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Georgewhufc

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How long is your cycle?
Oct 9^th, 2016 at 11:40am

For those episodic sufferers, how long is your cycle?

This is my first ever cluster, my neurologist told me it would be up to 3 months of suffering, I'm now 3 months and 5 days in, and still getting low kip attacks once a week and nasty shadows almost daily. I'm still treating with oxygen and am on Batch's anti inflammatory regimen.

Just wanting to know if I should be starting to be concerned with the length of my cycle?! Thanks all

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AussieBrian

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Re: How long is your cycle?
Reply #1 - Oct 9^th, 2016 at 11:37pm

I can only speak for myself, George, and it might not help a lot, but I've honestly never had two cycles the same. Some went on for months, some lasted only weeks, while one truly lasted several lifetimes.

My defence has always been "one hit at a time, one day at a time, I'll beat the bastage every time".

Tomorrow will be a beautiful day.

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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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BobG CH.com Hall of Famer Offline Posts: 6422 St. George, UT Gender:	Re: How long is your cycle? Reply #2 - Oct 10^th, 2016 at 5:57am When mine first started (42 years ago) they were hit-n-miss a week or couple weeks at a time. After about 3 years they settled in at 6-8 weeks twice a year. My last cluster started in 2011 and ended about 3 months ago.
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Ilndguy CH.com Junior Offline I Love CH.com! Posts: 43 Michigan Gender:	Re: How long is your cycle? Reply #3 - Oct 10^th, 2016 at 7:19am Welcome For 20 years mine would last for 6 to 8 weeks. They would come at all different times of the year. My last one, which just ended, unfortunately lasted 14 weeks. Stay on the D3 for that helps a lot of us. Ilndguy
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Bob P CH.com Hall of Famer Offline Shut up Bob! Posts: 4573 Clio,California Gender:	Re: How long is your cycle? Reply #4 - Oct 10^th, 2016 at 7:43am For the first 20 years mine were 4-6 weeks every 8 or 9 months. Once I turned 40 y/o the cycles got longer but so did the remission periods. My last one lasted almost 6 months but that was 11 years ago so I believe it was my LAST one!
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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: How long is your cycle? Reply #5 - Oct 10^th, 2016 at 7:05pm For 43yrs the would arrive every Spring and stay for 3 months and same again in the Fall, but Since being on the vitamin D regimen I've been CH free. Hoppy
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maz CH.com Hall of Famer Offline I Love CH.com! Posts: 1071 Hampshire, England Gender:	Re: How long is your cycle? Reply #6 - Oct 12^th, 2016 at 5:39pm Mine have been anywhere between a single attack, to 18 months. Episodic for 7 years, then chronic for 18 months, and now stopped for the time being. I agree with Brian - one at a time is the best way to cope.
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RoniL

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Re: How long is your cycle?
Reply #7 - Oct 14^th, 2016 at 1:59pm

It appears my cycle is 28 years of CH ~ 28 years remission & now 28 years later, they are back!!!

6 weeks ago after 28 years of freedom CH has returned, I am devastated to say the least. Back in the day Imitrex worked for me and oxygen wasn't really an option. Now that I am a senior citizen Imitrex is not covered on my plan.

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LasVegas CH.com Sponsor Offline Episodic CH since 11 yrs old, now 50. Posts: 2020 north of the 60th parallel Gender:	Re: How long is your cycle? Reply #8 - Oct 18^th, 2016 at 3:55pm Episodic since 11 yrs old, now 48...my average is 2 to 3 months, every other year, on odd years, only in the Fall season, left sided.....skipping 56 years at a time the past decade, rumor has it as we get older they subside in frequency of cycles, attacks and intensity, rumor. G ood luck! -Gregg in Las Vegas
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MaritimeMan

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Re: How long is your cycle?
Reply #9 - Nov 25^th, 2016 at 3:23pm

I have had Episodic CH since I was a teen, but have only been keeping a journal for the past 5 cycles. I'm one of the lucky ones (I guess) It seems mine are pretty predicable lasting 5-8 weeks.

I say lucky as, the more predictable they can become/are, the more you can use the mental defense of "this too shall pass" to help deal.

I am currently on Week 5 of my current cycle. (every 2- 3 years....the free periods have grown over the years) So maybe the rumor is correct.

My cycles 2016, 2013, 2011, 2009, 2008, 2006

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« Last Edit: Nov 25^th, 2016 at 3:26pm by MaritimeMan »

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MichelleP12

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Re: How long is your cycle?
Reply #10 - Jan 29^th, 2017 at 5:30pm

Hello all, this particular cycle has been going on since late September. My neuro has never mentioned D3, and my General MD (whom I saw before my Neuro said that O2 "just wouldn't work for you." So I have only been given O2 in the ER once.

Is there a particular brand of D3 that works best? I have been chronic for years, so eagerly look forward to your advice. Thanks!

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LasVegas

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Episodic CH since 11 yrs
old, now 50.

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north of the 60th parallel
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Re: How long is your cycle?
Reply #11 - Jan 29^th, 2017 at 5:54pm

MichelleP12 wrote on Jan 29^th, 2017 at 5:30pm:

Hello all, this particular cycle has been going on since late September. My neuro has never mentioned D3, and my General MD (whom I saw before my Neuro said that O2 "just wouldn't work for you." So I have only been given O2 in the ER once.

Is there a particular brand of D3 that works best? I have been chronic for years, so eagerly look forward to your advice. Thanks!

Sorry to read you have suffered so long without adequate medical guidance. Any reputable D3 should work, keeping in mind the co-factor vitamins that are also required and recognizing your triggers, diet, lifestyle, etc. Somebody else can chime in more on the D3 advice, but my question to you is where do you live?

I have compiled an extensive list of recommended doctors for CH treatment from all over the USA, Canada and abroad. Your doctor is not helping you. I would like to share a few names of doctors with you, that were all highly recommended from fellow CH'ers members of this website. You are clearly in need of a new doctor. PM me if you prefer or reply here. I would be happy to help if you want Wink

-Gregg in Las Vegas

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Wishing everybody at CH.com less pain w/ more productivity in their lives in 2019

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Mike NZ CH.com Hall of Famer Offline Oxygen rocks! D3 too! Posts: 3785 Auckland, New Zealand Gender:	Re: How long is your cycle? Reply #12 - Jan 29^th, 2017 at 9:44pm MichelleP12 wrote on Jan 29^th, 2017 at 5:30pm: Neuro said that O2 "just wouldn't work for you." How on earth would he know that? Or does he / she just not believe in O2 working? I'd be tempted to try another neuro.
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Esheel31 CH.com Junior Offline I Love CH.com! Posts: 74 Virginia,USA Gender:	Re: How long is your cycle? Reply #13 - Feb 1^st, 2017 at 9:48am My first one lasted 3 weeks. My GP prescribed antibiotics,because; "You have a sinus infection." My last one was 17 weeks. God. My Neuro feels the same about O2. He says it only delays the attack. Fortunately,he is also understanding and has offered to try or prescribe most anything I ask.
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