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helliknowpain

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new to the board, but not the nightmare
Jul 27^th, 2015 at 11:27pm

Hi, I'm new to the board, but not the nightmare .
The one advantage I have is, when I'm going into a cycle I get the stuffy swollen feeling in the same right sinus area every time (as I have now) It gives me a heads up to avoid alcohol. In my 30 plus years of this bs I've come to realize that first alcohol induced attack (always a 9-10) throws me deep into the cycle...meaning I go from 1- 2 attacks a day (6-7's) to 2-3 daytime and 2-3 full beast mode night time attacks. Wonder why alcohol is a immediate (2-3 minute trigger) for most of us??
I also keep 2 or 3 damp towels in the freezer at all times, when IT hits I use them to rub my neck and temple it seems to help a bit, but a bit can be huge! A system of routine things I do help me to manage the time while under attack...try it, think of 10 things you will do in order that require a small effort. It gives you something to concentrate on to manage THAT time. If it's not gone start the routine over. Example - Drink two glasses of water, get frozen cloth from freezer, walk twice around backyard while messaging temples, change direction 2x while messaging back of neck, back in the house change towel for a frozen one, change the dogs water...This to me is why attacks at home are easier to manage, I need that routine!
Worst attack ever, 20 years ago on a golf course, 2nd worst, at a out of town ball tourney with my daughter, she was 10 couldn't leave her - couldn't drive anyway. I will never forget them...the pain and the panic!
But seriously, try the routine thing, rather than pacing, it gives you a little control.
Going to try and post a attachment photo of a product I use, I truly believe it lowers the severity - Magnesium and d3. Oddly enough I used it well before I read the info here on D3
ps I also message my check bone with the frozen cloth for 1 lap of the yard, you do crazy things in crazy times haha

Good luck one and all

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Hoppy

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Re: new to the board, but not the nightmare
Reply #1 - Jul 28^th, 2015 at 1:37am

Hi and welcome,
Hot and cold! Yes, some folk find having a really cold shower works for them, others a really hot shower does the trick, we are all different. I soak my head and neck in ice cubes wrapped in a cloth, when I'm out of meds, aborts an attack in 20mins. I'm now on the vitamin D regime, and been CH free for the past 2 1/2yrs.

Cheers, Hoppy

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« Last Edit: Jul 28^th, 2015 at 1:40am by Hoppy »

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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: new to the board, but not the nightmare Reply #2 - Jul 28^th, 2015 at 3:27am Routine, routine, routine. I swear by it. Thanks for passing on what works for you, hoping it might help others. That's what this place is all about, and welcome.
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BarbaraD

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Re: new to the board, but not the nightmare
Reply #3 - Aug 24^th, 2015 at 10:43am

Welcome to our little family.. and as I read your post I laughed out loud.. Sounded so "familiar"...

My worst one was at O'Hare airport during a storm with all the flights cancelled.. I was in a wheelchair (and had a cane - not good

). And some idiot offered me an aspirin (she got out of the way before the cane hit her Undecided

). But that's been years ago and I think I may can go back to O'Hare airport now..

Never thought about the frozen towels.. always kept frozen peas .. then later had to use heat (had rice bags handy to heat in the micro-wave). These things change.

Before I was diagnosed.. I couldn't figure out why I got a bad "hangover" after only a couple of sips of beer. Finally it dawned on me "You idiot quit drinking beer or you'll have a bad headache!" But it doesn't bother me now.. figure out that one.

The D3 has been great for me. I'm almost 2 years PF now since starting it. (and have been chronic since 97 so I'm doing a happy dance).

Wishing you lots of PF days and keep us informed.. Kiss

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What don't kill ya, Makes ya stronger!

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blacklab

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Re: new to the board, but not the nightmare
Reply #4 - Aug 26^th, 2015 at 3:49am

Isn't it funny Barb !
That was the very first indication that I had cluster H/A.
but the funnier thing was, that I never got my first actual attack till some 11 years later. It simply played out that I wouldn't get half way thru my first glass and I'd be hit with what I called "the icecream headache ! you know, when you drink something ice cold to quick. So 2-3 times a year this would happen and I'd have to stop the beers for 2- or 3 weeks, then it would be fine to go !
Until, my first true high Kip H/A hit me after a glass of wine, wow !!! and to be honest, I've not had a beer to this day, I probably could out of cycle, but I've not been game enough to try, and I used to love a good frothy !!!!
oh, and welcome helliknowpain.

colin

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BarbaraD

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Re: new to the board, but not the nightmare
Reply #5 - Aug 31^st, 2015 at 8:58am

BL, I went about 12(13?) years without a beer and then one day at my son's everyone was having a cold one and I just had to have one.. NOTHING happened (and I had my meds handy in case). I don't drink much beer, but it doesn't seem to bother me at all now.

