Click this link to read a post I like on the clusterheadaches.com message board...

Tex CH.com Newbie Offline I Love CH.com! Posts: 4	New to this Forum Mar 13^th, 2017 at 4:19pm Old timer on everything else. CH for many years now, tied to the solstices. Doc told me these CHs are very primitive, coming from the cerebral cortext. Tried 02, with no luck. I keep verapimil, gabapentin, and prednisone to break the cycle, and immitrex injections for the headaches themselves. Thanks for making this forum.
Back to top	IP Logged

Click Here to visit the CH.com Facebook page!

Peter510 CH.com Alumnus Offline Don't give out... But don't give in. Posts: 966 Wexford. Ireland Gender:	Re: New to this Forum Reply #1 - Mar 13^th, 2017 at 5:33pm Welcome Tex, Sorry you have to be here but glad you are. Can you elaborate on your previous use of O2 please? Flow rate, type of mask etc. Gave you read up on the D3 Regimen ? Peter.
Back to top	You don't stop laughing because you grow old....You grow old because you stop laughing. IP Logged

Mike NZ

CH.com Hall of Famer

Offline

Oxygen rocks! D3 too!

Posts: 3785
Auckland, New Zealand
Gender: male

Re: New to this Forum
Reply #2 - Mar 13^th, 2017 at 5:51pm

Hi Tex and welcome

The hypothalamus is the part of the brain that is strongly involved during a cluster headache, as seen in current research including - Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

.

For using oxygen you need to use a non-rebreather mask and a high flow rate for it to be effective. Read up about using O2 for CH - Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

.

I'd check out how many of us are using vitamin D3 as a very effective preventive too.

Read up all you can here and ask all the questions you have.

Back to top

IP Logged

Tex

CH.com Newbie

Offline

I Love CH.com!

Posts: 4

Re: New to this Forum
Reply #3 - Mar 13^th, 2017 at 6:07pm

I don't remember the flow rate, but it was maxed to the controller thing, I forget the name. Not sure on the mask. It had 1 hose going to a cheap plastic mask.

I just was reading and saw this:

CH patients who are known heavy cigarette smokers
will eventually develop medical contraindications to
the other primary CH abortives triptans and DHE,
thus leaving oxygen as a sole abortive choice. In addition,
because prescribing information limits the use
of injectable sumatriptan to 2 doses per day due to
potential adverse reactions and 53% of survey
respondents report more than 2 CH attacks per day,6
the need exists for an abortive such as oxygen that can
be safely used for as many attacks per day as a sufferer
may have.

I have not smoked since Dec 31, 2016. My recent headache cycle began late last Friday, and I haven't had more than 2 per day. I haven't had any immitrex, so I have been doing everything else to just get through them.

Last night when I first began feeling it begin, I took 4 excedrin migraine, hopped in the shower, and stood there for about 45 minutes with the shower as hot as I could stand it, set to the vibrate massage setting, and I let it hit me between my left eyelid and my left eyebrow.

Eventually it softened enough for me to relax and go back to bed.

Back to top

IP Logged

Tex CH.com Newbie Offline I Love CH.com! Posts: 4	Re: New to this Forum Reply #4 - Mar 13^th, 2017 at 6:08pm Thank you guys for being so nice. These things make me completely nuts.
Back to top	IP Logged

Peter510

CH.com Alumnus

Offline

Don't give out... But
don't give in.

Posts: 966
Wexford. Ireland
Gender: male

Re: New to this Forum
Reply #5 - Mar 13^th, 2017 at 7:27pm

Tex,

The O2 info that Mike sent you is spot on and is the primary abortive for Cluster Headaches.

Read the second part of the following link for details on the D3 Regimen. This is an effective preventative for over 80% of those of us who use it:

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

or

Are you working with a Neurologist who specialises in Primary Headaches ?

Regards,

Peter.

Back to top

You don't stop laughing because you grow old....You grow old because you stop laughing.

IP Logged

Batch

CH.com Alumnus

Offline

Control The Beast With
O2 & D3 You Must

Posts: 3704
Bremerton, WA
Gender: male

Re: New to this Forum
Reply #6 - Mar 13^th, 2017 at 9:48pm

Howdy Tex,

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

The odds are you're vitamin D3 deficient and that deficiency is contributing to the frequency severity and duration of your CH. The simple thing to do is see your PCP for the 25(OH)D lab test. The normal reference range is 30 to 100 ng/mL... CHers who had this lab test with active bouts of CH had a mean 25(OH)D serum concentration of 22.7 ng/mL and all were below 47 ng/mL. As CHers, we need to keep our 25(OH)D serum concentration up around 80 ng/mL in order to remain CH pain free.

The simple way to do this is to start the anti-inflammatory regimen with 10,000 IU/day vitamin D3, Omega-3 fish oil, and the vitamin D3 cofactors: magnesium, zinc, boron, vitamin A (retinol) and vitamin K2

I know all this must sound like a wild ass claim... However, over 600 CHers have started vitamin D3 repletion by taking the anti-inflammatory regimen since December of 2010 and ≥80% of them have experienced a significant reduction in the frequency, severity and duration of their CH. 54% have experienced a lasting CH pain free response as long as they stay on this regimen.

Most of the CHers who respond to this regimen in the first few days to the first week frequently comment... "YGBSM! It can't be that simple! Yet, it is just that simple... Download the anti-inflammatory regimen CH preventative treatment protocol at the following link. It explains just about everything you'll need to know to start this regimen.

