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clusterf__ked

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Greetings from a longtime episodic
Jan 3^rd, 2009 at 11:40am

Hey there - a quick "hello" from a fellow episodic CH sufferer (10+ years)...My latest cycle has just decided to coincide with the new year, so I'm back in this terrible game.

My cycles have evolved from a reliable 12 month inactive interval during the first 5-7 years to a 14-15 month cadence over the last three years. Each episode typically lasts 6-8 weeks, with an average of one CH per day, but sometimes I'm "lucky" and have only 3-4 per week. I've been keeping a meticulous journal of my CH details since 2006, so here we go again.

I use nasal Imitrex as my front line abortive, and I'm a regular user of low dosage melatonin (1 mg off-cycle, 3-6 mg when in cycle).

My attacks have always been on the left side...for context, some medical history:

- "Mild" head injury and two cranio-facial surgeries about 10 years before my first cycle
- Severe tinnitus, primarily on the left side
- Diagnosed with moderate sleep apnea
- Benign venous angioma lesion in left frontal lobe
- Herniated cervical disc and general cervical disc disease, with most symptoms on left side

I've always been curious if any of my other "above the neck" issues issues are related to my CH. I'm getting hooked up with an oral appliance for my sleep apnea, so it will be interesting to see if that has any impact at all.

Otherwise my approach is to try to mange the condition and go on with life during the cycles....it's not easy, but I consider myself fortunate to be an episodic vs chronic. An even as bad as CH can be, there are plenty of other folks out there dealing with worse health and/or life issues...

Cheers!

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Guiseppi

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Re: Greetings from a longtime episodic
Reply #1 - Jan 3^rd, 2009 at 5:24pm

There are several people on the board who use that "positive pressure??" device thingy for sleep apnea. The ones who have posted have said it doesn't appear to have a positive or negative effect on their CH.

You'll hear this a lot on the board, have you tried 02? Wink

Certainly doesn't work for everyone but we're seeing a 70% plus success rate. It's cheap, no side effects, and works fast! I can abort an attack in 6-8 minutes without that buggy "imitrex hangover."

As an aside, there is a growing group here who are finding if you're not responsive to 02 and other"traditional" CH treatments, you should have your testosterone levels checked. Check out the threads by "mityrare." I'm watching it close, see if it's just coincidence or maybe they're really on to something!

Glad you decided to start posting, welcome to the board. Hoping you catch a short cycle this go around!

Joe

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clusterf__ked

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Re: Greetings from a longtime episodic
Reply #2 - Jan 4^th, 2009 at 12:04am

Guiseppi wrote on Jan 3^rd, 2009 at 5:24pm:

There are several people on the board who use that "positive pressure??" device thingy for sleep apnea. The ones who have posted have said it doesn't appear to have a positive or negative effect on their CH.

You'll hear this a lot on the board, have you tried 02? Wink

Certainly doesn't work for everyone but we're seeing a 70% plus success rate. It's cheap, no side effects, and works fast! I can abort an attack in 6-8 minutes without that buggy "imitrex hangover."

As an aside, there is a growing group here who are finding if you're not responsive to 02 and other"traditional" CH treatments, you should have your testosterone levels checked. Check out the threads by "mityrare." I'm watching it close, see if it's just coincidence or maybe they're really on to something!

Glad you decided to start posting, welcome to the board. Hoping you catch a short cycle this go around!

Joe

Thanks much...regarding the sleep apnea, I think you are referring to CPAP, which I've tried but can't tolerate...I'm getting fitted for an oral appliance that moves the jaw forward and opens up the airway to help with breathing...there is some research and even more speculation that CH and sleep apnea are linked in some cases. I figure it's good to treat the SA, and if it helps the CH then that's a bonus.

I've pondered O2 but have never got around to getting it....I save Trex for the worst hits, so I guess it would be good to have something to use more frequently...