In fact alcohol (and I've been chronic since 97) doesn't seem to bother me at all. Like I said.. I don't drink much, but don't think about it when I want a drink. Only RED wine and I don't like it anyhow..

It is weird how these things go.. one day this will trigger and the next - not.. Then something that's NEVER triggered it will all of a sudden pop up as a NO NO.

I quit trying to figure it out years ago.. Just enjoy the PF time.. Kiss

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blacklab

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Re: new to the board, but not the nightmare
Reply #6 - Sep 3^rd, 2015 at 1:56am

Hi Barbara,
I think this summer, I may just develop the thirst for a nice cold frothy ( beer).
I never really drank a lot before hand, but did enjoy a nice cold one every now and then, red wine, which I loved is a real trigger at almost any time.
My cycles are basically reduced to heaps of shadows for 4-5 weeks, with no more than 5-6 kip 3"s at the most, all thanks to Batches regime, with the odd single break thru one for no reason, my CH is now manageable and predictable, So I may as well try and enjoy the odd beer or two in between. Grin

It is funny how triggers change, here's hoping anyway

regards
colin

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BarbaraD CH.com Alumnus Offline Hugs to ya Posts: 8333 Douglasville, TX Gender:	Re: new to the board, but not the nightmare Reply #7 - Sep 3^rd, 2015 at 8:47am Fingers crossed for you Colin.. if it triggers a HA.. then don't do it anymore.. Iced tea is good.
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helliknowpain

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Re: new to the board, but not the nightmare
Reply #8 - Sep 3^rd, 2015 at 9:23am

Hi everyone and thanks for the welcome.
So I'm getting through this cycle fairly well, mostly shadows with a rare 3-4 kip and no sleep triggered attacks (first time ever)??? I have noticed that I am awaken suddenly a couple times a night, but no pain, like a dud attack? Sad

Although I'm not on Batch's d3 regiment I started taking big doses of D3 before I found this site and I believe it has not reduced the cycle time but has taking a lot of the sting out!!
After I posed last I remembered another epic attack...A Vegas wedding. Just got to the room and went down to the casino area to meet up with the others attending the wedding, not knowing a cycle had started I grabbed a drink, 5 minuets latter BOOM! and I'm in the room pacing alone. I was in and out of attacks all weekend.My wife, while very sympathetic was as I, sickened with the timing.
Anyway, historically, 2 months to go before I'm out of the woods. So thanks D3, wish I'd found you before.

virgin cheers everyone

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BarbaraD CH.com Alumnus Offline Hugs to ya Posts: 8333 Douglasville, TX Gender:	Re: new to the board, but not the nightmare Reply #9 - Sep 5^th, 2015 at 7:56am You should have been in Vegas back in 2000 when we had our FIRST Clusterhead Convention.. (and several since in other places) .. Got to see a LOT of CH strike at the wrong time.. But in between attacks - we all hit the casinos.. And today we can laugh about it.. Hang in there.. Glad the D3 is helping.
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helliknowpain

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Re: new to the board, but not the nightmare
Reply #10 - Sep 7^th, 2015 at 8:57am

haha, just had a visual of multiple people in the same room suffering a attack, I know not funny, but what a dumpster fire combo train wreck that would be...

And yes, after 35 years of suffering late July - November cycles D3 and Magnesium have made me a new man (this year)

Let me explain my D3 luck...last year at the tail end of a cycle I started experiencing migraines also (first time ever) I did some research on migraines, and found a lot of people had some success with magnesium, so I set out to try it. Fortunately, at the time, all the drug store had was Mag/D3 , so I went with it. I figured the D3 was just a healthy bonus! Two days later my cycle ended. Not sure if it was a coincidence, I went with it again when this years cycle started and it helped a lot!

So I investigated the combined affect of D3 and Mag and that's when I stumbled on this site Cheesy

Thanks to Batch and all the info here I massively increased the D3 dosage and here I am smiling in Aug and now Sept. Cool

What a lucky break I got!!!
I was on a island with C/H until I found you guys...

