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newbie to site (Read 592 times)
moneymaker
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newbie to site
Oct 26th, 2012 at 6:24pm
 
Hello new to the site but not clusters,Live in Missouri,No health insurance,,,Well i have been cluster free for 2 1/2 years and sept 24th the beast decided to visit me,went from small sinus like headaches the 1st week to 9 and 10 scale headaches from october 13th thru 31 st with 4 a day,then calm down  a bit then had a 5 hour monster the 23 rd and now its all in the ear/jaw area every 4-5 hoursmHope they are on there way out soon as i cant recall how they ended up stopping last time,Dr put me on Imitrex(sumitriptan)pills which i take the max dose of 200mg a day to get rid of the pain and verapimil,So do you think i have much longer with this cluster cycle?
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ClusterHK
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Now in Sydney, Australia!
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Re: newbie to site
Reply #1 - Nov 2nd, 2012 at 1:19am
 
Hello moneymaker!

Everyone's a little different, and the nature of the beast keeps changing so it's hard to guess how long a cycle will last for.

The length of your previous cycles might give you an indication of how long this cycle will last for, but it's not guaranteed.

Anecdotally, I've read that successful aborts tend to shorten the cycle, but preventative meds such as Verapamil, while reducing the severity and frequency of attacks, may make the cycle longer.

Anyway, hoping that the cycle ends soon for you!
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Now trying a beer test - fingers crossed.
 
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wimsey1
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Re: newbie to site
Reply #2 - Nov 2nd, 2012 at 8:09am
 
No matter the cycle's length you should consider using trex autoinjectors and O2 instead of the pills. O2 plus an energy drink should be your first go-to. Trex injection if still needed. And maybe a preventative would make sense if your cycle is long enough. Blessings. lance
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Bob Johnson
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Re: newbie to site
Reply #3 - Nov 2nd, 2012 at 10:39am
 
Imitrex pills are the least effective form of this med for Cluster--just too slow acting.

But $ becomes an issue without insurance. Print the following and discuss with your doc. This med almost as fast acting as the injection but the per dose cost is much less. Given the high end attacks you report, you need one of the more potent abortives. (Likely you can get samples from the doc to do a trial to see if it works for you. You should have a good idea with 2-3 uses.)
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Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.


Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

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Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
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The Verap dose not mentioned. We need high dosing, often scares docs who don't know about treating Cluster. So, print following and give to the doc.

Second consideration is that if you end up with a quick series of attacks, with onlly short breaks between, you can use Verap. full-time.
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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).

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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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If you are not seeing a doc with experience with headache, print the PDF file, below, and give to you guy.
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Bob Johnson
 
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