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jonas3333

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It's Baaack!
Feb 10^th, 2015 at 3:03pm

I'm just posting to delay sleep right now but I know that subject is one we all know. Hoping to jar and confuse it away.
I'm one of the lucky ones that only has to deal with it once or twice a year for 1-3 weeks at a time. I feel badly posting here because I see how badly some of you have it.

I always try to deny it when it's here. I ignore the initial shadows I get. Even each time it occurs, I go into denial and then it becomes "Maybe this one will only last 1/2 an hour! That happens sometimes." I count the time as I thrash about to pace the ebb and flow. I've gotten good at determining when the ebb begins over the years. Lately, it's been proving me wrong though, only to say "Oh, I'm not going away just yet!"

Usually, a "gentle" one will be met by it's big brother later that day I find. I thought I was good a couple days ago and then last night it hit 3 times in 6 hours. That's never happened before.
My cycle is so unusual this time. But this could be because I'm currently unemployed and don't have a daily schedule/regimen, so my sleep cycle has moved a lot over the last year.
I'm excited to read about the Vitamin D therapy and will be getting some of that reeaaal soon.

Do you guys find yourselves in the denial stages when it hits? I don't know if it's me getting older, but I have been useless for nearly 2 weeks now as I feel exhausted as one might during a flu recovery. I feel relieved when it goes, but my energy levels are just - totally gone for the entire day. I used to bounce back much better than that. I had the wacky idea to blast my system with Niacin-the kind that burns - for the one I had a few days ago. I think that might have made a difference. Oh, the things we try in that desperation. Ok. I can't put off sleep any longer which should be evident from this barely coherent post. Hope I and you all can stop visiting these pages.

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« Last Edit: Feb 10^th, 2015 at 3:06pm by jonas3333 »

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Bob Johnson

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"Only the educated are
free." -Epictetus

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Kennett Square, PA (USA)
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Re: It's Baaack!
Reply #1 - Feb 10^th, 2015 at 4:54pm

With such a short run of attacks the use of the usual preventive meds doesn't make sense: your cycle would be over by the time the med took effect.

Discuss with your doc the idea of using an abortive onlly for these few days of active attacks.

I'd suggest you consider this med; it's rapid acting; so inexpensive that you can buy out of pocket for the few days you need it; and, for a few folks, it has permanently ended the whole mess (in the article, below).
==================================

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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« Last Edit: Mar 3^rd, 2015 at 1:54pm by Bob Johnson »

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Ken_DFA

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Re: It's Baaack!
Reply #2 - Feb 10^th, 2015 at 4:59pm

Denial? Nah. My five stages of a cycle are as follows:

1. Dread. Oh sh-t. Clear the calendar for the next 12 weeks - this is going to suck.

2. Self-pity. The whole "why me" thing.

3. Resolve. I want to fight back. I start working out more often, eating better, keeping the house clean etc.

4. Anticipation. This cycle has got to stop soon, right? How many hits did I have last week? How does that compare to historical averages? Gee, I should be wrapping this thing up soon...right?

5. Relief! Joy! It's over! I can finally uncork that bottle of scotch after staring at it for the last 3 months! Time to unhook the O2 regulator and put it back in the closet!

Currently 6 weeks into a cycle; mentally, I'm somewhere between step 3 and 4.

-Ken

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AussieBrian CH.com Hall of Famer Offline CH - It's all in your head! Posts: 3851 Cairns, Qld, Australia Gender:	Re: It's Baaack! Reply #3 - Feb 10^th, 2015 at 7:21pm Denial? It's my number one weapon in this madness and I'd never have made it this far without it.
Back to top	My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com IP Logged

jonas3333

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Re: It's Baaack!
Reply #4 - Feb 10^th, 2015 at 9:30pm

Thanks, Bob!
I will definitely look into that further. Unfortunately, it would mean going to a doctor at this time and the insurance isn't there. So that's like, ~$200 to get a prescription.

I woke up PF just now and am so relieved about it. I don't know why this cycle is all over the place. Usually, they're so perfectly timed, I can (mostly) plan my day around them. This time, it's anyone's guess, but especially during sleep.

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Bob Johnson CH.com Alumnus Offline "Only the educated are free." -Epictetus Posts: 5965 Kennett Square, PA (USA) Gender:	Re: It's Baaack! Reply #5 - Feb 11^th, 2015 at 7:47am Contact the social work service in the largest hospital near you. See if they can steer you to medical services which you can afford, free clinics, docs who will negotiate etc.
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BarbaraD

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Hugs to ya

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Douglasville, TX
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Re: It's Baaack!
Reply #6 - Feb 27^th, 2015 at 7:46am

Definitely get on the D3... read Batch's regimen and do it right.. It's worked so great for so many of us.

And you might try taking Melatonin at night before bedtime. It's helped get me thru the night hits for years.. I take 20 mg before going to bed and get the rest at night without a hit.

But the D3 has worked wonders -- haven't been hit since Oct 2013 (and that's after being chronic since 97). Get to a drug store or WalMart and get the Vitamins and get on them!!! Kiss

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What don't kill ya, Makes ya stronger!

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BigHitter

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Re: It's Baaack!
Reply #7 - Mar 2^nd, 2015 at 4:26pm

I'm in a cycle now as well. 23 years episodic. Sometime I get 9 month remission, sometimes 15, and once even 22 months! But this cycle has got me on the run. Five hits a night. The first two are bearable (as these go), the next three are crushers. How do you chase these down and fight them when so many are coming? I am really despondent right now. I am so damn tired and I'd mortgage over my house for just one night of sleep. This is day 19. I really feel like I'm losing my mind.

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minute by minute by minute I keep holding on!

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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: It's Baaack!
Reply #8 - Mar 3^rd, 2015 at 12:28am

BigHitter wrote on Mar 2^nd, 2015 at 4:26pm:

How do you chase these down and fight them when so many are coming?

Oxygen has worked wonders for myself and many others. Being able to kill off CHs quickly minimizes the impacts, but when your sleep gets messed up it is never easy.

Keep at it and people are always around to support you.

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BarbaraD CH.com Alumnus Offline Hugs to ya Posts: 8333 Douglasville, TX Gender:	Re: It's Baaack! Reply #9 - Mar 3^rd, 2015 at 5:10am BH.. read the D3 regimen and get on it. It's worked for so many of us. And it's not going to hurt you... O2 is a great abort.. but read on the left how to do it RIGHT with the RIGHT mask. Hope this is a short cycle for you.
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