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Rumeke

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Westfield, NC
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Am I doing something wrong or is it just my cycle?
Nov 12^th, 2015 at 10:08am

Diagnosed in 2005 and my cycles have been late winter early spring for 6-8 weeks every 2 years. In 2013 they began in August and lasted until the end of November. Mostly mild the 1st 3 months 2-3 times a night, 2 hours apart like clockwork. The last month they ramped up in strength and started coming every hour at night, went on O2 and was good until they ended

This year August again..1-2 times at night, O2 worked in 3-5 minutes so I was good. Just 1 or 2 nights where O2 did not work..had to ride them out. Since the time change they have been every hour and it's taking 10-15 minutes to abort..sometimes I have to stop..wait a few minutes and the 2nd time on O2 does the trick. Shadows all morning off and on.

I am using a simple non-rebreather mask, 15LPM. Closing both holes with my fingers for inhale and removing fingers for exhale. Am I doing something wrong or do you think it's just the end of my cycle coming and the Beast is trying to get his last licks in?

I have been on the D3 regimen for a few years and my D25 stays about 80-85 ng/ml. Upped my D3 to 20,000 first of the month.

Sorry this is so long but wanted to give some background.

Judy

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AussieBrian

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Re: Am I doing something wrong or is it just my cycle?
Reply #1 - Nov 12^th, 2015 at 3:08pm

G'day Judy, and with the ones that are coming every hour are you sure it's the O2 that's stopping them or could it be they were only going to last 10-15 minutes anyway?

Reason I ask is it resembles another form of headache similar to CH but, happily, quite easily dealt with.

Perhaps worth discussing it with a headache specialist.

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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com

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Batch

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Bremerton, WA
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Re: Am I doing something wrong or is it just my cycle?
Reply #2 - Nov 12^th, 2015 at 3:10pm

Hey Judy,

You're not doing anything wrong... I suspect you've an allergic reaction cooking... Allergic reactions kick off a flood of histamines that make just about every CH intervention less effective... if effective at all...

Many allergic reactions and some minor infections are sub-clinical... i.e., no outward or obvious symptoms... When an allergic reaction triggers the release of histamines from mast cells, they flood the brain and trigger the release of CGRP and other inflammatory agents... When that happens, the beast jumps ugly and you get whacked!

The good news is there's an easy fix that should get you back PF in less than 24 hours... It's called Benadryl (Diphenhydramine). It's a first-generation antihistamine that blocks H1 histamine receptors on brain cells, particularly in the hypothalamus and trigeminal ganglia... and that stops CGRP production.

When I suspect an allergic reaction, I take a 25 mg of Benadryl (Diphenhydramine) a.k.a. "Allergy Medicine" at Costco twice a day, one every 12 hours. If I need to drive during the day, I take two (2) of the 25 mg Benadryl tablets with the evening meal... This has been very effective for me and several other CH'ers with the same kind of problems you're experiencing.

Check with your PCP if you have questions about contraindications with any med's you've had prescribed before starting Benadryl (Diphenhydramine).

Take care and please keep us posted.

V/R, Batch

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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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Rumeke

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Re: Am I doing something wrong or is it just my cycle?
Reply #3 - Nov 12^th, 2015 at 5:47pm

Thanks Batch. No allergies that I can think of however I am just getting over an infection/celulitis in my foot from a spider bite! Duh! Don't know why I didn't connect the dots. Finished my antibiotics yesterday. I'll see how tonight goes but was able to get a nap in today for 2hrs with only a tiny shadow when I woke up. First time in almost 2 weeks I've slept longer than an hour!

I will keep the benadryl in mind if things don't improve in the next few days.

Judy

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Batch

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Re: Am I doing something wrong or is it just my cycle?
Reply #4 - Nov 12^th, 2015 at 7:58pm

Judy,

The Benadryl (Diphenhydramine) won't hurt. I would take it... as you can have an allergy without any outward or obvious symptoms...

As you've had an infection and been on antibiotics...your 25(OH)D has most assuredly taken a dip... I'd jump on 50,000 IU/day vitamin D3 for at least 5 days then drop back to your maintenance dose...