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

or

If you have a smart phone with a QR Code reader, scan the following QR code to download this regimen to your smart phone.

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

or

Once you get started on this regimen, oxygen therapy starts working as advertised.

Where in Texas? I flew out of NAS Chase Field, Beeville, TX for two years in the late '60s.

Take care and please keep us posted.

V/R, Batch

Back to top

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

IP Logged

Mike NZ

CH.com Hall of Famer

Offline

Oxygen rocks! D3 too!

Posts: 3785
Auckland, New Zealand
Gender: male

Re: New to this Forum
Reply #7 - Mar 14^th, 2017 at 1:02am

Tex wrote on Mar 13^th, 2017 at 6:07pm:

I don't remember the flow rate, but it was maxed to the controller thing, I forget the name. Not sure on the mask. It had 1 hose going to a cheap plastic mask.

This sounds very much like it is a rebreather mask. The non-rebreather masks have a bag.
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

And we all know what it's like having CH, we either have it ourselves or support someone with it.

Back to top

IP Logged

Tex

CH.com Newbie

Offline

I Love CH.com!

Posts: 4

Re: New to this Forum
Reply #8 - Mar 14^th, 2017 at 10:22am

Thanks for all the help and advice. I am currently 4 days into a cycle. I will call my doc today (slow work day) and check on the oxygen again. Maybe it will work this time. Mike, that mask is the same as the one I used. I tried dilligently to get it to work, sitting on the end of my bed huffing and puffing like a marathon runner, but it didn't help. I smoked then, so maybe that has changed.

Batch, I sent that list to my wife. She is off on spring break for the grandkids and will go to the store and pick it up. I live in Galveston County. I never flew (piloted), but I spent a tour in the USAF overseas in the 80s.

Back to top

IP Logged

Click Here to visit the CH.com Facebook page!

Peter510 CH.com Alumnus Offline Don't give out... But don't give in. Posts: 966 Wexford. Ireland Gender:	Re: New to this Forum Reply #9 - Mar 14^th, 2017 at 11:46am Tex, Here's the mask you need and you can buy it on this site....see the yellow tab, above left, called "CH.com store". Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or Far more efficient than the standard one. Peter.
Back to top	You don't stop laughing because you grow old....You grow old because you stop laughing. IP Logged

Batch

CH.com Alumnus

Offline

Control The Beast With
O2 & D3 You Must

Posts: 3704
Bremerton, WA
Gender: male

Re: New to this Forum
Reply #10 - Mar 14^th, 2017 at 9:55pm

Hey Tex,

Good move starting the anti-inflammatory regimen. You won't be sorry. I order the Super K at amazon.com and usually buy four of the 90 count bottles for a year's supply.

Please keep us posted... lots of lessons learned while taking this regimen. Once you're comfortable with it, get the rest of your family on it... At 50 cents a day the health benefits from taking this regimen are hard to argue. I have my entire family including seven and a half grand kids and close friends taking it.

V/R, Batch

Back to top

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

IP Logged

Multivitamin

CH.com Newbie

Offline

I Love CH.com!

Posts: 9

Re: New to this Forum
Reply #11 - Mar 18^th, 2017 at 10:04am

Mike NZ wrote on Mar 13^th, 2017 at 5:51pm:

Hi Tex and welcome

The hypothalamus is the part of the brain that is strongly involved during a cluster headache, as seen in current research including [....]
.

(Needed to delete the link as the board doesn't allow me to post external links yet as a Newbie

even if just quoted..)

Thanks for sharing - read through it but my understanding of most terms isn't advanced enough to fully understand what the significant findings are ?

Wasn't it known for a longer time already that the Hypothalamus functions play a major part ? Serious question, I would appreciate if someone can "explain like I am 5" if we can take / expect anything new out of this ?

Thanks !

Back to top

IP Logged

Mike NZ

CH.com Hall of Famer

Offline

Oxygen rocks! D3 too!

Posts: 3785
Auckland, New Zealand
Gender: male

Re: New to this Forum
Reply #12 - Mar 19^th, 2017 at 4:42pm

Multivitamin wrote on Mar 18^th, 2017 at 10:04am:

[quote author=464E45510B0 link=1489436354/2#2 date=1489441902]Wasn't it known for a longer time already that the Hypothalamus functions play a major part ? Serious question, I would appreciate if someone can "explain like I am 5" if we can take / expect anything new out of this ?

Yes, it has been known for a while that the hypothalamus has had a significant involvement in CH, but the level of detail around its involvement is increasing over time as more research is done in this area.

The research paper shows that they can detect with a 100% accuracy if the MRI is taken of a person who has CH if they are having a CH whilst the MRI is taken or not. Plus with a 100%level of accuracy to determine if the person has CH or not. So this could potentially form a diagnostic test for CH (something that we don't have at present). However this is bases on a relatively small, all male sample set, which is all too common for CH research.

It also shows in more detail what is happening in the hypothalamus during a CH. With more detailed understanding, this can assist in the understanding of CH and can help with creating / improving preventives and abortives.

CH is unlikely to be completely solved by a single piece of research work, but it is the accumulation of knowledge in this area that has the potential to incrementally improve how CH is treated and that elusive search for a cure.

Back to top

IP Logged

	Welcome, Guest. Please Login or Register
	Search box updated Dec 3, 2011... Search ch.com with Google!