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maryo

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Johnny & Roy puzzle where
to apply the O2 mask

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CH acitivity up, Age 60, Lyme?
Aug 21^st, 2013 at 10:55am

I have had good control for five years on verapamil. Once a year a get a headache, I start the verapamil (80 bid), I do that 2-3 weeks. I stop. Clusters gone.

This year I had a cluster in Feb, and then again this summer. Only once in 33 years did I get summer clusters. I've been hit hard. Need more verapamil, and when I try to stop the V they return.

I confess that I'm paranoid about Lyme Disease which is prevalent in my community and have this wild theory that I have an infection causing this flare (and other vague symptoms such as fatigue). My husband contracted Lyme without knowing it and didn't find out until the pins and needles in his feet were investigated.

Just wondering what things would cause CH to suddenly flare, and "out of season" so to speak.

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pattik

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Re: CH acitivity up, Age 60, Lyme?
Reply #1 - Aug 21^st, 2013 at 12:17pm

I had an unusual summer episode a few years back which started during a Colorado vacation at high altitude. The episode turned out to be much shorter than normal, but quite intense.

As to the infection theory, take a look at the threads regarding Vitamin D and CH. Vitamin D therapy is having excellent results (over 80%). One of the issues with less than good results is the presence of infection and other inflammation sapping the available vitamin D in our blood, thus making it less available for quelling CH pain. Most CH'ers blood tests for vitamin D come in at very low levels. Here is one thread on this subject Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

~Patti

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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: CH acitivity up, Age 60, Lyme? Reply #2 - Sep 26^th, 2013 at 11:39am Thank you! I think you're right on. I usually take vit D supplements but have slacked off this summer.
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shooky

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33 years of CH.

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Re: CH acitivity up, Age 60, Lyme?
Reply #3 - Sep 26^th, 2013 at 1:09pm

Had CH for 31 years and only 7-8 years ago got my first summer cycle. All my cycles but one since happened in summer.

It is the nature of CH to change - every once in a while, rapidly, or only once after years of relative stability.

Having said that - an unexpected cycle is sometimes a sign for presence of a new trigger, which could be a separate condition.

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Rumeke

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Re: CH acitivity up, Age 60, Lyme?
Reply #4 - Sep 26^th, 2013 at 5:11pm

As a side note..I have 2 daughters and a granddaughter with chronic Lyme and all have very low Vit D levels. Since it's an ongoing inflammatory infection that saps any Vit D they naturally produce they all take 15,000 D3 daily. I would definitely get the IGeneX test as it is the most accurate. I believe their family Dr. drew the blood and they mailed it themselves to California.

Interesting that the low D3 is also prevalent in CH. That may indeed be something to consider and at least get your D25 checked.

I also have CH and the D3 regimen has truly been a God send!

Hoping for pain free days/nights soon!

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maryo

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Johnny & Roy puzzle where
to apply the O2 mask

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Re: CH acitivity up, Age 60, Lyme?
Reply #5 - Sep 26^th, 2013 at 9:52pm

My clusters have been so well controlled the last few years . . . my neuro would get practically giddy thinking I was "outgrowing" them. Then, bang! They hit with a vengeance this summer. Yeah, the nature of CH!! So I will get on the Vit D and other supplements . . . and I understand the California Vit D test is a simple skin poke so that's a cinch. Anyhow, having my CH so well under control for several years, I have not been on this forum and have missed out on the latest. It's been a nice vacation while it lasted . . .

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Rumeke

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Re: CH acitivity up, Age 60, Lyme?
Reply #6 - Sep 26^th, 2013 at 10:46pm

I would definitely get the D25 test done and see what your level is now. The California Test I spoke of is for Lyme to see if that's what's eating up your D levels. My girls' Lyme symptoms come and go and their D25 levels drop when the disease is active. Tests by LabCorp (for example) are just not accurate for Lyme.

I would get the D3 regimen going...it has pretty much knocked my odd summer cycle (mine are in the spring) out. If you do have chronic lyme it could be dropping your D levels enough that your CH is rearing it's ugly head. I hope however it's just the CH is changing course and not Lyme. No one should be burdened with both!

If you haven't read through *123 Days PF And I Think I know Why* under Medications,Treatments and Therapies. there is great info on the D3 regimen by BATCH.

Good luck and wishes for a pain free night/day!

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ttnolan

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beats me

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Re: CH acitivity up, Age 60, Lyme?
Reply #7 - Sep 27^th, 2013 at 4:16am

And oxygen? If you don't have it, or have tried it unsuccessfully, read the "oxygen info" link on the left menu. It usually aborts attacks in 5-15 minutes! About one in a hundred CH attacks don't respond to O2 for me... and just thinking about going through an attack without oxygen(or it not working) is enough to get me pacing.

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« Last Edit: Sep 27^th, 2013 at 4:22am by ttnolan »

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maryo

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Johnny & Roy puzzle where
to apply the O2 mask

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x1|Little Deer Isle|USA|usa|536|53|ME,Maine
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Re: CH acitivity up, Age 60, Lyme?
Reply #8 - Oct 6^th, 2013 at 9:52pm

I had a few years where I used O2. But it kind of backfired on me. Yeah, worked great, no side effects. Then instead of 2 CH a night I was getting 3 , then 4 or 5. The first one aborted easily. The 2nd was harder to abort. CH #4 or 5 would not respond to O2 and I'd end up snorting imitrex.

The verapamil (120 2x day) is working. But instead of taking it for 3-4 weeks and being able to stop, I'm more than three months along at this point. Plus it used to be that 80 twice a day was plenty. So I'm wondering why the threshold of CH has changed. I guess it's the nature of the beast.

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Mike NZ

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Oxygen rocks! D3 too!

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Re: CH acitivity up, Age 60, Lyme?
Reply #9 - Oct 7^th, 2013 at 2:26am

maryo wrote on Oct 6^th, 2013 at 9:52pm:

So I'm wondering why the threshold of CH has changed. I guess it's the nature of the beast.

The answer to the why question is what puzzles so many of us. What often works for several cycles will stop and what didn't work will. One dose that was effective might need to be increased or maybe it doesn't need to be as high.

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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: CH acitivity up, Age 60, Lyme? Reply #10 - Oct 9^th, 2013 at 10:29pm It's been three months for this episode. Have stopped the verapamil to see if the episode has ended and to give my bowels a chance to catch up. Hoping my Vit D levels are up. Fingers crossed. If I'm still in episode, then . . . I don't know. The longest episode I ever had was 3 months.
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