds. I have not done alot of research on the rc seeds, I will look into every option though. Thanks guys.  Jay

Title: Re: Need some input
Post by Bob_Johnson on Aug 15th, 2009 at 8:16pm
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).
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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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Michigan Headache & Neurological Institute for another list of treatments and other articles:

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Title: Re: Need some input
Post by red ryder on Aug 15th, 2009 at 8:48pm
Awesome info Bob I will definately print this out. By the way does anyone by chance know a good Headache doc in the Huntsville Alabama area. Again, thanks everyone for all the help and info.

Title: Re: Need some input
Post by Skyhawk5 on Aug 16th, 2009 at 12:30am
Dr. H. Lee McDaris is on the "OUCH" list for your area. To see this yourself click on the OUCH website, then treatments & medications, scroll down to sufferer recomended Doctors.

Good Luck, Don

Title: Re: Need some input
Post by red ryder on Aug 17th, 2009 at 8:55am
Thanks skyhawk, I found Dr Mcdarris in the phonebook and he is at a headache clinic so hopefully he has plenty experience with this beast.

This is just the wierdest cycle ever feels like an ongoing sinus headache for 2+months, but I know beter than that.He has also tried to shift sides on me a little this time.I guess he likes to keep us on our toes.Again I truely appreciate all this helpful info guys and gals.

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