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New guy with some questions??? (Read 1590 times)
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New guy with some questions???
Apr 17th, 2014 at 6:03pm
 
Glad I found this great site and glad to be here. Have had cluster headaches for past 5 years. Finally saw a Doctor who wants to help me. She is starting me off with Topiramate and Rizatriptan. And maybe oxygen after we see how these work for me.

Was wondering if anyone here had used or is using these medications and if so how did they work for you.  All information is greatly appreciated.

Thanks in advance.
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Melissa
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Re: New guy with some questions???
Reply #1 - Apr 22nd, 2014 at 11:44pm
 
This Topic was moved here from General Posts by Melissa.
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Re: New guy with some questions???
Reply #2 - Apr 23rd, 2014 at 3:19am
 
Hi,
I have not tried the drugs you mention, but oxygen is a life saver. You must use it correctly though. You need a flow rate of at least 15 litres or more per minute, and a non rebreather mask. If you get either of these wrong it won't work, but get it right and you'll wonder how you ever survived without it.
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Bob P
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Re: New guy with some questions???
Reply #3 - Apr 23rd, 2014 at 7:31am
 
Topomax is kind of hit or miss.  Some have success using it as a preventative, most don't.
Rizatriptan (Maxalt) will work as an abortive in most cases.  Try to get the melt under your tongue kind as it gets into the system quicker.
Oxugen works for most as an abortive.  I could abort an attack in 5 to 8 minutes with a flow rate of 7 LPM.
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Re: New guy with some questions???
Reply #4 - Apr 23rd, 2014 at 9:34am
 
Bob P wrote on Apr 23rd, 2014 at 7:31am:
Topomax is kind of hit or miss.  Some have success using it as a preventative, most don't.
Rizatriptan (Maxalt) will work as an abortive in most cases.  Try to get the melt under your tongue kind as it gets into the system quicker.
Oxugen works for most as an abortive.  I could abort an attack in 5 to 8 minutes with a flow rate of 7 LPM.


Bob - Is that classified as doing it right?  Wink

Answering the first post: I would start with oxygen and always have it on hand! Then, experiment with the meds.

As Bob already pointed out - It's really quite effective for most of us, while various drugs can be hit or miss!
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« Last Edit: Apr 23rd, 2014 at 3:56pm by Marc »  
 
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Re: New guy with some questions???
Reply #5 - Apr 24th, 2014 at 11:06pm
 
It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location. (This will add your location, just below your name, every time you post a message.
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Top. is not first choice around here because it's not he most effective preventive and too many folks complain of mental confusion as as a side effect.

Suggest you print the PDF file, below, and use it to discuss you options with doc.

Verapamil is the most widely used and effective preventive med but doc's who don't work with Cluster are scared off by the high doses we need for Cluster. But it's rarely a problem and many here use in high doses.
==========
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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