I'd also add a good probiotic. Take as directed on the label until the bottle is empty... Most antibiotics wipe out friendly colonies of flora and fauna called the microbiome in the GI tract... As most of our immune system resides in the GI tract, these decimated friendly colonies need replacing. Taking a good probiotic is the fastest way of doing this.

Take care and please keep us posted.

V/R, Batch

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« Last Edit: Nov 12^th, 2015 at 7:58pm by Batch »

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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Rumeke

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Westfield, NC
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Re: Am I doing something wrong or is it just my cycle?
Reply #5 - Nov 12^th, 2015 at 9:58pm

I'll pick up some benadryl tomorrow. I've been on 20,000 since all this started the 1st of the month..will add another 10,000 for a few days. As for the probiotics I have been on PB-8 at night for months. I did start waiting until one of my middle of the night hits to take them so I could space them from the antibiotics.

As always..many thanks!
Judy

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Bob P CH.com Hall of Famer Offline Shut up Bob! Posts: 4573 Clio,California Gender:	Re: Am I doing something wrong or is it just my cycle? Reply #6 - Nov 13^th, 2015 at 8:07am Way to go Brian. CPH is very much like CH and Indocin is 100% effective with CPH. I think anyone who doesn't at least give indocin a try, just to rule out CPH, is nuts.
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Rumeke

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Westfield, NC
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Re: Am I doing something wrong or is it just my cycle?
Reply #7 - Nov 13^th, 2015 at 9:53am

Bob and Brian...Call me nuts I guess. My neuro has diagnosed and treated many, many CH patients and I trust his diagnosis. My attacks only last 10-15 min or less because of the O2. Without it I have rocked and rolled for up to 45 minutes and that includes the ones that come every hour as I get to the end of my cycle. I have no doubt that I have Clusters.

Thanks however for your imput..always welcome.
Judy

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maryo CH.com Veteran Offline Johnny & Roy puzzle where to apply the O2 mask Posts: 171 x1\|Little Deer Isle\|USA\|usa\|536\|53\|ME,Maine Gender:	Re: Am I doing something wrong or is it just my cycle? Reply #8 - Nov 13^th, 2015 at 9:42pm That happened to me . . . well it was a few years ago. My cycle was 2x/night and the oxygen aborted well, and that morphed into 4-5x night, hard to abort. My neuro said I was having rebound headaches. Got on verapamil and have never looked back, but I use O2 as my go-to abortive.
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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: Am I doing something wrong or is it just my cycle? Reply #9 - Nov 13^th, 2015 at 11:03pm I don't doubt your CH for a second, Judy, however it's possible to suffer more than just one headache syndrome. It's not fun but it's manageable once you're able to pick them apart. I promise that was all Bob and I meant.
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Rumeke

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Posts: 173
Westfield, NC
Gender: female

Re: Am I doing something wrong or is it just my cycle?
Reply #10 - Nov 14^th, 2015 at 7:54am

Sorry guys...I guess I was in a testy mood..getting 4 hrs of sleep in 1 hr intervals was starting to wear on me! I do appreciate your imput believe me!

I think I am coming to the end of my cycle..actually slept 3 hrs in a row last night and did the happy dance. I have found however that stopping O2 after 10 min if I have no change and then after waiting 2-3 minutes hitting the O2 again stops them in their tracks in under 5 minutes.

I have to keep reminding myself that each cycle can be different and to just find a way to get to the end.

Peace and Pain Free nights,
Judy

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Mark Olson CH.com Veteran Offline I Love CH.com! Posts: 142 San Jose, CA Gender:	Re: Am I doing something wrong or is it just my cycle? Reply #11 - Nov 14^th, 2015 at 12:08pm I know how you feel regarding lack of quality sleep. I get cranky and I can't seem to get much done when I am . I actually got a full night's sleep last night, so I am almost feeling human again. Hope your improving trend continues...
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Rumeke CH.com Veteran Offline Posts: 173 Westfield, NC Gender:	Re: Am I doing something wrong or is it just my cycle? Reply #12 - Nov 14^th, 2015 at 12:52pm Thanks Mark! Oh that wonderful amazed feeling the first morning you wake up and realize you slept all night without a CH!! Continued Pain Free nights to you and hope I'll be joining that club soon! Judy
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