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Just Plain Carl CH.com Old Timer Offline IT IS WHAT IT IS Posts: 449 Royal Oak, Michigan Gender:	Re: Greetings from a longtime episodic Reply #3 - Jan 4^th, 2009 at 1:07am Hello Clusterf....d, Ditto on the O2. I drug my feet getting it and was sorry I did. It worked almost immediately after I got set up. Knocks out a hit in about 10 min for me. Good Luck To Ya JPC
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BarbaraD CH.com Alumnus Offline Hugs to ya Posts: 8333 Douglasville, TX Gender:	Re: Greetings from a longtime episodic Reply #4 - Jan 4^th, 2009 at 6:54am I LOVE MY O2 and am a PUSHER!!! It aborts most of my hits almost as soon as they hit (and I've had a bunch to abort). I've almost completely gotten off of cafergot (which I used to take a LOT of) and just refer to O2 as my pain med. GET O2.. it's worth a try... Hugs BD
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clusterf__ked

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Re: Greetings from a longtime episodic
Reply #5 - Jan 6^th, 2009 at 12:35pm

Seems to be good enthusiasm and results from O2, so I'll likely take a more serious look....

A quick (and positive) update to my current status: I had two consecutive 1AM hits at K 6.5-7, but have been clear for the last three days (except for an 8 hour "recovery shadow" after the last hit). Not sure if this is indicative of a false start to this episode, or simply just a delay before the usual ramp up.

I'm not certain if my supplement approach has anything to do with this, but I have been diligent about taking the following daily since the first hit: morning - ginkgo, B-complex, vitamin D, EPA/DHA; evening - kudzu; bedtime - melatonin. I've also gone cold turkey on red wine and other alcohol, and no chocolate. Not getting too excited just yet, but I'll take it if if continues to work...

Thanks,

SO

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clusterf__ked

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Re: Greetings from a longtime episodic
Reply #6 - Jan 11^th, 2009 at 11:08am

Well, I can confirm this is a new cycle...I had a blissful six day break after the first two hits (just a few minor to medium shadows until yesterday), and now I'm in the middle of my second consecutive 9AM k7-8 hit.

I held out for two hours yesterday, then gave in to the Imitrex (and felt like crap for the rest of the day...woozy, dizzy, confused). This morning I have the trex next to me, but I'm holding out and trying to get through it...downing lot's of tea and running up and down the stairs.

Will be on the phone first thing tomorrow with the neuro for an O2 hook up....

SO

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barry_sword

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Re: Greetings from a longtime episodic
Reply #7 - Jan 11^th, 2009 at 1:01pm

Hi clusterf__ked and welcome. The thread Guiseppi was referring to is in the "Medications, Treatments, Therapies" section. Scroll down 23 topics to MITYRARE's post titled "Please, Please. Please" and take the time to read it. I would link it over but I have not figured that one out yet. Huh

As far as o2 goes, I really hope you give it a try. It is fairly inexpensive, and no side effects. You will need the following:

100% o2 with at least a 15 LPM regulator and a non-reabreather mask. You must get on it at the very first sign of an-oncoming hit. Hyperventilate taking it in. Also, if the non-rebreather mask has a couple of side holes you must block to prevent any outside air. Also cut the elastic off the mask, as a precaution.

MITYRARE and his doc are trying something as the regular methods are not working for him. I am following this closely myself. This cycle all my artillery is doing it's job, but I always keep my options open.

I hope you and your neuro find your "cocktail"

PF wishes, Barry

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Guiseppi

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Re: Greetings from a longtime episodic
Reply #8 - Jan 11^th, 2009 at 9:32pm

And consider adding magnesium to your supplements. Batch posted a research study a while back explaining ph balances and their positive and negative effects on CH attacks. I suck at remembering details....but the gist of the research was a daily magnesium supplement made your body less succeptible to a CH attack.

I've been on magnesium for years and strongly believe it's reduced both the frequency and the intensity of my attacks. Several others have posted similar results. Worth a shot. If you start a magnesium supplement you'll need a Calcium/Vitamin D supplement as magnesium leeches calcium outta your body.

Hang in there, wishing you a short cycle.

Joe

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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