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I'm back. (Read 855 times)
Todd M
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Texas
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I'm back.
Feb 10th, 2015 at 6:14pm
 
I had been pain free for 2 years. For the last 23 years my clusters come in the fall, usually September and last several months. When this past fall came and went I thought I had it made. WRONG. I noticed a pretty strong shadow in mid January. Then a series of nightly shadows that never turned into a cluster. Now in February I'm paying for the two years of no pain. I cant imagine those of you who suffer with chronic clusters. God Bless You! I have a quick question. How long does your individual attacks last? I usually have an attack (actual cluster) about an hour after going to sleep. The pain will last usually around 30 minutes. I'll have attacks at least every two hours the remainder of the night.  This cycle is so different from the others in that it came so late in the year and I've not had any attacks during the day, only at night.  Anyone else have cycles like this?
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« Last Edit: Feb 10th, 2015 at 6:15pm by Todd M »  
 
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shortstraw
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02 blows - thankfully


Posts: 78
Perth Western Australia
Gender: male
Re: I'm back.
Reply #1 - Feb 10th, 2015 at 7:20pm
 
Hi Todd
One thing you can be sure of is nothing stays the same.
I have had 5 previous cycles I can remember and am currently in my 6th.
Everyone has been different. Currently I get hit at 10.30pm on the dot but I remember previous cycles being wake up calls at 2.30am and other cycles being 5.30pm hits. Also although the hits can be like clockwork, I've also had individual hits at completely random times that don't get repeated. This cycle my hits average between 30-40 minutes but I have had them last 90 minutes (torture !)
Also my responses to medications have been different. Last cycle i was able to control it with a Pred taper and 240mg/day of verapamil, this cycle I'm on 480mg/day but still not pain free, go figure !
I suppose the advice will be to stay flexible in your response and don't be afraid to change or tweak your treatment as required.
Good luck and I hope you get a handle on it soon.

All the best
Alan
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There are things worse than clusters .... just
 
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Louise_p89
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Surrey, England
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Re: I'm back.
Reply #2 - Feb 10th, 2015 at 11:40pm
 
Hi Todd,
Mine have become quite predictable in this cycle. Every other night I being woken up at 3am with about a 7-8/10, luckily I have home oxygen which stops the pain within 5-10 minutes, however last February they were last 20-40 minutes as I didn't have oxygen. On the nights I'm not getting a demon one im waking up with shadows throughout the night, some I ride out others I use the oxygen. I find red bull works for any day attacks I have (quite rare) but I don't really want to drink red bull at 3am as I'm getting little sleep as it is!
Louise
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Bob Johnson
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Kennett Square, PA (USA)
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Re: I'm back.
Reply #3 - Feb 12th, 2015 at 10:42am
 
Frustrating to have such irregular, brief periods of attacks. It's makes it useless to use the usual prevention meds.

Talk to your doc about using this med (below) when you have an attack. It has several advantages:
1. quick action
2. inexpensive compared to the usual abortives. I fact, so cheap on a per dose basis and you need so infreqent, that you could buy out of pocked, in small quantitles, without having to consider insurance coverage.
3. Bein a pill, easy to carry withyou.

When I discovered it, it became the only med I used.
============
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

---------------------------------------------------------------

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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Bob Johnson
 
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