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BarbaraD CH.com Alumnus Offline Hugs to ya Posts: 8333 Douglasville, TX Gender:	Re: new to the board, but not the nightmare Reply #11 - Sep 7^th, 2015 at 11:01am that's great news... but don't forget the FISH OIL... Batch can tell you why, but it goes with the regimen.. Hope the D3 works as well for you as it has for so many of us.
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helliknowpain

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Re: new to the board, but not the nightmare
Reply #12 - Oct 1^st, 2015 at 7:51pm

Doing great so far with the D3, thanks to Batch!
But tonight I was (for a solid hour) severely reminded I AM A CLUSTER HEAD.
So ya, I'm not too happy right now...it's gone, but I got the zombie, catatonic head thing going on.
-On a good note, the super hot shower really seemed to help again.
-On a funny note, I hope my hair doesn't fall out like someone else here!...carry on

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« Last Edit: Oct 1^st, 2015 at 7:53pm by helliknowpain »

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Peter510 CH.com Alumnus Offline Don't give out... But don't give in. Posts: 966 Wexford. Ireland Gender:	Re: new to the board, but not the nightmare Reply #13 - Oct 2^nd, 2015 at 5:21am helliknowpain, Have a look at page 92 of the thread " 123 days pain free...." under medicines & treatment. There has been a good discussion on Benadryl there in the last couple of days. Your problem could be the result of a small allergy or infection that you are not aware of. Hope this helps, Peter.
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helliknowpain CH.com Junior Offline I Love CH.com! Posts: 34 Ontario, Canada Gender:	Re: new to the board, but not the nightmare Reply #14 - Nov 4^th, 2015 at 7:03am Don't want to brag folks but I've been TWO FULL WEEKS without any pain...none, zilch, zero. Me thinks, my fall cycle has ended early Yee-haw! back to my former self (for now) Thanks to everyone here for everything!
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helliknowpain CH.com Junior Offline I Love CH.com! Posts: 34 Ontario, Canada Gender:	Re: new to the board, but not the nightmare Reply #15 - Nov 4^th, 2015 at 7:08am May even try a beer (but not quite yet) to ease the burden of watching Detroit Lions football...okay it's not real football, but quite entertaining.
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Peter510 CH.com Alumnus Offline Don't give out... But don't give in. Posts: 966 Wexford. Ireland Gender:	Re: new to the board, but not the nightmare Reply #16 - Nov 4^th, 2015 at 7:56am Great news! Keep the D3 going right through the year. Not lust when you expect an episode. Long may it last. Peter.
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helliknowpain CH.com Junior Offline I Love CH.com! Posts: 34 Ontario, Canada Gender:	Re: new to the board, but not the nightmare Reply #17 - Nov 5^th, 2015 at 7:03am I've been meaning to ask, why would I continue on the regiment all year when my cycle is consistent August - November yearly? I have not been able to find any info on this. Will stopping the regiment (when I am out of my normal cycle time) bring on a attacks?
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Batch

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Re: new to the board, but not the nightmare
Reply #18 - Nov 6^th, 2015 at 1:15am

Helliknowpain,

As the guy who developed this regimen... consider the following coming from the burning bush...

Stay on this regimen year round... even if you are episodic...

You need to do this for some very good reasons...

1. Although this regimen is a very effective CH preventative... IT IS NOT A CURE.

2. If you stop taking this regimen, you'll get hit as usual when your next regularly scheduled cycle comes around and it could take weeks to rebuild your 25(OH)D serum concentration reserves back up to a therapeutic level... Needless time spent in pain... when you could skate PF through your next CH cycle if you stay on this regimen...

3. It only costs 35 cents a day and the health benefits are many. See the following link for a page titled 63 health problems prevented or treated with vitamin D3...

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

or

I've had my entire family taking this regimen for over four years and none of them have CH... The youngest of the seven grand kids, Fred, a.k.a. Winefred, is 15 months old. She's been on this regimen since conception...

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

or

The glasses are fake, but Fred thinks they make her look more important when she reads her books... Her physical growth and cognitive processes are racing ahead at Mach 2... She also speaks in both German and English...

Take care and please keep us posted.

V/R, Batch

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« Last Edit: Nov 6^th, 2015 at 1:18am 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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helliknowpain

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Re: new to the board, but not the nightmare
Reply #19 - Nov 12^th, 2015 at 8:15pm

Batch wrote on Nov 6^th, 2015 at 1:15am:

Helliknowpain,

As the guy who developed this regimen... consider the following coming from the burning bush...

Stay on this regimen year round... even if you are episodic...

