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Cluster Headache Help and Support >> Getting to Know Ya >> new to the board, but not the nightmare
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Message started by helliknowpain on Jul 27th, 2015 at 11:27pm

Title: new to the board, but not the nightmare
Post by helliknowpain on Jul 27th, 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

d3.gif (208 KB | 1 )

Title: Re: new to the board, but not the nightmare
Post by Hoppy on Jul 28th, 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

Title: Re: new to the board, but not the nightmare
Post by AussieBrian on Jul 28th, 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.

Title: Re: new to the board, but not the nightmare
Post by BarbaraD on Aug 24th, 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 :-/). 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..  :-*

Title: Re: new to the board, but not the nightmare
Post by blacklab on Aug 26th, 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

Title: Re: new to the board, but not the nightmare
Post by BarbaraD on Aug 31st, 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..  :-*

Title: Re: new to the board, but not the nightmare
Post by blacklab on Sep 3rd, 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.   ;D
It is funny how triggers change,   here's hoping anyway

regards
colin

Title: Re: new to the board, but not the nightmare
Post by BarbaraD on Sep 3rd, 2015 at 8:47am
Fingers crossed for you Colin.. if it triggers a HA.. then don't do it anymore.. Iced tea is good. :)

Title: Re: new to the board, but not the nightmare
Post by helliknowpain on Sep 3rd, 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? :(
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

Title: Re: new to the board, but not the nightmare
Post by BarbaraD on Sep 5th, 2015 at 7:56am
;D ;D ;D  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.

Title: Re: new to the board, but not the nightmare
Post by helliknowpain on Sep 7th, 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 :D
Thanks to Batch and all the info here I massively increased the D3 dosage and here I am smiling in Aug and now Sept. 8-) What a lucky break I got!!!
I was on a island with C/H until I found you guys...

Title: Re: new to the board, but not the nightmare
Post by BarbaraD on Sep 7th, 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.  :-*

Title: Re: new to the board, but not the nightmare
Post by helliknowpain on Oct 1st, 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

Title: Re: new to the board, but not the nightmare
Post by Peter510 on Oct 2nd, 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.

Title: Re: new to the board, but not the nightmare
Post by helliknowpain on Nov 4th, 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! ;)

Title: Re: new to the board, but not the nightmare
Post by helliknowpain on Nov 4th, 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.

Title: Re: new to the board, but not the nightmare
Post by Peter510 on Nov 4th, 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.

Title: Re: new to the board, but not the nightmare
Post by helliknowpain on Nov 5th, 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?

Title: Re: new to the board, but not the nightmare
Post by Batch on Nov 6th, 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...

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

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...

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

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

Title: Re: new to the board, but not the nightmare
Post by helliknowpain on Nov 12th, 2015 at 8:15pm

Batch wrote on Nov 6th, 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...

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

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...

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

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)


Title: Re: new to the board, but not the nightmare
Post by helliknowpain on Dec 26th, 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... ;)

Title: Re: new to the board, but not the nightmare
Post by MDR on Dec 26th, 2015 at 6:22pm
Tis the Season


Mark :D ;D

Title: Re: new to the board, but not the nightmare
Post by Hoppy on Dec 26th, 2015 at 10:30pm
I take mine at dinner time and wash them down with some wine  ::)

Hoppy

Title: Re: new to the board, but not the nightmare
Post by helliknowpain on Mar 5th, 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 :P

Title: Re: new to the board, but not the nightmare
Post by Batch on Mar 5th, 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

Title: Re: new to the board, but not the nightmare
Post by jendi on Mar 6th, 2016 at 9:35am
Hi All,

After 20 year remission I find myself dealing with 4-6 attacks every night.  I was diagnosed chronic back in 1995 and it seems I am heading in the same direction. Fortunately, this time around there are a few things that can help.  Oxygen has been a lifesaver! :) It also helps finding the right doctor--20 years ago I was told there is nothing I can do so I dealt with the daily pain of cluster headaches for 3 years--then they just stopped.

I have found some great information here, thanks for the site!

Title: Re: new to the board, but not the nightmare
Post by Batch on Mar 6th, 2016 at 8:56pm
Hey Jendi,

Welcome to CH.com, You've come to the right place.  We know what you're going through and the good news is it doesn't need to be that way...

As you've already discovered, there's a lot of good information here that can really help.

Check your PM InBox...  I've left you some additional information.

Take care and please keep us posted.

V/R, Batch

Title: Re: new to the board, but not the nightmare
Post by BobG on Mar 7th, 2016 at 8:52am

helliknowpain wrote on Mar 5th, 2016 at 8:11am:
I
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 :P

I've often wondered why, when God first invented us, he gave us an organ to breath through, then filled it with boogers and runny snot, then turned it upside down and stuck it in the middle of our face right over our mouth. Yuck!

