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changes in cycles (Read 3878 times)

PAT

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Rochester, New York
Gender: female

changes in cycles
Jun 4^th, 2015 at 9:46am

my husband is 55 and has had clusters off and on for 25 years. For 18 years his pattern was "predictable", i.e. one cycle every 12 months lasting for 2 to 3 months. Then the cycles actually decreased to every 18 - 24 months. The whole time during those cycles he was episodic and although the time of day would vary each cycle, once established it was always the same for that cycle. Everything changed in 2008 when he had them off and on for the whole 12 months. They stopped for 18 months and then in 2010 he had a 2-3 month cycle as in the old days. Stopped again until the Fall of 2012 where he began a vicious cycle for 5 months where they were coming every day at all random times. Because of his age and that cycle being so very bad, we held out slim hope that perhaps he was going to be one of those who was having one last extremely severe bout and they were over (HA). He went from 02/2013 until last week and they are back. So far mainly at the same time each day but I think his fear is that he's going to go back to that unpredictable cycle he last had! As sufferers and caregivers know, that only adds to his stress and compounds the problem! I have read elsewhere on these boards that you can never really be sure the beast has gone away no matter how long between bouts. We're just taking it day by day. I guess my question is what is the longest anyone has gone between cycles?

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maz

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Hampshire, England
Gender: female

Re: changes in cycles
Reply #1 - Jun 4^th, 2015 at 8:11pm

The one consistent thing about CH is it's inconsistency. Just when you think you have it sussed it will change into a completely different animal. I used to have regular cycles, and regularly timed attacks, but for the last couple of years the have been all over the place. Short cylces, mild headaches and odd "one offs" in the middle of a 3 week remission. My last 2 cycles were like this, and this cycle started off the same, but this one has decided to ramp up into a proper cycle, with big time CHs.

My longest remission is about 18 months, but I know some people have 5 years or more. But you are right - it never really goes away. It just hides for a while, long enough for you to get complacent and then jumps out of nowhere to surprise you.

I also take one day at a time or else it dominates your whole life. If you either have it, or are constantly worrying about getting it then it's controlling you. I try not to think about "the next one" till it happens, but I'm always well prepared for it.
Maz.

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Sean McE

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Seattle, Wa
Gender: male

Re: changes in cycles
Reply #2 - Jun 5^th, 2015 at 1:14am

   My longest is 2 years almost to the day. 2013 they came in May, this year-- May again, but never had them in May before then, spring cycles always used to be March or April. Jeez, can't count on anything anymore. My "normal" cycle is 2 months but that too is inconsistent anymore.

   55 ain't so old Pat! By the way, my family's history hails from Rochester with relatives still there and a few gravestones (maybe more than a few) in the cemetery.

   Hope you have some tools for dealing with the monster. Good luck, Sean

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PAT

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Rochester, New York
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Re: changes in cycles
Reply #3 - Jun 5^th, 2015 at 11:46am

He's a big proponent of the oxygen therapy. The Doc has had him on verapamil since the 2012/13 bout. His blood pressure runs high anyway, so it has helped with that! She also gave him prednisone this cycle, which for him "usually" can help break the cycle but not so far. He had a TIA (mini stroke) about a year or so ago and they are reluctant to give him any imitrex. He's always had good luck with imitrex so we're disappointed about that but soldiering on!
Sean - we're actually east of Rochester in a small town. Having family around here you probably know that Rochester isn't really that big, but it is the largest "city" around so we all reference that to say where we're from! One positive is that Rochester has a Headache Center and the Docs there are great. They actually know what clusters are and how unique they are by patient! Used to be like pulling teeth just to get oxygen for God's sake but the Headache Center Docs will set him up very quickly when a cycle starts. Thanks for the replies, it really helps a lot to talk with those who know!!!

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blacklab Ex Member	Re: changes in cycles Reply #4 - Jun 17^th, 2015 at 4:35am Hi Pat, have you looked at the vit d3 regime Pat ! a natural safe alternative preventative, especially with a history of heart issues. Plenty of info on it in the forums. good luck colin
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BarbaraD

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Douglasville, TX
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Re: changes in cycles
Reply #5 - Jun 27^th, 2015 at 8:21am

I second the D3 regimen. I was episodic for years (spring and fall like clockwork) then went chronic in 97 and stayed that way...

O2 (with a demand valve) worked great to abort and kept Red Bull handy.

But since going on D3 (Oct 2013) I have not had a hit. It's wonderful to be PF.

But as most, I'm not saying it's a "cure" - I'm just enjoying the time right now. If it comes back - I'll deal with it then, but for now...

Pat, look up the D3 regimen (or contact Batch). It's working for so many of us who do it right (like Batch says) so it's definitely worth a try. Kiss

What don't kill ya, Makes ya stronger!

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PAT

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Rochester, New York
Gender: female

Re: changes in cycles
Reply #6 - Dec 10^th, 2015 at 4:24pm

Shame on my for not updating earlier (!) - wanted everyone to know that we firmly believe that the D3 helped shorten his cycle this year. His cycle started around Memorial Day and was done by the end of July. That is one of the shortest cycles he has had since we have been together (14 years). He is still taking the D3 and magnesium and plans to continue. He had stopped the B50 but wants to start that up again because he felt much better while taking it. We're on month 5 since they stopped so here's hoping they are gone again for awhile. Thanks to everyone and esp. Batch for his information and insights!! Anyone who has not tried the D3 should really look into it....

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Batch

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Control The Beast With
O2 & D3 You Must

Posts: 3704
Bremerton, WA
Gender: male

Re: changes in cycles
Reply #7 - Jan 10^th, 2016 at 8:13pm

Hey PAT,

Thanks for the update and the kind works. It's always good to hear this regimen is working for another CH'er and that they suggest others give it a try.

Regarding the B 50, the Kirkland Mature Multi contains the same seven B vitamins and Folic Acid.

The real test of this regimen will hopefully be a non-event when your guy's next episodic CH cycle comes around and nothing happens. Sing out when he's skated through it.

When are you going to start the anti-inflammatory regimen? I have my entire family taking it... My brother, my sister and her husband, my wife, my 3 kids, their spouses and seven grand kids. I've also got my niece and nephew, their spouses and four kids taking it as well. The little ones get 50 IU vitamin D3 per pound of body weight and the cofactors at the RDA for their age group.

The list of medical problems prevented and treated with vitamin D3 at the doses we take is growing longer every year. See the following link at Vitamin D Wiki for details on over 60 medical conditions either successfully treated or prevented with vitamin D3 using RCTs and RTs as the medical evidence of proof:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

.

If you look over this list carefully you'll find roughly 10 of these studies called for 5000 IU/day vitamin D3... Most called for weekly or monthly doses of vitamin D3. The evidence is building that the non-skeletal benefits of taking vitamin D3 increase with a daily dose of at least 5000 IU/day and increase even more at 10,000 IU/day vitamin D3.

It's also interesting to note that 3/4 of the Proofs were reported in 2012 and 2013 - as of Dec 4 2013

Take care, have a happy and healthy New Year and please keep us posted.

V/R, Batch

« Last Edit: Jan 10^th, 2016 at 8:48pm 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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