You need to do this for some very good reasons...

1. Although this regimen is a very effective CH preventative... IT IS NOT A CURE.

2. If you stop taking this regimen, you'll get hit as usual when your next regularly scheduled cycle comes around and it could take weeks to rebuild your 25(OH)D serum concentration reserves back up to a therapeutic level... Needless time spent in pain... when you could skate PF through your next CH cycle if you stay on this regimen...

3. It only costs 35 cents a day and the health benefits are many. See the following link for a page titled 63 health problems prevented or treated with vitamin D3...

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

or

I've had my entire family taking this regimen for over four years and none of them have CH... The youngest of the seven grand kids, Fred, a.k.a. Winefred, is 15 months old. She's been on this regimen since conception...

i378.photobucket.com/albums/oo230/F8Driver/Fred15Months_zpsxk61z2bp.jpg

The glasses are fake, but Fred thinks they make her look more important when she reads her books... Her physical growth and cognitive processes are racing ahead at Mach 2... She also speaks in both German and English...

Take care and please keep us posted.

V/R, Batch

Thanks for the info, cant find a good reason to stop the regiment.
Also, love the glasses (chuckle)

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helliknowpain CH.com Junior Offline I Love CH.com! Posts: 34 Ontario, Canada Gender:	Re: new to the board, but not the nightmare Reply #20 - Dec 26^th, 2015 at 6:19pm Don't want to tick off people in cycle but these days I'm washing down my D3 with Brandy. Ahh, remission is glorious...
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MDR CH.com Old Timer Offline I love YaBB 1G - SP1! Posts: 265 Elysburg Pa. Gender:	Re: new to the board, but not the nightmare Reply #21 - Dec 26^th, 2015 at 6:22pm Tis the Season Mark
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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: new to the board, but not the nightmare Reply #22 - Dec 26^th, 2015 at 10:30pm I take mine at dinner time and wash them down with some wine Hoppy
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helliknowpain

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Re: new to the board, but not the nightmare
Reply #23 - Mar 5^th, 2016 at 8:11am

Well, I'm sorry to report I'm back again, with the first spring cycle I've ever had!
Thing is, I caught a terrible cold, chest and sinus and now it has turned into bronchitis. Three nights ago the beast came knocking. So, now I'm coughing nonstop, 24 hour fever and pacing with a CH once a night and 5 o'clock every morning.
I've suffered with CH for 30-35 years and never had a cycle this time of year. Wondering if it's the virus that turned bacterial or all the crap my doc's got me taking? I've been reading about antihistamine here, but really don't want to introduce another med right now. So ya, I'm not a happy guy and hate felling like a victim.

On the funnier side - imagine having a seriously runny nose
and throw the sinus flow of a cluster on top of that...what a snotty mess haha Tongue

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Batch

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Re: new to the board, but not the nightmare
Reply #24 - Mar 5^th, 2016 at 9:32am

helliknowpain,

Sorry the beast came back to haunt you... A spring cold and possibly an allergic reaction are all it takes to bring the CH beast out of hiding... Infections and allergic reactions trigger inflammation and an immune system response that suck up available serum vitamin D3 and 25(OH)D, the first metabolite rapidly. This frequently leaves too little left to prevent CH.

Accordingly, how much vitamin D3 were you taking when this bout started? Were you taking all the other co-factors?

Although the frequency of my colds have dropped significantly since I started the anti-inflammatory regimen in 2010, they still happen, but are usually short lived like 24 hours with a runny nose then nothing...

When colds do happen, I usually take a 50,000 IU loading dose of vitamin D3 then double my maintenance dose for a week. On top of that, I start taking Vitamin C, like a 1000 mg tablet every 2 hours during the day and I also start popping zinc lozenges.

Given it's too early for spring pollen in your neck of the woods, any allergens could be home grown. Mold growing somewhere in the house could be a possible culprit and it doesn't take much like a little growing in drip pan under the refrigerator.

If you do suspect an allergy, Benadryl (Diphenhydramine) can help. Diphenhydramine is a first-generation antihistamine that crosses the blood brain barrier to block H1 histamine receptors on neurons throughout the brain. Second- and third-generation antihistamines cannot do this so are not as effective for CHers.

What other medications has your doctor prescribed? If you've been given an antibiotic, you'll need to start taking a good probiotic. Antibiotics kill off friendly colonies of bacteria living in your GI tract called the microbiome and that can cause big problems.

The microbiome makes up most of our immune system so it helps to keep it happy and healthy...

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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