Title: Re: new to the board, but not the nightmare
Post by Michael63 on Mar 10th, 2016 at 1:46pm
Hi All,
As with all here, I seem to be a newbie.  I am 63 years old and have suffered the pains for 34 years.  Mine started with my doctor telling me I had sinusitis.  Nothing he did for me took them away. It wasn't till my daughter was born in 1985 that a neurologist noticed me in the maternity department that he asked about my symptoms.  I had the typical face and eyelid droop that he noticed.  I saw him a week later and he diagnosed the chronic CH. Since that time, I have danced and iced and tried every med on the planet, but nothing seems to work.  I was in a 2 year remission and just before Christmas 2015, the beast returned. I am currently taking 50mg of sumitriptan which does give me relief in 15 to 20 minutes. There are also days when the sumitriptan does no good.  I have been reading about the D3 therapy and think that I will give it a try. My days are totally filled with fear and nights are wondering when or how bad they will be. I was experiencing mostly night time episodes, but this time I am having day time and night time episodes. I have been reading others experiences on the site and feel much better knowing that I wasn't the only one.  I have never met someone who has CH. In 1991, I went to the Headache Clinic in Chelsea Michigan. The only thing they could find abnormal was a extra "blip" in my ekg, which I explained to a cardiologist upon my return home. I will follow everyone that I can here and give my experiences as I can.  Thanks for having me.

Title: Re: new to the board, but not the nightmare
Post by Peter510 on Mar 10th, 2016 at 2:00pm
Michael,

Welcome here. You've made a great decision to post. Now make another one, and start the D3 without delay.

You will not regret it!!!

Ask loads of questions. There's a wealth of experience here.

Peter.

Title: Re: new to the board, but not the nightmare
Post by Michael63 on Mar 10th, 2016 at 2:21pm
Hello Peter,

Thanks for the welcome.  I have a few questions regarding the D3 therapy.  I was reading something that Batch had put out online and he gave a list of ingredients. Is it necessary to take the entire list or is just taking a portion a working option?

Title: Re: new to the board, but not the nightmare
Post by Peter510 on Mar 10th, 2016 at 2:36pm
Michael,

I have always taken all the cofactors recommended by Batch. The number of products you need has changed over time, so I don't know what list you are looking at. Here is the current recommendation:


image.jpeg (1083 KB | 3 )

Title: Re: new to the board, but not the nightmare
Post by Mike NZ on Mar 11th, 2016 at 2:14pm
Hi and welcome


Michael63 wrote on Mar 10th, 2016 at 1:46pm:
I am currently taking 50mg of sumitriptan which does give me relief in 15 to 20 minutes. There are also days when the sumitriptan does no good.


This sounds like you're using the tablet form of sumatriptan which takes a long time to take effect. What we've found to work much better is the injection and nasal spray versions. I'd certainly ask about these when you see your doctor as these can work in about 5 minutes which avoids a whole lot of pain.

I'd also ask about using oxygen which can similarly abort a CH in 5 or so minutes. Read up about how we use it at - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE.

Title: Re: new to the board, but not the nightmare
Post by Michael63 on Mar 11th, 2016 at 3:14pm
Thanks for the welcome MikeNZ, I have tried the O2 with only marginal relief.  I used the injections years ago, early 90s, and they worked very well. They scared me however.  I always felt as though I was "floating" soon after the injection.  The tablets work slower, but they seem to give me longer relief than the injections did. I will keep them in mind and talk to my doctor on my next appointment in early April. I was told that some people used both the injectable and the tablet in unison. Not sure of how that works.

Title: Re: new to the board, but not the nightmare
Post by Michael63 on Mar 11th, 2016 at 3:25pm
Peter510,
Do you still use the dosages that were listed in Batch's list?  If not, what do you use? I am purchasing everything tonight and plan to start as soon as I can.  Do you take them all at once or break them out over the course of a day?

Title: Re: new to the board, but not the nightmare
Post by thierry on Mar 11th, 2016 at 3:29pm
Hi Michael and welcome,
Yes use the Vit D3 and other supplements as per Batch's recommendations. He says is best to take it all together with the most fattening meal of the day. Also for the 1st month, 1 day a week take an extra 50000iu D3 on top of the 10000iu, this will bring up your D3 levels quicker.
D3 regimen works for me too, 3 years Pain free now  :)
Hopefully we'll soon read that you're PF too, the regimen works for nearly 80% of people that take it.
All the best

Title: Re: new to the board, but not the nightmare
Post by Peter510 on Mar 11th, 2016 at 3:59pm
Michael,

Use Batch's dosage for the Vit K, D3, Omega 3 and Magnesium. One Multimature tab per day covers everything else.

Also, follow Thiery's advice regarding load dosing D3 in the first month.

The objective is to get your D3 reading up to 200nmol/L as soon as possible.

It would also be wise to get you bloods done to establish your starting point.

Peter.

Title: Re: new to the board, but not the nightmare
Post by Mike NZ on Mar 11th, 2016 at 5:27pm

Michael63 wrote on Mar 11th, 2016 at 3:14pm:
I have tried the O2 with only marginal relief.


Did you use it at a high flow rate, at least 15lpm or higher and with a non-rebreather mask?


Michael63 wrote on Mar 11th, 2016 at 3:14pm:
I was told that some people used both the injectable and the tablet in unison. Not sure of how that works.


You shouldn't be using both at the same time, just one or the other.

Title: Re: new to the board, but not the nightmare
Post by Michael63 on Mar 14th, 2016 at 11:24am
Good Morning All,

Well I started the D3 therapy on Saturday. I had one of the most miserable nights imaginable.  I slept maybe 2 hours all night. Sunday morning, nothing I did would relieve the pains. After 2 hours of pacing and icing and O2, relief found me. I took the D3 and something amazing happened to me. It was as if someone had lifted something off my shoulders. The day was spent without incident. Last night had two very minor pain attacks lasting a total of 1.5 hours. I am not sure if this is the norm for people to start getting relief this soon after starting the therapy? If it is, I am all in. 

Title: Re: new to the board, but not the nightmare
Post by thierry on Mar 16th, 2016 at 1:34pm
Hi Michael, Hearing about a sufferer being pain free is always great news. becoming pain free this quickly is not something that happens a lot, but it does happen
As i said above, once a week take 50000iu D3 on top of the 10000. do that sooner rather than later and you could become nearly or completely pain free sooner. Do this for a month at least.
all the best
keep us informed of your progress.

Title: Re: new to the board, but not the nightmare
Post by helliknowpain on Mar 17th, 2016 at 6:45am

Batch wrote on Mar 5th, 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


I've stuck with the regimen, but the CH's broke through.
Interestingly, after 3 days of antibiotics the severity dropped to 2 or 3 kip, frequency from 2 or 3 daily to 1 and the duration reduced from 15 to 30 minutes to 5 minutes start to finish. After 5/6 days no pain.
I think this adds to the speculation that infection reduces the effectiveness of the regimen. 


Title: Re: new to the board, but not the nightmare
Post by helliknowpain on Mar 17th, 2016 at 6:47am

Batch wrote on Mar 5th, 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

I've stuck with the regimen, but the CH's broke through.
Interestingly, after 3 days of antibiotics the severity dropped to 2 or 3 kip, frequency from 2 or 3 daily to 1 and the duration reduced from 15 to 30 minutes to 5 minutes start to finish. After 5/6 days no pain.
I think this adds to the speculation that infection reduces the effectiveness of the regimen. 



Title: Re: new to the board, but not the nightmare
Post by Peter510 on Mar 17th, 2016 at 7:28am
Yep, without a doubt.

I experienced exactly the same the week before last, with a throat infection.

Peter.

Title: Re: new to the board, but not the nightmare
Post by Batch on Mar 18th, 2016 at 5:27pm
Helliknowpain,

It isn't so much a loss of effectiveness of this regimen due to an infection or allergy, but rather our immune systems create an increased demand for available serum vitamin D3 and 25(OH)D in response to the infection.  Accordingly what we have when an infection occurs is a classic case of supply and demand imbalance where the immune system creates a demand for vitamin D3 and 25(OH)D that exceeds the available supply...

As our immune systems take priority on the consumption of vitamin D3 and 25(OH)D... as well they should... when an infection presents, our immune systems will consume available vitamin D3 and 25(OH)D at high rates leaving insufficient concentrations of either remaining to prevent CH.

The simple solution if a cold or some other infection presents itself is to start loading vitamin D3 asap.  50,000 IU/day for a week is not unreasonable.  I also suggest taking a 1000 mg vitamin C tablet every two hours while awake for as many days as the infection symptoms are present.

Moreover, if prescribed an antibiotic for the infection, it's best to start taking a good probiotic at the same time a couple hours after taking the antibiotic and continue taking it until the bottle is empty. 

The rationale for this is simple...  Antibiotics are indiscriminate so kill off the friendly colonies of biota living in our GI tract called the microbiome...  That means these colonies need to be reseeded and replaced.  A happy gut is a healthy gut... and, as most of our immune system resides around the gut... keeping it happy is prudent.

There's an excellent video at the following link that illustrates how our immune systems work extracellular and within the cells.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Hope this rings a bell...

Take care and please keep us posted.

V/R, Batch

Title: Re: new to the board, but not the nightmare
Post by helliknowpain on May 30th, 2016 at 1:21pm
Never had a cycle like this. Basically my fall cycle never ended. Still on the d3 and stuff and as long as I stay away from alcohol I'm okay - so I can't complain. The tight feeling in my neck never really leaves, so I don't know...

Went from the life of the party to not wanting to go. The fear of a attack is keeping me grounded, boring but grounded.

Just thought I'd chime in.


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